48: Science

Yesterday two things of note happened. And they happened nearly simultaneously. Or, more like concurrently - or as part of the same journey. I had to drive into the big(ish) city to partake in a new clinical trial that I have been working towards for some time. It’s not a medical trial, but a scientific trial. The trial was actually suggested by my new neurologist. I may have mentioned it before, but it’s a low voltage current trial - that is to say that the researchers will monitor my brain with an EEG while applying different phases of electricity in order to see if it will affect my long or short term memory. So, this is not a curative thing, but an analysis into the deeper functions of the brain to determine if there are any ways to jump start (pun intended) failing memory functionality. It’s a five week trial, and yesterday was a no-shock-treatment baseline analysis. And I’m pleased to say I think I did really well on the preliminary paper based neuro tests. I’ve taken many of these same tests before and yesterday's results showed me that the work I am doing on brain preservation is working. I’m pretty happy about that. Now, of course, there are loads of potential reasons why I did well besides my work, including the fact that I know most of the tests already - but I’m choosing to see the most positive upside that I can.

The first part of the second part of the test was when I was hooked up to the EEG and computer based images were flashed at me in groups of 40 as a memory test. (By the way, check out that bruise and swelling on my left arm. The Longest day hike is still leaving memories!)

I won’t go into details on the actual test (it might be proprietary) itself, but in the practice session, I got a 28/40. I was told by the administrator that they’d like to see me over 30. So then I got a 36, and felt pretty good about that. Then a 38, and then finally straight 40 for the remainder. I felt really good about that. I just had to come up with an internal algorithm to remember the patterns.

Test part 2, however, was a completely different story. Flashing changes of color and position - too fast for me to get a handle on, with a standard X-Box (or whatever) game controller for selection. (I’ve never played those types of games - or rarely - so it took a little getting used to.) It was a nightmare for me. I feel as if I got absolutely nothing right. Of course, I was told later, the point was not to get them right, but for the scientists to analyze my brain waves. So, hopefully they got some good data. It was a tad demoralizing though. I’m interested to see what happens next week when I go back and the lovely cap is appended with electricity. The things I do for science, hmmm.

I talked to the researcher about my previous trial (at a nearby competing university) with the music and light. He was fascinated by the concept and said it was quite interesting and novel. He then told me of research being done at yet another competing university nearby into 40Hz lighting and sound as an effective treatment. I gleefully told him “yeah, I’ve already got that!” It’s the Beacon40 Light and noise that I use all the time! He said further research is being done at that same competing university nearby on direct 40Hz electrical stimulation on the brain! It seems that this particular bandwidth is something that is really worth exploring. I’m going to try to get in on that trial too - once this one is over. I’ve written to the professor running the program, and hopefully I hear back from them. It’s amazing to live so close to an area where so much good science is being done. But, the researchers did tell me that funding is growing scarce for projects like this, which is really sad. While I’m certain that there are a few good things for a few people in this so-called Big Beautiful Bill, I do fear that the results, for the medical community (those who study and care and those who need care and study) are going to be catastrophic. I’m disappointed in America today, on its birthday, and I feel no real reason to celebrate its decline.

The second thing of note was the discovery, on the drive in (and again on the drive out), of a new band (to me). Rarified World, by Nicholas Tremulis & The Prodigals. This is one of the most interesting and unique records I’ve come across in some time now. Fusing burlesque style big-band arrangements with blues, funk and punk rock along with gritty lyrics and a wicked sense of humor - this one is jumping right into a current favorites list. As I’ve said before, it makes me really happy to discover new music, and this record made the stop and go traffic fare more bearable. Way better than listening to CNN bemoan the loss of all that is great about our country, and comment on the betrayal of our nation by our elected House and Senate members in terrified capitulation to a despot. Here is a link to an article about a politician who did not bow to the pressure, and voted for what was in the best interests of his constituents. The way you’re supposed to do it. Too bad we don’t have anyone with that level of fortitude in our congress, eh? Anyway, Rarified World is a great, fun and innovative listen, and gets high recommendations. (Beware of cursing in the lyrics though if you’re easily offended.)

In other news, I was recorded for a podcast the other day. It will be aired next week - and I’ll send the link then, or keep an eye out for it here. I was interviewed, along with a caregiver from a neighboring state, by the Alzheimer’s Association podcast host on our shared experiences at the AIMForum last month. Along the way we touched on our personal stories, our hopes and fears and myriad other issues.

It was super fun, and I hope I can get to do more of them. I suggested that I’d love to talk about the beneficial effects of music for people with Dementia, and on the need for continued clinical trials.

In that light, I want to mention that I’m open to speaking or writing on nearly any front or format. If any readers know of a receptive audience, let me know and I’ll reach out. Or you can share the blog and tell them to reach out to me.

I had infusion number 22 last week. There was a brief hiccough when I pointed out my bruised and swollen arm. Apparently a local neurologist had issued a halt order on infusions for people who fell. They had to call my neurologist to get permission to go ahead, and he said go - so it went on! Still, a moment of trepidation. I did manage to convince the infusion nurses to donate to the walk, or to start their own team. They were pretty positive about that, so hopefully something will happen from that front. They hung my flyer, and I look forward to getting some donations to the Alzheimer’s Association from that front.

I’m also looking forward to getting some more (no matter the size) donations for you - the readers of this blog. The link is here, and the Association could really use the money for many important things. I’ve seen the upcoming 10 year plan, and there is some great work in process, with some really great outcomes planned. (Also, Wendy is still in the lead, and I do want to surpass her totals - it’s all for the cause.) If you are in the habit of giving birthday gifts, give one to the Association in honor of the 4th of July. Do it in protest. Do it because, with the passage of the “BBB”, sources of funding for research, treatment and caregiver support will dry up - especially in rural areas. Do it because you know that someway, somehow, someday, you will know or love someone whose life will be shattered by the disease and you want to help ensure that someday, somehow, someway, there will be a cure. Be a part of it.

Thank you, in advance, for donating… and even more,

Thanks for reading,

Dy