Biohacking

Biohacking is described many ways (Google it!)  The way I define biohacking is experimenting on myself to make my life with PD as effective as possible, using, in my case, low risk means.

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

Does gluten influence Parkinson's symptoms? Maybe...

Recently I was trying out a low FODMAP diet because I was having, ahem, digestive issues.  Low FODMAP cuts out the things that can be irritating so that you can ease up on your gut, then you slowly add them back to see which was bothering you - so you do without foods that contain dairy, vegetables like cauliflower, onions, beans...  and gluten.

I was tested for celiac about 10 years ago, and I didn't have it then, but I decided to cut gluten out, too, since I'd heard that some pwp felt it was helpful to cut out gluten.

After about a week, I started noticing that my balance - which has become rapidly worse and worse - was better.  Every once in awhile, my balance felt...  normal.  You must understand that balance has been the PD symptom that drives me the most crazy.   I was sure the low FODMAP diet would help my gut, and it did. My gut felt better, even if my diet was boringly bland.  But by week 2, my balance was still going in and out, but when I'm out of the house, I don't feel like I'm about to tip over. In the house I'm not cruising furniture, walls, and doorways. I'm still walking awkwardly (PD problem of long standing), but walking doesn't make me constantly feel like I'm on a funhouse ride.

I figured this might help my gut, and it has, but my balance?

I also notice that my stance isn't as broad.  I had been placing my feet wider and wider to give myself a stable base; not doing that now.

The last thing - those tiresome pins and needles in my right foot and hand are dissipating.  I still feel numb in my foot, but the tingling is almost gone.  Still feels a bit numb.  No impact on gut (but it turns out there are people who are gluten-sensitive who don't have abdominal symptoms).

All the rest of the annoying PD symptoms are still here:  excruciatingly slow handwriting, finger tap is still slower on my right,  I still walk like Lurch, I still have to run to pee (and then wait for all the pee to dribble out), I still can't smell a lot of things.  I still have orthostatic hypotension (if I'm not careful I can faint when I stand up).  My speech is still quiet.  I'm still stiff.  I still hunch forward when I forget to stand straight.   I still have trouble maintaining stability when I turn. I still have trouble remembering words, and still have problems with multi-tasking.

All the things that exercise has slowed progression on are still here (most of the list above).  The thing that exercise didn't improve (or slow down) was my balance and my neuropathy - and both are now better. Not perfect, but pretty much where I was a 6 months ago - I walk like a drunk and I have to remember to pick up my feet.  I still need a cane, but I'm no longer considering a rollator to make it easier to stay upright.

I've been adding back dietary items to see how my gut handles them, and they influence my gut - but I have not added back gluten.  Tried pea protein - no impact on balance.  Tried cooked onions - no impact on balance. Tried dairy - no impact on balance. Tried beans - no effect on balance.  If I eat something that has a little gluten in it - for instance granola made with organic oats, but not oats grown separately from wheat - my balance is off and my neuropathy-foot tingles.

Turns out, there is a gluten ataxia - balance.  Hmm.  There's even a gluten-caused neuropathy - the pins and needles.  Double hmmm.

I'm still watching to see if there will be more improvement.  Supposedly it takes about a month for your gut to heal itself from gluten if you have celiac.  Will it take that long for the inflammation that has been influencing my brain to dissipate?  Longer?  Will there be any permanent damage (and how could I tell)?

Update:  Oops, turns out I had some gluten and my balance went wonky.  Head suddenly felt like a tilt-a-whirl, but why?  Turns out the dry roasted peanuts I had been snacking on are packed in a facility that also packs wheat. It's called cross-contamination.  Who knew?  Also, corn starch turns out to be often contaminated, too, so I have to look for that, as well. Ticked off royally, because I was really enjoying being funhouse-free.  By the way, despite the crazy-feeling head, I have no gut disturbance.  But turns out that happens to some people.

Gluten-free eating is, let me tell you, a royal pain - it takes a lot of research.  But if this gives me back adequate balance, will I live with the inconvenience?  In a heartbeat.

Images from Pixabay.