61: Choices

It’s been a busy couple of weeks since the last post - several concerts attended and several speaking engagements done. Since the last post was a summation of the day of the Pioneer Valley walk, it’s really been nearly a month since a general update, so here goes - as best as this addled mind can recall it.

I had some bloodwork done, and in getting it read, it was determined that I was, besides having Alzheimer’s, in excellent health, so I came off of three medications - one for Hypertension (I’m still on some, but not three!), one for Gout, since my Uric Acid levels were really low and I haven’t had a flare in years, and finally, I went off of my statin - which I was only taking because my neurologist wanted it for stroke prevention, but I’ve have been hearing too much about the negative effects of statins recently to want to stay on - and my PCP said my LDL (I think) was really low. So, three less pills a day. That’s a good thing!

The other thing that came out of this doctor visit was, because I complained about it, a series of phone calls to dissect the fact that because of their negligence in sending my medical records over, I lost a place in a very promising clinical trial. The first call came from an obviously low level functionary, who told me they were very sorry, but that really it was not their fault as they outsourced medical records. I told that person, who - like many in that level of communication in the medical industry today had no power or seeming empathy - that not our fault was a fallacy, because indeed, they were my doctors and it was, in pure unadulterated fact, their fault. I apologized for being snappy because it actually wasn’t her fault exactly, but sadly, she was the one the office elected to point the finger at and say “you make the call…”. No matter the issue, I dislike being snippy with low level functionaries - no matter how detached they may be. My wife would have chewed her face off. Just saying. I ended the call with a request to speak to someone who would actually have some power to do something rather than just deflect blame.

Quite a few days later, with the incident relegated to the moldering dust heap of the back of my mind, slowly being eaten away by the plaques, I got a call from someone else in the doctor’s office. This time I spoke to a reasonably well informed and utterly contrite person who, while we both acknowledged that nothing could be done to help the past situation, accepted the premise that because her office had hired the company who did not provide the records in a timely manner they were ultimately at fault. Fat lotta good it does in the short term, but it does feel good to be heard at least. Wendy mentioned that HIPAA actually stipulates that records must be transferred in 30 days or less, and that were we of the litigious sort, we would have a very winning case on our hands. I don’t really care about the money - but I want to ensure that in the future, my record requests, no matter how odd they might seem, receive priority status. I got that promise - but I still have my doubts. I explained (not that I should have to) that clinical trials might very well become the thing that keeps me alive. This was not just a fancy - but a real medical necessity. I reminded the nice lady that they were actually managing people’s lives and futures, and that farming them out to a big business that manages, perhaps, millions of records, is not in the patient’s best interest. Ever. It is yet another call for self advocacy. These clinics and practices are farming out your life. You are the only one who can (or will) ensure that it is managed to your specifications and needs.

I’m up in arms about this for many reasons - but the biggest for right now is that I’m coming near (10 more infusions) to the end of the first round of my Leqembi treatments. It’s been the real deal for me, and provided that I still have health insurance and that “maintenance” doses are covered, the general plan calls for me to go onto monthly infusions thereafter (or hopefully the new subcutaneous injection). HOWEVER, I’m considering going off it (after consultation with my “good” neurologist, with whom I’m meeting this coming week) and joining some sort of clinical trial. I’ve been rejected from quite a few because they can’t get good data while I’m taking Leqembi. That’s understandable. And there is so much awesome research being done these days, with such interesting processes, that I’m sorely tempted to try something out for a year or so. I do know (and fully understand) the risk - which is why my Neurologist will be consulted - but my heart leans in that direction. More later on that, but consider this an un-tabled conversation.

I did a zoom based conference with a bunch of medical students which went really well. We talked about ways they, as potential doctors and care workers, could be more empathetic and helpful to newly diagnosed people. They were a bright and interested group and I had a lot of fun doing it. Unfortunately the presenters didn’t archive the session, so I don’t have a copy (either to keep or to share). It’s too bad, because it was a good one.

My much talked about walk is over, but Wendy and I went out to Phoenix to join Jonas and Pickles and walk with their team. The Phoenix walk is HUGE, with well over 5,000 participants and a 1 Million Dollar + goal (comparatively, our walk had a goal of under 300K.). We had a lot of fun, the weather was beautiful and I managed to get Jonas and I on local TV for a quick interview. (Please note the Alz Fired Up shirt - You can get one, or many other items at Our Website)

I spoke to someone privately about doing a radio show with them - it was a finance based show talking about the things newly diagnosed people needed to take care of. I gave them my card and link to this blog and told them to give me a call - I’d be more than happy to do it. They never did, and I learned that the radio station was a right-wing AM Charlie Kirk loving place. So perhaps they read this blog and decided that I would make a scene. Well, if you’re reading, I won’t. Fighting Alzheimer’s and helping people regardless of political affiliation is what I (and the Alzheimer’s Association) do. There’s a real reason why I was wearing purple that day, so I hope you read this, and I hope you have the wherewithal to have me zoom in for a chat. But it was nice to see J & P and reconnect with her lovely family, who came out for the walk and have been wonderfully supportive.

Immediately after landing back home, Wendy and I went into the big(ish) city so I could be on a roundtable at an international Gerontological conference. They were hosting a panel called Patient Perspectives of Disease-Modifying Therapies for Alzheimer’s Disease and I would be one of three Alzheimer’s advocates - all taking Leqembi - there to discuss it. It was actually done twice, once in private, on video for later broadcast, and once a few hours later in front of an audience. At the taping, I realized that all the other advocates had brought their care partners with them - and I had left Wendy back in our hotel. So we got her on stage for the live session, and it was really nice to work up there with her. We’re a good team, and I hope she will join me more often. I’ll post a link to the full one hour roundtable when I get it.

Beyond the medical, we’ve been to several concerts, including another session with the great Ruthie Foster - this time as a solo gig - just her and her new guitar (which she has named Mavis). I’ve seen two people in my entire life who can captivate a room to stillness all by themselves. The first is Henry Rollins, whom I’ve heard speak many times. Henry is a former punk rocker, lead singer of Black Flag. He’s now (and probably always was) an extremely astute and witty political commentator, who weaves tales about life on the road with social commentary and sometimes photos. We see the world very similarly. He comes on stage and starts talking. And leaves nearly two hours later seemingly without having taken a breath. Here’s a show from 2004. It’s exhausting just watching him. And completely exhilarating. Ruthie, on the other hand, is as smooth as can be, and even though she captivates utterly, you leave feeling relaxed and well cared for. Here’s a solo show at the… um… what was formerly known as the Kennedy Center, from 2024. She was sitting when we saw her, because she allegedly forgot her guitar strap, so it was even more home-like. It was a great show, and I’ll see her whenever she’s in the area.

A couple of other concerts and a pretty good comedy show rounded out the past month well. I’ve got some interesting things in the pipeline - several organizations have reached out - seemingly having found me through this blog, which is great. I’m meeting with one of them tomorrow. I’m not 100% sure what they’re after, but I’m always in for something! And, I’m about 25K words into the book, and it’s going well. I am really hopeful about this project and the good I might be able to do. So I might be blogging a little less - only when there’s something important to note - because I’m focusing all my writing energy into the book. But I’ll still be here!

I also attended a webinar done by the group Compassion & Choices (who I’d really love to do some advocacy for, but it seems as if all they want is my money - not my effort) and left feeling a tad deflated. None of their initiatives - all of which I support - include compassion or choice for people dying of Dementia. I understand that organizations like that have to weave very delicate threads - that the mere suggestion of any impropriety could be enough to curtail all initiatives - but their disregard of the pain of a dementia related “fade to black” is callous to my eye. And, as I’ve stated in the past, the fact that laws are written in such a way as to protect a microcosm of people, while potentially causing harm to others is not something I’m happy about. But it’s far bigger than this - while I was at the Gerontology conference, Wendy and I went to a food court for lunch. We sat at a table next to a bunch of conference attendees - perhaps they were going to be presenters based on the snippets of conversation I eavesdropped on. Anyway, a little bit I overheard was related to some process or other they were going to try to implement, but they were worried that - despite how good the process would be for some - other people would take umbrage. They were discussing whether to table the initiative or not. (I don’t know what it was, nor do I know the outcome of their talk). And that made me annoyed. I do not believe that we should not create processes for some because others might abuse it or be offended. Like SNAP - for MOST PEOPLE, it’s a lifesaver. For a very few it’s a way to game the system. Let’s figure out a way to stop the gamers without hurting those that really need the lifeline. Let’s figure out a way to allow people with dementia to enact a plan while they’re lucid that can be carried out by… someone when they’re not, without making, say, bi-polar people (to name one demographic), think that they can and will be forcibly put down. There’s got to be a way. But for now, my needs are being shunted off so as not to cause any waves. And I don’t like that.

Finally, after nearly 16 months, I was finally approved for my social security disability. That money will be ever so helpful as we move forward, and I’m really grateful to those who worked (despite not being paid at the time) to approve it.

That’s all for now - I’ve got a book to write! And I’m going back to using my real name!

Thanks for reading!!!

Sean