62: Whirlwind

Wow! The pace of these postings has really slowed down. I’m sorry for that. I’ve been getting a gentle nudge here and there, as well as a few expressions of concern. So… No problems. I’m doing great - just totally focused on the book, which is now titled “Unstoppable: My first years battling Alzheimer’s Disease”. I’m just over 35,0000 (100 typewritten pages) words into the first draft, and I’m really happy with it so far. When I sit down to write, it is in that which I am focused, and I’ve left the blog hanging a bit because of it. I’ll try to be a bit better about addressing this in the future. However, the good news is that there is a lot to talk about - it’s been a whirlwind the last few weeks.

I went for my second visit to my (good) neurologist and it was another hour long doozy! Folks, when you find a good doctor hang on to them - and if you don’t have one, find one. The medical experience can actually be positive and educational with the right practitioner. I was able to pitch nearly every idea I’ve had about my treatment to him, and it was all heard and responded to. As opposed to the scoffing of my other neurologist, this guy really is interested, beyond the most basic prescribing.

I spoke to him about my concerns regarding the Inspire device, my future with Leqembi, my interest in ongoing clinical trials, the various drugs or treatments that have been recommended or pointed out by readers and friends and asked about other forms of suggested treatment. Everything I brought up was met with a serious and considered response. I’ll get into a little of it:

• I asked if he thought there was validity to my thoughts of stopping Leqembi after my initial run was completed in favor of exploring new clinical trials. His response was that in some cases, the so-called maintenance dosing might not be called for at all. Leqembi has been proven to be a far superior drug than even originally advertised, and there was a real potential that all plaques could be dissipated by the end of the 18 month cycle. If that were to be the case - and a clean brain scan obtained, then the thought of going off the drug was not unreasonable. Plaques take years to build up, and if I monitored my brain activity via frequent neuropsych exams and careful observation, it could result in a situation where I could take that path. He promised to help find studies if I chose that route.

• He suggested, because I didn’t tolerate Donepezil well, that I might explore a few supplements that served similar functions on the brain. I’ve ordered them, but have not started taking them for reasons I will get into later in this post.

• I was wearing my ALZ FIRED UP hat, and he loved it. Suggested really working on getting the site known and that it was a great service and idea. So again, head over to http://alzfiredup.com and check out (and buy) our ideas. My doctor says so. We’re updating and adding fairly regularly.

• We talked a lot about some of the recent things that have come out concerning the gut biome, lithium, vagus nerve stimulation and other things. He was quite keen on the gut biome studies, and suggested that a meeting with a nutritionist who focused on this might be a good idea. He is also fascinated by the lithium study, and said he wished he could start prescribing it right away, but that the doses needed to achieve the study results would be catastrophic and that the negative effects of lithium far outweigh the positive for my requirements at this time, but he was really hopeful that somebody would come up with a way to make this a reality. He thought that vagus nerve stimulation would be a great thing for Parkinson’s patients, but would have no great benefit on Alzheimer’s. And finally, he had a simple explanation as to why stem cell therapy, at this time, would prove to be ineffective. The pathways to be repaired, he said, are far too long and complex. Much more work is needed before that will become an effective tool.

• I told him that I had cancelled the surgery for the Inspire because of my concern that I would not be able to have the MRIs needed in order to join clinical trials. His opinion was that correcting sleep apnea was far more important than an MRI for a clinical trial, and he would recommend doing the surgery if there was no other option so…

I agreed, at my next pulmonology appointment (which took place shortly thereafter) to give the CPAP another go. I made no explicit promises except to try. He suggested a newer mask called a nasal pillow. As opposed to the other times I’ve tried this, I actually had to go in for a mask fitting and training session. It has now been nearly two weeks since I got the device and I can say this without hesitation. I still hate it. But I’m wearing it - last night for the full night. It’s invasive and difficult to get used to (and these are all knowns) but slowly, I am getting used to it, and, according to the app that monitors my sleep, I’m having a very successful run of it. So I’ll keep on keepin’ on.

I had a few other encounters (mostly via zoom) of note - the first was an email, out of the blue, from someone who had seen my speech at the Pioneer Valley Walk, and taken my card. She had just found her birth family, moved to the area, and discovered that her grandmother had some form of dementia. She was thinking of founding a non-profit to advocate for the cure, and emailed me for advice. We spoke via google meet for over an hour, and I connected her with the advocacy wing of the Alzheimer’s Association and offered any other help that I could give. But I am so gratified that my speaking and my message is getting across, and those calls are deeply meaningful to me. A nursing student who attended an event I was on a panel at, has written to ask if I would address a bunch of her peers as well.

I was contacted by folks from Bio-Gen and Eisai (the team behind Leqembi) to see if I was willing to do any press work for them. Of course I agreed. That could be fun, and I’m looking forward to it. We’ll see what pans out.

The clinical trial that I was not accepted to because of the laxitude of my doctor’s office in sending my medical records reached out, and they have a space for me! It’s this one, and I’ve spoken to my neurologist about it and he thinks it sounds like a great idea. I go in for my first screening visit in two days. It’s a bit of a catch-22 though. You have to have amyloid plaque in your brain to participate, and if the Leqembi has done what my doctor thinks it might have, then I won’t have the plaque, and I won’t be able to do the trial. I suppose that’s a good problem to have. I’ll get a PET scan out of it, which is something I’ve been curious about for quite some time now. I cannot alter any medications for a time though, which is the reason that I did not start the supplements I mentioned above.

On the recommendation of one of the scientists I met while doing a talk, I’ve signed up for the Alzheimer’s Disease Registry. They’ll offer on-line neurological exams and monitor your changes for as long as you want to participate. Additionally, they’ll actively match you with clinical trials. I recommend all my readers that have (or are caring for someone with) Alzheimer’s sign up and connect with these good folks. It sounds like a great resource, and another good benefit to the world.

I’ve also joined a study, through the Alzheimer’s Association and the University of Southern California, which is intended to study the long term financial impact of living with Alzheimer’s. This is also a long term study, and is really necessary. For many people the costs of the disease are astronomical and if it’s not officially documented nothing proactive can or will be done about it. So I’m happy to be involved.

I’ve had conversations with three of my fellow advocates for my book. It’s fascinating the subtle differences in the way we’ve all handled parts of our diagnosis. But all of us agree that speaking out, owning the disease and becoming advocates has been a positive game changer in our lives.

And finally, as I mentioned at the start, I’m well into the book, and I’m hoping that someone out there will want to publish it and get it out to the people that need it. So if any readers know anyone, or know anyone who knows someone, I’d appreciate the introduction. I need an agent (probably) and a publisher (definitely). I DO NOT want to self publish. I think that what I have to say is important enough that it should be in bookstores and an available resource. Feel free to pass on the blog (there’s a contact form at the top of the home page) or my new email alzblog@outlook.com.

And, as always,

Thanks for reading and sticking with me,

Sean

Oh, and there’s absolutely no such thing as a “war on Christmas” so, Happy Holidays!!!!