Friday, November 23, 2018

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.

Wednesday, November 14, 2018

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.

Monday, September 24, 2018

Strategies when balance becomes worse

I had to start taking my cane to Rock Steady and I hate doing it.  No choice, really.  My balance, when I walk, is getting worse.  I do a lot of exercise so that my core is strong, so that I can catch myself - which I do.  All.  The.  Time. 

In the house there are walls and doorways, but outside...   First I just used my cane when it was crowded - mostly to signal to others to give me a wide berth - or when I was on uneven ground.  Now, I find that a cane isn't enough, and recently when we visited a farmer's market on a grassy field, I needed to hold onto my husband's arm.  Now, I'm using the cane outside all the time, and inside if I'm visiting school.  In stores, I can generally get a shopping cart to lean on, which is easier than the cane.

Then there's walking when we're camping. Walking while camping involves being on uneven ground, even the roads.  The trekking poles are great for this.  I can't carry anything when I'm using the poles, though. 


I no longer use a purse, because even a cross-body purse can throw me off-balance.  I've found a great substitute in the travel vests from Scott.  https://www.scottevest.com/
Of course, in real life it doesn't look as neat as the images Scott uses, but it's convenient and means that I don't need to carry small items in my hands - keys, wallet, phone, papers, sunglasses, water bottle.  The pen keeps falling out of its special holder, but otherwise the vest has worked well.

But back to Rock Steady.  Boxing, hitting the long bag, I'm fine.  But walking across the open spaces has been more and more of a challenge.  The coaches have been great, letting me guide them with what I want, rather than making choices for me.  But I feel much more secure with the cane.  Darn it.  Wish I didn't need it.

Monday, September 10, 2018

Remembering to take your meds

Many of us have medications, plus vitamins, plus supplements to take.  Sometimes they can't be taken together because of interactions.  Sometimes they have to be rather precisely taken or we get thrown "off" - that unpleasant time when we stiffen up, can barely move, have terrible tremors, and such.

I recently started Levodopa - and have learned the hard way what happens when I forget to take my meds.  I am supposed to take them an hour before a meal, or  to wait two hours after the meal.  Before, I never quite got the difference between "on" (when the meds work, bless 'em) and "off" (when the meds don't work any more, darn it).  I stiffen up and lose my ability to write or type without frequent and frustrating errors.  Before I started the meds, I had to just live with it, but life is SOOOO much easier "on."

(And separating Levodopa from meals really is important, since protein vies with Levodopa for the same receptors.  When I first tried Levodopa it didn't work - because I took it with my protein smoothie!)

So taking the meds at the right time is important.  But how the heck do you remember to take them?  I tried using the calendar function on my smartphone, which I can set for the exact time, and has an alarm - and even buzzes on my Apple Watch, handy when I'm not near my phone.

Except the alarm would go off, I'd turn off the alarm then get distracted...  and forget all about the pill.

This happened every. single. day.  So I needed a solution.  I tried several apps.  Dosecast didn't work after the first dose, offering the third dose with no way to access the second dose. Had to remove it from my phone.  Medisafe insisted I needed a password, and that the password must include an upper case letter (among many other requirements); but then wouldn't let me capitalize the letter when logging in, so I could never even try it.  Had to remove that from my phone, too.  (Appleworld problem - not as many apps and not as well reviewed.)

Right now, I'm trying Round Health.  No login unless I want it, easy to enter the meds I want to take, and when.  This has a window of half an hour around each dose - 1/4 hour before dose is due there's a message to the phone; at time does is due - alarm on watch; 5 minutes late - another alarm on watch.  This keeps up until you tell the app you took the pill or 1/4 hour after the pill was due.   You can click on your Apple Watch that you took the pill, or you can click on the phone; either way, it keeps track of when you actually took the pill.  You can also shift everything forward x time just for one day - think of manually shifting all those alarms just because you woke up late; I can really see using this particular feature.  Round Health has other features, but I'm not using them at the moment so not going to talk about them here.

Fingers crossed this is the one.

Images from Pixabay and Twitter.

Monday, September 3, 2018

Keeping track of all your favorite Parkinson's blogs

I have several pwp who publish interesting / funny / insightful blogs.  There are also interesting blogs published by Michael J. Fox Foundation, Davis Phinney Foundation, as well as blogs about other topics that I'm interested in.

You could bookmark them.  But pretty soon, you're awash in bookmarks.  And how often do you want to keep checking back, anyway?

Fortunately, there are News Aggregators to come to your rescue.  I use Feedly (actually, their free version).

You create an account at Feedly.com.  You can read your Feedly feed (like a news feed) on any device, but it's easiest to set up and add feeds on your laptop, not your Smartphone.  It can look like this:

Now, to add blogs that interest you.  Go to the lower left corner of the screen and click on         +ADD CONTENT.  You'll see this:
Copy and paste the URL of the page that interests you (URL= web address, starting with http...)  As soon as you do, Feedly will give you a choice of what's available at the URL, which in this case in the blog called Sitting Comfortably.

As soon as you click on Sitting Comfortably (or whatever you wanted), you'll see the title of the blog, the title of a recent post, and how often it's updated.  Click on Follow.



And then you need to tell Feedly how you'd like this grouped.  You can use groupings you have already used, or click on New Feed and add a new grouping.  Just click on the grouping you want and you are now following that blog.


I just leave a tab on my computer open to Feedly and update by refreshing the page.  If that doesn't work, click over at the left on All

You can set up the feed in a variety of formats, controllable by the top right.  Play around and see which you like.  There is much more, but this will get you started.

For more, Feedly has a tutorial.   For PD blogs you might want to follow, see https://parkiesupport.blogspot.com/2018/04/parkie-blogs-there-are-parkie-blogs.html

Monday, August 27, 2018

Protandim for Parkinson's?

I'm in a Facebook PD group that was discussing Protandim, an herbal supplement.  A woman who sells the supplement quoted from the company website about "research" that showed this supplement is really amazing: According to the company website, " It's also been shown to reduce oxidative stress in humans by 40% in 30 days."  I looked and looked, but the only studies about Protandim that I could find were in test tubes, in mice, or showed that the supplement didn't do anything in humans. (Research on actual humans: Protein synthesis and runners and alcoholics.)

Finally, I found the abstract for the actual study that the company (LifeVantage) is referring to, from 2006.  (Here's the full paper.) There are just a few things wrong with this study. These include:


  • It contains a sales pitch for why the supplement contains these particular herbs and explains that they must be safe because they've been used naturally for a long time.  Since when does a sales pitch belong in a scientific paper?  And safety?  I thought of digitalis, which has been used naturally for centuries, but it would kill many heart patients; "natural" does not mean safe.
  • There's no placebo group in this study, so is the result from Protandim or is it just enthusiasm? There is often a placebo effect so it's wise to see if the supplement has a different effect from the placebo.
  • The people in the study were ages 20 to 78.  Really?
  • Some of the people, though we're not told which ones, are taking other "supplements."  We're not told what supplements they are taking, either.  Could this have influenced any of the results?
  • The text says there are 19 males and 10 females.  Group 1, which got a full dose, had 20 people in it.  Group 2, which got a half dose, had 4 people in it.  Why is it that the researchers don't tell us the mix of ages for each group, which genders were in each group, or how people were chosen for either group?
  • This is the best part: they had data on 29 people and refer to the 29 repeatedly in the text and illustrations.  But group 1 (N=20) + group 2 (N=4) = 24, not 29.  What happened to the other 5?  Their data didn't work out?  The researchers don't say.
  • Out of 5 authors, 2 are associated with the manufacturer of Protandim.  In fact, one is just associated with the manufacturer, not with any research institution.  What is he doing here?
  • One of the authors is also on the editorial board of the journal.  Possible conflict of interest?  Considering that elementary math was overlooked, this article doesn't look like anybody subjected it to even a basic review, never mind a rigorous peer review (which, frankly, should have caught all these issues).



Does all this mean Protandim is bad? No. Not at all.  What it means is that nobody can tell. 

So far, there are no studies of Protandim and Parkinson's, so we don't know if it's safe for pwp, never mind if it's effective.



Image from Pixabay.



Monday, August 20, 2018

Finding a PD physical therapist

I just found out a way to find a physical therapist who knows about Parkinson's in the US.  Thanks to Dr. Ryan Duncan, who presented at the Davis Phinney Victory Summit on 8/10/2018.

Use the website MoveForwardPT.com, from the American Physical Therapy Association.  Select the zip code or city/state.  This will give you a list of all physical therapists in your area, but only some of them will have experience working with PD.  So then from the list of specialties choose Neurological - which includes PD.


For more about why you would want a physical therapist, see: https://parkiesupport.blogspot.com/2018/02/physical-therapy-individualized-help.html

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...