42: Motion

I’m going to date myself here a tad, as well as give profound insight into my intellect, at least at the time. Back in the early 80’s there was an absurd TV show called The A-Team. Absurd because nobody ever got hurt. A helicopter could crash into a cliff, burst into flame and crash to the ground, but still the occupants would stagger out, perhaps bruised and shaken, but that’s it. Also absurd because it featured Mr. T, who needed to be knocked unconscious every time the team got in a plane. (I was called Mr. T when I was working in schools, and some of my students bought me a “Mr. T. In Your Pocket” that I still have. WIth the push of a button, I can hear catchphrases such as “Quit Yo JibbaJabba”, “I Pity The Fool” and my personal favorite “Don’t give me no backtalk, sucka!”.) The reason I digress so far is because of the catchphrase often uttered by the team leader, played with aplomb by George Peppard. As the show wound down to its inevitably positive conclusion, he’d utter “I Love it when a plan comes together” and light up a large cigar. Now, I don’t smoke, but I really do love it when a plan comes together, and this week, oh yes, my friends, plans came together. They surely did.

But, to keep you in suspense for a moment, I cannot start this post without mention of the passing this week of the great Foday Musa Suso, whose 1984 album (that was also part of my morning light routine today, along with the 1992 album by Bill Laswell’s ever changing conglomerate Material called Live In Japan,) Watto Sita. Suso was the man who introduced me to the Kora and to the concept of a Griot, which is a really cool tradition. Watto Sita, while hampered by the ubiquitous electronic drums of the early 80’s, is nonetheless an adventurous recording, blending hip-hop beats, jazz, funk and traditional African melodies and vocals. It’s been done far better since (including on the Live Material record I listened to later the same session), but this record was really instrumental in broadening my ever expanding musical palette. Beat heavy, it worked wonders with the lights. The Material record features standout playing from Suso, Bernie Worrell from P-Funk, Bill Laswell, Ginger Baker from Cream, and Pharoah Sanders, the protege of John Coltrane on Saxophone along with several other stalwarts of the Laswell cadre. A far more advanced record, it benefits greatly from the live setting.

Back to the news. Four major items to report.

1: The New Neurologist. He told me specifically that he didn’t want me to blog about him, but I’m going to do so anyway. It’s important that people know that good - even great - doctors are out there and you needn't settle for second, or even third best. All you need to do is be persistent, and perhaps go to a major metropolitan area (although my Endocrinologist practices around me, and she was incredible. I was super lucky to find her the first time around!). I was with this new doctor for over two hours. Unheard of. His appointment after mine didn’t show up, and rather than send me on my way, he elected, after an hour of diagnostic talking, to run a full neuropsych exam on me and grade it. After it was all done, he looked at me and said “Has anyone ever mentioned that you might also have ADD?”, to which Wendy, had she had a mouthful of water, would have sprayed it all out over the room. She’s been poking at that for years. Some of my issues, he went on, are cognitive for sure, and the Alzheimer’s diagnosis is a valid one. But… Some of the issues are concentration based, and perhaps one of the reasons you write better than you speak, in general conversation, is that you’re fully focused on the writing.

Now, keep in mind, please, that I have never sat with my other neurologist for longer than 15 minutes, and that often feels like I’m “wasting” his time. He’s not done a single test (besides the MRI and PET scans). I’ve never received a recommendation on what I might do, or who I might talk to (besides the Leqembi infusions). His clinical notes are terse and methodical - showing no insight or clinical care. I received a 15 page case note file within an hour of leaving the new doctor’s office. In it were not only his impressions and thoughts, but links (direct in the digital file) to clinical trials, research studies, reading material and brain games for me to play. There is absolutely nothing I could have asked for in this first visit that didn’t happen. Unfortunately, I still have to see the old guy, but only for Leqembi follow ups. As the new guy put it: “Let him be the meds guy, and I’ll be the care guy!” I mean WOW! All the waiting definitely paid off, and one further example of how self advocating gets results. New doc did prescribe a new medication for me though, which is supposed to help improve cognition. We’ll see.

2: We had a conversation last week with the public policy manager at the local Alzheimer’s Organization. It went, I think, really well because, about midway through, she asked us if we’d be interested in heading out to Washington DC to join the Alzheimer’s Impact Movement Advocacy Forum! It’s a three day affair, culminating with planned meetings with all our state senators and representatives. Since I’m from a solidly blue state, I will be meeting with people who are already on our side, for the most part, but trying to convince them that we are worth their fight, and that by closing down access for foreign students, the US is effectively putting an end to much of the scientific research being done in America outside the private sector. For example, nearly (not all) all the students involved in my sensory trial were of Asian descent. If they are forcibly removed from the field of play, that trial would more than likely end. I’m looking at another trial right now that is happening at Harvard. Once again, this administration’s short-sighted and puerile punitive lashing out is causing major issues - and while I presume my senators and representatives are well aware, I shall not fail to bring it up. I will, of course, as a representative of an organization that is markedly purple (the cure is neither red nor blue - it is a truly bipartisan issue that nobody should be against) need to reign in my base instincts and play nice with everybody - in hopes of bringing everybody on board with this pressing issue.

3: One of the upsides of a neurologist with sights outside the general medical industrial complex is pointers towards clinical trials - as I mentioned. Today I was approved to join a study being done by The Reinhart Labs out of Boston University. This study will assess the efficacy of transcranial direct current stimulation (tDCS) on memory loss due to Alzheimer’s. I’ll do a 5 week rotation of 4 hours a week. I’ll update more when I know more - especially if I’ll be able to see the results (which I’ve asked about).

4: Finally… As I mentioned in my last post, my surgery was denied at the last minute by my insurance company. I spent a bunch of time tracking down all the information about my attempts to use CPAP to give to my surgeon to assist him with fighting the good fight. I tried to upload them to the portal last week, and the upload failed, so I waited until today to drive them over to his office and hand deliver them. No problems there. When I got home, there was a letter from my insurance company informing me that my denial had been reversed and I was approved for the surgery. No idea what happened, as communication has still been zilch. But I have it in writing. So the surgery (probably in July) is on again! Long time readers will recall that this is nearly the exact same scenario I went through when trying to get approved for Leqembi. Not sure why this is the way things work, or who served as an advocate for me, but I’m asking no further questions at this time.

So yeah…

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Dy.