12. Future

Despite many things leaning to the contrary in the world right now, there are things for me to be positive about. Due to the successful roll out of Lecanemab (Leqembi) and Donanemab (Kisunla), there is a renewed interest in attacking Alzheimer’s. Unfortunately, there’s still no cure for the disease. The two new hot drugs, as mentioned copious times on these pages, offer only to slow down the progression. It is akin, as told to me by a researcher (and deeply paraphrased by me), to removing spoiled food from a broken refrigerator and expecting to have a working appliance afterwards. In other words, removing the Amyloid Plaque from a broken brain does little to fix the root cause of the break. It is just clearing out the garbage and hoping the stench does not proliferate any further. Anything you put back into the fridge will spoil in due time.

I spoke to this researcher yesterday after I responded to a notice of a clinical trial being run that aims to fix (at least in part) the broken brain by implanting the patient's own stem cells directly into the brain. I can’t go into depth here about what the trial consists of because I’m far from smart enough, but suffice to say that it sounds really interesting and shows that there are unique minds at work on all angles of this problem. The trial is in stage one right now, which is a very early stage. This is not a drug (or fix) that will be on the open market in short order. Thankfully, there are more tests on its efficacy and safety that need to be (and will be) done, but there is hope for the future. I’m sure there are other trials running now as well that I don’t know about. 

Fortunately (I suppose) for me, I don’t yet qualify for this trial because I’m not sick enough. I’m considered to be a FAST stage 3 of Alzheimer's (Mild Cognitive Impairment) and the trial is for folks in stage 4 and 5. So, we agreed to keep each other’s phone numbers and connect in a year or so, when the trial moves to stage two, and I become eligible to participate. At that point, I’d have to come off of Lecanemab for 90 days before I could join the trial. I believe I have mentioned that Wendy had to do something similar for one of her trials. It’s a risk, but one I'm willing to take for a chance at a new, promising approach.

Of course, as we all (well, 49% of us at this point) know, there is a risk of a massive change to our healthcare system and being on Lecanemab could (possibly) no longer be an option for me - pushing me further towards alternative treatments and clinical trials. I am beginning deeper research into these treatments should my benefits change. The future, in parts, could be bright. Of course, we could be diving deep into a dystopian hellhole as well. Cabinet appointees (and the “request” to bypass congress) do not do much to dissuade this level of thought. Thankfully - at this point - there are things to agree with regarding healthcare and the overwhelming reliance on medication in our nation. That said, if it is working, I’d be loath to see it taken away. I’ve mentioned before how the light therapy trial I’m doing feels like it’s helping. I’ve also been eating better, drinking (never a huge issue) less, exercising my brain and body, and trying to learn as much as I can about how the effects of existence in this world can have causality to my condition. That said, I am staunchly pro-vaccine and support the pharmacological and scientific research into and the creation of new medical methods of care - and will put my health where it matters, and participate in that research when possible. I’ve spoken to people who have invested a lot of their health care into alternative therapies. Sometimes it works, sometimes it doesn’t. Personal choices, when things are related to one’s own body and process, are wonderful and I’d be really sorry to see them taken away.

On another note, Wendy and I spent just over a week visiting Jonas and Pickles in Arizona. We had a lovely time (despite breaking all the above mentioned rules regarding self care) and found a lot to like about the landscape there. There are (albeit barren) mountains within easy reach of the city and, at least in the fall/winter, outdoor activities are plentiful. We went on a few hikes, and looked into second home possibilities. It’s a super expensive place though, so we’re still not quite sure of its manageability. However, when researching clinical trials, I was inundated with locations in the greater Phoenix area. It seems to be a hotbed for medical research (perhaps because of the sheer number of retirees heading that way), which is, of course, a huge plus. Also, there are concerts, theater, comedy, karaoke (amiright Wendy?) and other artistic endeavors to explore. We went to see something called Drunk Shakespeare, which was super fun. A troop of 5 or 6 actors, one of whom has to down a minimum of 5 (maximum of 7) shots of liquor, perform (loosely) a Shakespeare play - in this case it was Macbeth. We had a screamingly good time! Allegedly the drunkard changes each show, as does the play performed. Totally worth it, and highly recommended if it’s playing in your area.

For the first time since being “suitcase shamed” by a group of friends when we traveled together to VietNam in 2015, I had to check a bag - because I took my gamma light. It just barely fit into my suitcase and its presence allowed us to pack our own pillows (for padding - yeah, right) which we might not have normally done on a plane trip. The light traveled well and worked just fine after each leg of the journey. Also, because I had checked my bag, I had room to carry my new toy back with me. We went, the four of us, to a local guitar shop called Bizarre Guitars. On the wall I saw my holy grail - a red Gibson SG with black pickguard. I mentioned to Wendy that I had been lusting after this particular guitar since seeing Frank Zappa playing one in Baby Snakes. Also Derek Trucks plays one, so… Wendy bought it for me! I got to use the phrase (not planned) “This Alzheimer’s thing is working out really well for me!” which I (and thankfully everyone else) thought was hilarious. It made it home safely as carry-on baggage, and is now hanging on the wall directly to my left, where I can see it. I’ve played it a bunch already - not well - but at least I’m doing it… I’m looking forward to starting zoom lessons with Ant shortly. The guy's a wizard and I’m grateful for his offer.

Other than that, I’m in the middle of week 7 of the light trial, so will be needing to travel to Boston to repeat the long day and <sob> return the light kit. I intend to buy one for myself and continue the therapy. Also this week, I had infusion number 6 which went a lot smoother than the last one. Started right on time and ended that way as well. No ill effects. I go for my week 6 MRI on Saturday. Things are moving steadily. I feel like it’s forward - but it is far from definitive. There’s a lot more work to be done - by me and by the greater community. But for now, I feel assured that the right folks are doing the right work. Again, unless they get hampered by governmental overreach. 

Thanks for reading!

Sean