Posted 2/8/23
Flight will be lost to the swift [so they will be unable to escape], And the strong shall not strengthen nor maintain his power, Nor shall the mighty man save his own life. Amos 2:14
Howdy all! Been a few too many days since we met at the Cornbread table, but I am super thankful to be here now. 🙂 I trust all is as well as it can be in your world. I certainly pray to that end. 🙂
It has been a few eventful weeks, as I have mentioned in the last few week’s posts. I have been helping in several ways with the ever-helpful Alzheimer’s Association. Between the San Diego Summit and Memory Day at Jefferson City, it has been a very exciting time assisting in these endeavors. This week I served a bit on the AIM function of my volunteering schedule. AIM, or Alzheimer’s Impact Movement, is the advocacy wing of the Alzheimer’s Association. They put on the before mentioned Memory Day to advocate with state legislators for our cause and that day went well last week. 🙂 Here is one picture from the festivities:
Yesterday I was very fortunate to be able to speak to one of our US Representatives, Rep. Mark Alford‘s team, via Zoom. I hope to meet the representative himself when I travel to Washington DC in March. In the process of meeting and sharing as much as I could cram in in 30 minutes, I hit a quiet spell. Oh boy…. Having dabbled around on the radio and having been a fan of the medium for a lifetime, I hate dead air. It is a fault of mine. I tend to fill awkward quiet with inappropriately-timed humor. (Funerals are a hotbed for such) In order to fill the Zoom with my voice, I added this gem:
“It is great to work with the legislature on the Dementia topic because it is extremely unpartizan!” Fair enough…but I added “Even the most rank, pinko Commie would agree that dementia sucks!” at which my colleague Jessica muted and hid from camera view while collecting herself. Yes, I have loose lips sometimes. My inner Ronald Reagan/John Wayne may slip out…and did during the meeting. 🙂 After we finished, I chatted with my colleague and she said all she could think about was this:
Talk about setting a Digital Cornbread topic on a tee!?!?! Off we go…..
5 Things You Can Learn About Dementia from the Spy Balloon Story
- Quite a journey is had in many cases– The spy balloon traveled between 7,000-9,000 miles before getting popped with a multiple hundred thousand dollar Sidewinder, although the exact number is held tightly next to the real cause of Epstein’s death. The Alzheimer’s Association states “On average, a person with Alzheimer’s lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.” If you ask me, I’d rather fly on the balloon.
- Pressure changes things– The spy balloon was very likely filled with hydrogen, as are all weather balloons. This is mostly because helium is harder to come by with all of the Chiefs’ Super Bowl….uhhh…errrr….Big Game parties coming up. When the balloon traveled to its highest destination, it was in excess of 60,000 feet. The higher they get, the more they expand, due to lower pressure. The balloon was the size of 2 school busses when it was relieved of its flying gas… In dementia, we really need more of the early and pre-stage. Here the pressure is much lower than it gets as stress swells to the mid- and end-stage challenges. For the last few decades the only drugs helpful at extending these early stages have been drugs in the class of Aricept and Namenda. The main usefulness of Aricept is for early stage patients and it seems to extend the earlier stage at the “expense” of the later…in other words, it doesn’t extend life, but it makes the slightly easier time last longer and the end shorter. Namenda can be used longer, but has limited utility at some point. In the end, the pressure, if you will, builds and the balloon’s end happens in about the same amount of time anyway, which, sadly, has led some to not prescribe these useful, if limited, drugs. Enter Lecanemab (Leqembi™), and its slightly less helpful predecessor Aducanumab (Aduhelm™), stage left, with fanfare. This class of drugs, called monoclonal antibodies (see the -MAB at the end) seems to be on the right track! The FDA even agreed and gave conditional approval! Leqembi has been shown, on average, to add an average of 27% of the clear thinking time of the condition! Amazing!!! Had I had that available in 2009 for mom, I would have had, to date, if the average held, nearly 4 years of Mom 1.0. But alas, CMS, the agency that gives the official Okie Dokie to having Medicare pay for drugs, has placed a boatload of restrictions on the drug’s entire class. This class of drugs has many, many new treatments in the works that may have even more benefit…or even a cure. I have joined in clinical research (as a guinea pig, of course) for 3 research centers who are working on these drugs. However, these restrictions, functionally, have greatly hindered the research and the availability of these FDA-approved drugs! BTW…they are the only FDA-approved drugs ever to be put in this pile of restrictions….and the pressure is building. 🙁 I am going to DC in about 6 weeks to fight to fix this mess. AIM is the advocacy group spearheading this. 🙂
- What seems important isn’t always what is important– We were all worried about this balloon for various reasons. Was it spying? (Duhhh) Was it a weapon? nope. We really didn’t know what to think of it, but we knew one thing…it needed to be removed from our skies. Finally, after collecting a nation of info, it was shot down. Did it matter? I have no idea. I know it was good that it was shot down although over the Pacific seemed like a better place than the Atlantic. I have political opinions that it mattered alot, but I could be wrong. Meanwhile, an earthquake kills tens of thousands in Turkey, millions cross the SW border illegally, including some carrying drugs, guns, or humans to be trafficked, and we continue to passively send billions to Ukraine in what is likely to be WWIII. We, as a culture, aren’t great at figuring out what is really important. In dementia, we fall into the same rut. We worry about the disease’s progression, and rightfully so since it is right in our face. Teepa snow reminds us in Gems that, while progression matters, there is much, much more joy to be had if we just look for it and care in a way that supports this joy. What IS important? Milking the joy from each day with our loved ones for all it is worth. Things, minus a cure, will get worse, but today is today. 🙂
- Jet streams and common things– At first there were folks that said the balloon was just loosely flying and meant no harm. It was floating down the jet stream, a few mentioned. Whelp, I got a C in Meteorology in College, despite my teacher’s yeoman’s effort to teach me. However, I do remember that the jet stream travels fast. Weather.com says about 275 MPH, and doesn’t stop. The balloon seemed content to go all over the place, and certainly not at a consistent speed that mirrored the jet stream. It was controlled from afar. Did it benefit from the jet stream or other winds? Maybe. But it surely didn’t just go where it was taken by the wind… In our little world, remember this: every case is different. Some have A happen and B happen, but not C. Others have A and C but not B. It just depends where the disease is in the brain and several other factors. It is unpredictable. My mom is amazing. She is on year 14 and still fighting. Can I promise she will live another year or two? I can’t even promise I will have tomorrow. So, like the previous point, I need to treat every day like it is the last and soak it up. Love on her and watch for every hint of smile. (She “laughed” a little 2 days ago, which made my day.) There is no way to know where her balloon is going, day-by-day, but I know the end is closer than it was… But heck, we are all terminal and none of us are getting out of here alive (minus His return), so we need to act in the light of this reality. 🙂 I have facilitated a support group for a few years and have attended them even longer…there are commonalities between people’s journey, but there are soooo many differences.
- What goes up must come down– Funny thing happened when we shot a Sidewinder into the balloon…it dropped like a sack of taters. It was waaaay up in the sky, but gravity took it back to Earth in a flash. We are fishing somewhere off Myrtle Beach as I type trying to find the goodies we shot down. I am something of a Pollyanna sometimes, especially on the outside. However, inside I am spent. I am something of a floppy, gasless balloon these days. I raise funds, advocate, and write for you here among other things I do for the cause, some days, for my own pleasure because it helps me cope. Mom’s days are numbered. Every pneumonia is one time closer…and I hate this disease more than ever. If I could pop it for you, and for me, I would gladly hang by my toes and fly up on my own balloon and do it myself. May we find a cure soon and #EndALZ once and for all!
Update: Mom is about the same as she has been for a few months. I will see her again tomorrow night for supper. My June fundraiser is just kicking off. I hope to raise a blimp of money for these two organizations. 🙂
Alzheimer’s Association My Longest Day Page
SeniorAge Area Agency on Aging (Designation Runnin’ Til I’m Purple #4c4
I have one of my 4 locations for my June event close to being locked in. I am working on the second as we speak! Announcement and shirt design coming soon. 🙂
