This includes trying out vitamins and other supplements, like melatonin (tried it, but it didn't seem to help.) It also includes trying out devices like the "red hat" (red and near infrared light), and grounding/earthing sheet to deal with all my extra oxidation. Sometimes they work; sometimes they don't (if my test results show that I'm low on a vitamin, then I supplement, whether or not it feels better. However, I've had to cut pills in half to get to a level that my gut likes, since vitamin-makers seem to subscribe to the more-must-be-better school.)
Similar to formal case studies written by physicians about individual patients, sometimes we call this biohacking N=1 studies. Our responses to PD medications are already quite individual, so what works for one may not work for another. At the same time, there is not a lot of funding for formal clinical trials for vitamins, supplements, and other treatments that can't be patented. Not that there are no studies like these, but we have a progressive disease, and often can't wait for somebody to formulate a study, obtain funding, invite participants, conduct the study, and write up the results; just the writing up of results can take 2 or more years, and as I said, meanwhile we are progressing.
Doctors are often not enthusiastic about this self-experimentation, but they have mostly treatments that deal with symptoms, some treatments better than others. I make sure to let my neuro/MDS knows what I'm taking. The only "medicine" that has been demonstrated to slow down progression is vigorous exercise (and we still don't know the optimum kind of exercise/duration/frequency.)
My latest biohacking experiment has been with caffeine, which seems to at least provide symptomatic relief. I've been eating two squares of 70% cacao dark chocolate when I first wake (often around 5 AM); I don't take my first dose of c/l (carbadopa/levodopa) until 8 AM. I realized that when I eat the chocolate, I feel great, and my keyboarding is fluent; when I can't eat my chocolate, I'm stiff and my keyboarding is slow. Caffeine is an important part of chocolate, and has been found to assist in making pwp feel better (and who doesn't like an excuse to eat chocolate?)
I tried expanding this by taking 100 mg caffeine (1/2 a Nodoze caffeine pill) with breakfast, and the same with lunch. Any caffeine after lunch lasts for a long time, and interferes with sleep - and lousy sleep leaves these other annoying symptoms in the dust, so I do nothing that interferes with sleep. I started keeping track of finger-tapping on my affected hand, since that's quantifiable. When I compare before I take the caffeine to after (when I'm "on"), the finger tapping sometimes improves, sometimes not - but I can tell if I'm stiff and keyboarding is easy - not so quantifiable, but works for me. (In other words, forget the finger tapping and go with keyboarding.)
Note: discovered that Nodoze, and most caffeine pills, are not gluten-free (they include corn starch, which is sometimes contaminated with wheat). The results of accidental gluten ingestion for a person who is gluten-sensitive are unmistakable, unfortunately. Usually I remember to read all the ingredients, but not this time. So I had to search for GF caffeine pills and pause the caffeine experiment for a few days.
Once I found another caffeine supplement, I was just taking caffeine with lunch. But the only caffeine that isn't like Nodoze (doesn't have corn starch) is basically concentrated coffee. After a few days, the supplement gives me what coffee gives me: um, the runs. Caffeine in soda or chocolate doesn't cause this, so I know that it's the coffee that's a problem for me. Rats! The caffeine did seem to make me less stiff.
But my MDS has me taking an extra dose of c/l (4 half-pills instead of 3, 4 hours apart instead of 5). So far that's helping. Fingers crossed.
And I'm still having chocolate when I first get up. The sacrifices I make for science.
Images: Pixabay
