Unexpected dystonia help

Dystonia, for those lucky enough to not experience is, is often related to PD and involves involuntary and often painful pulling or twisting of body parts, including legs and feet, or head and neck;  it is treated with medication and sometimes Botox injections.  I didn't have dystonia in my feet all the time, or even every day, but it was a regular visitor, especially in the morning.

My husband was sure that earthing (also called grounding) would help my PD, because pwp have a lot of free-radicals, a lot of oxidative stress that goes on that can be countered by earthing.  Many scientists believe that this oxidative stress is involved with degeneration of neurons that make dopamine. It's believed that there are too many unbalanced electrons (the free-radicals), with not enough anti-oxidants created to balance them out. Here's an article from the UK's Cure Parkinson's Trust that explains it.  Think of the benefits of going barefoot in the grass - one of which is that extra electrons from the earth can balance out the extra unstable atoms in the brain.

There's actually some science behind earthing - which is a good thing because it's pricey so there ought to be some proof of concept.  See  this article for a review of recent research.

How did grounding help me?  After awhile, I realized that I wasn't waking up with cramped and twisted-feeling feet (they didn't look twisted, but they felt twisted).  Prior to that, the pain would often wake me.

Taking two grams of Vitamin C at bedtime had helped for awhile - Vitamin C is an anti-oxidant, working to get rid those free-radicals that can cause some of the physical damage of PD - but it was upsetting my stomach to take that much Vitamin C at once.  My husband put a grounding sheet on the bottom of my bed.  There's always some skin touching it, even in cold weather, in between my socks and PJs.

We have a grounding pad under my feet in the living room, and in warm weather, that provides grounding, too.  When we camp - in warm weather - I'm outside a lot; while not barefoot, I do touch the ground, so that seems to help ground me, and dissipate the oxidation. I don't take the grounding equipment when we camp; I have a little dystonia sometimes when camping, but not much.

In the winter, I'm always wearing socks, which makes the grounding pad in the living room useless, so I count on the grounding sheet on the bed.  But occasionally I leave on the compression thigh-highs that I wear - and then my skin isn't grounded in bed at all because all my skin is covered.   The first time the compression stockings interfered, dystonia woke me; then I held onto the grounding wire for about 10 minutes, which seemed to help the oxidation dissipate and the pain stopped.

Was this a clinical trial?  Nope.  Just me; N=1.  But if this helps one other person, it's worth it.

I've tried the less-expensive grounding wristband, but it's not comfortable, and I forget to take if off when I get up in the middle of the night (amusing for somebody watching, but less so for me).  As far as I can tell, this wristband is the same one used by people working with electronic components, to ground static electricity.  If you're interested to know more, Google earthing.

I was skeptical that this would work, and it wasn't instant, but then I realized my dystonia was gone.  I did not expect grounding to work, so I don't think this was a placebo effect (where you expect a treatment to work, so it does).  I occasionally get twinges of dystonia, especially when I'm tired, but that's it - quite a change from twisting muscle cramps that could wake me up, and continue irritating me for hours.  Exercise wasn't improving this, so I needed something else.  For me, grounding worked.  Long may it last.

Images from 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.