47: Shameless
Before I get to medical updates, I’m going to be shameless yet informative here for a moment. I’ve posted this link a time or two, but this will be my most impassioned and informative plea yet. The Alzheimer’s Association is an organization that exists, among other things, to lobby for a cure and greater medical understanding of the disease. They were my first call for help when I was diagnosed, and I’m proud to call myself an advocate on their behalf. They’ve opened up doors for me, from the trip to DC (chronicled in these very pages) to speaking engagements (also chronicled here) and the chance to go skydiving (won in a raffle they hosted - much to Wendy’s chagrin). They’ve also provided aid and support to diagnosees, both new and old. I am a better person today, thanks to their work. It is because of them (in part) that insurance companies cover my Leqembi treatment and the diagnostic process that led to it. They understand the need for clinical trials, and how important the funding to the National Institute of Health, Center for Disease Control and Food and Drug Administration (all currently being dismantled by an Alzheimer’s skeptic) for their continuation. I’ve pointed this out before, but here’s a couple of statics for you:
In 2025, there are 7.2 million Americans living with Alzheimer’s. It is rapidly catching up to Cancer as a killer - despite (as you know) not being categorized as a terminal disease.
That number is expected to double in the next 25 years
67% of people with Alzheimer’s are women.
The number of people of color with Alzheimer’s is 4% higher than for caucasian people.
Worldwide, there are over 55,000,000 people living with Alzheimer’s.
So, clearly, this is not just about me! And this is not just about eating, exercise, environmental concerns or whatever else claptrap our brain-worm infected, bear-killing Secretary of Health and Human Services is saying. Sure, there are important things to learn about how and what we eat, our sedentary lifestyles and the rampant destruction of our eco-systems, but they are not the sole cause. 55 million people did not do something “wrong”. The Alzheimer’s Organization is working hard to combat the stigma many new diagnosees feel. One of the things I get told quite often is that my willingness to speak about and own my disease is a breath of fresh air in this sordid medical landscape we’ve created. And I’m pleased to do it, and I’m thrilled you’re all along for the ride. Because…
There are several hundred readers signed up for this blog, and right now, I’m asking each of you to kick in whatever you can (no amount is too little) and support our team in the Walk To End Alzheimer’s. The donation link is here:
http://act.alz.org/goto/SeanWalk.
Right now, team ALZBlog is in second place for fundraising (behind a team with corporate sponsors). Wendy is in second, and I’m in third place for personal donations raised. So… If you love me - and I know you do - help me kick Wendy’s butt, and launch me into the stratosphere. (This is all in competitive good fun, I’m sure you know.) And help us kick Alzheimer’s butt straight to the curb of irrelevancy where it belongs. Your donation goes, not to me - I’ll never ask for money personally - but to a great organization doing great work. 77% of funds raised go directly to support, care, research and advocacy. The remainder go towards enhanced fundraising and the salaries of the dedicated folks who work at the Association, many of whom I now count as dear friends. And if you’re local to me, join the team. The more walkers the better. Or start a team in your own area. There are walks all across America. International folks, you can still donate - the cure and research will benefit the world - but there are no international walks that I’m aware of. If you want to do one, let me know and I’ll see if I can get the association to bring you in - or perhaps there's an organization more local to you organizing one.
But for now, once again, that's: http://act.alz.org/goto/SeanWalk.
OK. Onwards. Last night I had the pleasure (sort of) of (sort of) seeing maestro Jon Batiste and his band perform live at Tanglewood, a storied outdoor music venue in the Berkshire mountains. The music, as best as I could hear, was excellent - Batiste is a crack piano player, seamlessly blending Beethoven with Allan Toussaint, and showman. I feel like, in a theater of decent size (and by that I mean medium) I would have loved this show to death. Unfortunately, just like with the last outdoor concert I attended, the venue was too large for the type of listening that I care to do. Tanglewood shows are an event. People picnic, bring all the fancy settings and encamp for an evening out - which is wonderful - but I go to hear music to hear music. And see the band play. And be a tad, if I may, reverent about it. I learned long ago, after seeing Pink Floyd at Madison Square Garden, that there was no reverential music to be heard at a venue of that scale. There were about 10,000 people in attendance - which is great for Batiste, and shows that “real” music still has a place in this society - but I prefer, maybe a maximum of 2-3000 people for a concert of that scope. I really prefer a small club, but an artist of Batiste’s caliber is well beyond the clubs these days. Bands like The Tedeschi Trucks Band do it right, I think, by doing residencies - several nights at a sympathetic hall. Anyway, it was a beautiful night, and I had a great time - but just wasn’t swept into the music the way I prefer to be.
My arm is still swollen and leaning towards a purple/brown/yellowish tint from last week’s fall during the Longest Day hike down Mt. Monadnock. Hurts a bunch too. But getting better for sure. However, it put a real damper on my most recent infusion. The center had had a restriction placed on Leqembi in case of a fall. I don’t know why. They had to call my (old) neurologist, who thankfully told them to go ahead and make it happen. But really, the things I do for the Alzheimer’s Association! I’ve got skin in this game (although a little less on my knees right now). Do you? I did work on trying to convince the nurses at the infusion center to sign up for the walk either as their own team, or by joining my team.
The seemingly never-ending saga of the Inspire implant sluggishly grinds its way to a close. As we know, my insurance approved the procedure (the day after I was supposed to have it), and I’ve been calling and stopping by the surgeon’s office for an update since. A few days ago I finally got a call and was informed that even though they told me it would happen in July, there was no space available on the one day that they did the procedure. That the doctor would be on vacation in August, so they were scheduling me for mid-September. Right when I’ll be away attending Jonas and Madeline’s wedding. Something really wrong with the scheduling and communications departments here. Unfortunately there are no other doctors in my area who are covered by my insurance and do this procedure. So I’m stuck. Surgery is scheduled for October now. Good thing that a good night’s sleep isn’t necessary for brain health, hmmm? Oh… Wait.
In self promotion news (I promise I won’t mention the fundraising site for the walk again here) I’m doing a podcast for the Alzheimer’s Association - to be recorded in a few days, speaking again at a senior center in late July and at a staff meeting in early July. I’m really thrilled to be doing these things.
And finally, the dizziness from the Memantine has all but gone away, and I’m feeling no ill effects. So that’s really good. And I bought new hiking boots, so that hopefully next time I’m on a mountain rock, I can stay somewhat stable.
Thanks for reading!!!
Dy
You are shameful!