tag:blogger.com,1999:blog-81512100060670696092024-02-19T02:42:35.370-08:00Offering KindnessLittle doses of inspiration
to practice kindness
Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.comBlogger38125tag:blogger.com,1999:blog-8151210006067069609.post-9313648839908753872023-03-23T13:15:00.005-07:002023-03-23T13:15:46.216-07:00Blog has new home<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjTZ8WO9LanfVHlneYl55YfxC_ZzKVjvK7ylSwl0xcG0AiNFccDzcpwkj1o1GLOxxkzOD_kf-nxLekLnVh6sqNDOmhNlOT4P2l9PO4cQszb0_EFSujIdnj9mzS2YTRRtpBBQ1_Aq9aceyQEybTIguP8oX5INDtZac5AwamQbImLYSQA0ImGlOw4CeK7" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjTZ8WO9LanfVHlneYl55YfxC_ZzKVjvK7ylSwl0xcG0AiNFccDzcpwkj1o1GLOxxkzOD_kf-nxLekLnVh6sqNDOmhNlOT4P2l9PO4cQszb0_EFSujIdnj9mzS2YTRRtpBBQ1_Aq9aceyQEybTIguP8oX5INDtZac5AwamQbImLYSQA0ImGlOw4CeK7" width="320" /></a></div><br /><p></p><p>The Hummingbird Fund website is <a href="https://hummingbirdfundva.com/blog/" target="_blank">live</a>, and it is the new home for the Offering Kindness blog.</p><p>Check us out. https://hummingbirdfundva.com/blog/</p><p><br /></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-41135193499408460322023-02-26T18:50:00.002-08:002023-03-01T10:06:11.093-08:00Turbocharged LivingThis weekend I attended the kickoff for the Second Annual <a href="https://donate.dc.als.org/event/2023-ride-to-defeat-als-blue-ridge/e428203">Blue Ridge Ride to Defeat ALS</a> at the<a href="https://prnbrewery.com/"> Pro Re Nata brewery</a> in Crozet. Riders take off at 7 am on May 13th from the brewery. Three choices for distance means there will be a perfect route for all comers. Last year, Peggy and I rode the 25K route out to <a href="https://chilesfamilyorchards.com/venues/chiles-peach-orchard/">Chiles Peach Orchard</a> where they gave us free ice cream. The published fundraising goal is $150K, and, with your help, I anticipate we will exceed that. The money goes toward supporting ALS clinics and ALS families with unmet needs.<div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgR9traJZFmqp4eMQc3_fk9dYimxvrkqGMA7zaon63eVxoN8yw_bJVmyWpfRVp5g0hywCCxGN_gu8917OQrabKwWymWgWSN98yviiSVHgwvJjemBsy6tAnwBzkqYUIzAAy4anLTfeIjP8zPqc2vYpOttzv-vNBygPlcLj6PyfCDDiSvaYGSXmTeQSz9" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="600" data-original-width="663" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEgR9traJZFmqp4eMQc3_fk9dYimxvrkqGMA7zaon63eVxoN8yw_bJVmyWpfRVp5g0hywCCxGN_gu8917OQrabKwWymWgWSN98yviiSVHgwvJjemBsy6tAnwBzkqYUIzAAy4anLTfeIjP8zPqc2vYpOttzv-vNBygPlcLj6PyfCDDiSvaYGSXmTeQSz9" width="265" /></a></div><br /><div><br /></div><div>A young, enthusiastic man introduced himself to me at the kickoff, saying he is working with Steve Greer as the new co-chair for the ride. His name is Justin Rumley. He is a cyclist, and an architect who builds glass skyscrapers.</div><div><br /></div><div>Justin lost his dad to ALS, and has been committed to ALS advocacy since his dad was first diagnosed.</div><div><br /></div><div>Justin tells the story of his father's need for a device to enable the use of his feeding tube while on his own. As his dad grew weaker he could no longer hold the syringe that connects to the tube, and they could find nothing that was commercially made and affordable.</div><div><br /></div><div>So, Justin went to work in his garage to fabricate something that would make his dad's life a bit easier. He called it the "Buckwheat", because that was his dad's nickname.</div><div style="text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiW4f8VNzy0vSAFXMe9WEjS0l9unAtQRM_lWjDqN5UT9mvf0WybNCztsnR5JskNcDatLmHFd-yQOFmGGM4A-u12QvdOjz3Oka5OCl-rSgJY4o-cRzSGYnMWfWsNUsSk4acsA86EY5ThRX4dOf6LrpwT_bUBxm_Le_fIw97W3wbo3altyOohEubbWjcP" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="500" data-original-width="500" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEiW4f8VNzy0vSAFXMe9WEjS0l9unAtQRM_lWjDqN5UT9mvf0WybNCztsnR5JskNcDatLmHFd-yQOFmGGM4A-u12QvdOjz3Oka5OCl-rSgJY4o-cRzSGYnMWfWsNUsSk4acsA86EY5ThRX4dOf6LrpwT_bUBxm_Le_fIw97W3wbo3altyOohEubbWjcP" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Now Justin has a small business making <a href="https://www.feedingtubeholder.com/">Buckwheats</a> for people all over the world.</div><div class="separator" style="clear: both; text-align: left;">Justin is a fine example of our new ALS kin.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Since being diagnosed, December 2, 2021, Peggy and I have gotten to know a legion of souls like Justin. Many say it's the worst best club to be in. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Our ALS kin have inspired me to create the ALS Turbo-charged Living Scale, or ALS-TLS. Instead of measuring ALS decline like the ALS-FRS-R, this scale monitors post-traumatic growth, in 12 domains. Although the ALS-TLS originates within the ALS experience, I suspect others may find it intriguing by substituting "difficult life circumstance" for ALS. And, I firmly believe that ALS caregivers are just as likely as the people living with ALS to demonstrate growth in turbo-charged living.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">More on Turbo-charged Living, and its effects on daily function, in a later post. For now, have a look at the scale. To score the scale, elect the statement that best matches your current state in each domain, and tally the scores for a current state score.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEirgwvyR2inAge7cKr1o_0eTyPnyLG-c1FkbRTX4Id8PT2UinATojYCgV87UeHfbK0__h6eH5RD-OSJzWmVKUKZ7-6-hiOtUd3lOsClqOsYrEsrx5hVb71b3JS4ZeAbvkd8FqBQvkGouGmncpumK6EUq9HF5vfNbPe2bJZp7MwTsD_jCGm1HTMURtbx" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="856" data-original-width="706" height="651" src="https://blogger.googleusercontent.com/img/a/AVvXsEirgwvyR2inAge7cKr1o_0eTyPnyLG-c1FkbRTX4Id8PT2UinATojYCgV87UeHfbK0__h6eH5RD-OSJzWmVKUKZ7-6-hiOtUd3lOsClqOsYrEsrx5hVb71b3JS4ZeAbvkd8FqBQvkGouGmncpumK6EUq9HF5vfNbPe2bJZp7MwTsD_jCGm1HTMURtbx=w536-h651" width="536" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgKamlClzQI9Py6Xz4j24MVmM8tUkwXMsG7K-XcDxwusA8b69MOgpyTJHopFNq7j-la9eixAXB_MdtJN3xHQ1kVetDPOxUNQuMB1_OQh1_uOMAoLog8ZAtL-swD0frh70o8PFY0T3id8sQfSpuHKnxjChCfbrR_Tm6vc8ynoVEzdcqEyJ2DYLmut3Jm" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="916" data-original-width="722" height="688" src="https://blogger.googleusercontent.com/img/a/AVvXsEgKamlClzQI9Py6Xz4j24MVmM8tUkwXMsG7K-XcDxwusA8b69MOgpyTJHopFNq7j-la9eixAXB_MdtJN3xHQ1kVetDPOxUNQuMB1_OQh1_uOMAoLog8ZAtL-swD0frh70o8PFY0T3id8sQfSpuHKnxjChCfbrR_Tm6vc8ynoVEzdcqEyJ2DYLmut3Jm=w542-h688" width="542" /></a></div><br /><br /><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br /></div></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-44796429016293848242023-02-25T11:20:00.003-08:002023-04-15T14:29:23.113-07:00Traveling with Mr. ALSI don’t go anywhere these days without Mr. ALS. Not the grocery store. Not the swimming pool or locker room at the YMCA. Not even to the mailbox at the end of our driveway. Mr. ALS is like the awkward kid at summer camp who has yet to learn how to give it a rest. <div><br /></div><div>Last week, Peggy and I traveled to Southern Arizona at the invitation of dear friends, to spend some time relaxing together, and to experience first hand the complicated issues of border security and immigration reform. More on those two thorny controversies in another post. </div><div><br /></div><div>Air travel with Mr. ALS is a whole new adventure. No carry-on luggage. No sprinting for a just-in-time departure. New with this trip is a welcome ride in a wheelchair to the gate and between connecting flights. Oh, and lest we forget, once in flight, there is the long, unsteady walk down the long narrow aisle to the tiny bathroom with a folding door. </div><div><br /></div><div>Even without turbulence, every person in every aisle-seat notices Mr. ALS. I nod and smile, imagining what they might say when Mr. ALS and I are sitting squarely in their lap. </div><div><br /></div><div>And then, lucky for us, there is TSA. A supreme adventure unto itself. </div><div><br /></div><div style="text-align: center;"><span id="docs-internal-guid-d1c3a522-7fff-6d3e-d62a-1f8cd468e0d7"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="border: none; display: inline-block; height: 339px; overflow: hidden; width: 254px;"><img height="339" src="https://lh6.googleusercontent.com/pRvDxc1H8l8elVjCw70-CZzNzx8rVKWpEgmlQQvnYZx0N7URLt3pl5APj2z_cKCkK0Vq-U5lSUWBLugxqCcizn-5z4eYPIjRIJEOHCv_C9-UzUQw_rW1sJQGLHuISxdjimaVEK9ZVEN4eAQl1Z3Wr5I" style="margin-left: 0px; margin-top: 0px;" width="254" /></span></span></span></div><div><br /></div><div>Relinquish your cane. Remove your shoes without falling down. If you’ve decided to wear your AFO (brace for foot drop), it comes off too. Then we get to negotiate the slight incline into the scanner, which I’d never noticed before traveling with Mr. ALS. Once inside the scanner, we must help dear old Lefty raise a hand overhead, which requires a bit of gymnastics. Righty grabs hold of Lefty and hoists both overhead for the 5 seconds it takes to scan my insides. The exit off the incline is the last hurdle before finding a chair to reassemble the footwear. All of it deserving a round of applause. </div><div><br /></div><div>In general, TSA agents seem mystified by Mr. ALS. I interpret their universal expression as doubt. I don’t often introduce Mr. ALS, which perhaps is rude of me, but based on their quizzicality, and everything else I need to do, so as not to fall down, I have chosen to let that opportunity pass by. </div><div><br /></div><div>Last week, a TSA agent at a busy, metropolitan airport tainted the TSA adventure of with a fetid twist of meanness unseen before, beginning at her scanner.
Peggy had already helped me to get un-shoed, with cane, shoes, backpack, and vest on the belt. (There are no chairs on the entry side of the scanner.) The TSA officer barked orders like a grim-faced Victorian school marm: </div><div><br /></div><div><ul style="text-align: left;"><li> “Step forward!” I shuffle forward over the lip, into the scanner.</li></ul><ul style="text-align: left;"><li>“Get into the scanner and put your feet in position,” pointing at the yellow footprints spread apart. I adjust my feet, carefully. </li></ul><ul style="text-align: left;"><li> “Raise your hands over your head.” </li></ul><br />The agent’s bark must have rattled Righty, because there was no time for the usual gymnastics to help Lefty, who, upon command, barely made it shoulder high. </div><div><br /></div><div>This is when the barking turned into shouting which felt like screaming. </div><div><br /></div><div>“He can’t raise his arm,” she shouted, over and over, “He can’t raise his arm,” signaling to the other agents that assistance was needed. </div><div><br /></div><div>Then, shouting at me, she continued her tirade: “Get out of the scanner.” “Move.” “Get back out of the scanner!” </div><div><br /></div><div>Even as I shuffled out of her scanner, she continued to yell at me, now adding a humiliating shushing-wave of her hand. “Step aside. Stand to the side.” I quietly obeyed. </div><div><br /></div><div>As the others behind me marched forward, I felt their sympathy. Notably, no one said a word. </div><div><br /></div><div>I stood to the side with Peggy who steadied me until a tall, cheerful agent took charge. He spoke calmly, and quietly. He offered me his hand as I returned to the scanner. He smiled, and gently peppered his instructions with phrases like, “ You’re good, boss.” “Take your time boss.” “ Here, have a seat boss.” What a difference. </div><div><br /></div><div>While Mr Smiles was assisting me, Ms. Barking Agent resumed her station at the scanner. Peggy was next in line! </div><div><br /></div><div>I looked back in time to see Peggy lean into Ms. Agent’s face with a stern comment or two. While Peggy’s voice was low and forceful, Ms. Agent shrieked something incomprehensible. </div><div><br /></div><div>“What did she say,” I asked as we re-united along the conveyor belt. </div><div><br /></div><div>“I told her the shouting was uncalled for, that you had ALS, and that a little kindness would be helpful.” </div><div><br /></div><div>“And she said…” I asked. </div><div><br /></div><div>She said, “I don’t feel like being kind today!’” </div><div><br /></div><div>This outlandish statement, and the behavior that preceded it, are examples of anti-kindness. They are unkind actions that prevent or inhibit kindness. </div><div><br /></div><div>Once we recovered from the effects of anti-kindness, and recounted the practical kindness of Mr. Smiles, Peggy and I wondered what might have motivated the anti-kindness in Ms. Agent. </div><div><ul style="text-align: left;"><li>Maybe Ms. Agent eschews kindness, because she equates kindness with being sweet, and she perceives her job as being tart. </li></ul><ul style="text-align: left;"><li>Maybe Ms. Agent has never experienced kindness, and therefore has no reference for how to be kind.</li></ul><ul style="text-align: left;"><li>Maybe Ms. Agent is scared of making a mistake or being thought of as weak. </li></ul><ul style="text-align: left;"><li>Maybe Ms. Agent has learned to yell at people to get things done her way. </li></ul><div style="text-align: center;"><span id="docs-internal-guid-d33f771e-7fff-4576-4ee5-62c6f8238dd2"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="border: none; display: inline-block; height: 496px; overflow: hidden; width: 624px;"><img height="832.3105367288111" src="https://lh6.googleusercontent.com/Lb-75ZS0zKGcMtqjJRvOmjUQzhXVnmZovI5_xk5jYwWLGZbJ1TFmYgreNHiZr7U72I9WZcR6nIIAXsc8i_0tGgt4rMWLjHIIgL8M-6xAbOQWavk_sL616hOuD0e5BKcvy1AvCXwDLzj_NEimSEj0aNw" style="margin-left: 0px; margin-top: 0px;" width="624" /></span></span></span></div><div style="text-align: center;"><br /></div>By the time we had reached our dear friends, and moved through the anger, humiliation, and disbelief, Peggy and I began to feel sad for Ms. Agent. Just like a shallow, scowling school marm, Ms. Agent’s anti-kindness envisaged a miserable life. </div><div><br /></div><div>Poor Ms. Agent. Nevertheless, the next time I encounter anti-kindness at TSA, I’ll use this <a href="https://www.tsa.gov/contact-center/form/complaints">TSA FORM</a>. And, the next time kindness descends into anti-kindness, I’ll be using this <a href="https://www.tsa.gov/contact-center/form/compliment">TSA FORM</a>. </div><div><br /></div><div>I have heard the horror stories of others who travel with disabilities. </div><div><ul style="text-align: left;"><li>Lost and broken wheelchairs. </li><li>Refused boarding because you must present yourself in a wheelchair long before able bodied passengers, if you hope to have your wheelchair on the flight. </li><li>No wheelchair waiting at the connecting gate, as promised</li><li>Fellow passengers maligning someone who moves slowly or has slurred speech.</li><li>Think about it. How does anyone with a wobbly gait or the inability to walk get to a toilet on an airplane? </li><li>And, why do trains and subways, city buses, and even the trams between airport terminals have wheelchair and handicapped seating, while the entire airline industry has gotten away with not offering these accommodations?
</li></ul>Frankly, I don’t think it should be necessary for those of us traveling with a disability, like Mr. ALS, to announce and explain our unfortunate circumstance to merit a bit of practical kindness that affords us inclusion and participation in the ordinary inconvenience of present day travel.</div><div><br /></div><div style="text-align: center;"><span id="docs-internal-guid-42242eaf-7fff-01d9-ad00-f5891c9d4022"><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="border: none; display: inline-block; height: 306px; overflow: hidden; width: 474px;"><img height="306" src="https://lh3.googleusercontent.com/jZ4L5fW3AOZLoRmjtHS-h_ISAwGwVxUBM1n4Y9vMOC1YZ8PRg4efVNHIYrf7vp_302T9353v0WXh6obxWDJ3uj7gMlxW3Lv77JGhzyUAmizRyzv1MmUY4AyDPKWPzE5xNgOvdDim1d0_1OxPKIMJrCU" style="margin-left: 0px; margin-top: 0px;" width="474" /></span></span></span></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-89784805190251318342022-12-15T16:17:00.004-08:002022-12-15T16:17:57.861-08:00Advent angels<p>The liturgical season of Advent has long been my favorite time of the church year. As a child I enjoyed the urgency and drama of Mary and Joseph needing a place to have their baby, and ending up in a stable. Of course, I didn't meet my first lamb or cow until I was 22, living on a 16th century farm in Cornwall, England. So, my bucolic, childhood visions of a manger did not include mud or manure. I saw my first baby born at a teaching hospital in the Bronx, and there were no mammals other than those in scrubs with masks and gloves. I did deliver a footling breech baby in a thatched hut in rural Guatemala, which actually exceeded the drama and urgency of anything I might have imagined as a youngster during the 1950s and 60s in the steel town of Lorain, Ohio. All of this aside, it has always been the mystery, the awe, and wonder that has captivated my imagination during Advent.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiyinQDJCO0dQK9rvtoJW_1es_gZQO-7qLx-FPSDMTP4tttvslxqVnB0MkXy8UFIHF1T8by2-LzOVBcWeIBdGC-fSsY_oEMiKr75AA2lmjcwAUvlE33dJ3-RIgrnKU_YLioEu_y8V2Nw7DCB8FvCfpz9M6GXUWrmJaYBdreBGEP3hM-yW8PKiuyr91L" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="676" data-original-width="900" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEiyinQDJCO0dQK9rvtoJW_1es_gZQO-7qLx-FPSDMTP4tttvslxqVnB0MkXy8UFIHF1T8by2-LzOVBcWeIBdGC-fSsY_oEMiKr75AA2lmjcwAUvlE33dJ3-RIgrnKU_YLioEu_y8V2Nw7DCB8FvCfpz9M6GXUWrmJaYBdreBGEP3hM-yW8PKiuyr91L" width="320" /></a></div><br /><p>Angels may be my favorite part of Advent. The Christmas story always includes angels that mysteriously appear in the night, gently conveying God's eternal message: "Fear not." </p><p>I'd like to experience an angel someday... a real, true angel. I wonder... What will it be like? </p><p></p><ul style="text-align: left;"><li>A warm Light in a deep darkness? </li><li>A heralding of exquisite music that draws me into a pure and ecstatic haze of Bliss? </li><li>A palpable Presence of Love that floods my being with awe? </li></ul><p></p><p style="text-align: center;">"Fear Not. I am with you."</p><p style="text-align: left;">Advent is also known as the season of expectant waiting, which is wholly (holy) ironic, because I am no good at waiting. My cane now grants me priority boarding, and I am all too happy to prance forth ahead of the crowd to take my seat in steerage.</p><p style="text-align: left;">If I dare to probe deeper, the expectant waiting of Advent offers an annual opportunity to remember the hope of a transformative love, born into a world that relegates unwed, teenage mothers, like Mary, to the sidelines of every society. </p><p style="text-align: left;">In my view, newborn babies are inherently holy beings. This changes, of course, when they refuse to sleep, and when they cry with no apparent rationale.</p><p style="text-align: left;">A fresh, healthy, pink, full-term newborn who is ready to nurse and be comforted in a parent's arms is a pediatrician's dream come true, and one of the most sacred moments to witness, no matter the venue. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgW1hEPIaLu2nfMhM2h9OaNuXqD8upVEParb8Y1fm7IBdM6TW-kVQPMd6NigMfgzPfgPznWT9WVCcNAZaAT0umO5Fepg9yG-55gptX8OiphQF2ZMNU7wf9eq-RUjr98zdKkTZbdFxSxAVVeEhvSx1jjD86RVCYWGp0Eeh_8BFePAOzDntJ66cULkcDv" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="300" data-original-width="300" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEgW1hEPIaLu2nfMhM2h9OaNuXqD8upVEParb8Y1fm7IBdM6TW-kVQPMd6NigMfgzPfgPznWT9WVCcNAZaAT0umO5Fepg9yG-55gptX8OiphQF2ZMNU7wf9eq-RUjr98zdKkTZbdFxSxAVVeEhvSx1jjD86RVCYWGp0Eeh_8BFePAOzDntJ66cULkcDv" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="background-color: white; color: #444444; font-family: arial; font-size: 12px; text-align: left;">Virgin Mary and Child by the painter Andrea Solario. </span></div><div class="separator" style="clear: both; text-align: center;"><span style="background-color: white; color: #444444; font-family: arial; font-size: 12px; text-align: left;">Our Lady of Milk and Good Birth.</span><span style="background-color: white; color: #444444; font-family: arial; font-size: 12px; text-align: left;">circa 1500</span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><p style="text-align: left;">This Advent I am savoring the season of hope. I am turning my attention toward palpable love, and glorious music. I am seeking out opportunities to see light brought into the darkness, or a deep darkness brought out into the light. I am expecting hope to surprise and delight me. I'm on the lookout for angels.</p><p style="text-align: center;">"Fear not. I am with you always."</p><p style="text-align: left;"></p><ul style="text-align: left;"><li><a href="https://www.npr.org/2022/12/15/1142982960/us-sues-arizona-shipping-containers-mexico-border">us-sues-arizona-shipping-containers-mexico-border</a></li><li><a href="https://www.youtube.com/watch?v=TKBkx3gJ41Q">Dr. Rick Bedlack discusses clinical trial on ALS reversal</a></li><li><a href="https://www.spmcuva.org/">St Paul's Memorial Church Christmas Eve services</a></li></ul><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGcSQUXOCZfX7g6BIwk-6qJesApEUElzW0ZHw5fxyxKSz82VWHUrxAIGscU_ieHTlf1vxIUNt6QfuwOgpel8BJsP31MYyK_GcGLBzyfUiqFcMymmG2NTmAe_vB9u6LY9yENCw0S9Eoj1CustHqyicW6MIg6oCh6zCx7F8aEB0BKZza3aune_-YDzwL/s800/heart%20rock.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="800" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGcSQUXOCZfX7g6BIwk-6qJesApEUElzW0ZHw5fxyxKSz82VWHUrxAIGscU_ieHTlf1vxIUNt6QfuwOgpel8BJsP31MYyK_GcGLBzyfUiqFcMymmG2NTmAe_vB9u6LY9yENCw0S9Eoj1CustHqyicW6MIg6oCh6zCx7F8aEB0BKZza3aune_-YDzwL/s320/heart%20rock.heic" width="320" /></a></div><br /><p style="text-align: left;"><br /></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><br /></div><p style="text-align: left;"><br /></p><p style="text-align: left;"><br /></p><p> </p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-67858312441135204342022-10-19T13:02:00.003-07:002022-11-21T15:08:09.575-08:00Adapting<p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt0O0mqvg5WERLXyFjIBq34wm_6dbjAkk6YmL4P4Bqgl86VVVDKRLi76vLMhzolepApwF3Dm4JXEC7tUkFhVcGZYkSNNew1tRAhbA2d2_VZAYubV9uaPfkXoRHu8CnUz_L3E32K6P1THs-pg8HBn2HIO10adwNYJRTiDnsEpHD7pg4gvhjSCrO7IhH/s4032/cane.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgt0O0mqvg5WERLXyFjIBq34wm_6dbjAkk6YmL4P4Bqgl86VVVDKRLi76vLMhzolepApwF3Dm4JXEC7tUkFhVcGZYkSNNew1tRAhbA2d2_VZAYubV9uaPfkXoRHu8CnUz_L3E32K6P1THs-pg8HBn2HIO10adwNYJRTiDnsEpHD7pg4gvhjSCrO7IhH/s320/cane.heic" width="240" /></a></div><br /><p>Have you ever stumbled on a wooded path in autumn? The brightly colored leaves begin to obscure the well-worn trail, and the abundant acorns act like mini-rollers underfoot, making conditions ripe for an awkward misstep.</p><p>I went down today; tumbled right off the path. The fall came as a complete surprise. I was using my new, high-tech walking stick. I was walking slowly with Delta leading the way along a path we have traversed almost daily for more than 20 years. My left foot caught the edge of a small twig poking up from the leaves, and I stumbled without the reflexes to autocorrect.</p><p>I fell in slow motion. As I rolled downhill into the underbrush, I actually had plenty of time to hear Peggy gasp behind me. </p><p>Ordinarily we can chuckle about these gaffs. Today, it scared us, because the fall came out of the blue. The good news is that I landed fine, even though I launched off the trail in an uncontrolled free-fall. </p><p>Once Peggy got me righted, our hike continued without further surprises, but the mood had changed. The sunset seemed more solemn.</p><p>Life with ALS brings constant change. Like parenthood in its earliest stages, ALS presents new challenges almost daily. Just when you have almost mastered the last skill or adaptation, there is a new one at your threshold.</p><p>This past month has brought a whirlwind of adaptation to the Plews-Ogan household.</p><p>I no longer carry anything that requires the strength of two arms. (The lamb stew careening across the kitchen floor ended that, much to Delta's delight.) I need to rest between activities that require effort, like watering the garden. I routinely use a walking stick outside, and I pace myself throughout the day. It's best if I type in bursts of 20-30 minutes. And, we have started major home renovations to create a handicapped accessible bathroom and bedroom on the first floor.</p><p style="text-align: left;">Gratefully, the Hummingbird Fund also presents new challenges and opportunities: <br /></p><ul style="text-align: left;"><li>We will soon award our first grant to expand access for modular ramps to families facing this necessary transition for wheelchair access. </li><li>We are entering exciting partnerships with local, regional, and national ALS organizations to advance research and advocacy. </li><li>This blog, <i>Offering Kindness,</i> and the Fund's social media accounts have brought many newly diagnosed folks and their families to us for advice and council on integrating ALS into their lives.</li></ul><div>As Peggy and I endeavor to integrate ALS into our own lives, we continue to be buoyed and inspired by the love of family, friends, and the ALS community.</div><div><br /></div><div>I'll leave you with this choral work by René Clausen performed recently by our church choir. The choir at St. Paul's Memorial Episcopal Church continues to be at the center of our community of love.</div><p></p><p style="text-align: center;"><u><span style="font-size: medium;">Set Me As A Seal</span></u></p><p style="text-align: center;">(by René Clausen, from Song of Solomon}</p><p style="text-align: center;"><i style="text-align: left;">Set me as a seal upon your heart</i></p><p style="text-align: center;"><i style="text-align: left;">As a seal upon your arm</i></p><p style="text-align: center;"><i style="text-align: left;">For love is strong as death.</i></p><p style="text-align: center;"><i style="text-align: left;">Many waters<span> cannot quench love</span></i></p><p style="text-align: center;"><i style="text-align: left;"><span>Neither can the floods drown it.</span></i></p><p style="text-align: center;"><i style="text-align: left;"><span>Set me as a seal upon your heart</span></i></p><p style="text-align: center;"><i style="text-align: left;"><span>As a seal upon your arm</span></i></p><p style="text-align: center;"><i style="text-align: left;"><span>For love is strong as death.</span></i></p><p style="text-align: center;"><i style="text-align: left;"><span><a href="https://www.youtube.com/watch?v=_RCq25tQbWc">Listen to St. Paul's Memorial Church Choir</a><br /></span></i></p><p style="text-align: center;"><i style="text-align: left;">(minutes 25-28)</i></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><p style="text-align: left;"> </p></blockquote></blockquote></blockquote><p> </p><p> </p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-15791524917701540432022-09-26T13:29:00.000-07:002022-09-26T13:29:56.150-07:00Dancing trees<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc9sS8fweQuJPaUDL8-scR2zUySJ4piH8-_zxT1Uw0ykm7RxM4yAycDjJ3J3aXQ5Ny2t6tXXisHO5HyvSiClma5-vEJNJ7qdMpbH7m84Bu4L5ZOwqsFqhmNDyvkzPHEKgZYjd-LrayVChy1IQC2-B8ih3OaNDr4j3FKVj-aFqp_jwmUzLnbUnLtNca/s3569/94A2387B-D8E1-4620-98A2-32FFE446183B_1_201_a.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3569" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc9sS8fweQuJPaUDL8-scR2zUySJ4piH8-_zxT1Uw0ykm7RxM4yAycDjJ3J3aXQ5Ny2t6tXXisHO5HyvSiClma5-vEJNJ7qdMpbH7m84Bu4L5ZOwqsFqhmNDyvkzPHEKgZYjd-LrayVChy1IQC2-B8ih3OaNDr4j3FKVj-aFqp_jwmUzLnbUnLtNca/s320/94A2387B-D8E1-4620-98A2-32FFE446183B_1_201_a.heic" width="271" /></a></div><br />I look forward to my daily morning contemplation. A cup of coffee in a favorite mug. DeltaMae at my feet. And a sweet bit of time to embody stillness, silence, solitude, and an open heart I call space. <p></p><p>Each morning's experience is unique. Many mornings bring gifts of insight or peace, or wholeness. Other mornings offer an unadorned groundedness to begin the day. Today I was reminded that every reality manifests an opportunity.</p><p>Stillness is my current challenge to harmony in contemplation. The fasciculations of Mr. ALS impose themselves--<i>insinuate themselves</i>-- rather rudely into the experience of stillness. </p><p>I am faced squarely with the opportunity to welcome pesky muscle twitching into the morning's contemplation. Thank you Mr. ALS for the gauche interruption of bliss.</p><p>Alas, here is another stark reminder that the realities of our daily lives are meant to be lived too. Gauche or not.</p><p>I don't enjoy the constant fasciculations that herald the death of motor neurons. Maybe one day I will miss them, but not today, not now. </p><p>Slowly, ever so slowly, I am adapting to their gauche presence. Accepting them with poise remains a significant on-going challenge. </p><p>Alas, another stark reminder: seeing God in everything and everyone means seeing God in the gauche. Ultimately, it even means welcoming God in the gauche.</p><p>Gratefully, this morning I looked up to see the sun spotlighting the tree tops which had just begun to sway, in a breeze that was theirs alone-- a gift of their morning contemplation, and a welcome reminder that God exists to be enjoyed.</p><p><br /></p><p><br /></p><p><br /></p><p><br /></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-82573802620417219992022-09-19T07:40:00.021-07:002023-02-01T15:50:31.529-08:00Sacred questions<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibmMyN1I57xP3vHzF60Etn-xqk_2_17TU7zXyDnkQZOGS4enlSnURzlRl_bbKgYTapoqJn9Yv4oiLMZpx9HUKKDDacV9exqc_dc3Cf_RRUPWCOqUFnnoXGzajvYOXQk1n7VQR8i1ZnyalfZ-Pj_LGTtX_UPpEx4h5mJCD0qC1DnXbnQx-9I-YnIJH4/s4032/0407A943-DC6D-49E5-8857-062A813C9D3C_1_201_a.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibmMyN1I57xP3vHzF60Etn-xqk_2_17TU7zXyDnkQZOGS4enlSnURzlRl_bbKgYTapoqJn9Yv4oiLMZpx9HUKKDDacV9exqc_dc3Cf_RRUPWCOqUFnnoXGzajvYOXQk1n7VQR8i1ZnyalfZ-Pj_LGTtX_UPpEx4h5mJCD0qC1DnXbnQx-9I-YnIJH4/s320/0407A943-DC6D-49E5-8857-062A813C9D3C_1_201_a.heic" width="240" /></a></div><br />Recently I took part in a <a href="https://iamals.org/action/request-a-panel/">Tim Lowry ALS</a> panel for occupational therapy (OT) students. As panelists we answered many of the questions you might anticipate about how OT has improved our lives with ALS. I was happy to tell the students about pencil grips, rocker knives, and splints. The OT professor specialized in hand therapy and was eager to help with my current conundrum: buttering toast. <p></p><p>The question that most surprised me was directed to Tim Lowry who communicates via eye-gaze technologies.</p><p></p><i><div style="text-align: center;"><i><b>"How do you prevent giving up when there is limited treatment and no cure for ALS?"</b></i></div></i><div><br /></div><div>Fair enough. We tell the audience that we are an open book. Ask us anything. Still, it's not a question in the same league as how to butter toast. <div><br /></div><div>Youthful students, given permission to be truly curious, will expose the elephant in the room.</div><div><b><br /></b><div><div style="text-align: center;"><i><b>"How do you face existential challenges, for real, in the day-to-day?"</b></i></div><div style="text-align: center;"><i><br /></i></div><span face="Arial, sans-serif"><div>Tim's poised response revealed the intentionality of a reflective life. He has learned to nurture his mental and spiritual well-being to support the consequences of his on-going physical decline.</div><div><br /></div><div>ALS poses its unique challenges to be sure. Our motor neurons are dying, and it turns out that we really need healthy motor neurons to get dressed in the morning.</div><div><br /></div><div>One option, I suppose, would have been to answer the youthful questions with a question: "How do <u>you</u> face the existential? How do you keep from giving up?" Life is chock-a-block full of existential opportunity: our present climate crisis, raging gun deaths, a loved-one's eating disorder, a recurrent major depression, a father with ALS. How do any of us live with uncertainty and ambiguity in our lives?</div><div><br /></div><div>I wonder, now that I have ALS, am I meant to understand more about managing existential crises? I mean, I have stuff to do. I have a garden to weed and water. I have a Tim Lowry panel to prepare for. I have asparagus to blanch for lunch with Zach and Isabelle.</div><div><br /></div><div>Here's one thought. What if we allowed our present reality to become sacred? Fighting for climate justice and gun safety. Being with a friend who is struggling. Learning to put your socks on with one hand. Blanching asparagus. Living with ALS. What if we approached all of it with reverence for the moment at hand? </div><div><br /></div></span></div><div><br /><span style="background-color: white;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_hrjxBeOPxziYWzYdmXwVwqV0PBkTg322tFEhXqseWBtJqMLGOSvk7jIpsdqSynf0pq_DDaPPelbKhUfA7ue1tVxc4uAkm_aWEq2mtIyRQe_Oa1kMhnOodEnGEiS3DkJeofEpJwIUDm6EdE4wGTJ351PsaLUE6kx4hToQ_7Ovy3I5kX6CzdTz4zmI/s816/Thanksgiving%20Day%202012%20at%20Homeboy%20Industries%20copy.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="612" data-original-width="816" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_hrjxBeOPxziYWzYdmXwVwqV0PBkTg322tFEhXqseWBtJqMLGOSvk7jIpsdqSynf0pq_DDaPPelbKhUfA7ue1tVxc4uAkm_aWEq2mtIyRQe_Oa1kMhnOodEnGEiS3DkJeofEpJwIUDm6EdE4wGTJ351PsaLUE6kx4hToQ_7Ovy3I5kX6CzdTz4zmI/s320/Thanksgiving%20Day%202012%20at%20Homeboy%20Industries%20copy.jpeg" width="320" /></a></div></span><br />Fr. Gregory Boyle, S.J., the founder of <a href="https://homeboyindustries.org/our-story/father-greg/">Homeboy Industries</a>, and author of <a href="https://www.goodreads.com/en/book/show/56898132-the-whole-language">The Whole Language</a><u>,</u> puts it this way:<br /><br />"We remember the sacred by our reverence...This is the esteem we extend to the reality revealed to us. Jesus didn't abandon his reality, he lived it. He ran away from nothing and sought some wise path through everything. He engaged in it all with acceptance. He had an eye out always for cherishing reality. A homie, Leo, wrote me: 'I'm going to trust God's constancy of love to hover over my crazy ass. I'm fervent in my efforts to cultivate holy desires.' This is how we find this other kind of stride and joyful engagement in our cherished reality. The holy rests in every single thing. Yes, it hovers, over our crazy asses."<br /><br /><br /><br /><br /></div><br /></div></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-77218241200138442532022-09-06T16:33:00.000-07:002022-09-06T16:33:08.481-07:00Holy tears<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmDAdhO7ztHbgr5rn9JIMdj9LAsIEsfqOH4ponAIdki-F-nT4VPY3AF2ssqv-ph0_ners9bIaxXPIwXPCefAaRNcXgFq3nZH4QhPv1gwFWCmJy8c2iAK9DQqFv31TRath1anE-xVT1mRwwmaYwoVJtP-Tba9r9PdncZhfbkSFMjUGTqeSZkkSRjp13/s4032/031BBB48-1AC4-4F4E-9E24-CAC882D1AB56.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="304" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmDAdhO7ztHbgr5rn9JIMdj9LAsIEsfqOH4ponAIdki-F-nT4VPY3AF2ssqv-ph0_ners9bIaxXPIwXPCefAaRNcXgFq3nZH4QhPv1gwFWCmJy8c2iAK9DQqFv31TRath1anE-xVT1mRwwmaYwoVJtP-Tba9r9PdncZhfbkSFMjUGTqeSZkkSRjp13/w405-h304/031BBB48-1AC4-4F4E-9E24-CAC882D1AB56.jpeg" width="405" /></a></div><br /><p></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">Tender</p></blockquote></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">soothing rain</p></blockquote></blockquote></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">all night last night</p></blockquote></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">lingers unto morning</p></blockquote></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">like sweet tears</p></blockquote></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">to begin this day anew</p></blockquote></blockquote></blockquote><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;">and whole.</p></blockquote></blockquote></blockquote></blockquote><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;">I did not grow up in a culture of sweet tears, the kind that flow gently down the cheek, as plainly and innocently as a smirk might linger while contemplating someone's clever retort. In truth, I learned to withhold smirks and tears at all cost, until I became a dad.</p><p style="text-align: justify;">Dad tears are sweet tears. Dad tears are Holy Tears.</p><p style="text-align: justify;">I rarely withhold tears anymore.</p><p style="text-align: justify;">Last week I found myself in Howard Goodkin's office with Peggy and William. Howard is the chair of neurology at the University of Virginia. He is also a child neurologist with whom I have shared many complicated patients. Howard invited us to join him and the leaders of the ALS Dart Center of Excellence to explore the possibility of a partnership with the Hummingbird Fund.</p><p style="text-align: justify;">It is worth mentioning here that Howard is also the person I emailed when Peggy and I first seriously suspected a diagnosis of ALS. We were lost, adrift, so I emailed Howard. He called my cell before I could get up from the computer.</p><p style="text-align: justify;">A couple of months later, at the Hummingbird launch, Howard joined a dozen colleagues, friends and family as a docent, mingling with guests, wearing his docent's badge that read, "ASK ME ANYTHING." He was terrific.</p><p style="text-align: justify;">All of this history sat silently in the back of my mind as I calmly entered Howard's office and took a seat at the familiar, long oak table, much like I had done many times before while working at UVA.</p><p style="text-align: justify;">We began with introductions and roles, going around the table, ending with me.</p><p style="text-align: justify;">As I began to recount my diagnosis, and the journey which has led to the Hummingbird Fund, tears began to roll down my cheeks. I was surprised by the tears, and I smiled at Howard who was sitting at the other end of the table. I said, "Well Howard, this is the first time I've <u>cried</u> in your office."</p><p style="text-align: justify;">Everyone chuckled quietly, and without missing a beat, Howard said, "Well Jim, it's not the first time someone has cried in this office. Many people have cried in this office, including me."</p><p style="text-align: justify;">More soft chuckling... followed by a brief, intimate silence... followed by me having a moment to regain my grounding as a man with ALS, in a room full of people who know Mr. ALS all too well. The group moved on through our agenda, and we will have a meaningful partnership.</p><p style="text-align: justify;">I am learning that tears and ALS are pretty much kissing cousins. Fury, deep disappointment, grief, and heartbreak. This community also weeps for the fearlessness, dignity, and brazen honesty of our kin. The road forward is a road through tears. Holy tears of love and courage.</p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p style="text-align: justify;"></p></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote></blockquote>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-41472829020418450352022-09-02T11:48:00.008-07:002023-02-07T08:58:06.993-08:00ALSTLS<p>ALS is always a grim tale to tell, and to hear. Sorry. </p><p>What if we could tell a parallel ALS tale that was the opposite of grim? I have an idea. Read on.</p><p>ALS, Amyotrophic Lateral Sclerosis, is generally defined as a progressive, neurodegenerative illness with no cure. Often, this straightforward definition is embellished with a clause or two: </p><p></p><ul style="text-align: left;"><li>eventually leading to the inability to walk, talk, swallow, or breath. </li><li>including complete paralysis with intact cognition.</li><li>being 100% fatal with an average life expectancy of 2-5 years. </li></ul><div>ALS is commonly referred to as a brutal disease; the disease most feared by doctors.</div><div><br /></div><div>As I mentioned, it's a grim tale. Sorry, again. </div><div><br /></div><div>Did you know that the functional decline that accompanies ALS is scored as a way of tracking the progression of the illness? There is a 12-item functional rating scale called the ALSFRS-R: 48 points = A+ = no disability.</div><div>See details <a href="https://neurotoolkit.com/alsfrs-r/">here</a>.</div><div><ul style="text-align: left;"><li>Speech</li><li>Salivation</li><li>Swallowing</li><li>Handwriting</li><li>Using utensils</li><li>Dressing and hygiene</li><li>Turning in Bed</li><li>Walking</li><li>Climbing stairs</li><li>Dyspnea (breathing hard with activity)</li><li>Orthopnea (difficulty breathing while lying down)</li><li>Respiratory insufficiency</li></ul></div><div><br /></div><div>I am currently a 43 or 44. I was a 41 or 42, until I taught Righty to use a pen. Honestly, I could probably be a solid 44, if I used a rocker-knife. After all, if we can enhance or adapt function to increase inclusion and participation, we diminish the disability.</div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgjJVXGoEyreCTkL1QmPtzKGKTJA2-NawGON-NNCxBReQGG48hvhJnwy2CIgMBq0F9dPD71Pz3AjKi2TGZ7xvZ9U5-xORA3SODD_l9zMm-SwW0Qev7_pyxt9AALPbd2cfZX_31u-otpRmr3ggmXx2sdXHry-fdazw-rKrbcQ3FaCRP_ZksT2n6m_ktz" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="470" data-original-width="470" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEgjJVXGoEyreCTkL1QmPtzKGKTJA2-NawGON-NNCxBReQGG48hvhJnwy2CIgMBq0F9dPD71Pz3AjKi2TGZ7xvZ9U5-xORA3SODD_l9zMm-SwW0Qev7_pyxt9AALPbd2cfZX_31u-otpRmr3ggmXx2sdXHry-fdazw-rKrbcQ3FaCRP_ZksT2n6m_ktz" width="240" /></a></div><div class="separator" style="clear: both; text-align: left;">It is worth noting here that Mr. ALS's march toward disability does <u>not </u>necessarily include mental, emotional, or spiritual decline. ALS causes motor nerves and muscles to die. The thinking-mind remains completely intact. Spirit, drive, passion, motivation, personality, the ability to give and receive love, all remain in full force.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Let us remember that intact abilities often compensate for innate or acquired disability. People who are blind develop an exquisite sense of touch, smell, and hearing. Kids with spina bifida who have never had use of their legs learn to scoot around as fast as their playmates and siblings.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><i><b>What Lefty is losing in function, Righty happily takes on with aplomb. </b></i> </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Joining the ALS community through organizations like <a href="https://iamals.org/">I Am ALS</a>, I am inspired by a fierceness of spirit, a courageous drive for change, a passionate desire to leave the world a better place. These ALS champions and their loved ones are my new team. Everyone is welcome. Everyone gets into the game. Kindness is not a zero-some proposition. Love abounds. Courage and hope prevail.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I understand the need for the ALSFRS-R. But, wouldn't it be great to have a partnered scale to measure <u>positive</u> progress? We could call it the ALSTLS. The ALS Turbo-charged Living Scale, measuring: </div><div class="separator" style="clear: both; text-align: left;"><ul style="text-align: left;"><li>adaptability</li><li>humor</li><li>kindness</li><li>compassion</li><li>hopefulness</li><li>resilience</li><li>altruism</li><li>passion for creating change</li><li>fierceness and drive</li><li>advocacy for self and others</li><li>ingenuity</li><li>vision and meaning</li></ul><div>What do you think? Great idea, right?</div></div><br /></div><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-74616334533893894852022-08-25T13:02:00.008-07:002022-08-26T10:27:20.674-07:00The media<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWIdtJ1rM6T9Jv4U-jXDukmHcUL6edrVVPjtw6z1Qvr5suETSiDrFcSVmXZvLPTTbU-ogHwsCwv2thbFdUjCTlXamxHYEzKLqksBaFyZHrxE7Aoc8Fa1CDiAkz7ySoSVMm8lF4lpV5yjYwKqvCn723r-RcLq-trwqXOE7B4BKexQNJwApYHVN2v2-5/s8192/IMG_2383HR4.22.REFINED.HR.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2253" data-original-width="8192" height="119" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWIdtJ1rM6T9Jv4U-jXDukmHcUL6edrVVPjtw6z1Qvr5suETSiDrFcSVmXZvLPTTbU-ogHwsCwv2thbFdUjCTlXamxHYEzKLqksBaFyZHrxE7Aoc8Fa1CDiAkz7ySoSVMm8lF4lpV5yjYwKqvCn723r-RcLq-trwqXOE7B4BKexQNJwApYHVN2v2-5/w433-h119/IMG_2383HR4.22.REFINED.HR.png" width="433" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p>The Hummingbird Fund is gaining notice which makes me really happy. Our mission is clear, and dare I say boldly stated:</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span style="background-color: #b6d7a8; color: #222222; font-family: Arial; font-size: 11pt; font-variant-caps: normal; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; font-variant: normal; font-weight: 400; vertical-align: baseline; white-space: pre-wrap;"><u><i>Ending ALS. Starting with all of us.</i></u></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><span id="docs-internal-guid-6a998524-7fff-7494-ff96-a0c436370b61" style="background-color: #b6d7a8;"><i><br /><span style="color: #222222; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">The Hummingbird Fund stands on three pillars: access, innovation, and advocacy. We are on a mission to end care gaps for Virginians living with ALS, accelerate innovation to improve quality of life, and advocate for legislative action and research to </span><span style="color: #222222; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">end ALS</span><span style="color: #222222; font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">. Through agile grantmaking, we work to help ALS patients and their families live full lives. Join us to help end ALS in this decade. </span></i></span></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">Hummingbird offers me the opportunity to use the experience I have accumulated from decades of work with families facing the enormous challenge of caring for a<span> child with significant medical complexity and disability. Moreover, </span>I am lovingly joined by my family and hundreds of others whom I am calling the Hummingbird Champions. </p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">When invitations from the press started to roll in, you might imagine I would be delighted to share my passion for the vision of the Fund. </p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">My immediate thought was that this kind of carpe diem would be best delegated to my highly photogenic, uniquely poised, well-spoken family.</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">They declined, saying I was the man for the task.</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">So, I keep saying yes. And you know, with preparation and some practice it gets easier. I now see the media as a chance to share the ALS story, which has been side-lined for almost 100 years. </p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">Recently, Will Selden, a podcaster at the Virginia Health and Hospital Association, began his interview, asking, "So tell us, how are you doing these days." </p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">The question caught me off guard with its humanity. I thanked him for the question and its kindness, and then I answered as I almost always do, saying, "Oh, I'm fine." In this instance I elaborated with mention of the abundant love surrounding me.</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">I mean, no one wants to hear about me struggling to learn how to butter toast with my right hand, or the disappointment and fear associated with the gait-related side effects of edaravone, a medication I've been waiting to try for months, and one that required no less thank 20 hours of my time in the way of prior-auth's and payment schemes.</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">With the media I stay close to my talking points, allowing the daily realities to swirl like an imaginary cloud bubble above my head.</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhTYEEnt6nzihQ40hWhGVtaphFZ4AD1NUeAWShMLaTDi68KYgd211g7zDcDYt5MnviNuJEQoVTt0Gs4naWIEAjhC6_hZX9IIlGpuGMl3iZQGklMYcCqBfTN2-yBkUXzcJKClYSimmoSZe3WjOkeDQ8-NJcnr4fXDLKe4Jl4iqkHxuP1Hq9N9-xXu0va" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="174" data-original-width="289" height="140" src="https://blogger.googleusercontent.com/img/a/AVvXsEhTYEEnt6nzihQ40hWhGVtaphFZ4AD1NUeAWShMLaTDi68KYgd211g7zDcDYt5MnviNuJEQoVTt0Gs4naWIEAjhC6_hZX9IIlGpuGMl3iZQGklMYcCqBfTN2-yBkUXzcJKClYSimmoSZe3WjOkeDQ8-NJcnr4fXDLKe4Jl4iqkHxuP1Hq9N9-xXu0va=w232-h140" width="232" /></a></div><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p>Some questions are fun. Here's one that Will Selden used to close out our interview. Feel free to try this at home and let me know your answers.<p></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><i style="background-color: #b45f06;">If you were stranded on a desert island, all alone, what one book (aside from the holy text of your choice), movie, and recording would you want to have along?</i></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><i style="background-color: #b45f06;"><span style="font-size: medium;"><br /></span></i></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">Ok, so here goes. I will mention that I decided to go for diversity:</p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"></p><div style="text-align: left;">BOOK: Mirabai Starr's recent translation of Julian of Norwich's <u>The Showings</u></div><div style="text-align: left;">FILM: Notting Hill</div><div style="text-align: left;">MUSIC: Nina Simone "Pastel Blues"</div><div class="separator" style="clear: both; text-align: center;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9bnAo4GfdEdxBmP5LlJIsK3BjozpzPOCIW7_C1BCbXVe6Xl8_oPNgEigebiR0a9B72uefwn1AO7h4yWDQnJXuxgDE-PCuOLuOSvl05GpEUlHAm9er1ioRSdJGiHrZXN_GD0QH_axYtLHjzSK7OJgxA1RTlEbdvxXR3OGC6GObFGIBQUb2vihvQv6u/s3813/4C82B763-18D8-4905-AFA3-E6C3F72CBD09.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3813" data-original-width="2410" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9bnAo4GfdEdxBmP5LlJIsK3BjozpzPOCIW7_C1BCbXVe6Xl8_oPNgEigebiR0a9B72uefwn1AO7h4yWDQnJXuxgDE-PCuOLuOSvl05GpEUlHAm9er1ioRSdJGiHrZXN_GD0QH_axYtLHjzSK7OJgxA1RTlEbdvxXR3OGC6GObFGIBQUb2vihvQv6u/s320/4C82B763-18D8-4905-AFA3-E6C3F72CBD09.jpeg" width="202" /></a><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgRiC35owgZ9znzqsBVWSJnezq-kmY8jNXi2nJoPI7bxrJYdCzj-6mcr7qfxLXE9-tzCukp7biFZkAAQ46cPENmZ_X1tGqPFZL85qF_v-xM_3_RhE69IOXr2n9NaRXFEB1fIdBcH6B042ioMvV4MEGcHqbfO3oGH98_xGs8j1k887NkRdksYPXP_tAI" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="320" data-original-width="180" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEgRiC35owgZ9znzqsBVWSJnezq-kmY8jNXi2nJoPI7bxrJYdCzj-6mcr7qfxLXE9-tzCukp7biFZkAAQ46cPENmZ_X1tGqPFZL85qF_v-xM_3_RhE69IOXr2n9NaRXFEB1fIdBcH6B042ioMvV4MEGcHqbfO3oGH98_xGs8j1k887NkRdksYPXP_tAI" width="135" /></a></div></div></div><div><br /></div><br />Will Selden had one more question before signing off. He asked for a bit of advice I had received that was worth passing along. My answer came immediately to mind, but I decided to place it in the context of a brief story.<div><br /></div><div><span style="background-color: #b6d7a8;"><i><span style="color: #444444;">When I was first diagnosed with ALS, I was at sea with knowing how to integrate ALS into my psyche, into my soul, really. I revealed this awkwardly to a friend, who took a moment, then looked me straight in the eye, and with a gentle smile, said, "Just be yourself, Jim. All you have to do is be yourself, and the rest will follow."</span></i><br /></span><p dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;"><br /></p><div class="separator" style="clear: both; text-align: center;"><br /></div></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-17741012873009590172022-08-03T11:35:00.003-07:002023-02-01T14:31:34.990-08:00My daily 40<p>A local gastroenterologist taught me the proper way to swallow a pill. </p><p>Said gastroenterologist was also the mom of a teenager in my care.</p><p>Teenagers famously swallow their acne medicine without so much as a sip of water. Hence, the doxycycline sticks to their dry esophagus and creates an ulcer. Said teenager then ends up in the pediatrician's office with chest pain. Thus, I have discovered, teaching teenagers to swallow their pills with plenty of water is just practicing good, preventive medicine.</p><p>Here's what I learned from the gastroenterolgist-mom, and subsequently passed along to dozens of teenagers I treated for acne:</p><p></p><ul style="text-align: left;"><li>begin with 8 ounces of water</li><li>first take 2 swallows of water to moisten the esophagus</li><li>then swallow each pill with the remaining water </li></ul><p></p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCSg9FcG3CQwLla2IHnPFqKdCNw77IzjrwbksaiVUBfuPT49RXipRUKfJgwjiCcRbKPaRbWroPcQVkcTSh0Br7qttN7EnZP8AvlMGkhch7dhdFXvEDwk9bjeHOzAm3sbU1282s0wv5g5zMrfwAYAz6KxwNXK5jyrGW2E9yj3JMBF9yYZhkj2tkX8kW/s3842/8D678B9B-06AF-4422-BEBD-6D99B501BB8C.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3842" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCSg9FcG3CQwLla2IHnPFqKdCNw77IzjrwbksaiVUBfuPT49RXipRUKfJgwjiCcRbKPaRbWroPcQVkcTSh0Br7qttN7EnZP8AvlMGkhch7dhdFXvEDwk9bjeHOzAm3sbU1282s0wv5g5zMrfwAYAz6KxwNXK5jyrGW2E9yj3JMBF9yYZhkj2tkX8kW/s320/8D678B9B-06AF-4422-BEBD-6D99B501BB8C.jpeg" width="252" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">I take 40 pills a day, my <i>daily 40. </i>That's roughly 1200 pills a month. </div><p></p><p>If I followed my own advice, I'd be swallowing 320 ounces of water a day, That's 2.5 gallons of water a day. Peggy has suggested I try milk instead of water, to make the swallowing easier. Doing the caloric calculations for 2.5 gallons of whole milk, that would be an extra 5,760 calories a day.</p><p>In various mindfulness workshops, I've been instructed to eat one blueberry or one M&M at a time, savoring the individual experience of the moment. And perhaps it would aid my healing to contemplate the action of each pill, individually, in the moment, as it fights Mr. ALS, but 2 1/2 gallons of water a day seems impractical, and potentially dangerous.</p><p>And besides, I eat blueberries with gusto by the handful. Is it really a surprise that I'd take my pills by the handful too? </p><p>When swallowing pills, I am careful to drink lots of water. However, even well meaning techniques pose potential hazards. </p><p>Depending on the size, shape, and quantity of pills in each handful, I might cough a bit, causing water to shoot up my nose. This, by the way, feels exactly the same as getting water up your nose while jumping off a dock, into the lake, doing a cannonball to show off. Such a show off.</p><p>Included in the <i>daily 40</i> are 4 anti-retroviral medications (ARVs) that are part of a NIH clinical trial. Why am I taking ARVs commonly used to treat HIV, you ask? Well, it turns out that I am among the ALS patients who have HERV-K floating around in their blood. And, HERV-K, like HIV, is a retrovirus. The NIH study aims to determine if ARVs can eliminate HERV-K from the blood. And what might be the role of HERV-K in ALS, you ask? Like most everything with Mr. ALS, the role of HERV-K remains illusive. Sorry.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcVr4Q9eL0OEFNnv2WhiWaTRRxh6n3A76Le5fhfwm6xxG3eYA75MPS3k5RKs38l-G-T_09HL_RY9r3Zm1-idJ47LlknvmjaOUcuOJG83k0CiZfuGqzW4X8_wwWEXt2XIEpe90r4zLKzW3RqLtTCdKTdPOYBDZyFL-UPaS0BOE648aNCXtsKgJnOUrY/s4032/D50E2B90-8D71-4B6C-B34D-4ADB42BA4BA5.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcVr4Q9eL0OEFNnv2WhiWaTRRxh6n3A76Le5fhfwm6xxG3eYA75MPS3k5RKs38l-G-T_09HL_RY9r3Zm1-idJ47LlknvmjaOUcuOJG83k0CiZfuGqzW4X8_wwWEXt2XIEpe90r4zLKzW3RqLtTCdKTdPOYBDZyFL-UPaS0BOE648aNCXtsKgJnOUrY/s320/D50E2B90-8D71-4B6C-B34D-4ADB42BA4BA5.heic" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Ah, but here's the plot-twisting good news.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">During the HIV epidemic, a small group of patients with HIV also developed ALS, or something that looked exactly like ALS. When these patients received ARV treatment for the HIV, their ALS symptoms went away. In other words, ARVs completely reversed the ALS. They were cured!</div><p></p><p>This current NIH trial lasts 24 weeks. At the end of the study, the NIH will no longer provide ARVs, even if they seem to be helping clinically, because this is not a randomized clinical trial. The purpose of this trial is only to investigate the effect of ARVs on HERV-K in my blood.</p><p>Ok, just for kicks, let's imagine that I do experience a positive clinical effect, a reversal, from the ARVs, like those folks who had HIV. If I want to keep taking the ARVs, the monthly cost would exceed $12,000, and insurance will not cover ARVs when used off-label for ALS. A sad reality of our health care system.</p><p>To continue taking the ARVs after the NIH study ends, it appears I will need to contract HIV. Now, no one wishes HIV on anyone, but this seems the only logical way to obtain insurance coverage for medication that might successfully defeat Mr. ALS. </p><p>HIV to get ARVs to reverse ALS, why not.</p><p><br /></p><p><br /></p><p><br /></p><p></p><div><br /></div><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-34981279701998503382022-07-21T07:58:00.004-07:002022-07-21T07:58:58.605-07:00Milkweed<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6H8yCy3jtZqkIn802U1H-3DFeJTZwvqnzl-AQ_ibe7RgFyIlD4tODTNAYgcA2gIGLAJAWBxEnmU10aAG4fpyXYX10ygYkTijAuuATcJ35Tcj1z4eX-i6Q5tsn6hN9KLN2LBpa7zIi6NQL4IS_I_AMFPirRPnNRI4Bn6KNCxYq-udrA0-TenvAarRq/s4032/milkweed%20pod.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6H8yCy3jtZqkIn802U1H-3DFeJTZwvqnzl-AQ_ibe7RgFyIlD4tODTNAYgcA2gIGLAJAWBxEnmU10aAG4fpyXYX10ygYkTijAuuATcJ35Tcj1z4eX-i6Q5tsn6hN9KLN2LBpa7zIi6NQL4IS_I_AMFPirRPnNRI4Bn6KNCxYq-udrA0-TenvAarRq/s320/milkweed%20pod.heic" width="320" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><i>"Contemplation is a long loving look at the real."</i></div><div class="separator" style="clear: both; text-align: left;"> --Fr. William McNamara</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Most mornings, weather permitting, I begin my day sitting here in our contemplation garden. I sit alone, or with Delta Mae, in contemplation, sipping coffee, hoping to center myself in silence, stillness, and solitude. The intention is to sit here until I'm ready to start the day. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">How do I know when I'm ready? Not surprisingly, ready means different things day to day. Mostly, I'm ready to stand up to start the day when I feel <i>whole</i>. For some folks, I suppose <i>whole</i> might mean complete, or put together. But for me, <i>whole</i> is when I feel more real, at least more real than when I sat down. You might say I feel a bit less independent, judged, accomplished, or broken. Truthfully, I feel whole when I feel more like part of the garden. Steady, poised, rooted.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Often, the garden will offer me a gift in contemplation. </div><div class="separator" style="clear: both; text-align: left;"> </div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpFxXgVTVkQfxo6tsoa44YU3jjvZYpAvnkwCXmaYZUoTgHBzxWHR6bXqP2GZKD1Y8nYNyg9DizbOdmadxHcdcnx6Ts12wcoeCRoOyzVC74yer6cwdFpJo-zUXnDyLbsuRHlh_tc94kJZN5NAkEH3mV1qFEhFRJ88IkQ2BV1V1emGQCyV0RIpUdVqEa/s4032/milkweed%20standing.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpFxXgVTVkQfxo6tsoa44YU3jjvZYpAvnkwCXmaYZUoTgHBzxWHR6bXqP2GZKD1Y8nYNyg9DizbOdmadxHcdcnx6Ts12wcoeCRoOyzVC74yer6cwdFpJo-zUXnDyLbsuRHlh_tc94kJZN5NAkEH3mV1qFEhFRJ88IkQ2BV1V1emGQCyV0RIpUdVqEa/s320/milkweed%20standing.heic" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="text-align: left;"> </span></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Look at these milkweed. Look at how they stand tall, day after day, boldly growing toward the sun. Their brilliant flowers have passed. The spectacular monarchs, drawn to their blossoms, have moved on. Now, they wait for autumn. In a month or so, each velvety pod will crack open to release silky seeds across the morning breeze. And, as the air turns cold, their thick green leaves and sturdy stems will wither, turn a dusty brown, and fall, unceremoniously back to the earth.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">This morning I see dignity, I see humility, and I see what's real.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><br /><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><br /> <p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-49346727102608157412022-07-07T13:20:00.000-07:002022-07-07T13:20:33.171-07:00Quick Check-in with JimBob<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHbgfQJ8u644O0uuULETNhCSk8bgQnRcDDyFXhdRZf2jwDwGExqph4WjqfLT4oVoYeTcVfd7axXiuvH3pll52l_515XyAuDg7S2ECoruuHFoPm1wGH_3Ng5QQPfCtRLoKqvG59fCTYgD9f6Rk8t7YioUoDFAqlLhrgObfJ4I5PitTGPBqoBST-O_S0/s1280/D282F12F-E9B4-4842-8E6F-6283B4E7DC78_1_201_a.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHbgfQJ8u644O0uuULETNhCSk8bgQnRcDDyFXhdRZf2jwDwGExqph4WjqfLT4oVoYeTcVfd7axXiuvH3pll52l_515XyAuDg7S2ECoruuHFoPm1wGH_3Ng5QQPfCtRLoKqvG59fCTYgD9f6Rk8t7YioUoDFAqlLhrgObfJ4I5PitTGPBqoBST-O_S0/s320/D282F12F-E9B4-4842-8E6F-6283B4E7DC78_1_201_a.jpeg" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">--It's time a for a quick check-in with JimBob and his pal DeltaMae.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--JimBob, tell us how you're doing these days.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"First, let me thank you for not tilting your head to one side while asking how I'm feeling. It's a fair question, but, Lord, it's hard to answer. As someone living with ALS, I never know how to respond to the 'feeling' question. <i>Emotionally? Physically? Mentally? Spiritually? </i></div><div class="separator" style="clear: both; text-align: left;"><i><br /></i></div><div class="separator" style="clear: both; text-align: left;">--I can see that.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"I have relevant data to share from each domain, but where to begin."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--uh huh.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Most days I just smile and say, 'Oh, I'm fine.'" </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--yeah, I get that.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">(Silence) </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--JimBob....</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Yes?"</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--JimBob, back to the question: how are you doing? </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Besides fine?"</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Yes, besides fine. Tell us how you are doing? We care about you. We truly want to know how you are doing.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Well, I'm not happy about this ALS mess."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--I imagine not.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"And, I'm not depressed or anxious. Praise God for Zoloft."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--The world is a better place since Zoloft. I'll grant you that.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"I have a new brace for Lefty which makes it 100 times easier to type."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Excellent.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Physical therapy is fixing the adhesive capsulitis in my left shoulder, so I'm not in pain anymore, and I'm sleeping all night with Peggy in my arms. I can wash my hair with both hands again."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Terrific.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"I've written about my double-life."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Yeah, that was a tad dark.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"I know. Sorry about that."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--No worries. You're good.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"The ALS falderal is ever-present, you know. It has a way of being a constant storm."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--ALS falderal?</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"The forms, the emails, the decisions, the disappointments, and all the problem-solving with lousy options."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Oof.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Yeah, sorry."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--No worries at all. Sounds like a ton of work.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"And stress. Thank God for Peggy."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Amen to that. And DeltaMae.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"DeltaMae loves our morning contemplation. It might look like she's sleeping, but I know better."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Right.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"I'm learning to slow down, and to welcome joy."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Good. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"I'm remembering to linger in the holy moments, and be grateful."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Lovely.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Oh, I can't forget to mention that The Hummingbird Fund is taking off. We've hired a Program Coordinator for Outreach and Advocacy." </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Excellent</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"The Hummingbird Fund is clearly my next gig, and I can't tell you how happy that makes me feel."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--Brilliant.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Hey, thanks for asking."</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">--You betcha. Peace... Out.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">"Peace..Out"</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7iWoBu-FhdqfX4KVEx5f2gElLvOF1swnz1ttC3rvaZCT1aKV8Z59zqLPR0KcrG6Ny-iXXQBCR-2OTcqDdqBxZ7B9DOEQ2ETSPksIyBnLVWmsY7bZpKKKmEy8EnhOtwiPjqHOKMRcxQSQyQ9vnLELkxKqWqp5Ktw_JTABQ_Ge3KYq4N7wafP10q_VD/s4032/FF9F7178-AE1D-4A7C-A33F-088809A36F5A_1_201_a.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7iWoBu-FhdqfX4KVEx5f2gElLvOF1swnz1ttC3rvaZCT1aKV8Z59zqLPR0KcrG6Ny-iXXQBCR-2OTcqDdqBxZ7B9DOEQ2ETSPksIyBnLVWmsY7bZpKKKmEy8EnhOtwiPjqHOKMRcxQSQyQ9vnLELkxKqWqp5Ktw_JTABQ_Ge3KYq4N7wafP10q_VD/s320/FF9F7178-AE1D-4A7C-A33F-088809A36F5A_1_201_a.heic" width="240" /></a></div><br /><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><br /><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-77257633114902161382022-07-04T12:14:00.007-07:002022-08-29T04:13:44.095-07:00The Double Life of ALS<p>In <a href="https://www.nytimes.com/2022/06/28/opinion/coping-climate-war-happiness.html">a recent essa</a>y published in the New York Times, Mary Pipher reveals her double life. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhck9s4tpoOjWV5I5efVbra_us5p1et8G0TdB7PVlR8kbAZQYfncedqiWGXspbpYSDsdkXgzuZ1sPjtMibZHJ5VfMGNfX5mAGDOm-nfJaf-kZCGXMaXqN4_YAmNo_Fm7vtflKw25UOruGndRc6NphqU_Kl3VSeBxiL7a59UXzlwszWw2AlyqNtMVFIO/s275/mary%20pipher.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="275" data-original-width="183" height="275" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhck9s4tpoOjWV5I5efVbra_us5p1et8G0TdB7PVlR8kbAZQYfncedqiWGXspbpYSDsdkXgzuZ1sPjtMibZHJ5VfMGNfX5mAGDOm-nfJaf-kZCGXMaXqN4_YAmNo_Fm7vtflKw25UOruGndRc6NphqU_Kl3VSeBxiL7a59UXzlwszWw2AlyqNtMVFIO/s1600/mary%20pipher.jpeg" width="183" /></a></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br />Perhaps you remember Mary Pipher, PhD., as the best-selling author of <u>Reviving Ophelia: Saving the Selves of Adolescent Girls,</u> and <u>Women Rowing North.</u> Or, maybe you remember her as <a href="https://freshairarchive.org/guests/mary-bray-pipher">a provocative guest</a> on NPRs Fresh Air with Terry Gross. <p></p><p>Her latest work, <u>A Life in Light: Meditations on Impermanence,</u> is currently on my Kindle.</p><p><u></u></p><div class="separator" style="clear: both; text-align: center;"><u><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCR0j2zNTsc38VXVi72ez4uNR2QprxN82surP6dT57GRpIDp6JAw60_040WwKAbqZ9uPH43JjIIqrOuApZ7i_EdSCZQv2IGJV2oDYQIrfagRn9GVkFJoRObSm2YR8sWLAocJdiT_DhYDTw-axpp3jym8f0hl3ZMGzJkyaQGMupHy66o_20o7w3kUNW/s443/A%20life%20in%20LIght.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="443" data-original-width="300" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCR0j2zNTsc38VXVi72ez4uNR2QprxN82surP6dT57GRpIDp6JAw60_040WwKAbqZ9uPH43JjIIqrOuApZ7i_EdSCZQv2IGJV2oDYQIrfagRn9GVkFJoRObSm2YR8sWLAocJdiT_DhYDTw-axpp3jym8f0hl3ZMGzJkyaQGMupHy66o_20o7w3kUNW/s320/A%20life%20in%20LIght.jpeg" width="217" /></a></u></div><p></p><p>In her recent NYT piece, Pipher states boldly, "Of course, I am leading a double life. Underneath my ordinary good life, I am in despair for the world." She goes on, "Some days, the news is such that I need all of my inner strength to avoid exhaustion, anxiety, and depression... In times like these, we need world-class coping skills just to stay fully awake, enjoy our lives and be of service to others."</p><p>Pipher shares insights from three sources:</p><p><u>Her grandmother</u>:</p><p style="text-align: center;"><i> </i>"...be the person you want to live with every day of your life." <i> </i> <i>(Forgive yourself, be whole and grow throughout your life--jpo) </i></p><p></p><div class="separator" style="clear: both; text-align: left;"><u>Psychology</u>:</div><div class="separator" style="clear: both; text-align: left;"> </div><div class="separator" style="clear: both; text-align: center;"><i>"</i>the best way to cope with suffering is to face it... find ways to balance [...] despair with joy" <i>(Find balance and wisdom in a double-life--jpo)</i></div><div class="separator" style="clear: both; text-align: center;"><i><br /></i></div><div class="separator" style="clear: both; text-align: left;"><u>Thich Nhat Hanh</u>:</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;">"His deepest teaching concerned our interconnection with all life. We all share the same consciousness..." <i> (Individual action in response to despair for the world adds to the shared consciousness for positive change--jpo)</i></div><div class="separator" style="clear: both; text-align: center;"><i><br /></i></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjavzyY84hy4agOZN9_axbxVVqQ_k7OdXEzJrQ3q7zLxOM08jCNZuX3uoulb_oInD9qnWBG1Y0CCjJ1Xa_MbZwDQlVxC5dnTsWUVZQVwhjpn0ZM9wylqoBjt_ag9L_OjDcij0UdLIqRlnSJKsgmu6AQSXHbbYr9qrXK_hexAzn2DuoewCgRroNra2_0/s1689/mystical-drawing-stylized-sun-moon-human-face-day-night-mystical-drawing-stylized-sun-moon-human-face-day-158821294.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1689" data-original-width="1600" height="301" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjavzyY84hy4agOZN9_axbxVVqQ_k7OdXEzJrQ3q7zLxOM08jCNZuX3uoulb_oInD9qnWBG1Y0CCjJ1Xa_MbZwDQlVxC5dnTsWUVZQVwhjpn0ZM9wylqoBjt_ag9L_OjDcij0UdLIqRlnSJKsgmu6AQSXHbbYr9qrXK_hexAzn2DuoewCgRroNra2_0/w303-h301/mystical-drawing-stylized-sun-moon-human-face-day-night-mystical-drawing-stylized-sun-moon-human-face-day-158821294.jpeg" width="303" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Pipher is not alone in the double life. I imagine most of us can relate to the need for inner strength as we attempt to face a suffering world, one that includes the turmoil in our own lives. Like Pipher, we most often keep the double-life to ourselves, and share the sunny side with others.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Recently, I spent an entire day lobbying congress to: (1) increase funding for ALS research, (2) create new policy to hasten distribution of safe and effective ALS medications, and (3) address the inequities in ALS care.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Our team of ALS advocates met (virtually) with legislative aides (LAs) in 8 offices: 2 senate, and 6 members of congress. We told our stories of living with ALS, and urged the LAs to take up our cause. We also listened to each other's stories, eight times over. Having faced this challenge before, I came prepared with a 2 minute speech to remind the LAs that ALS is like no other adult condition in its rapid decline to profound disability. I called on the LAs to remember this fact when they heard the ALS community calling for innovative and urgent legislative action. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">As the new team members shared their experiences of managing a life of disability and loss, I could feel the emotional toll crescendo. For some, this was the first time they had publicly revealed their double-life. We waited solemnly, holding the silence, when they got choked up. We "echoed points" that others had made, as a way to show support. And, occasionally an LA acknowledged their courage. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">In the late afternoon, I kept imagining how a post-game gathering at a D.C. bar would be a welcome end to an arduous day. No such luck. At 4:30, we waved at our screens and clicked off: zoom world at its finest. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I lingered in front of my computer screen, trying to take in the day. The stories and the emotion had infused me with the interconnectedness of a shared double-life. I wrote short emails to each person on the team. I thanked them for their fortitude, and their honesty. I offered to talk. It seemed a meager attempt at an email hug. <br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">As is typical for me, the emotional weight came the next day. An ill-defined, slate-gray heaviness loomed large. I could not describe it, and I could not shake it. A dear friend named it for me, saying I had a colossal <i>emotional hangover</i>. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I muddled along, weary and somewhat confused. Contemplation helped. Time outside with Peggy and Delta brought color into the day. Looking back, a simple meal and a good night's sleep seemed essential to the cure. I felt restored in the morning.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Slowly, I am learning that our interconnected double lives need time for a re-set after these really rough days, even when they are not full of ALS legislative advocacy on zoom. I need time to regain my balance to be buoyed back from the deep. Mainly, I need joy, wonder, beauty, laughter, and affection to balance the darkness and to remind me that we are interconnected through our positive emotions and stories as well. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">In the future, I'll plan for the time to recover. More time with Peggy and Delta Mae. More time in contemplation, and doing ordinary tasks like weeding the garden, or making a pot of soup. Time to simply wallow in the love that surrounds me.</div><div class="separator" style="clear: both; text-align: left;"> </div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC6XA7cNxa7RzxA0Gi0DeP2wtvxnK0areodh3YJOzcebYexSq60WoAJ4M1C6AJ21fLGZiwneZI1_Iy3vZr0wGYyXuS9KBYAavDuKUJeOOoWj4KUqsBLO9J79kheGGQHItg7ZPmOnx7-xZWYHsrPua1QdokPbLm5UbtU8qTwnkSlmKyucB9z6BnV2BO/s269/images.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="187" data-original-width="269" height="187" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgC6XA7cNxa7RzxA0Gi0DeP2wtvxnK0areodh3YJOzcebYexSq60WoAJ4M1C6AJ21fLGZiwneZI1_Iy3vZr0wGYyXuS9KBYAavDuKUJeOOoWj4KUqsBLO9J79kheGGQHItg7ZPmOnx7-xZWYHsrPua1QdokPbLm5UbtU8qTwnkSlmKyucB9z6BnV2BO/s1600/images.jpg" width="269" /></a></div><br /><i><br /></i></div><br /><br /><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com1tag:blogger.com,1999:blog-8151210006067069609.post-61385942606870247582022-06-23T14:18:00.001-07:002022-06-24T05:32:18.114-07:00My pillbox<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJfPTXRe7xBaC2K6tdGMYZw9ibMMmuMWwpoikYwjSThr7_8fWYUtI8UTlaAlygtXbIfAkXaw__5XUdolJ0T2G1biv2BpQ3qTSTacuqBiEA2k_Eb4BIxviCs_I-ehHyH6wTJZygijhfMnB6BrfzRqIyQEGk8mCaQc4O6rZggwJWkJB0vVcyOFF_aHg4/s3945/pill%20box.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2518" data-original-width="3945" height="204" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJfPTXRe7xBaC2K6tdGMYZw9ibMMmuMWwpoikYwjSThr7_8fWYUtI8UTlaAlygtXbIfAkXaw__5XUdolJ0T2G1biv2BpQ3qTSTacuqBiEA2k_Eb4BIxviCs_I-ehHyH6wTJZygijhfMnB6BrfzRqIyQEGk8mCaQc4O6rZggwJWkJB0vVcyOFF_aHg4/s320/pill%20box.heic" width="320" /></a></div><br />Once a week, I fill my pillbox. The box keeps me on track, especially since I swallow a rainbow of pills and capsules three times a day. You might think it impossible to forget whether you have swallowed 13 or 14 pills. Trust me, when it becomes a day-to-day routine, it's easy to forget without a pillbox that stands empty. Crazy, right?<p></p><p>Before Mr. ALS arrived on the scene, I did not own a pillbox, and I did not fret about forgetting to take my vitamin D.</p><p>As for today's collection, you might enjoy knowing that I have a giant capsule filled with golden oil, and a tiny rectangular tablet the color of a robin's egg. Theracumin is a standout for two reasons. It is a uniquely thin capsule, easy to swallow, and it is a strikingly beautiful butterscotch-mustard-yellow. </p><p>A wide array of white capsules are distinguished only by size. The six giant sodium phenylbutyrates (which I take twice a day) must be taken 2 at a time, and even then, they often stick to the back of my throat, unless, of course, I remember to tip my head forward to widen the epiglottic valleculla.</p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgLaD6k_PuqpKnonxwhzH8q8Z1WJ_vPSI3jN55nZ59Tr91-1JmIihKNLt0evhPFr3NsMbecOzLCZSl-uwTwTvD5FCC9B1heFJ66_pwRAUwbn1qhfo21wrG9mBvV171J53uEVOE2J-P-eiWOJ-3piEEaxWc4PNVo4AiqjViY5jXdOOUgITFXehI-priF" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="646" data-original-width="600" height="349" src="https://blogger.googleusercontent.com/img/a/AVvXsEgLaD6k_PuqpKnonxwhzH8q8Z1WJ_vPSI3jN55nZ59Tr91-1JmIihKNLt0evhPFr3NsMbecOzLCZSl-uwTwTvD5FCC9B1heFJ66_pwRAUwbn1qhfo21wrG9mBvV171J53uEVOE2J-P-eiWOJ-3piEEaxWc4PNVo4AiqjViY5jXdOOUgITFXehI-priF=w324-h349" width="324" /></a></div><p><br /></p>Randomly, I'll mention here that as a boy I collected marbles. I had cat's eyes, and boulders, steelies, and solids. In all humility, my collection was the envy of Riverside Drive. Somehow this seems full-circle.<p></p><p><br /></p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjHqLgxgD44EJdd4Ifcad3VBpqEzcrZxqw6bexfbupkdDfmlHUbobeoSSFE1cGkSwMqT6sBZoiO32lt7VS4xdPxWTiqs8trTT1x_n9ZTfbpOz53CD6sLfa9CHiey3qsfaU_DlxW0eU1ZY4xbp25dXodo1PAvq7xcRHa2B00yZRAbDJW4MwMSmVoRbtK" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="750" data-original-width="600" height="328" src="https://blogger.googleusercontent.com/img/a/AVvXsEjHqLgxgD44EJdd4Ifcad3VBpqEzcrZxqw6bexfbupkdDfmlHUbobeoSSFE1cGkSwMqT6sBZoiO32lt7VS4xdPxWTiqs8trTT1x_n9ZTfbpOz53CD6sLfa9CHiey3qsfaU_DlxW0eU1ZY4xbp25dXodo1PAvq7xcRHa2B00yZRAbDJW4MwMSmVoRbtK=w288-h328" width="288" /></a></div><br /><p></p><p>Every pill and capsule I ingest has a clearly described scientific rationale. Some of them come with a prescription from my neurologist. Others I purchase on Amazon.</p><p>A major player in my arsenal is the tag team of Tudca and Sodium phenylbutyrate. This combination is also known as AMX0035, which is making its way through the regulatory approval process at the FDA. AMX0035 is only available through a randomized controlled trial, which means some of the people are receiving the actual medication and some are receiving a placebo. </p><p>AMX0035 has shown promising evidence in the treatment of ALS: it appears to slow the progression to respiratory failure by 10 months.</p><p>Until recently I have been using a small compounding pharmacy in New Jersey for my monthly supply of sodium phenylbutyrate, all 360 capsules. We purchase it off label, which also means it is not covered by insurance.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmNtfaPuqm6MoPPMDPU4eyjjif1rsuu6F_1Zf_Cg7kkddq3KSg9mFwYw1mgGz8xh66lZR8vKSdfP3XjMtzCrDAaaO3E3nG31OibblHrjxWjAEmfr5vfb0vM_KtIUUOd93kHm_sSv5pEO5eFwdfF_wIZArKEqeVOX0WhXjn_pf3wGdhmsOrk_pZVLyy/s4032/hopewill.HEIC" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmNtfaPuqm6MoPPMDPU4eyjjif1rsuu6F_1Zf_Cg7kkddq3KSg9mFwYw1mgGz8xh66lZR8vKSdfP3XjMtzCrDAaaO3E3nG31OibblHrjxWjAEmfr5vfb0vM_KtIUUOd93kHm_sSv5pEO5eFwdfF_wIZArKEqeVOX0WhXjn_pf3wGdhmsOrk_pZVLyy/s320/hopewill.HEIC" width="240" /></a></div><br /><p>Much to my dismay, the sole manufacturer of sodium phenylbutyrate halted production in May. I talked to them, of course, and they offered no clear explanation, nor definite time frame for when production might resume.</p><p>I ask you: what's a person to do with Mr. ALS breathing down their back? Take the regular dose and accept a pause in a proven therapy? Take a half-dose to make it last longer and accept the possibility of it being sub-therapeutic? Try to find another pharmacy that compounds sodium phenylbutyrate and ships it out of state?</p><p>After consulting with three neurologists who are experts in the field of ALS, I decided on a half-dose. </p><p>In the meantime, if I were to sense a subtle, new symptom of ALS, should I worry the new symptom is the result of the decreased dose, or just the natural progression of ALS?</p><p>Another conundrum: as new therapeutic opportunities arise, what should be the calculus for the order of operation, because certain options preclude others.</p><p>The happy ending here is that we have found another compounding pharmacy and I am back to a full dose of sodium phenylbutyrate. The injustice and inequity of my privilege is on full display as I pay thousands of dollars each month for this opportunity. </p><p>Yesterday, I spent the entire day on zoom, in virtual meetings lobbying members of congress with a group from the ALS Association. As people living with ALS, we did our very best to elucidate the realities of our lives. The legislative aides listened carefully, mostly. They took notes and expressed dismay for our misfortune. We asked for their support regarding appropriations for the Act For ALS, and in general they assured us they would keep it under consideration.</p><p>ALS is unlike any other adult infirmity in its swift path to disability. The glacial speed of the federal government is not well suited to respond to this kind of urgency in a rare disease. Still we must persist.</p><p>I take hope in the power of the people. The ALS community is a feisty lot. We will find a way. </p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com3tag:blogger.com,1999:blog-8151210006067069609.post-37605276124381213152022-06-22T09:24:00.004-07:002022-06-22T09:24:46.750-07:00NIH Day #3<p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Day #3 finds JimBob and PeggO weary at the outset. A decent breakfast is essential. Peggo, as we all know, comes prepared to meet that task. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">This morning they begin with Peet's House Blend pour-over coffee, followed by maple flavored Brown Cow yogurt, the kind with cream on top, homemade granola, and hand-picked, ripe, local strawberries.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqUKp48I5x5SXszXQFlc_eD5WqIxM6LWb8Cl8OelpGuqyf6s5fX89Rs1R70Zbwefebj_eiKwOJKzPXizsOGrXgSm_sJDGmdh1YMYLW92nLAbWMO8yMYuC-NGIc7E2mWqJ_7gbgbk64aiPe6zppUHItEJ_KXIMsvDhHGUI5pZiS455jc3DXq9ifFI6T/s700/a-full-framed-background-filled-with-fresh-ripe-strawberries-the-strawberries-are-a-bright-red-color-with-green-stems-and-leaves-700-212696982.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="661" data-original-width="700" height="302" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqUKp48I5x5SXszXQFlc_eD5WqIxM6LWb8Cl8OelpGuqyf6s5fX89Rs1R70Zbwefebj_eiKwOJKzPXizsOGrXgSm_sJDGmdh1YMYLW92nLAbWMO8yMYuC-NGIc7E2mWqJ_7gbgbk64aiPe6zppUHItEJ_KXIMsvDhHGUI5pZiS455jc3DXq9ifFI6T/s320/a-full-framed-background-filled-with-fresh-ripe-strawberries-the-strawberries-are-a-bright-red-color-with-green-stems-and-leaves-700-212696982.jpg" width="320" /></a></div><br />Vine-ripened strawberries are a wonder of nature, no? <div><br /></div><div>"Think about it," muses JimBob, "where else in the world do you see this color of red?"<div><br /></div><div>He waxes on, "Strawberries are so fun to eat... plucking their little stem hats off as you pop them into your mouth." </div><div><br /></div><div>JimBob demonstrates, followed by a self-satisfied smirk.</div><div><br /></div><div>"Delicious."</div><div><br /></div><div>Gesturing with the strawberry top, he says, "No two berries are ever the same. Isn't that amazing?"</div><div><br /></div><div>"Yes, truly amazing. You realize that we still need to take Delta for a walk." PeggO is all business this morning.</div><br /><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie0OPJ1jb9ceJvHoZHy3uPEBabrZ6mLw8gVFchKXef3aruOYWTWuoTsWMT_7oqXo0Wd3sKNLUpzeesqfb7R76MIOaD_oYdmYcK_3DQl-AEL6bGNRtWWKzJcdDY5Q3o6y6atDCEXehFAV3qZ6CRAFiQx6CM_n9_ybVsjEKw7X0uWd35jiLb0r-kFOku/s2905/39A48032-65CC-4603-AA2B-AAD5512D9FC9.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2905" data-original-width="2905" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie0OPJ1jb9ceJvHoZHy3uPEBabrZ6mLw8gVFchKXef3aruOYWTWuoTsWMT_7oqXo0Wd3sKNLUpzeesqfb7R76MIOaD_oYdmYcK_3DQl-AEL6bGNRtWWKzJcdDY5Q3o6y6atDCEXehFAV3qZ6CRAFiQx6CM_n9_ybVsjEKw7X0uWd35jiLb0r-kFOku/s320/39A48032-65CC-4603-AA2B-AAD5512D9FC9.jpeg" width="320" /></a></div><br /></div><div><br /></div><div>Today's snacks: assorted charcuterie, hard cheese, artisanal crackers, roasted pistachios, dates, and ripe strawberries. Pamplemousse La Croix to drink.</div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA2y6sj_3ZzL5yOKCBPCuYw2ALYpKtEnv9OItVuWX9hHosEOmt1fy9bcVp8S1l4vFUGWQ6LyuAcvpqtSZpRTRZzOOcW2gnAjqqhPBH7yFjPV8NsoVyX68ZZwzZrXZtZ6WY1QPuiEvVq9NglRHVklvDeEeAzzMEYgjy8nguLHfXeWH0wVD2jZXACkfn/s3088/4A251D90-4B76-4EAF-8003-5C961751BCB6.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2320" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA2y6sj_3ZzL5yOKCBPCuYw2ALYpKtEnv9OItVuWX9hHosEOmt1fy9bcVp8S1l4vFUGWQ6LyuAcvpqtSZpRTRZzOOcW2gnAjqqhPBH7yFjPV8NsoVyX68ZZwzZrXZtZ6WY1QPuiEvVq9NglRHVklvDeEeAzzMEYgjy8nguLHfXeWH0wVD2jZXACkfn/s320/4A251D90-4B76-4EAF-8003-5C961751BCB6.heic" width="240" /></a></div></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div>PeggO knows what JimBob likes.</div><div><br /></div><div><br /></div><div><u>9 a.m. NIH 1st Floor radiology: </u><u>Fluoroscopy Suite</u></div><div>The official schedule begins with a swallowing study, because people with ALS eventually lose the muscular control required to eat and swallow. The first sign of a problem can be coughing while trying to swallow. Have you ever choked a little bit on your own saliva? Does it make you cough? Maybe this happens when you are laughing. Or, maybe, like JimBob, this happens when you try to talk and eat at the same time. Mr. ALS has this way of transforming an innocent cough into a telltale sign of decline. </div><div><br /></div><div>As they approach the radiology check-in desk, Monique is waiting. She introduces herself to JimBob and PeggO, and ushers them back to her fluoroscopy suite.</div><div><br /></div><div>Monique is the energetic Speech Language Pathologist (SLP) who will do the swallow study, followed by 2 hours of speech and language evaluation. JimBob connects with Monique immediately. She is direct and in charge. JimBob especially appreciates the ways in which Monique respects his dignity. </div><div><br /></div><div>The study will allow Monique to visualize JimBob's swallowing in real time. She begins with a teaspoon of radio-opaque liquid, flavored with Hershey's syrup.</div><div><br /></div><div>Monique stands in front of JimBob as he swallows the teaspoon of liquid. In a formal tone, she queues the radiology technician to capture the dynamic image of swallowing which is visible to her, and to JimBob, on a small screen next to the x-ray camera pointed at JimBob's neck.</div><div><br /></div><div>"Now," she calls out. </div><div><br /></div><div>JimBob and Monique watch the x-ray image appear.</div><div><br /></div><div>A flash of white liquid glides across JimBob's tongue, down his pharynx, and into his esophagus. No aspiration. This is good. </div><div><br /></div><div>"Stop," Monique commands. The screen goes blank.</div><div><br /></div><div>Next they repeat the test with an ounce of the same Hershey's flavored liquid. And after that, 2 ounces of the same liquid, followed by radio-opaque pudding. Monique is visibly relaxing as all of the studies are normal. JimBob wonders how often Monique is the one to break the bad news about unsafe swallowing due to the progression of ALS.</div><div><br /></div><div>They finish the study with a radio-opaque capsule, to test if it's safe for JimBob to swallow pills. Since he swallows 27 capsules a day, JimBob is relatively confident this will make it a clean round on the swallow study circuit.</div><div><br /></div><div>And, it does.</div><div><br /></div><div>They move on to Monique's office for tongue twisters, reading aloud, and oral-motor gymnastics-- things they all know will one day be impossible for JimBob.</div><div>For today, JimBob is happy to repeat them faster than Monique. </div><div><br /></div><div>Next are the tests for language processing which include verbally interpreting a drawing of people at the beach enjoying various waterfront activities. JimBob expresses concern for the man looking at his phone while the smiling woman on the blanket in front of him is opening a bottle of wine. After JimBob has completed his timed description, Monique comments that she shares his concern for the man, and has never before heard anyone call attention to their bare feet. </div><div><br /></div><div>Monique now administers the test that asks for lists of words beginning with a, s, and f. Then a list of animals. JimBob has just completed these tests with the neuropsychologist yesterday. Today he does not have concerns about cursing, and he sails through the test with flying colors, and a knowing wink from PeggO. (See NIH Day #2)</div><div><br /></div><div>Monique's final test involves ordering a fictitious executive's schedule based on the restrictions described in an accompanying narrative. Naturally, JimBob suggests they pass this along to an able administrative assistant.</div><div><br /></div><div>"I rather assumed you might say that," chuckles Monique, with a nod toward the test that means: "get to work."</div><div><br /></div><div>Right.</div><div><br /></div><div>JimBob buckles down and solves the tedious puzzle that includes when to order flowers for the wife and still see his most important customer, while making all of the day's deadlines.</div><div><br /></div><div>Now it's time for a real lunch in the lobby.</div><div><br /></div><div><u>1 p.m. Electrophysiology Lab.</u> </div><div><br /></div><div>There is a solid rationale for saving the EMG and nerve conduction studies until last. They are generally presented to patients as "somewhat uncomfortable."</div><div><br /></div><div>JimBob and PeggO asked about the need to repeat these studies at the NIH, since they were completed at UVA as part of the diagnostic work up for ALS. The recommendation from everyone was to repeat the EMG, since it had been done at such an early point in the disease progression. Repeating the test now should be helpful in a number of ways. The nerve conduction study, on the other hand, was comprehensive the first time and would unlikely need to be redone. </div><div><br /></div><div>Entering the electrophysiology lab, JimBob and PeggO are introduced to a short, gray-haired woman in a long white lab coat. She speaks sternly with a thick Eastern European accent. Her face shows intense concentration. She does not smile. She gestures to two chairs by the wall and instructs JimBob and PeggO to have a seat. Next, she hands JimBob a blue paper gown that she has produced from a gray, metal drawer. As she leaves the room, presumably to allow JimBob some privacy, she chuckles to herself, saying the teenagers always want to take the blue paper gown home. Huh?</div><div><br /></div><div>PeggO and JimBob look at each other and need no words to express their hesitation for how this is likely to unfold.</div><div><br /></div><div>The exam starts with an ultrasound exam of various muscles looking for fasciculations, or tiny muscles twitches. Along with progressive weakness, fasciculations are the hallmark of ALS. Clinicians debate whether fasciculations precede weakness. If they do, then they may be able to predict the spread of the disease throughout the body. </div><div><br /></div><div>JimBob's fasciculations started in his left arm. Currently, he feels fasciculations all day long in his <i>arms, chest, back and abdomen</i>. The twitching is exacerbated by activity. This means he has more fasciculations after many ordinary tasks like making the bed, working in the garden, typing, or standing for more than 10 minutes. With a bit of rest, the twitching quiets down, until the next wave of activity.</div><div><br /></div><div>Today's ultrasound and EMG will provide objective, scientific evidence of JimBob's everyday experience of fasciculations.</div><div><br /></div><div>As she finishes with the ultrasound exam, the neuroelectrophysiologist (the white-haired woman in the long white coat) moves to the other side of the room and begins to pull the nerve conduction device closer to JimBob. </div><div><br /></div><div>JimBob starts to get nervous. He remembers this experience all too well from the first time. </div><div><br /></div><div>A nerve conduction study measures the speed of electrical current running along a nerve. To do this a receptor tab is placed near the end of the nerve, say at the wrist, and an electric probe is placed firmly against that same nerve, say in the elbow. The neuroelectrophysiologist shocks the nerve repeatedly, with increasing voltage, sending a wave of electricity down the nerve. The speed is recorded at different voltages, and the probes are placed along many nerves throughout the body to complete the test.</div><div><br /></div><div>The first shock in each series feels like a little tingle and is easily tolerated. As the voltage increases, the shock feels like an electric fence at the farm, and then like a shock from an electric outlet, and finally, the shock causes the limb to involuntarily jump off the table. The maximum shock is then repeated 3 times.</div><div><br /></div><div>I'm not kidding. This really happens.</div><div><br /></div><div>The study begins and JimBob immediately remembers the "discomfort". As they approach the maximal voltage, he instinctively clutches the edge of the exam table, bracing himself for the jolt of electric current. </div><div><br /></div><div>PeggO sits behind JimBob as the nerve conduction study progresses. She is out of his sight line, but he senses her rise out of her chair with each maximal voltage. On the third sequence of shocks, PeggO asks forcefully, "Is this really necessary?"</div><div><br /></div><div>An awkward silence hovers in the room.</div><div><br /></div><div>"This is the way I like to do these studies," responds White Coat, without turning away from her instruments.</div><div><br /></div><div>"I knew we needed to repeat part of the EMG, but it was my understanding that the nerve conduction would not be required. Has something changed?" asks JimBob.</div><div><br /></div><div>No response.</div><div><br /></div><div>With the next series of shocks, as JimBob's left foot and lower leg come jumping off the exam table, PeggO moves to get out of her chair, and White Coat calls it quits.</div><div><br /></div><div>"He is so hyper-reflexic; I'm not sure this is worthwhile. And it is obviously not his favorite, " says White Coat to her assistant. She says this sitting next to JimBob...her hand still resting on his leg.</div><div><br /></div><div>Not worthwhile? Not his favorite?</div><div><br /></div><div>What is going on here? Who is this for?</div><div><br /></div><div>Next test: the EMG.</div><div><br /></div><div>An EMG measures the electrical activity in muscles, especially as the muscles are stimulated by nerves. To do this, small needles are placed in muscles all over the body, one at a time. The needles are connected via a wire to the EMG unit which measures the electrical activity in that particular muscle.</div><div><br /></div><div><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC8oAH5MSAFJ4zwG32g4LnyOsU02aJeNKxOmg3Z36Krrf7VHocAC5tlsrjESaUOpvYUcL25eBtiK65LhIWDlGUosOAedloEUVjDYn-3n3EMXL9yOhoHLdnrG6FgLL9IhEU3Q8qkEXEMzsLS1B9Vz4GLgKfWXjg0YiivYTn9GR4f66QmWvViiunXl1r/s300/emg-picture-300x300.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="300" data-original-width="300" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC8oAH5MSAFJ4zwG32g4LnyOsU02aJeNKxOmg3Z36Krrf7VHocAC5tlsrjESaUOpvYUcL25eBtiK65LhIWDlGUosOAedloEUVjDYn-3n3EMXL9yOhoHLdnrG6FgLL9IhEU3Q8qkEXEMzsLS1B9Vz4GLgKfWXjg0YiivYTn9GR4f66QmWvViiunXl1r/s1600/emg-picture-300x300.jpg" width="300" /></a></div><br /><div><br /></div><div>White Coat begins by placing the EMG needle into JimBobs left shin. She observes the readings on the EMG unit, and adjusts the needle by wiggling it around in the muscle or pushing it deeper into the muscle. Once she has the reading she needs, she asks JimBob to flex the muscle as hard as he can with the needle in place.</div><div><br /></div><div>White Coat repeats this in JimBob's left thumb, both biceps, and finally in JimBob's neck and back. She decides against the tongue since that was tested the last time JimBob had an EMG. </div><div><br /></div><div>Wrapping up the consultation, White Coat sits facing JimBob and PeggO and delivers the news. The EMG confirms that JimBob has fasciculations in his <i>arms, chest, back, and abdomen</i>.</div><div><br /></div><div>I'm not kidding, this is a true story.</div><div><br /></div><div><u>3:30 Final Wrap-Up with Dr. Kwan</u></div><div>JimBob, PeggO and Dr. Kwan sit alone in a small, quiet exam room. Pale yellow weariness hangs like a fog as Dr. Kwan begins to speak. </div><div><br /></div><div>"Without patients who are willing to participate in research, we can make no progress in understanding ALS," he says. "I am so grateful for your participation in my research."</div><div><br /></div><div>Together, the three doctors summarize the positive outcomes of the three days.</div><div><ul style="text-align: left;"><li>Blood samples may detect HERV-K leading to an anti-retroviral treatment trial</li><li>85th percentile for rate of decline in people living with ALS</li><li>Excellent results from neuropsychological testing</li><li>Excellent forced vital capacity</li><li>Excellent swallow study and speech</li><li>Electrophysiological results that support a diagnosis of ALS</li><li>No further need for EMG or nerve conduction studies</li><li>No further risk for Frontal-Temporal Dementia</li><li>A connection to the NIH and to Dr. Kwan for future consultations.</li></ul><div>When it's time for closing questions, PeggO begins. "Does the NIH have plans to expand this study to become longitudinal, tracking patients' progress over time?"</div><div><br /></div><div>"Wouldn't it be more helpful to understand how and why patients progress over time, rather than just having data from one point in time?" she asks.</div><div><br /></div><div>"Absolutely. We would love to do that; however, at this time we do not have the bandwidth for that kind of study," responds Dr. Kwan gently.</div><div><br /></div><div>JimBob clarifies, "Will every piece of data collected in the three days be used for research?" </div><div><br /></div><div>Dr. Kwan assures him it will. </div></div><div><br /></div><div>As they stand to say goodbye, Dr. Kwan thanks JimBob and Peggo once again. It feels to JimBob like Dr. Kwan would welcome an embrace. More than likely, ALS takes its toll on the doctor's heart too.</div><div><br /></div><div>The three doctors linger, bowing slightly, tipping their heads, smiling and saying thanks and goodbye a few more times.</div><div><br /></div><div><u>4 p.m.</u> </div><div>On the way back to the hotel, JimBob and Peggo begin to realize their cumulative fatigue from three full days of highs and lows at the NIH. </div><div><br /></div><div>Each evaluation held the power for good news or disappointment. Each test brought the possibility for increased hope or further evidence of functional decline. Each encounter carried its own risk, and required JimBob and PeggO to muster steady courage, stamina and good humor. </div><div><br /></div><div><u>5 p.m.on the road back to Charlottesville</u></div><div><u><br /></u></div><div>"Well, are you glad we came," asks PeggO from the driver's seat.</div><div><br /></div><div>"I am," responds JImBob, "I'm grateful for the opportunity." </div><div><br /></div><div>"I hope it helps someone down the line.," he continues.</div><div><br /></div><div>"You never know,,, you might be HERV-K positive and then you could try ARVs" says Peggo with a hopeful tone.</div><div><br /></div><div>"That would be so cool..." nods JimBob, "I would really like the chance to try ARVs."</div><div><br /></div><div>'I want you to take ARVs too... it would be amazing if ALS could be the next HIV story," adds PeggO.</div><div><br /></div><div>"Totally," says JimBob, looking out at the tree-lined streets of the passing Bethesda neighborhoods.</div><div><br /></div><div>"It's kind of unbelievable that no one at NIH is running longitudinal studies for ALS," reflects PeggO.</div><div><br /></div><div>"And there is no central coordination, like in the HIV days," adds JimBob. "There really doesn't seem to be anyone in charge, just a bunch of silo'd labs doing their own things."</div><div><br /></div><div>"It's enough to be a patient, and now we're supposed to figure out how to get the NIH organized," grumbles PeggO.</div><div><br /></div><div> As they move into rush hour traffic, the mood in the car goes blue-gray. </div><div><br /></div><div>"I thought you were going to jump across the room when she kept zapping me for the nerve conduction," interjects JimBob, knowingly changing the subject.</div><div><br /></div><div>"I was ready to,,," says PeggO without missing a beat. </div><div><br /></div><div>"I could tell. I could totally feel your energy in the room. It was great," smiles JimBob.</div><div><br /></div><div>"We're a team," responds PeggO.</div><div><br /></div><div>"Yep," sighs JimBob quietly looking away, "We're a team."</div><div>---------------------------------------------------xxxxxxxx--------------------------------------</div><div><br /></div><div>If you want to help or learn more about how to help with advocacy for ALS, put your name on the <a href="https://iamals.org/share/">ALS Map</a> .</div><div><br /></div><div>Or, sign up for the Hummingbird Fund newsletter to learn about the work of the Plews-Ogan family and friends, as they fight for better treatments for people living with ALS. <a href="thehummingbirdfund@gmail.com ">Hummingbird Sign UP</a></div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzX8NF7tcaaDqYQcWcTaKU0a_0rQwInhblHJ6aJ6qOgd85Nube0bbDe0YQtxRR0Ywl0Zx4yyQ2DMPvCj19Byz0m9bkVIR9MhFw7KXooZ_20qOtvO6bypqxVZcNMmg4XiTe_C2BPg87uUd0Hv80gexPud4Y9-IUEWmBfdr5r8mGWokbPbsat01pyi5o/s251/image.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="201" data-original-width="251" height="201" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzX8NF7tcaaDqYQcWcTaKU0a_0rQwInhblHJ6aJ6qOgd85Nube0bbDe0YQtxRR0Ywl0Zx4yyQ2DMPvCj19Byz0m9bkVIR9MhFw7KXooZ_20qOtvO6bypqxVZcNMmg4XiTe_C2BPg87uUd0Hv80gexPud4Y9-IUEWmBfdr5r8mGWokbPbsat01pyi5o/s1600/image.png" width="251" /></a></div></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><p></p></div></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com1tag:blogger.com,1999:blog-8151210006067069609.post-43020089299015166482022-06-02T11:40:00.002-07:002022-06-05T14:55:50.372-07:00The pilgrimage continues<p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px;"><div class="separator" style="clear: both; text-align: left;"><span style="text-align: left;">A few years ago, our son William led a pilgrimage along the Camino de Santiago in northern Spain. He had a small flock of pilgrims, or peregrinos as they are known along the Camino. Exactly two peregrinos: his parents.</span></div></blockquote><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUOM25uM7_B4MHIJoV9RmmH9hlFM6wrG76YQH_BMGCV7u4kfW_ZDb7la5kxriFYxjUfS4x57kA2ktkztzX5nmhK6tUBG9Bj4SzBajSMK1Bp2d4KRGaogSS408hdyI6TR7k4wpGPuyGdc5hUCWaasXktDTiTyvfYplXyjN9Xp3JO6bOY2RGe805UuVI/s3527/A4DC9B7C-BBF6-4DD0-819B-20449DEEC1EA_1_201_a.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2361" data-original-width="3527" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUOM25uM7_B4MHIJoV9RmmH9hlFM6wrG76YQH_BMGCV7u4kfW_ZDb7la5kxriFYxjUfS4x57kA2ktkztzX5nmhK6tUBG9Bj4SzBajSMK1Bp2d4KRGaogSS408hdyI6TR7k4wpGPuyGdc5hUCWaasXktDTiTyvfYplXyjN9Xp3JO6bOY2RGe805UuVI/s320/A4DC9B7C-BBF6-4DD0-819B-20449DEEC1EA_1_201_a.jpeg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">William selected the route, made the reservations, provided the pre-reading and maps. He had been well-schooled by his mentor George Greenia at the College of William & Mary. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">On our first night, as we sat together preparing for our first walk the next morning, William suggested that we focus our daily conversations around some of life's biggest questions. And, he had some suggestions for us to consider. (Like I said, he had been well-schooled.)</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And so it went. Each night along the Camino, at dinner, we would unpack the question for the next day. As we walked, moving in and out of time together and time alone, we moved in and out of conversations surrounding the day's big question.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">One of our conversations lingered across many days. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Where is a God? How do we know God? How do we experience God?</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Little did William know at the time, but his peregrinos had both written their undergraduate theses on topics in the Philosophy of Religion. Peggy: The problem of evil and the nature of suffering. Jim: The nature of a Deity in African Traditional Religions.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">As I remember it, the conversations were wide and deep and satisfying.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijSwcnom3hdIcFvnuI9GcIHU5gnmNRaHDs5IGM1eTAs6dS_lEesa-tpna3vofZJfPzvtWrQPJGomznYB8HgKgDXry9E56N2OBZ3uQl_BjbYKqSP0UhD6-G9vwUrgrBvCPh7QunYTA2PReJGegT8rmzFwJmZzqcdAusVc0LKYdLgyvFwS4uWhf16gkB/s3725/D73FF0DF-79DD-41E5-B851-E839883D4207_1_201_a.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2597" data-original-width="3725" height="223" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijSwcnom3hdIcFvnuI9GcIHU5gnmNRaHDs5IGM1eTAs6dS_lEesa-tpna3vofZJfPzvtWrQPJGomznYB8HgKgDXry9E56N2OBZ3uQl_BjbYKqSP0UhD6-G9vwUrgrBvCPh7QunYTA2PReJGegT8rmzFwJmZzqcdAusVc0LKYdLgyvFwS4uWhf16gkB/s320/D73FF0DF-79DD-41E5-B851-E839883D4207_1_201_a.jpeg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>I have no doubt that Erin and Hal would have enjoyed this pilgrimage and the exploration of Life's Big Questions, since our dinner conversations with them often move into the same open waters. </div><div style="text-align: center;"><br /></div><div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYFoBCqJrKsL3d6QICfa01J6PFxBd4oiFbQHdTG2_ZegKs6KHUrv46jCFE_1OFy3z0DRg9Yn0umM_QiXFRvypiIOhOQWn9s2MG-HKPHaVyw1SsvrE9dxiepcXN_rBtDVSspxmGBt8thEesKWAk_Iq-F-Z-x9DLt43qe7PudJtxQeAkK2yRVTkhZneC/s259/cardinal.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="194" data-original-width="259" height="194" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYFoBCqJrKsL3d6QICfa01J6PFxBd4oiFbQHdTG2_ZegKs6KHUrv46jCFE_1OFy3z0DRg9Yn0umM_QiXFRvypiIOhOQWn9s2MG-HKPHaVyw1SsvrE9dxiepcXN_rBtDVSspxmGBt8thEesKWAk_Iq-F-Z-x9DLt43qe7PudJtxQeAkK2yRVTkhZneC/s1600/cardinal.jpeg" width="259" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">This morning I sat listening for God. I sat with my coffee in hand, and I waited. Our contemplation garden offers a natural calm for waiting. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I soon heard the birds calling from every direction. They had been calling before I set my ear to listen, of course. Songs. Stories of the night. Advertising jingles of love.</div></div></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">A sole female cardinal chirped to my right. In a flash, she swooped into the Beauty Bush directly in front of me. From 3 feet away, she looked me straight in the eye and chirped several more times. Cocking her head ever so slightly, she chirped at me.</div><div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">This bird knows me. She knows I sit in this garden most mornings, and she knows I will fill her feeder, which at this moment stands empty. She greets me and she surprises me, and she reminds me to take care of her. If I listen, she beckons my response.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">The pilgrimage continues.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRESLjx3qBBF3wr7lRbSGTmK1IROhIQpPO1TW1zyngp6FS8LqugvYcQJle1j12tBndpLm31jck0BQphuSdIXVeYitfCsJfoudKQXc3WKhg43LeUzvCp2MeB_ZCGUM8ySFnaCbJaU4BtQVibXwtNgg47ClGgtooWPParxUZUvdylBgEKKshOzbSeyjs/s4032/7A46B628-062E-4336-860C-E299ACBC3FBA.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRESLjx3qBBF3wr7lRbSGTmK1IROhIQpPO1TW1zyngp6FS8LqugvYcQJle1j12tBndpLm31jck0BQphuSdIXVeYitfCsJfoudKQXc3WKhg43LeUzvCp2MeB_ZCGUM8ySFnaCbJaU4BtQVibXwtNgg47ClGgtooWPParxUZUvdylBgEKKshOzbSeyjs/s320/7A46B628-062E-4336-860C-E299ACBC3FBA.heic" width="240" /></a></div><p></p></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com4tag:blogger.com,1999:blog-8151210006067069609.post-11194746551089428422022-05-31T07:00:00.001-07:002022-05-31T07:00:53.251-07:00PeggO & JimBob visit NIH: Day #2 <p> 9 a.m. </p><p>The day begins with Peak Flow Testing in the Respiratory Therapy Department on the 5th floor. JimBob is an old pro at PFTs. PFTs are a hallmark data point for every patient with ALS, and the test is repeated at every ALS appointment. </p><p>ALS causes neuromuscular degeneration, which sadly means ALS causes the diaphragm to weaken over time. Patients with ALS lose their speaking voice because they do not have enough strength in the diaphragm to force air across the vocal cords. In the end, most ALS patients die of respiratory failure. </p><p>PFTs are a high stakes test in the land of ALS. The results are quoted like marathon times, with splits at 10K and the Half. JimBob knows his PFT numbers. JimBob always goes for a PR. Always.</p><p>The testing involves wearing a blue plastic clothespin that is produced from a clean cellophane wrapper. A disposable mouthpiece is attached to a long hose that is perched in front of JimBob who is ready to race. The hose drapes across a short void, linking it to a large, foreboding, stainless steel machine where the respiratory therapist (RT) stands to watch the results pour in.</p><p>JimBob's challenge is to blow as much air as possible through the hose, with as much force as possible, for as long as possible. JimBob watches the face of the therapist. His secret goal is to make her eyes pop out when she sees his numbers. </p><p>Actually, this test is less a marathon and more like a sprint. JimBob gets three attempts to best his PR of 120% for FEV1 and FVC. Of course, most people are happy with 100% predicted for height and age. Not JimBob, no way.</p><p>And today is his day!</p><p>"Quite remarkable," says the RT nodding. "124% predicted."</p><p>"It was all your coaching," JimBob says smiling.</p><p>Lefty and Righty are doing a happy dance while JimBob glides out of the lab to find PeggO. </p><p>"Excellent," says PeggO. "So far it's a very good day."</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeMyPw09dn1QGWbsWGqmpsywTYCfLXtTCUXF6njiMm6M9mnIcCWS1gDHV5Ds9VQzKdTfGqlueAX74EIRnJ0vPL-cmlA59UUwvR5-BolQcF_-RQ8VMiQhf0UaXUIxXumi8sIBgAtTme7CXd7X_hWzeOWnRCCz6bQc6g0uWchBzffX-tsw_w-7TiatoP/s4032/IMG_2164.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeMyPw09dn1QGWbsWGqmpsywTYCfLXtTCUXF6njiMm6M9mnIcCWS1gDHV5Ds9VQzKdTfGqlueAX74EIRnJ0vPL-cmlA59UUwvR5-BolQcF_-RQ8VMiQhf0UaXUIxXumi8sIBgAtTme7CXd7X_hWzeOWnRCCz6bQc6g0uWchBzffX-tsw_w-7TiatoP/s320/IMG_2164.HEIC" width="240" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p>9:35 a.m.</p><p>En route to Starbucks, before the next appointment, JimBob and PeggO find themselves in one of many long hallways, this one lined with black & white photos of mostly white men. Anthony Fauci is among them. The photos honor the NIH scientists who have won the prestigious Lasker Award. The Lasker is known in academic circles as the American Noble.</p><p>As JimBob reads their names and accomplishments, he is surprised to see Bernard Beryl Brodie, the namesake of PeggO's chair in medicine. Bernard B. Brodie (August 7, 1907 - February 28, 1989) was the first scientist to determine how neurohormones, like serotonin, effect the functioning of the brain. PeggO is a wisdom scholar at the University of Virginia, School of Medicine and this was their first meeting.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHig7GH2c4tsPQZHKHMXAQMqRFna94xrDSNKzLF0Frws0u60NmcaE4Xl5xYzpq9IQ5u1mIJJ2YnsbDMYZxb-XerpXsoU_oKD5Y31b7E4TkKXtZ7a8GBfWkgf_9kSXKofiXYuIdIBtKIOr3A9RtMC1bECzfNJ8sLcW-O2JvrmMUc2PDclovEP9RA5w1/s275/download.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="275" data-original-width="183" height="275" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHig7GH2c4tsPQZHKHMXAQMqRFna94xrDSNKzLF0Frws0u60NmcaE4Xl5xYzpq9IQ5u1mIJJ2YnsbDMYZxb-XerpXsoU_oKD5Y31b7E4TkKXtZ7a8GBfWkgf_9kSXKofiXYuIdIBtKIOr3A9RtMC1bECzfNJ8sLcW-O2JvrmMUc2PDclovEP9RA5w1/s1600/download.jpg" width="183" /></a></div><p><br /></p><p>10 a.m. Neuropsychological Evaluation</p><p>A small percentage of people living with ALS develop Frontotemporal Dementia. The neurologists refer to it as FTD. People with FTD have personality and behavior changes, like crying and cursing inappropriately. They also have problems with decision making, and language. </p><p>Tell a person with a rare disease, like ALS, that the chances are slim they will develop dementia, and they might just look at you, thinking OK, but I already have a rare disease and both my parents died with dementia.</p><p>JimBob is ready for high stakes test #2. </p><p>The psychologist is all business. They will have 2 hours to get through at least a dozen tests of reasoning, memory, language, logic, and depression.</p><p>Fortunately for JimBob, most of the tests are like puzzles. And JimBob likes puzzles. </p><p>"No one is meant to get 100% on these tests," instructs the psychologist. She smiles behind her mask, seated across from JimBob as though they are about to begin a match of chess.</p><p>This does not relax JimBob. He is ready to roll.</p><p>Test after test, puzzle after puzzle, they zoom along. The squiggly image of a double-decker bus is a tip-off for a test designed in Britain. This is useful to JimBob when a teapot, that does not look much like a teapot, pops up later. Cha Ching.</p><p>JimBob's favorite test required listing as many words as possible starting with the letter F. It is a timed test: 60 seconds. After F, they repeat the process with words starting with S, and again with words beginning with A.</p><p>The psychologist must write down all of the words as they are spoken. </p><p>Stop watch in hand, the psychologist actually says, "Ready, Set, Go!"</p><p>JimBob cruises along until he slams hard against the wall of expletives. He must not say too many expletives for fear of exposing the personality changes associated with FTD.</p><p>JimBob's mind races temporarily as he tries to get past "Fuck", and "Fucker" in the F's; "Shit" and "Shitfaced" in the S's; and "Asshole" in the A's. Frustrated and humored at the same time, JimBob tosses off Aardvark as a final A.</p><p>Little did JimBob know at this low point in testing that his peak effort was about to transpire gloriously: name as many animals as possible in 60 seconds.</p><p>Again, aardvark made the list.</p><p>JimBob's facility for animal names drew completely from the travel journals he has kept with his family over the years, collecting a lengthy log of animals sighted on vacations. JimBob began by continent, then zoos, then regions of the USA and finally to the common household and barnyard animals. When the psychologist ran out of room on her paper, she asked him to stop, well before the 60 seconds had elapsed.</p><p>JimBob had been determined not to be demented, and it turns out he is not.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwaiEeDDKTKPEPig4c0v2P2DXpsE9QOh66DZnRrHzjo7xhIE2zgAX_MDozUOgO2ekvCvPgiVDpQ0y0KKV7yxpnyscKPhH5cgFhSWXSqWKXpLosuIjsrIdSVV4igNIPYMi_tURvCohS9VAAzXMeR0BFL5_ipWZpGYMVmRR_bE93ys6uKtWUkxhlqTv8/s3230/IMG_5115.tiff" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2153" data-original-width="3230" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwaiEeDDKTKPEPig4c0v2P2DXpsE9QOh66DZnRrHzjo7xhIE2zgAX_MDozUOgO2ekvCvPgiVDpQ0y0KKV7yxpnyscKPhH5cgFhSWXSqWKXpLosuIjsrIdSVV4igNIPYMi_tURvCohS9VAAzXMeR0BFL5_ipWZpGYMVmRR_bE93ys6uKtWUkxhlqTv8/s320/IMG_5115.tiff" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p>After lunch, the much discussed spinal tap.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggYGQlJp_1z6F_vLA-XpCPUX4soXenJ9ADhMJPUcHLmi3KaRLObctcH4bjfuyBdGJr4mYGRvVKcCErscdRGT_WHIN2-uBv9onhVuYmgO2CUxN_9qanVmZJdafsySRqiuwp5uIfzt7LLq58pGd0fiOT7Fzn8IbTG2ad3h3zyfJ22ztV4FbVESrs_0PP/s1296/IMG_1516.tiff" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="972" data-original-width="1296" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggYGQlJp_1z6F_vLA-XpCPUX4soXenJ9ADhMJPUcHLmi3KaRLObctcH4bjfuyBdGJr4mYGRvVKcCErscdRGT_WHIN2-uBv9onhVuYmgO2CUxN_9qanVmZJdafsySRqiuwp5uIfzt7LLq58pGd0fiOT7Fzn8IbTG2ad3h3zyfJ22ztV4FbVESrs_0PP/s320/IMG_1516.tiff" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p>1 p.m. PeggO and JimBob enter an outpatient procedure room for a lumbar puncture, commonly known as the spinal tap. This is a purely elective procedure to collect samples of JimBob's spinal fluid for research purposes. <br /></p><p>As a pediatrician, JimBob has done many LPs on babies as part of the newborn sepsis workup. "In the right hands," an LP is generally easier than drawing blood on a baby. JimBob is not worried, although he detects a bit of angst in the room. PeggO decides to wait outside due to the perceived angst. </p><p>"You'll be fine. I'll be right outside." PeggO does not really want to leave, but she is an expert at reading the room.</p><p>JimBob sits on the edge of the bed, hunched over the bedside table. Taryn, their NIH nurse practitioner chats about what she is doing to prepare. Dr. Kwan offers a pillow for the bedside table. They have reviewed the risks in two separate occasions as part of consent. There are no real benefits to JimBob, since this is for research. </p><p>They all chat collegially.</p><p>The first stick is a no go. Too low. No worries it happens.</p><p>The second stick produces a sharp pain in the spine and left flank. </p><p>"Yeouch!" JimBob yelps, prompting Dr. Kwan to come around to the other side of the bed.</p><p>"The spinal fluid is flowing. She got it," he says softly.</p><p>Dr. Kwan gives Righty a few gentle pats, and just before it might seem like a simple "there, there" pat, Dr. Kwan allows his hand to rest gently with Righty.</p><p>"She is almost done. The fluid is clear. Everything looks good."</p><p>And the LP is done. Taryn has 4 tubes of spinal fluid on ice, and is on her way to the 2 labs who need ALS spinal fluid for their research.</p><p>PeggO returns and reads JimBob's face. She lets him be his cheerful patient self. She knows they will talk later.</p><p>Dr. Kwan wants JimBob to lie flat for an hour. To make use of the time, they deliver a large IPad which connects to the genetic counselor for neurology. She uses the hour to collect a genealogical history, since 20% of ALS is genetically familial. Gratefully, JimBob's genetics have already been tested and he is in the clear on this one. </p><p>4 p.m.</p><p>On the way home, PeggO asks about the pain in JimBob's back. JimBob asks about what the pain might be. PeggO speaks in a reassuring doctor's voice. The pain is not unusual; an auxiliary nerve likely got tweaked as the needle went in.</p><p>"You can take a couple of Advil and lie down while Delta and I go for a run. Then, we'll find some Mexican food for dinner."</p><p>PeggO's voice reveals the weariness they are both feeling from a day of scientific inquiry. JimBob is fairly glad that NIH Day #2 is now in the books.</p><p><br /></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com1tag:blogger.com,1999:blog-8151210006067069609.post-16494336644527729942022-05-25T11:44:00.004-07:002022-05-28T17:42:20.352-07:00Peace of Wild Things<p>Robb Elementary School, Uvalde, Texas, May 24th, 2022...</p><p>When there are no more words to approximate the utter gut-wrenching anguish of a desperately grieving parent, whose child has been slaughtered, at school, during reading group, or a spelling test...</p><p>When the complexity of a common reality like owning and using a gun to commit mass murder on a regular Tuesday morning in May...When this complexity overwhelms the simple truth that, yet again, an angry teenager with a loaded gun is never going to end well...</p><p>When fellow citizens, who are themselves parents, grandparents, teachers, and siblings, continue to disagree vehemently on the moral response to a vast human tragedy such as this..</p><p>How do we find hope? Without hope, how do we march on?</p><p>I have little space in my heart for hope this morning. My chest is tight with rage and sorrow. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSOPuCZQKDWcOWFqeFz1WvDHuncTXGPVjEjTxodhAH4qgp-WPJPIvy4zIKuOnDt5oZTeuBZunHmACdvHmYrIplbgfFg6oK716UCgkdR9xabmZLo6XXtFkCTvOGQkIsNLtLIh-m4YeU8NDAU6uZv5nxtL3pY_b1VZIvL14sAFayePH_G3ce2X-cy04k/s4032/IMG_2190.HEIC" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSOPuCZQKDWcOWFqeFz1WvDHuncTXGPVjEjTxodhAH4qgp-WPJPIvy4zIKuOnDt5oZTeuBZunHmACdvHmYrIplbgfFg6oK716UCgkdR9xabmZLo6XXtFkCTvOGQkIsNLtLIh-m4YeU8NDAU6uZv5nxtL3pY_b1VZIvL14sAFayePH_G3ce2X-cy04k/s320/IMG_2190.HEIC" width="240" /></a></div><p>This morning, like most mornings, Delta Mae joins me in contemplation. She sprawls next to me in a patch of sunlight, and waits for me to be done. Some mornings, like this morning, Delta comes to me for a snuggle. She senses my mood and needs to connect. I am grateful.</p><p>Peggy has created many gardens full of perennials that bloom from Spring to Fall. We call this particular garden, in the center of the side yard, our Contemplation Garden. A small stone patio, a single table and chair, and gentle morning sun have made it a natural spot to sit and be still.</p><p>Did you know that nuthatches favor fur for their nests? I see them swoop in and pluck from Delta's haunches or tail. Delta used to flinch reflexively when she felt the pluck of her fur, like a horse does when it wants to rid itself of flies in the field. Nowadays, Delta embraces the stillness and the silence, and the nuthatch are happy with their prize.</p><p>The garden surprises me with something nearly every day. I saw diamond chips nestled amongst ferns today. Who knew that leftover raindrops on cobwebs could be so dramatic?</p><p>We have a box turtle who lives in the contemplation garden. Invariably, this plodding reptile makes me feel happy.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh962rSuzQgK1-KmzJauxe2Mc5ZkTgxcT6Jxk_dQgjinE8Fr_r5QGXu4i8dpmE9cGPh01_6Ef8UQc8X373WmK-RHCcximS3OqJVOn5ki0Y9ohEbbVERnzuAdQryOcxJ30t7jjnHTPqze7S7WvEaGRPM58kAYoK575KDrzHIBgLJ0rN0x_qteEYDWc29" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="300" data-original-width="600" height="160" src="https://blogger.googleusercontent.com/img/a/AVvXsEh962rSuzQgK1-KmzJauxe2Mc5ZkTgxcT6Jxk_dQgjinE8Fr_r5QGXu4i8dpmE9cGPh01_6Ef8UQc8X373WmK-RHCcximS3OqJVOn5ki0Y9ohEbbVERnzuAdQryOcxJ30t7jjnHTPqze7S7WvEaGRPM58kAYoK575KDrzHIBgLJ0rN0x_qteEYDWc29" width="320" /></a></div><br />Peggy has planted mostly native plants in the garden, like milkweed that will welcome monarch butterflies. I added a ceramic blue bird bath, on sale at Kroger, mostly for color, during a bland, brown period in November. <p></p><p>This past fall, September thru December, I sat in contemplation and watched the garden slowly wither into winter. I knew I likely had ALS as the weakness<span> in my left hand became more real. Sitting in contemplation with trees losing their leaves and flowering plants sinking back into the soil, I remember feeling an odd and unexpected solace. My reality of ALS seemed shared by a greater reality. My truth was held up in a wider truth.</span></p><p>William McNamara defines contemplation as, "...a long loving look at the real." This works for me. The practice of contemplation reliably creates space in my heart, some might say in my soul. The space makes room for hope.</p><p><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEg48-JOfFOt14OWAdYAbuzyXqRgZcw0-5wgymYxJtr-sa9BKo3rukkR47Wp_sIVSQFtNyMaCKP8NvaLljcERy5qeT7S7Rgch_UGpJe9x_7zk1IZl7bZg_YDrtk7N49Yi73S9mU2UeIREqJQPdQ4jh-OG5rvAlexe0qscDc7ksWKrJyJjfNn5zWI0F6z" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="640" data-original-width="640" height="323" src="https://blogger.googleusercontent.com/img/a/AVvXsEg48-JOfFOt14OWAdYAbuzyXqRgZcw0-5wgymYxJtr-sa9BKo3rukkR47Wp_sIVSQFtNyMaCKP8NvaLljcERy5qeT7S7Rgch_UGpJe9x_7zk1IZl7bZg_YDrtk7N49Yi73S9mU2UeIREqJQPdQ4jh-OG5rvAlexe0qscDc7ksWKrJyJjfNn5zWI0F6z=w286-h323" width="286" /></a></div><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com2tag:blogger.com,1999:blog-8151210006067069609.post-20939159412730081532022-05-22T18:05:00.002-07:002022-05-22T19:10:56.377-07:00PeggO & JimBob visit the NIH: Day #1<p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3U0-ysUCkul80xx5VGT5Pb12G4yV59nERC5Wk1OHyg6X87JrZewZscokNJRnZrL-JHJSLGkxRCM6rIJU0bAf7F9GPJZ1VkVV-Z9mp5MSUZ9SKHihkjW858l3hNp4jrrwWQmMnyUcopBuWfeXYBXbsl7taZHH3MwFJ8hdOYKXrb6egfN5e-un7MWOR/s3024/IMG_2176%202.heic" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2717" data-original-width="3024" height="357" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3U0-ysUCkul80xx5VGT5Pb12G4yV59nERC5Wk1OHyg6X87JrZewZscokNJRnZrL-JHJSLGkxRCM6rIJU0bAf7F9GPJZ1VkVV-Z9mp5MSUZ9SKHihkjW858l3hNp4jrrwWQmMnyUcopBuWfeXYBXbsl7taZHH3MwFJ8hdOYKXrb6egfN5e-un7MWOR/w397-h357/IMG_2176%202.heic" width="397" /></a></div><br /> The National Institutes of Health in Bethesda, Maryland is the world's largest center for biomedical research. The NIH is comprised of 27 clinical centers, among them the NINDS, or the National Institute of Neurologic Disorders and Stroke. The NINDS has an enticing tag line for anyone with ALS: <p></p><p style="text-align: center;">"Solving the Mysteries of the Brain to Improve Health."</p><p style="text-align: left;">The mission of the NINDS is even more hopeful and specific:</p><p style="text-align: center;"> "...to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people."</p><p style="text-align: left;">When our neurologist at UVA suggested that a visit to the NIH was an absolute possibility, and that he would make the contacts for us, send all of the records, and include a summary note of referral, we were incredibly grateful. </p><p style="text-align: left;">JimBob and PeggO were ready to pack their bags for an adventure at the world famous NIH.</p><p style="text-align: left;">I'm sure someone mentioned this along the way, but the truth of the matter got lost in the excitement: the NIH is purely a research institution. Every patient is part of a research study. Our visit to the NIH would be, first and foremost, our contribution to medical science. Every piece of data would be used to "seek fundamental knowledge", and "reduce the burden" of ALS "for all people."</p><p style="text-align: left;">The first inkling that this was going to be an intense 3 days came with the introductory email which contained a secure link requiring the usual sign on and password. Once inside this secure, digital location, I found 8 attachments with lengthy details about security, COVID, parking, getting around the campus, our hotel reservations, and finally the agenda. Our days would begin at 8 am, and end around 4, with 60 minutes for lunch at noon. They suggested in several of the documents to bring snacks.</p><p style="text-align: left;">We already know that PeggO is all about having snacks for JimBob. In an effort to increase compliance and efficiency, PeggO has added salty, roasted pistachios to the snack pack. Genius.</p><p style="text-align: left;">The first small glitch surfaced when we discovered that the NINDS contracts with 2 lovely Bethesda hotels, neither of which is dog friendly. This was news to Carol who handles all of the arrangements for patient visits at NINDS. We suggested the Hyatt Bethesda, 1.4 miles from the NIH main gate, and fully dog friendly.</p><p style="text-align: left;">After a bit of back and forth through the secure portal, Carol agreed to allow us to submit the bill from the Hyatt for reimbursement. Under no circumstances, however, would the NIH cover the $60 doggy surcharge.</p><p style="text-align: left;">Fair enough. And we were off.</p><p style="text-align: center;"><span style="font-size: medium;"><b><u>Day #1</u></b></span></p><p style="text-align: left;">As if ALS is not confusing enough, with all of its twists and turns, jargon and choice of paths to follow, the NIH is also a giant campus with a choice of no less than 5 entrances, 2 of them on Wisconsin Avenue. </p><p style="text-align: left;">The Hyatt Regency Bethesda is also on Wisconsin, a little over a mile away from the NIH campus. Our Day #1 schedule starts with a nurse screening, and consent signing at 8 a.m. Peggo hates to be late so we set out promptly at 7:25 a.m. Remember the part about PeggO hating to be late; it becomes highly relevant. </p><p style="text-align: left;">JimBob, liking maps as he does, sits in the passenger seat with a paper map printed from one of the many informative attachments referenced above. JimBob can store and find electronic files with the best of them, however, the maps are quite small on a phone screen, and as it happens not that big on paper. Since they are just headed down Wisconsin, the map seems superfluous, but it adds a degree of importance to JimBob's day.</p><p style="text-align: left;">Turning into the first NIH entrance on Wisconsin at 7:37 a.m. seems an early triumph, until the handsome, tall, masked security guard waves us to stop well ahead of his guard house. This entrance no longer admits visitors. We will need to proceed up Wisconsin, past the second NIH entrance and turn left on West Cedar for the Main Visitor entrance. </p><p style="text-align: left;">At 7:46 a.m. we arrive at West Cedar. The tension is palpable as we wait in the left hand turn lane. After a full cycle of lights, with nary a left turn arrow, we spot the small white sign that says, "No left turn 7:30 to 9 a.m. weekdays". It is now 7:52 a.m.</p><p style="text-align: left;">JimBob knows better than to say <u>anything.</u> Lefty and Righty sit quietly clasped and sweaty.</p><p style="text-align: left;">As the light turns green, a most unexpected and glorious event transpires.</p><p style="text-align: left;">Peggo grips the steering wheel firmly, and with a steely eye, puts the pedal to the metal like never before. Our nondescript, 2013 Prius rockets across 4 lanes of on-coming traffic, and sails down the sedate, tree-lined West Cedar Avenue.</p><p style="text-align: left;">Lefty and Righty go wild. Fists in the air, they dance along with JimBob's conga-line chant, "Go Peggo, Go Peggo, Go Peggo!" It's 7:53 a.m.</p><p style="text-align: left;">Arriving at the the West Cedar entrance, PeggO is met with yet another challenge to earnest punctuality: TSA type security. Everyone and everything electronic would need to come out of the car. 7:54 a.m.</p><p style="text-align: left;">JimBob is generally cheery, and given his recent brush with Indy 500 excitement, he might be feeling even cheerier, affably greeting everyone and asking about their children and grandchildren. PeggO, shall we say, is more conscious of the time. 7:55 a.m.</p><p style="text-align: left;">On to the parking garage. More security. Open the hatch, wipe things down with the horrible wand that always gets us pulled out the TSA line. This time we prevail and are at the COVID-screening check point by 7:58 a.m. Snacks and schedules at the ready, we have made it.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicVMO_tOhnlMsaU59JdS7t0UgOQygYWmMEA1heM9XtfQ5wsTsyhs18Wf0Yl_yYex1puu7aTQz8Mlgkyg8Ynsi0774KRa791IHTLEseBmMH_g3SmHeda5DHHP1SqLjAR9jQ7_y8KMkRPVGnVcyrbDkw8WgjweqLDG3Jb7eNDgSymiE7LxL2UmAUC75_/s3088/67439749707__2A6B5247-AB85-4BC3-8E5A-2B44D0C6CB09.HEIC" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2320" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicVMO_tOhnlMsaU59JdS7t0UgOQygYWmMEA1heM9XtfQ5wsTsyhs18Wf0Yl_yYex1puu7aTQz8Mlgkyg8Ynsi0774KRa791IHTLEseBmMH_g3SmHeda5DHHP1SqLjAR9jQ7_y8KMkRPVGnVcyrbDkw8WgjweqLDG3Jb7eNDgSymiE7LxL2UmAUC75_/s320/67439749707__2A6B5247-AB85-4BC3-8E5A-2B44D0C6CB09.HEIC" width="240" /></a></div><p style="text-align: left;">Top of the list is my first and only COVID test (tears and coughing for 10 long seconds), then we spend a full 90 minutes reviewing and signing consent forms. Lots and lots of consent forms, including consent for a spinal tap, genetic testing, and many lab analyses.</p><p style="text-align: left;">Last stop before lunch: the lab.</p><p style="text-align: left;">Taryn, our nurse practitioner, accompanies us to the lab with a small insulated cooler. She will hand carry the blood samples to their respective research laboratories on ice.</p><p style="text-align: left;">It is worth noting here that JimBob is not fond of getting blood drawn. It hurts and the phlebotomist often needs more than one attempt. Blood draws test JimBob's cheerfulness. </p><p style="text-align: left;">The phlebotomy lab at the NIH is a warren of small rooms set up for taking blood. JimBob is assigned the "PEDS ROOM" which provides some comfort. The Peds Room has smaller needles, and a phlebotomist with more skill at sticking smaller veins. The Peds Room also has brightly colored balloons painted on the walls.</p><p style="text-align: left;">As the phlebotomist is setting up, JimBob eyes an entire rack of multi-colored vacutainers. Many of these tubes have colors and speckles you would never see in a typical medical office or hospital lab.</p><p style="text-align: left;">Gazing down at the rack full of tubes, JimBob asks quizzically, "Are those all for me?"</p><p style="text-align: left;">"They certainly are," chirps the phlebotomist without looking up.</p><p style="text-align: left;">JimBob counts 15 tubes. He counts again. Still 15.</p><p style="text-align: left;">Truthfully, what did he expect at the World's Largest Center for Medical Research?</p><p style="text-align: left;">After lunch, JimBob and PeggO spend the afternoon with Dr. Justin Kwan, a research neurologist who specializes in ALS. He is a tall, thin man, stylish and precise. Dr. Kwan looks too young to have accumulated all of his expertise and titles. </p><p style="text-align: left;">Dr. Kwan (everyone calls him Justin) sits facing us, almost knee to knee, with a legal pad on his lap, and begins to take the history. He listens carefully. No detail is too small. No anecdote is disregarded. He writes it all down, pausing to think about what he hears. </p><p style="text-align: left;">Recounting the unfolding story of ALS is a bodily experience, and it is emotionally fatiguing. Retelling the story illuminates the early hope that thumb weakness is just a bit of arthritis. The story recounts the early speculation that muscle weakness and atrophy in the left hand are due to a narrowing in the spine that is commonly repaired with surgery. Telling the story from the beginning reminds JimBob and PeggO of the anxiety they carried silently. This was always going to be ALS.</p><p style="text-align: left;">JimBob is generally a sunny patient, which poses a conflict when telling the ALS story, which is generally a dark one. The continual slow decline in function, which results from the on-going death of motor neurons, is more naturally told by JimBob from the sunny side. He acknowledges a SLOW decline, hopefully due to the POSITIVE effects of the 23 pills he takes everyday. He often turns to PeggO to fill in the gaps or for her perspective. They are team story-tellers.</p><p style="text-align: left;">Dr. Kwan has elicited a detailed history of ALS from hundreds of patients. He knows how to pace the interview, creating trust with a true curiosity that never feels out of line. He creates intimacy for JimBob and PeggO to be themselves. The three of them share an authentic mixture of laughter and silence. They recount stories of coming up the ranks in training, and of supervising students and residents. They commiserate about being on call and about the honor and privilege of caring for patients. Dr. Kwan knows how to be the doctor's doctor.</p><p style="text-align: left;">Next up: the familiar neurological exam to document abnormalities in strength, coordination, and dexterity. Dr. Kwan saves Lefty until last. With a rare tenderness, he champions Lefty's efforts, and comments soley on Lefty's successes. Dr. Kwan's exam is thorough and dignified.</p><p style="text-align: left;">At the end of 2 1/2 hours together, Dr. Kwan summarizes his findings and invites questions. PeggO has a detailed list of questions in her bound diary. She goes first. PeggO is pleased to have the time with an expert on ALS. The conversation soon morphs into a mini-journal club, referencing and critiquing scientific studies. Dr. Kwan receives questions with genuine interest. He is engaged in the opportunity to share the finer details of research. JimBob especially appreciates the way Dr. Kwan can describe the limits of knowledge. As always, PeggO writes it all down.</p><p style="text-align: left;">As the mood naturally settles into closure, Dr. Kwan slides his chair even closer to share an image on his iPhone. He has applied JimBob's data to a nomogram created from thousands of ALS patients. JimBob's rate of decline is in fact slow, and ranks among the top 85% of slowest progression. Neither JimBob nor PeggO are typically content with 85%, but in this moment they are elated. Could this be true? JimBob asks for more detail about the data. Dr. Kwan confirms the accuracy without interpreting what it might mean for JimBob and PeggO. What it means for JimBob and PeggO is more hope for more time in each other's arms, literally.</p><p style="text-align: left;">4 p.m.</p><p style="text-align: left;">The exit from the NIH clinical center is as circuitous as the entrance, and requires driving 2 floors deeper into the garage to locate the sole exit. The exit is no where near the previous entry, so another masked security guard offers a complicated set of directions which land us, no joke, at the Wisconsin Avenue guard station where we had earlier that morning been turned away. This time the guards wave us through and Day #1 is in the books.</p><p style="text-align: left;"><br /></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com5tag:blogger.com,1999:blog-8151210006067069609.post-85933892378408872612022-05-13T17:03:00.000-07:002022-05-13T17:03:54.649-07:00Proximity<p></p><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjO6ZTPLb4jQigiYYLX0-QVswpuP2MiSkw9WtbpEi_wq6g754bASoL62FpEOHdEnECHCX-tzZZcVnkn-ydFxwhSE50-mwhEupl0Ajuo6HREKPEm-ruwub4M37XZnZXgZ_Ghnnyvt2gN40LYxAxyhYw3LmHU1AX3yKCMzFceAcg-uC910q0vS81rSxCh" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjO6ZTPLb4jQigiYYLX0-QVswpuP2MiSkw9WtbpEi_wq6g754bASoL62FpEOHdEnECHCX-tzZZcVnkn-ydFxwhSE50-mwhEupl0Ajuo6HREKPEm-ruwub4M37XZnZXgZ_Ghnnyvt2gN40LYxAxyhYw3LmHU1AX3yKCMzFceAcg-uC910q0vS81rSxCh" width="320" /></a></div><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Yesterday, May 12, 2022, my mom would have been 93 years old. Peggy and I were on the National Mall with Lefty and Righty planting 6,000 flags to honor people living with ALS, and people who have passed away from ALS. Each flag bore a name and a date of diagnosis. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhCF1ndKAvb1Mq5I8XElCRaay2fpzlbrKGFoqQ6F75HxhQZTKyC-G57XZWwBb-peJIDrji1hakThT3JYF3FRne4vj07bT8NLdxSDlHF1kpzEugSJoFAcqZV9P0cmEiY4_Y1arhK6icubRwBjfcjgGtGBBRP6oYQlBO0OReOcKThtObDiZYFwi8sfrdH" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1024" data-original-width="768" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEhCF1ndKAvb1Mq5I8XElCRaay2fpzlbrKGFoqQ6F75HxhQZTKyC-G57XZWwBb-peJIDrji1hakThT3JYF3FRne4vj07bT8NLdxSDlHF1kpzEugSJoFAcqZV9P0cmEiY4_Y1arhK6icubRwBjfcjgGtGBBRP6oYQlBO0OReOcKThtObDiZYFwi8sfrdH" width="180" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div></div><p></p><p></p><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: left;"><span style="text-align: left;">A strong breeze caused the flags to flicker and buzz across the hillside, like thousands of plastic whirligigs on sticks. To make it a bit easier to locate a name, the flags were loosely organized, alphabetically, in rows by first name. Honestly, I was hesitant to look for my flag. I was not at all sure how it would feel to see my name among all the others with ALS. </span></div><div class="separator" style="clear: both; text-align: left;"> </div><div class="separator" style="clear: both; text-align: left;">I walked the rows like a gardener inspecting Spring seedlings. I saw Jims, and Jimmys, and Jimmies, and Jameses. Row upon row upon row, I walked silently, sometimes kneeling for a closer look.</div></div><p></p><p></p><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEj0BLosAZzRdzuWZcGtd6WEfq686AVdHsNYu4hcoDHdmKK0uAkVhXwMBfdgE76mdFsgaIiJ54oaoLOm4iEHxucaQicIsUavWdpes97hAioGw5ljNG_hd7c0d6MZ-leLiTQ-6pbnUlb5Rde8FeaAjOs1O08blf7i04w2A13NY3eEUr1yeKfUCi2-lx5q" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1024" data-original-width="768" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEj0BLosAZzRdzuWZcGtd6WEfq686AVdHsNYu4hcoDHdmKK0uAkVhXwMBfdgE76mdFsgaIiJ54oaoLOm4iEHxucaQicIsUavWdpes97hAioGw5ljNG_hd7c0d6MZ-leLiTQ-6pbnUlb5Rde8FeaAjOs1O08blf7i04w2A13NY3eEUr1yeKfUCi2-lx5q" width="180" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div>When I came upon my flag, with my name, and my age, I felt a surprising affirmation in my chest. I felt solemn, and connected. I sensed that I was among new kin. I felt whole and at peace.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">An hour later, my son William and I addressed the assembled gathering. We chose a call to action as our offering. "The voices and stories of people effected by ALS will be the driving force of progress. Our activism, our 'good trouble' will be our hope together."</div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEihxF9g3iDCTQz2BXiJSUqJVQZ8kj-OPu_fticUDDmI-TFCmP1A945Gf8nO1O3hxczhMZjmloVEZnjE25RxIw1rQ_DqXDluvW1TvaZcjRqgD6Qppggk2gxj5Ic5IQjQCw1NLlhEh03eBp7kVd4puzaVSQr96WCM0m6ixniZhYzt5j94G56a-Lh56rlC" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1024" data-original-width="768" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEihxF9g3iDCTQz2BXiJSUqJVQZ8kj-OPu_fticUDDmI-TFCmP1A945Gf8nO1O3hxczhMZjmloVEZnjE25RxIw1rQ_DqXDluvW1TvaZcjRqgD6Qppggk2gxj5Ic5IQjQCw1NLlhEh03eBp7kVd4puzaVSQr96WCM0m6ixniZhYzt5j94G56a-Lh56rlC" width="180" /></a></div><p><br /></p>Many of yesterday's speakers had very little voice left due to the advancing muscle weakness from ALS. We leaned in to decipher their words which were often too soft or garbled to fully understand. As you might imagine, wheel chairs of all shapes and sizes cruised among the ambulatory. Children darted in and out, and our dog Delta Mae stole the show, making her way into dozens of pictures. Everyone wanted a selfie with Delta.<p></p><p></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEin-JLcLEervrHZggTJGHfLtaU6Mft3JY3PR9imZOXDfLmxZ_F6hL2XGy9SGfiObcJcVsBSkgIWtlKKALPywcRf-le96zut_Vb6N__5f9Qe6Cky9gKv2Ws2IpARlJEJVYpoDMulgwTHoeBpXg-c4RFN_Hh1vmUd4_s_enR2k-YxVEFH4k5pe9km_Cm7" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="768" data-original-width="1024" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEin-JLcLEervrHZggTJGHfLtaU6Mft3JY3PR9imZOXDfLmxZ_F6hL2XGy9SGfiObcJcVsBSkgIWtlKKALPywcRf-le96zut_Vb6N__5f9Qe6Cky9gKv2Ws2IpARlJEJVYpoDMulgwTHoeBpXg-c4RFN_Hh1vmUd4_s_enR2k-YxVEFH4k5pe9km_Cm7" width="320" /></a></div><br /><br /></div><div class="separator" style="clear: both; text-align: left;">The day was also full of tears. ALS, after all, is steeped in loss. Loss of function. Loss of dignity and autonomy. Loss of futures. And, eventually loss of loved ones. People wept for themselves, for their families, and for those they have lost. People cried tears of rage and frustration. They cried for each other.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">And, in the space of hours, Peggy and I connected with people from all over the country who are at every stage along the ALS journey. We hugged people whom we have only known via zoom. We thanked people for their inspiration and their courage. They hugged us back and they meant it. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">This event was equal parts rally and reunion. Speaker after speaker remarked that this small group, who shared an intimate knowledge of the ALS journey, had become a kind of family for them. Folks who were farther along the path welcomed those of us who were new to the journey. In that way, it felt like an equal part church.</div><p></p><p>Bryan Stevenson often sums up his public lectures with a call for greater proximity to injustice. He rightly surmises that those with proximity to the problem have the best hope for an authentic, meaningful solution. By analogy, the closer the proximity, the truer the response.</p><p>Tears, it occurs to me, are a true manifestation of authentic proximity. So are the spontaneous hugs that hold you close, belying social custom. </p><div class="separator" style="clear: both; text-align: left;"></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com1tag:blogger.com,1999:blog-8151210006067069609.post-86110127410332873242022-05-03T10:19:00.002-07:002022-05-03T13:23:59.084-07:00The Launch<p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPs_lORYK5E9Ruc2TsOrkYl0N-QfJ_p12YrTuHHcsPELdRxyT7JiZqUOvPISrT3983FTeQAouKrmKyXPRtCZfbJ9OWRUry0GIe_wTHkA-fEpSubBvhIupbcRmd5epZo1ccdxS5bW_YnIaIaB6RJ3kMO_QikKOHnTa78lUmfycWnI4qda3KqwslZWbX/s3600/ogan(27of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPs_lORYK5E9Ruc2TsOrkYl0N-QfJ_p12YrTuHHcsPELdRxyT7JiZqUOvPISrT3983FTeQAouKrmKyXPRtCZfbJ9OWRUry0GIe_wTHkA-fEpSubBvhIupbcRmd5epZo1ccdxS5bW_YnIaIaB6RJ3kMO_QikKOHnTa78lUmfycWnI4qda3KqwslZWbX/s320/ogan(27of215).jpg" width="320" /></a></div><div><br /></div><div><br /></div>"I hope you know how loved you are!" "You are so loved." "People love you."<div>Over and over and over again I have received these sincere exclamations that are meant to remind me of the bountiful love that surrounds me. I am most often without adequate words in response. </div><div><br /></div><div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNHFIkgZ76JXxmJPq4LynbH2msACGndkE6oKcFr-AI-pGTbrGnPbmLSblZZBDGcNP72hHK8wSiZUZimaj96sFRmTU1GCcmEsAwaEUh2NMmyb3NmuWIxnOVzdh3BHAMfRZChyOpLg9nyrnZIm6Dv3QVqM8N12OLlzHFN2tMvJlx1r8QT-uyB9wiQuI/s3600/ogan(38of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJNHFIkgZ76JXxmJPq4LynbH2msACGndkE6oKcFr-AI-pGTbrGnPbmLSblZZBDGcNP72hHK8wSiZUZimaj96sFRmTU1GCcmEsAwaEUh2NMmyb3NmuWIxnOVzdh3BHAMfRZChyOpLg9nyrnZIm6Dv3QVqM8N12OLlzHFN2tMvJlx1r8QT-uyB9wiQuI/s320/ogan(38of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Usually, I begin by looking down at my feet.</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwN8dyYiR_aTXCRKQTrGNi3CzY_mh5lVeYlcbC9OwWZ7GlThvceTJZCjT9dQjfsdggYZGHWgScRtPXzC3fOh6ii7AJm9ye8kzSbU_MCaHPEVKOVeRj4exut_9ZLg2PoyXfCSfv8su7gJvbejLIVgdUta2GiLTaKzopncj01T8J1jTzDED1cmBRLt19/s3600/ogan(71of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwN8dyYiR_aTXCRKQTrGNi3CzY_mh5lVeYlcbC9OwWZ7GlThvceTJZCjT9dQjfsdggYZGHWgScRtPXzC3fOh6ii7AJm9ye8kzSbU_MCaHPEVKOVeRj4exut_9ZLg2PoyXfCSfv8su7gJvbejLIVgdUta2GiLTaKzopncj01T8J1jTzDED1cmBRLt19/s320/ogan(71of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Then, I say something like, "the feeling is mutual." Or, I talk about the relationship that has fostered the love. While all of this is certainly true, the words do not match the magnitude of the experience, no matter how earnestly I try to make them sound.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmCxSSb6JJRkIZfnzNw10ApkEToJcuA5gzDICDtLOsCWoQZyMZCCcfoMBIKPjWM2xVrZbAjk2Ww-EHvKViZ4By2oKa8RdSiSFFcE95d8gDmSxewSZkbuefFICdIUIlex8WgCgcvfaUoqHlh7NHR57GHJRN6FGLqfmCc-K-l_eiIY6CPt8PgEu8AnBv/s3600/ogan(109of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmCxSSb6JJRkIZfnzNw10ApkEToJcuA5gzDICDtLOsCWoQZyMZCCcfoMBIKPjWM2xVrZbAjk2Ww-EHvKViZ4By2oKa8RdSiSFFcE95d8gDmSxewSZkbuefFICdIUIlex8WgCgcvfaUoqHlh7NHR57GHJRN6FGLqfmCc-K-l_eiIY6CPt8PgEu8AnBv/s320/ogan(109of215).jpg" width="320" /></a></div><div><br /></div>Love en masse can be overwhelming. . .</div><div><br /></div><div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimhRmam134IApTiCgSJwvO41a7jZ6L7EYDevt27DS6ng8jabbxZeByh6GrPN8u-ecbD6oho7Z0LpUT816t_2gB7mJj4G0fgGYTdb3U4rNwCWCDiVWN3nckSc1Zx3ACJTiaszr1V9W4DuADmjYagkG0a7wxXKDYUJtbFbyy6CCaowSBqyyiqJY2gppP/s3600/ogan(3of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimhRmam134IApTiCgSJwvO41a7jZ6L7EYDevt27DS6ng8jabbxZeByh6GrPN8u-ecbD6oho7Z0LpUT816t_2gB7mJj4G0fgGYTdb3U4rNwCWCDiVWN3nckSc1Zx3ACJTiaszr1V9W4DuADmjYagkG0a7wxXKDYUJtbFbyy6CCaowSBqyyiqJY2gppP/w278-h213/ogan(3of215).jpg" width="278" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: left;">. . . which is no excuse for minimizing the response.</div><div style="text-align: left;"><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibZl5gq9nQtUzJfc0UvjnEndfxBR7S2ZBBuLnzbIC1jeOA70Nn04dWMwnuezTCGFbNz4hFLgohu4c8lOxsuHtsUY_2Y_innKqseyAnAEA7Qx1aHOsZgSrzv7_iOjkykcQftMBPTXC3bHb195UDkqBW69R6SzkSwEuhQtFrc0fvWfes4XzVxqUq5nvk/s3600/ogan(39of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibZl5gq9nQtUzJfc0UvjnEndfxBR7S2ZBBuLnzbIC1jeOA70Nn04dWMwnuezTCGFbNz4hFLgohu4c8lOxsuHtsUY_2Y_innKqseyAnAEA7Qx1aHOsZgSrzv7_iOjkykcQftMBPTXC3bHb195UDkqBW69R6SzkSwEuhQtFrc0fvWfes4XzVxqUq5nvk/s320/ogan(39of215).jpg" width="320" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: left;">Overwhelming love calls forth gratitude beyond words. </div><div style="text-align: left;"><br /></div><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFvUf6bte9T9uukYs_3zw46zoTUlVvQSAG1V4m0iWTDsSOcSgoNZPyaF6El3-c-X1RnML6sVkRc5TZrhtNQVb1frWimXvb1jWIK7jFjT7UfqcW-BCViWbx6J0dPTcH-PgO4zscdWflxqbrHnSiQa2FFLH_qP3KdlL5ru6VM7oS6i0k96CN72eIIU3J/s3600/ogan(101of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFvUf6bte9T9uukYs_3zw46zoTUlVvQSAG1V4m0iWTDsSOcSgoNZPyaF6El3-c-X1RnML6sVkRc5TZrhtNQVb1frWimXvb1jWIK7jFjT7UfqcW-BCViWbx6J0dPTcH-PgO4zscdWflxqbrHnSiQa2FFLH_qP3KdlL5ru6VM7oS6i0k96CN72eIIU3J/s320/ogan(101of215).jpg" width="320" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: left;">For this crowd, overwhelming love definitely means showing up. </div><div style="text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBRseLFUxnsOJpulyglqIHUYtEl1Nz-aOTeVVjdwZu-UhrP0yvHWuv4rmpy31j1x7nPCkLvMsQQuCuHeSBV1-t-u7AcIfcpxemq2VdOe3gKe97yvhnUgDrQGDdGDS2OGG1nkHJ3rdSpAu_Yu9Xcnp7PxL1FfPm_fg45FEW0qkW0fmGp5eMpolMY7hx/s3600/ogan(92of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3600" data-original-width="2400" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBRseLFUxnsOJpulyglqIHUYtEl1Nz-aOTeVVjdwZu-UhrP0yvHWuv4rmpy31j1x7nPCkLvMsQQuCuHeSBV1-t-u7AcIfcpxemq2VdOe3gKe97yvhnUgDrQGDdGDS2OGG1nkHJ3rdSpAu_Yu9Xcnp7PxL1FfPm_fg45FEW0qkW0fmGp5eMpolMY7hx/s320/ogan(92of215).jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Abundant love is meant to be thoroughly enjoyed. Don't you agree?</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaqJQhxNvjR0lkOgXG-OI0jCCdsIJCxbIZc67rvb3a6LQ62DsDfvJqyEHMHt-nhwZ5_qlzpuwfxXCdOE9R_IRo1G2rSDWVUG0Ugr8KSW0DeBmnNBVA3r274O-i-0P_gnQ3xJfqfi-5Kq5-tu4ZaZuE_pUEkZCuVGJmJeY6C77FGYk8ItHwgOM_ns2k/s3600/ogan(159of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaqJQhxNvjR0lkOgXG-OI0jCCdsIJCxbIZc67rvb3a6LQ62DsDfvJqyEHMHt-nhwZ5_qlzpuwfxXCdOE9R_IRo1G2rSDWVUG0Ugr8KSW0DeBmnNBVA3r274O-i-0P_gnQ3xJfqfi-5Kq5-tu4ZaZuE_pUEkZCuVGJmJeY6C77FGYk8ItHwgOM_ns2k/s320/ogan(159of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8JbJwaj-ymaSkiIhBqX8o2xdMojxy9OcHJOfUIsKp8SwCulM3XYUM5g1Up1ACRWhFDuL-5c2HBFoFe45GBGVZhekR6nhMWN-n4WX_XUE2cMCAPXDP011QDRxi3L-Yo3I8wBuabxZX9Uzx36plw1_DmuuFHych7oNdUxu9Q4ENrp9wqeFwIB27lxGi/s3600/ogan(160of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8JbJwaj-ymaSkiIhBqX8o2xdMojxy9OcHJOfUIsKp8SwCulM3XYUM5g1Up1ACRWhFDuL-5c2HBFoFe45GBGVZhekR6nhMWN-n4WX_XUE2cMCAPXDP011QDRxi3L-Yo3I8wBuabxZX9Uzx36plw1_DmuuFHych7oNdUxu9Q4ENrp9wqeFwIB27lxGi/s320/ogan(160of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Enjoyed with great good humor. . .</div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg08nlvttPSVtoEVfCgxKg4q6vWy1aXredqFqNCUt_xmi4giNlRALjk11RsQBKzuJLXCDZxden7DfVNKeTfrfswuncPfhGEhUp1zqhINFJnA7KdqxGnvIx_HWlatTAnVWTUV2DY2DK_3cMfLI_vFWfJacOVZlqzPpOVcHJem3S9hQrLCO-s89g_Ay_o/s3600/ogan(191of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg08nlvttPSVtoEVfCgxKg4q6vWy1aXredqFqNCUt_xmi4giNlRALjk11RsQBKzuJLXCDZxden7DfVNKeTfrfswuncPfhGEhUp1zqhINFJnA7KdqxGnvIx_HWlatTAnVWTUV2DY2DK_3cMfLI_vFWfJacOVZlqzPpOVcHJem3S9hQrLCO-s89g_Ay_o/s320/ogan(191of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">...and wordless, heartfelt embraces.</div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkG8Az5gfNQKNhTFAjSeag0o9GU1Otk--va_JPowfuOU3GzXRNd7MbIR2xPl0U9g6L8-SJi1qGwE1osUwChuRj-rKDV09l27lrM_9Klo-fXhHM9idZsuOHjEDBVrrEh8lMXtJPCEaoFbrtsrr24Yo3DBM6TatcD6MYGWozieGbc0H3bhbwEO1JHOr4/s3600/ogan(195of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkG8Az5gfNQKNhTFAjSeag0o9GU1Otk--va_JPowfuOU3GzXRNd7MbIR2xPl0U9g6L8-SJi1qGwE1osUwChuRj-rKDV09l27lrM_9Klo-fXhHM9idZsuOHjEDBVrrEh8lMXtJPCEaoFbrtsrr24Yo3DBM6TatcD6MYGWozieGbc0H3bhbwEO1JHOr4/s320/ogan(195of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">This kind of love is meant to be shared.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHQd6IMv49O8Kl78YGwdixco9TWG2cnjjFTn-JnIOFbGXpcNsmOx1NHU1Z2BtObpZVQtEokQiEs3r1S7y727EZ-oZp9UEs4_EN3yF_aILOrKW60_bs7PVv0JNphcExP6U5KIaMsepdpAaRCkjEZTVfXzCQH2vkQMyxNNU0gzhohFMMl1xSq4r_Swdv/s3600/ogan(117of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3600" data-original-width="2400" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHQd6IMv49O8Kl78YGwdixco9TWG2cnjjFTn-JnIOFbGXpcNsmOx1NHU1Z2BtObpZVQtEokQiEs3r1S7y727EZ-oZp9UEs4_EN3yF_aILOrKW60_bs7PVv0JNphcExP6U5KIaMsepdpAaRCkjEZTVfXzCQH2vkQMyxNNU0gzhohFMMl1xSq4r_Swdv/s320/ogan(117of215).jpg" width="213" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">The Hummingbird Fund is now a dream come true. My family and I have a new labor of love.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfo49bZyomf5X2Bw0hpwTBYl9NYxK7VYvq6vEr5ogzHJZuz37vMlZoE3xAGEWAoQXO6sYnvn25OEFr-TekvJMMLK3c1BeaKTEb2oU1H-_CYKjjYDi4I0kJca45PZnz_skyvh1zWMxQ5td73XaNQ2Frc8opRYU1beUG6rjH7zIgivHH8tCJvgfAQnc-/s3600/ogan(211of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfo49bZyomf5X2Bw0hpwTBYl9NYxK7VYvq6vEr5ogzHJZuz37vMlZoE3xAGEWAoQXO6sYnvn25OEFr-TekvJMMLK3c1BeaKTEb2oU1H-_CYKjjYDi4I0kJca45PZnz_skyvh1zWMxQ5td73XaNQ2Frc8opRYU1beUG6rjH7zIgivHH8tCJvgfAQnc-/s320/ogan(211of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">Through the Hummingbird Fund we will be able to dramatically improve the quality of life for families living with ALS. </div><div class="separator" style="clear: both; text-align: center;">(contact us: thehummingbirdfund@gmail.com)</div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtVcqPbMXF_jENBdJZq-uHuTgjws2eP778js82ToMTMe81hxr_12ZqgwClNDW7EE0kaBst_acGzcOXo-jMRRn_A5OGX4nhQQLBMOAcnvoiFRWIt5XWx1Dtjpxn1BHEZYAy9HFbbdE2X1GfDBWRr-TAe9zYNLC1rE16QN2vhVzeOeXNAqYvA9UIThYX/s3600/ogan(215of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtVcqPbMXF_jENBdJZq-uHuTgjws2eP778js82ToMTMe81hxr_12ZqgwClNDW7EE0kaBst_acGzcOXo-jMRRn_A5OGX4nhQQLBMOAcnvoiFRWIt5XWx1Dtjpxn1BHEZYAy9HFbbdE2X1GfDBWRr-TAe9zYNLC1rE16QN2vhVzeOeXNAqYvA9UIThYX/s320/ogan(215of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">We are grateful beyond words, and we have meaningful work ahead. </div><div class="separator" style="clear: both; text-align: center;"><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsE7LA_lt7sr0UjtabPR_kVqtyzmuegbOAg9m4ysVdsQ-EfQUO30JnMNiTOi8kGj-SwacSSbLyQbpbxSRQF5XkfXhXIiA5fVzw61vs5Y9yPLoMkr9qq749PR6XfFQC9ORfp08-l-AwDBCqVEiBKH0FWpsNLn_L3_7BNtwdUhe36VFwViUFxTXY4o6S/s3600/ogan(171of215).jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2400" data-original-width="3600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsE7LA_lt7sr0UjtabPR_kVqtyzmuegbOAg9m4ysVdsQ-EfQUO30JnMNiTOi8kGj-SwacSSbLyQbpbxSRQF5XkfXhXIiA5fVzw61vs5Y9yPLoMkr9qq749PR6XfFQC9ORfp08-l-AwDBCqVEiBKH0FWpsNLn_L3_7BNtwdUhe36VFwViUFxTXY4o6S/s320/ogan(171of215).jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimhRmam134IApTiCgSJwvO41a7jZ6L7EYDevt27DS6ng8jabbxZeByh6GrPN8u-ecbD6oho7Z0LpUT816t_2gB7mJj4G0fgGYTdb3U4rNwCWCDiVWN3nckSc1Zx3ACJTiaszr1V9W4DuADmjYagkG0a7wxXKDYUJtbFbyy6CCaowSBqyyiqJY2gppP/s3600/ogan(3of215).jpg" style="margin-left: 1em; margin-right: 1em;"><br /></a><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><br /></div><br /></div><br /> <p></p></div>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com1tag:blogger.com,1999:blog-8151210006067069609.post-66142880322402509792022-04-18T13:05:00.000-07:002022-04-18T13:05:15.365-07:00Cue the trumpets!<p>My wife Peggy grew up on a small lake north of Chicago. The brick house had a long, sloping back yard bordered by giant oak trees and a split rail fence. A slightly wobbly, wooden pier jutted out into the lake, making it the perfect launch pad for children to come careening down the backyard, across the pier and into the cool, fresh water with gleeful squeals, and splashes. The small sandy beach, with its gentle lapping waves, and afternoon shade made for ideal imaginative play. And as the children aged, the excitement and laughter flowed from a used motor boat that was more than adequate for all manor of water-skiing adventure.</p><p>This was Crystal Lake. This was middle America at its summer best.</p><p>The decades of family gatherings at Crystal Lake are now part of the family lore, embedded in memory across generations. Stories are told and retold with any number of embellishments for sure, especially when water skiing is involved. </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjvKxXq-mtnEBW8IPdG6PlUwiRqjGIyRoek3V4Uw6_R-D4LNh7CGjgjK-HWdUa7k5wUvi71cWiH4wlh-Np526CNe-EHGMcahCeF1cpCq_-HXvsqfTZ4ci88ol8KgBG2N1t85jEr_-dy9_VaTJftYU7LSqJoNI71zskA8Fy7RTEGl72gRbTvJGh-_7Gh" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="375" data-original-width="500" height="240" src="https://blogger.googleusercontent.com/img/a/AVvXsEjvKxXq-mtnEBW8IPdG6PlUwiRqjGIyRoek3V4Uw6_R-D4LNh7CGjgjK-HWdUa7k5wUvi71cWiH4wlh-Np526CNe-EHGMcahCeF1cpCq_-HXvsqfTZ4ci88ol8KgBG2N1t85jEr_-dy9_VaTJftYU7LSqJoNI71zskA8Fy7RTEGl72gRbTvJGh-_7Gh" width="320" /></a></div><br /><p>Yesterday was Easter Sunday for most of Christendom. It is a Sunday of exuberant music and pageantry, with brass choirs, and soprano descants sung to familiar hymns. It is the Grand Finale of Holy Week. </p><p>For many, Easter is one of the two Sundays they appear in church. Attendance is universally overflowing, and preachers everywhere are challenged to deliver a Home Run Sermon. </p><p>Ask a preacher and they can enumerate any manor of challenges for Easter Sunday sermonizing. Imagine having to craft a message that speaks to those who know the back story, retold throughout Lent, and those who show up for the music. (You know who you are.)</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjgCM-s2H78u6IJOFzU7xQdmhoC47_qeGlhazhOx_oAX4YJ9WdoPOUs7U42LwvzjzV-NIKibKzl2zT2-idu77Mud-NGoIspM875YL3G9OXhmsA9aDZM2RVHBvtqzyMdg02vpOgfv5xO2xjhzhw7HQePS-iHGCEM_IMhzrCy8ta8vMcnfLB_cBjVcGBS" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="526" data-original-width="1000" height="221" src="https://blogger.googleusercontent.com/img/a/AVvXsEjgCM-s2H78u6IJOFzU7xQdmhoC47_qeGlhazhOx_oAX4YJ9WdoPOUs7U42LwvzjzV-NIKibKzl2zT2-idu77Mud-NGoIspM875YL3G9OXhmsA9aDZM2RVHBvtqzyMdg02vpOgfv5xO2xjhzhw7HQePS-iHGCEM_IMhzrCy8ta8vMcnfLB_cBjVcGBS=w422-h221" width="422" /></a></div><br /><p>Jumping to the end of the Easter story can lead to confusion and dismay. How do you make sense, never mind celebrate, a prophet's gruesome, slow, death on a cross, in a trash dump, 2,000 years ago? Is it enough to proclaim that a God/Man rose from the dead? Resurrection from the dead is, after all, a basic tenet of the Christian faith, and in Jesus's case, it is a spectacular miracle. </p><p>Resurrection can be understood as the end of the story... believe it, don't believe it... it's up to you. Either way, enjoy the music.</p><p>Those of you who were in church yesterday may have noticed, as I did, that there was plenty of talk and singing about death. Death on the Cross. Vanquishing Death. Freedom from Death. Transcending Death. No more fear of Death.</p><p>And don't forget the empty tomb, which is also really sad, until Jesus speaks to Mary. Then we cue the trumpets for a fanfare and a final hymn.</p><p>The back story to the crucifixion and resurrection reminds believers of the intimate conversations, the shared meals, the creation of ritual, the reversal of roles (foot washing), and the withdrawal for solitary prayer and contemplation that precedes Jesus's arrest, trial, and death.</p><p>We need the back story to understand the end of the story. We need the entire narrative to make sense of the ending. If we jump to the end of the story, we miss the deeper meaning of the story.</p><p>For me and for many Christians, resurrection is not just an historical event. Resurrection exists today in shared meals, rituals, reversal of roles, intimate conversations, worship, and solitary prayer and contemplation. Resurrection is an on-going narrative of God's presence and love as a Reality in daily life.</p><p>Father Richard Rohr says, "<span style="background-color: white; color: #141414; font-family: Georgia, serif; font-size: 16px;">The only way I know how to teach anyone to love God, and how I myself seek to love God, is to love what God loves, which is everything and everyone, including you and including me!"</span></p><p>Love everyone and everything, even those places and people who have passed. Gratefully, our narratives continue to evolve, and live on. </p><p>Alleluia!</p><p>Cue the trumpets.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhQgW94GYpyLN_BHIGHghtsKD9NOB1ocIWeYOYlH_2kg60Y92zBZXjKSoSnOlUBCQ7BNd_RQ8Zk4OELnV4ePzTXFwESyPtxx6awheoqEeB2dgDccgv80RmQrwApQoN_jFg3AL1C22pmtJUY70wO3AVz1oQY9fOSY8BIy4_YdzMcPEY6PrzMasxHPYBI" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="183" data-original-width="275" height="213" src="https://blogger.googleusercontent.com/img/a/AVvXsEhQgW94GYpyLN_BHIGHghtsKD9NOB1ocIWeYOYlH_2kg60Y92zBZXjKSoSnOlUBCQ7BNd_RQ8Zk4OELnV4ePzTXFwESyPtxx6awheoqEeB2dgDccgv80RmQrwApQoN_jFg3AL1C22pmtJUY70wO3AVz1oQY9fOSY8BIy4_YdzMcPEY6PrzMasxHPYBI" width="320" /></a></div><br /><br /><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0tag:blogger.com,1999:blog-8151210006067069609.post-29497146043851552492022-04-15T08:47:00.001-07:002022-04-15T08:47:38.488-07:00Introducing JimBob and PeggO<p>Growing up I never considered Jimmy a nickname. An uncle once tried to call me Jimbo, which I flatly rejected. Jimmy was my name. I loved the way it rolled off my tongue: "Jimmy Ogan". My name had symmetry and a hint of alliteration. </p><p>In middle school, all the Jimmys became Jims. And I was never Jimmy again, except to family of course.</p><p>Somewhere along the way JimBob popped up as a term of endearment. One of those random attempts at verbal affection. No one actually refers to me as JimBob, but I have always liked the sound of it. </p><p>PeggO is another random attempt at verbal affection.</p><p>Thursdays at UVA Medical Center in the Department of Neurology are ALS clinic days. A multi-disciplinary team of clinicians meet with ALS patients and their families to provide highly coordinated, expert care. Patients welcome expert after expert into their exam room. Imagine the patients holding court, receiving their trusted advisors one after the next. It's great. And it's one of the reasons that UVA is named as a Center for Excellence in ALS care. </p><p>ALS clinic is also a long morning.</p><p>Yesterday was ALS clinic for JimBob and PeggO.</p><p>PeggO rises early on ALS clinic days, because JimBob needs to eat before clinic, and he needs snacks to get him through the morning. PeggO makes soft boiled eggs and toast before clinic. She has decided on 4.5 minutes for the perfect egg. She's right, of course. It's perfect.</p><p>Snacks for clinic include peanut butter, crackers, oranges, a banana, and shelled pistachios, because they are JimBob's favorite. In between advisors, PeggO offers snacks. The exam room invariably smells of oranges and peanut butter.</p><p>ALS clinic is an event for JimBob and PeggO.</p><p>Maybe you have noticed that exam rooms now have wide chairs that look like loveseats, because many American patients need a loveseat to sit comfortably in a chair. They should probably offer loveseats on airplanes.</p><p>JimBob and PeggO love the loveseat. They park them selves in the loveseat facing the computer station to hold court, snacks at the ready.</p><p>PeggO records every detail in her ALS journal. She also consults notes from literature reviews, webcasted lectures, and general reading. She knows JimBob's weight and Peak Expiratory Flow from every visit. </p><p>JimBob provides comic relief. Every Royal Court has a jester. JimBob likes being a cheerful patient. </p><p>PeggO and JimBob make an effective team. The advisors leave smiling and grateful for the opportunity to help. PeggO and JimBob leave feeling grateful for expert, compassionate care.</p><p>The ALS advisors had nothing but good news yesterday. Functional status measured by the <a href="https://www.alspathways.com/assessing-function/">ALSFRS-R</a> remains unchanged, Forced Vital Capacity remains above 100% predicted, and everyone was delighted to hear about the positive effects on JimBob's energy from the AMX00035 he is now taking off-label. Everyone applauded JimBob and PeggO for running 2-3 miles mosts days. JimBob could do more stretching, and he could eat more protein. Be sure PeggO has taken note of these necessary improvements. </p><p>As for Righty and Lefty. </p><p>Righty rose to every exam request in good humor and without fanfare. Lefty struggled to demonstrate strength and coordination, especially in the thumb and between the ring and middle fingers. Lefty gave it the old college try, and welcomed a gentle squeeze from Righty, a hand hug, after the exam. God Love ya both.</p><p>Every story has a beginning, a middle, and an end. Our ALS narrative is just beginning. We are meeting the characters, identifying dynamic tension, developing the plot and a vision for the story arch. Beginnings consume abundant energy. Snacks and hugs are essential.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgEQEsMGGUrMNWCVmKu5ktG18f_GDPht3150J8wOeDI_0_WxFkRHbKjz9PtiuZPIYUC4AkH2Yrq7s9G2hBOCzdVdkBrW8o_mhqNwLfdvHT_BPXbGVOuvyO0jFcfWVJeBrmcZk5PggpY35_LLT-rKUc6X8F0zu3gQORN5nSv_46nvGjpfwci2KcLaekC" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="730" data-original-width="1000" height="234" src="https://blogger.googleusercontent.com/img/a/AVvXsEgEQEsMGGUrMNWCVmKu5ktG18f_GDPht3150J8wOeDI_0_WxFkRHbKjz9PtiuZPIYUC4AkH2Yrq7s9G2hBOCzdVdkBrW8o_mhqNwLfdvHT_BPXbGVOuvyO0jFcfWVJeBrmcZk5PggpY35_LLT-rKUc6X8F0zu3gQORN5nSv_46nvGjpfwci2KcLaekC" width="320" /></a></div><br /><br /><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com1tag:blogger.com,1999:blog-8151210006067069609.post-91664693607394374942022-04-13T07:51:00.002-07:002022-04-19T14:51:37.603-07:00Morning hymn<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsKBc1xjJuT51xVqUN5waEmqRGtf9t7gKeTYeXnnw-h82yfw5-YUl051YqsQuYv0z8jykXQvd05WhmJjFp3aP27j_-F7zcGE6HfcaLHGQQ3Q73eyWFLmA_VQDydXbGirSfbr_SxhY-xsoUlCJRLVZ_H4Suah-Lsis8qJqYmgI-wFOMMODAM56uUR-s/s3495/IMG_2088.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3495" data-original-width="2632" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsKBc1xjJuT51xVqUN5waEmqRGtf9t7gKeTYeXnnw-h82yfw5-YUl051YqsQuYv0z8jykXQvd05WhmJjFp3aP27j_-F7zcGE6HfcaLHGQQ3Q73eyWFLmA_VQDydXbGirSfbr_SxhY-xsoUlCJRLVZ_H4Suah-Lsis8qJqYmgI-wFOMMODAM56uUR-s/s320/IMG_2088.jpeg" width="241" /></a></div><br /><div class="separator" style="clear: both; text-align: left;">Our deer love a fresh tulip bud. It seems there is nothing quite like it in Spring. My contemplation garden is now a collection of straight green stems standing among a bed of abundant tulip leaves. Except for this one. The lone survivor.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I said to a fellow gardener this weekend, "I don't know why I even plant tulips." She suggested I put a row of tulips in my fenced vegetable garden. That's what she does. Brilliant. And wise.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">This morning the sun landed on this bold tulip at just the right slant, and the scene was far more captivating than this photo represents. The redness blazed forth with uniqueness and vibrance. The petals shimmered. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">In due time, our lone tulip began to sway. Ever so gently, this gorgeous flower rocked back and forth. Was it moaning? Its petals are not long for this world. Or, was this lone beauty humming a morning hymn? It swayed and I lingered with a loving, grateful gaze. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Soon enough, I felt a sweet brush of air move across my face. I cannot call it a breeze. The air was just enough across my face to accompany a tulip swaying, humming its morning hymn.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;"><br /></div><p></p>Jim Plews-Oganhttp://www.blogger.com/profile/01900795617557995387noreply@blogger.com0