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.

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.

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.

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

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.

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

Driving with Parkinson's

It's ugly.  One woman posts on a forum that she can only brake if she pushes her leg against the side of the console between the two front seats; should she be driving, she wonders.  For the sake of other people, and herself, I hope she does not.

We lose capabilities over time with PD - sometimes muscular strength (so we can brake in an emergency), sometimes flexibility (so we can turn around to back up safely, and can move our foot from accelerator to brake).  And then there is my personal favorite, multi-tasking (so we can keep track of everything happening around us, keep the car in our lane, keep track of traffic signals, keep track of cars pulling in...)

If we're smart we recognize that some kinds of driving are too challenging, and don't do them - maybe stop driving at night, or when the traffic is heavy, or on highways.  We all know what has become harder.

Many days, for me, getting in and out is the hardest.  Yes, I've practiced pivoting in a chair, but that doesn't have the d**n door in the way! 

AARP has a Safe Driver Course, available to anyone, but less expensive for members; you can take it in person or online. https://www.aarpdriversafety.org/   Although it's oriented to older folks (and though I sure don't feel old, I am one of those older folks), it also looks at disability and the decision to continue driving.

Here's what they cover:

The AARP Smart Driver online course covers:

• Research-based safe driving strategies.
• Information on the effects of medication on driving.
• Preventive measures to reduce driver distractions.
• Proper use of safety belts, air bags, anti-lock brakes, and new technology found in cars today.
• Techniques for handling left turns, right-of-way, and roundabouts.
• State-specific rules and regulations in 19 key areas, including construction zones, child safety seats, school buses, cellphone use and more.
• Easy-to-follow format incorporating adult-learning principles.

I recently took the course.  I've taken it before (it changes regularly, so much of the course was new).  I wanted strategies that would help me be a safer driver, which was part of the focus of the course.  I've recently retired, so no longer have to drive in snow or sleet  - that means I can avoid driving in challenging weather - hallelujah!  I already avoid night driving and heavy traffic.  Highway driving is exhausting, so I avoid that, too.  I spend time plotting alternate routes so I can avoid challenges.

My husband does the highway driving for us.  I looked into the local Dial-a-Ride, and I've installed the Uber app on my phone, just in case I need it - not cheap, but neither is an accident.  The AARP course also helped me see how much the car is costing (repairs, gas, insurance, taxes...), which makes the alternatives look less expensive.

Each pwp is different.  Some can drive anywhere, any time.   Some can't.  Some will never have to give up driving, but some of us will. We all need to look at this - all of us.

Image from Pixabay

Technology that encourages exercise

I like to use tools to help me keep track of all that I need to do, and how well I'm doing it, especially when it comes to exercise - because that's medicine. My recent experience is with the Fitbit Alta and with the Apple Watch 1.

I had a Fitbit Alta, which told me to get up once an hour, kept track of my heart rate, and tracked my sleep (different Fitbits provide different features).  After 8 months the sleep tracker stopped working right, and the Fitbit often wouldn't remind me to get up. And it was hard to get the Fitbit to show me the time - ever.  But the watch part still works, so now my husband has it.

There was a deal on an Apple Watch 1, which cost about the same as the Fitbit, so now I'm wearing the Apple Watch, which is paired with my iPhone (also a recent deal when my Samsung phone started failing).  Since the AW only works with an iPhone, I would not have considered the AW before. Gotta say that now that I've figured it out (mostly) the AW has much to recommend it.  Besides the heartrate, the AW does actually bug me to get up - but not if I was active during this hour - so it doesn't bug me when it doesn't need to.  I also can select from a bunch of types of exercise, called Workouts, and use the AW to keep track of what I did with the calories from exercising, time spent exercising, and number of hours I stood up.  Fitbit keeps track of minutes of different kinds of exercise - and sometimes counts the exercise correctly, but often does not.  I really got fed up with the inconsistencies - sometimes it would count 35 minutes on the eliptical as exercise, but other times it would ignore it.

Just like with the Fitbit, on the AW I can set goals - not steps, like on the Fitbit, but movement.  If I wanted to count steps (I don't), there are apps for that.  AW won't let me set goals for time doing exercise, or even for standing every hour. Bafflingly, these are goals to work toward, but I don't set them.  More on this in a bit.

One thing that I really like about the AW is that I don't need to do a little dance just to find out what time it is.  Often the Fitbit wouldn't tell the time no matter how much I tapped on it or turned my wrist - ahem, a watch that doesn't tell time is of limited value.

Both devices have different formats for the watch face, but the AW shows more information on the clock face that you customize - in my case analog time with a second hand, heart rate, weather, date, next appointment on my calendar (though there are many other choices, including workout, world clock, timer, stopwatch and much more).  Also, the AW will alert me when an appointment is approaching - like a Rock Steady Boxing class - so that I remember to go.  I've set up appointments with advance reminders for everything on my phone calender - otherwise I just won't remember.  Every phone I've ever had has had this kind of calendar app, and I need it now more than ever. Having the reminders on the watch is useful because sometimes the phone is in another room and I don't hear it. 

The AW is easier to charge - it charges quickly if you haven't let it become completely drained with a magnet attached to the charger. Easy for when your manual dexterity is suboptimum, which happens when you are a pwp. I had to take the Fitbit off, too, to charge it, but then I had to clamp the charger end onto just the right spot or it would not charge, and a full charge took several hours.  On the other hand, you are not using the Fitbit (at least this version) to input information and choices - that's for the Fitbit app on your phone - which I've found both easier for my awkward PD hands, and easier to understand.  Also, since the Fitbit isn't as smart, you don't need to charge it as often.  The AW needs a charge every day-and-a-half.

This is my first time with the famous Apple-knows-best philosophy.  Some things are set in the AW by the user, some in the iPhone...  and some can't be set at all.   Um, I think I want to be the one to decide the number of minutes that I plan to exercise, not Apple.   Considering the hundreds of people asking the internet how they could change their exercise minutes on the AW, I am not alone. Apple does not know best, and if the Apple interface is so wonderful, why do I need to go to third-party videos and articles to find out how the device works, hmmm?  (End of rant.)

One thing I've found useful is to keep track of all the different exercises I have to do (balance, cardio, strength, finger dexterity, voice, swallowing...) I have started using the Reminders app (comes on the iPhone) to keep track of all the PD exercise that I do - did I do that today?  Oops.  Or, not going to do that today because I already did X.  Very handy - I just check off what I've done and can see what I meant to do, but didn't. The next day I uncheck everything and start again.  This works perfectly on the iPhone, by the way - don't want it on the watch.  I'm sure there is an app like this for an Android phone, just didn't think of it when I had one.

I liked the heartbeat information a bit more on the Fitbit - it was easier to see, and it told me how my resting heartrate compares to other women my age.  On the other hand, the AW shows me how quickly my heartrate returns to normal after a vigorous workout.  I found a free heartrate app that pairs well with the workouts and is way easier to see.

I had to get a separate sleep app for the AW, and it's not as seamless as the Fitbit - the phone needs to be in the room, face down, while I sleep.  I've never had the phone in my bedroom unless I needed to be contacted at night so not wild about this.  Not quite the same information from this sleep app, but more accurate than the Fitbit has been lately.  This brings up another annoying thing about the AW - often it wants the phone to be in your proximity so that the information about a workout will be recorded correctly.  I did 50 minutes of PT that shows as a workout, but never made it to the Activity app - which keeps everything together - because the phone was out in the car during the workout.  The Fitbit just stores information, then when you hold the phone (yes, it has to be that close) the Fitbit sends information to your phone (Android or iPhone). 

In sum? Each has its strengths, but I've found the apps on my phone and watch have helped keep me on the exercise track.


Images from Pixabay

Diets for PD - what has worked for me and what hasn't

Diet is really important, especially if you have something that gifts you with, um, constipation.  Unfortunately, there is no agreed upon "Parkinson's Diet."   That hasn't stopped people from telling you their opinion, though.  (Come to think of it, NOTHING keeps people from telling you their opinion...)

So what have I tried?

Terry Wahls has a special protocol for Multiple Sclerosis, which is heavy on meats, especially organ meats, and heavy on veggies, and has no dairy (because she is allergic to dairy, and wanted to use exactly what she used to deal with her own MS).  In her book, The Wahls Protocol, she talks about her diet as if there has already been a clinical trial of it, so let's use it.  Looking into this more closely, I found that she was exaggerating the "clinical trial" part.  But it worked for her.  On the other hand she has MS and I have Parkinson's, quite different diseases.  But what the heck,  I gave it a try.  But every time I try her special favorites - bone broth and organ meats - I got a strong immune response; the joints that hurt when there's a storm coming ache - but there's no storm coming.  And I just don't feel good.  So drop the organ meat and bone broth. 

I've been lactose-intolerant for decades, so haven't had cow's milk in forever, and I use Lactaid tabs so that I can eat cheese.  I use Almond Milk if I need "milk."  Since some people think dairy might be bad for PD (though the evidence isn't consistent), I tried giving up dairy, which is really hard if you purchase prepared food like... whole grain bread - produced on equipment that might have milk on it/in it.  The killer for me was cheese - I love it.  But I did without cheese for weeks, probably a month.  Feel any different?  Nope.  And I tried vegan cheese, which finally has the mouth-feel of cheese, but does NOT have the taste.  Since then, I've tried regular cheese (might have had a weak immune response - a little ache in my joints.  Also tried organic cheese; not convinced it was produced cleanly, because it gives me immediate diarrhea and a weak immune response - a little joint ache.  But I also tried goat cheese - no problems; I can digest it and there's no immune response.  The only people who don't like eggs for PD are vegans, who already have an axe to grind; their "evidence" is neither consistent nor persuasive.  So eggs are okay, goat cheese is okay - for me.

Some people are anti-carb, but I haven't seen persuasive research.  Certainly, whole grains provide fiber and calories that I need (I don't need to lose any more weight - and never thought I'd say that). 

I looked at Laurie Mischley's work on diet, but her sample size is small, mostly white and, more importantly, she hasn't controlled for exercise or other lifestyle choices like smoking, so I find her work on diet and PD interesting but not persuasive.  I do think she's on the right track with a lot of things - lots of fruits and vegetables, in particular.  Her video, here, and at this link, is well-worth watching. https://vimeo.com/191664871

So what do I eat?  A Mediterranean diet - lots of vegetables and fruit, lots of nuts, whole grains, vegetable proteins with a bit of fish and meat, eggs and goat cheese.  With 7+ servings of veggies and fruits and an hour of exercise each day, I am rarely troubled with constipation.

The biggest problem I have is maintaining my weight - I eat very healthily and exercise a lot.  This was great when I was trying to lose weight, but now I don't want to lose more.  It has been hard to stop losing - I have to consciously snack (nuts and dark chocolate). 

Image from Pixabay.

Supplements for PD - what's worked for me... and what hasn't

First of all, many supplements can interact with drugs that you're taking.  Just because something is "natural" doesn't mean that it's safe.  Ask your pharmacist or Google it.  Discuss it with your doctor.

There are many supplements that I don't even consider because they interact with my thyroid medication.  Getting to the right dose of thyroid (actually hypothyroid) medication is already hard - don't need something else messing with it.   The thyroid is the master gland - you mess with that, then you mess with your entire metabolism.  'nuf said.

So what have I tried?

I take these:

Vitamin C, also called ascorbic acid.  I wrote about this here at length.  One thing to remember with Vitamin C, with doses of 500 mg and up, especially, Vitamin C can make it a bit harder for your blood to clot.  This might be an issue if you have surgery or an accident, and might influence how any blood thinning medications work - see what I mean about drug interactions?

Vitamin D2 - why not D3?  It gives me horrible cramps, so I take D2 which my body converts to D3.  Many people with PD have low Vitamin D, which we need for strong bones (kind of important if you fall a lot).  I have a prescription for this and as long as I take it once a week, my Vitamin D level is fine.

Vitamins B1 and B2 - these levels are low so I take supplements on my doctor's advice, but I learned the hard way to only take USP supplements because the B2 I thought I was taking had B6 in it (which I didn't need) and I ended up with scary symptoms from way too much B6 that fortunately reversed themselves when I stopped taking it.  You can about this adventure here.

Calcium - I have osteoporosis and osteopenia.  The research on calcium is mixed, but my endocrinologist likes it and between the exercise, the calcium, the Vitamin D, and the Actonel (similar to Fosamax), my bones are in better shape.  I take Tums, which are chewable and cheap.

I don't take these any more and here's why:

Glutathione - gave me unpleasant intestinal cramps and diarrhea.  No thanks.

NAC (N-acetyl cysteine) - made me feel that my balance was way off.  I think this was because it made my orthostatic hypotension worse (that's really low blood pressure when you stand).  My major problem is balance, so I sure don't want to make it worse.

CoQ10 - tried it for a month with absolutely no effect. The jury is out on this one, so it's not clear there's any real benefit, plus it's expensive (I was taking a dissolvable pill instead of the normal enormous pill), so no thanks.

Will I try other supplements?  Probably -

if I can find clinical research that demonstrates this supplement has been helpful and safe for pwp (not rats that have been given drugs so they act as if they have PD, and not cells in a petri dish),

and if it doesn't interact unpleasantly with any medications I'm already taking. 

Image from Pixabay

Marty Hinz and Amino Acid Supplementation - snake oil or not?

Looked into Marty Hinz and his amino acid supplementation, as I look into just about anything that might make PD easier. 

I have to say I was already suspicious because lots of pwp consider him either a savior or a quack.  But I looked into his claims.

He published a study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068871/ about one patient who showed great improvement on his amino acid protocol - but
#1, it was only one patient,
#2, it was NOT a clinical trial,
#3 all conflicts of interest are supposed to be identified up front so you can evaluate whether there are any biases. 

#1 - you need many patients to see if something works.  There's one.
#2  - you need a clinical trial of a treatment, carefully set up so that you are really testing both the safety and the effectiveness of the treatment. You want to compare the proposed treatment with no treatment and you want a double blind so neither patients nor doctors know who is taking what (so you can see if there is a placebo effect, and if treatment is better than no treatment, and also so that biases don't get in the way.)
#3 - turns out that Marty sells the supplement that he's testing (no, now it's his daughter who sells it) and that he owns the "independent lab" that tested for "success."   How independent can it be, exactly?

Um.  Fail on all three measures.

Any followup studies?  No.  Hmm.  Wouldn't it make sense to do a test with multiple patients?  It's not that hard if it's a tablet to set it up with a placebo for the no-treatment condition.    Wasn't done.  And virtually the only person who quotes him in subsequent studies is...  Marty Hinz.

What about the efficacy of the compounds he talks about?  Let's look on Pubmed to see what research there is.

Tryptophan and serotonin are low in PD, but their actions are complex and subtle, so "just add more" is not the obvious next move. The only article that I could find about tryptophan supplementation is  https://www.ncbi.nlm.nih.gov/pubmed/?term=tryptophan+supplement%2C+parkinsons+treatment and it's an article about probiotics.

Tyrosine - it's well known that tyrosine supplements can interfere with dopamine absorption, so why add it here?  For example, see:  https://www.sciencedirect.com/topics/neuroscience/tyrosine and https://www.rxlist.com/tyrosine/supplements.htm#Interactions 

5-HDP – the only study in the last 40 + years with this supplement has to do with addressing dyskinesia in rats.  Supplementation to improve PD in humans,  um, no.  https://www.ncbi.nlm.nih.gov/pubmed/24004632

Sulfur amino acids - when I search on this in Pubmed I get studies about NAC, which is deficient in PD patients, and supplements are widely available in places like Amazon.com.  I even tried NAC, but it makes my low blood pressure worse, so not using it any more. (Other than the blood pressure I didn't notice anything else.)

What does he claim on his website?  
According to one of his websites, http://amino-acid-therapy.com/neurotransmitters/imbalances-cause-disease-symptoms/  ALL of these conditions are from neurotransmitter imbalance, but he can treat them all 

Sorry, whenever I hear that the same problem causes lots and lots of conditions (pre-menstrual syndrome, cravings, depression, ADHD, PD, addiction...), but this treatment works, I grab my wallet and run. 

If you still want more about Dr. Hinz, go to see this post on Quackwatch:

https://www.quackwatch.org/11Ind/hinz.html 

Snake oil.

Image of duck from Pixabay.

Adventures with blood pressure - low blood pressure

Always had low blood pressure, even in childhood, so I know that if you leap out of bed you'll end up fainting, which is not as glamorous as it sounds (for instance, your elbows hit things on the way down, and you land in a heap).  With PD, this has gotten worse - now there's a BIG drop in BP when I stand.  It's called orthostatic hypotension.

So I added compression thigh-highs at my neuro's suggestion.  Also not glamorous, and a b*tch to put on, but they feel good!  My legs don't feel tired and full of fluid; my ankles haven't expanded.  And I don't feel like I have to faint all the time.  (Now I only feel that when I'm showering and can't wear the hose, for obvious reasons).  I learned that, yes, rubber gloves really do make these easier to put on.  Yes, there are meds for this, but they can result in HIGH blood pressure, so I want to avoid these.

But then came hot weather.  I was feeling really rotten two-thirds of the way through a strenuous exercise session, even though I was drinking plenty of water (and promptly going to the bathroom - like beer, I was only renting the water).  First I thought I was just running short of dopamine, because that happens.  But then I thought that I felt rotten because of hydration, but I was already hydrating, wasn't I? 

The compression stockings get hot when I exercise, hotter when I wear full-length pants/jeans.  So I wear what we used to call "pedal pushers" and now call "capris."   Shorts show the tops of my stockings when I exercise - so attractive - so they're out.

Hydration is critical in hot weather, because you sweat more.  But if I drink even more water, it just goes through me and I'm peeing more than once an hour!  Um, help.  And with exercise comes even more sweat.  So I re-read all the orthostatic hypotension advice, and notice they talk about salt.  I already add extra salt during meals and cooking (which feels weird because we were always avoiding salt when I was a kid.), but what I read mentioned "salt tablets."  Well, what the heck - I'll try that.  So I take a tab with a glass of water when I first get up; I notice that makes walking around before my shower a bit easier - and I don't instantly have to pee as the liquid makes a beeline for my bladder!

I also take a salt tablet every time I drink a glass of liquid, all day.  This is helping.  I'm back to peeing once every hour or two, and I can live with that.  But now I'm peeing a couple of times a night, which interrupts sleep, and I don't need to lose any more sleep.  One of my Rock Steady coaches suggests that I stop taking salt late in the day.  So the last salt tab is right before late afternoon exercise, and none with dinner or later.  After one night's experiment, I only wake up to pee once, so we'll try this again.  I'm hopeful.

Images from Pixabay

Vitamin C and Dystonia

Vitamin C is an antioxidant.  I had been taking half a gram with meals, way more than the RDA, but I can use an antioxidant.  Then I had a cold, a rotten cold.  So I tried taking more Vitamin C - 1.8 grams with every meal and then 1.8 grams before bed.

Vitamin C is quickly excreted, so you need to take it throughout the day.  Not in a big lump.

Well, it did nothing for my cold, but there was an unexpected but pleasant surprise:  the dystonia in my right foot that wakes me around 3 AM disappeared.  I tried this for a full week - no dystonia!  The one problem with the Vitamin C (technically ascorbic acid), is that when I take a higher dose, I get rather loose, ahem, stools.

So I've been dialing back and experimenting.  The usual half gram dose with meals but 1.8 grams at bedtime?  We'll see.  So far, so good.

Image from Pixabay

Bulletproof coffee adventures - does ketogenic diet help PD?

There are members of the PD community who are convinced that following a ketogenic diet will slow progression.  I had my doubts, but figured, "I can try it and see what happens, right?"  After all, so much of dealing with PD is experimenting to find out what works.

I decided to start small, with Bulletproof Coffee, basically hot coffee/tea/water with lots of fat in it.  The first time I tried it, there wasn't enough fat (probably 2 tablespoons).  I got a wicked headache and sudden low blood sugar.

• A week later, I tried it with 2 tablespoons Kerrygold Butter + 2 tablespoons coconut oil.  I added stevia for sweetener.  No headache, and I could exercise without having my blood sugar crash.  Maybe possibilities?

The good:

• Mr. Dystonia didn't come to call at 4 AM for 4 nights.  Lovely.  

The bad and the ugly:

• 3+ days of diarrhea - my gut does not like all that fat
• Loss of appetite.  Sorry, trying to maintain weight, which has become a little too easy to lose now.  Nothing appeals so I have to force myself to eat veggies and fruits.  I eat a few bites and I feel full.  This lasts 4 days.
• The worst part - my balance feels worse (balance is my main problem, not tremor).  Slowly it seems to be improving - fingers double crossed.  My head just feels wrong, heavy.  I fell spontaneously in front of a classroom of students.  Not good.  I'm using my cane indoors when I've been able to do without it for months indoors unless the halls are full of kids who could tip me over without thinking.

I know the diarrhea and appetite loss are the result of diet. My balance is also likely from this, too, since the problems started the day after the Bulletproof, and they seem to be receding (please, please, please).

I really liked being without dystonia, because it wakes me, but the balance is a non-negotiable.  Falling was what made me face my PD; it got me to stop making excuses and see my doctor.  Through diligent effort - Rock Steady, physical therapy, special balance exercises, long sessions on the treadmill working on my gait - I've improved my balance.   Slowly I've gotten it back.

We're all different, pwp, so what didn't work for me might be fine for somebody else. But this is one experiment I'm not trying again.

Image from Pixabay.

Parkie Blogs? There are Parkie Blogs?!

Yes.  Many of them.  There are funny ones (which I already wrote about here), and scientific ones, and reflective ones.

Just a few.

Scientific:  https://scienceofparkinsons.com/  May be more than you want to know, but he's thorough.

Reflective (my life with PD):  http://parkinsons.stanford.edu/pdblogs.html

A good collection, including institutional blogs (good for research updates):  https://www.healthline.com/health/parkinsons/best-blogs-of-the-year#1

How can you keep track of them?  You can bookmark them, and go check them out every few weeks.

Or you can use a Reader that collects blog posts and tells you when there are new ones - I use Feedly.  All I have to do is open my Feedly account to see who has new posts.  If you'd like to use Feedly (it's free), see this post.

Happy reading!

He's got the "cure" for Parkinson's. Right.

On his videos, Lonnie Herman swears that he's got the cure for Parkinson's, cancer, interstitial cystitis,  you name it.

He uses lots of medical terms in his PD video.  He found strep in the patient's hematopoetic stem cells (bone marrow).  How?  He found it in the brain.  How?  He found a viral infection and chemicals in the brain.  How?  But don't doctors have to use actual tests, like blood tests, MRIs, biopsies, and so on to look for disease?

An infection in the teeth infected the patient's retina, and "I'm making remedies."

Herman also talks about athetoid movements and how a Parkinson's patient on his video has them.  Except, ahem, athetoid movements don't happen with PD; they happen with cerebral palsy.

Lonnie Herman is a Florida chiropractor who uses his Youtube channel to sell his services.  He is actually licensed to be a chiropractor in Florida (I checked).  But he claims to have "11 years of postgraduate study" but where?  His Facebook page lists the Carrick Institute for Graduate Studies, but when I search for recommendations from them of their graduates in his town, his name is absent from the list. Hm.

I was trying to figure out how he found all these infections in places where you could only find them via biopsy (surgical removal of tissue).  But, um, how does he biopsy the eyes, the bone marrow, and several parts of the brain? 

But then I hear him say that he uses bioresonance.  So what the heck is that?  According to Wikipedia, bioresonance therapy is a "pseudoscientific medical practice in which it is proposed that electromagnetic waves can be use to diagnose and treat human illness."  So he uses this bogus machine to diagnose and miraculously cure pretty much everything?  To quote Dr. Andrew Weil, speaking of bioresonance: "No evidence supports any of these claims.  In fact, the little scientific evidence that does exist refutes them." 

So, once again we have somebody selling hope.  Only, once again, it's snake oil.  .

My real job - exercise

Since I was the original "couch potato," it's amazing how much I exercise.  But once you get into the habit it's hard to quit.  Since exercise seems to be neuro-protective and may slow PD progression, this getting into the habit is a win-win. 

Typical day:

30 minutes on the treadmill working on stride and gait.  I also try to push myself cardio-wise, but since my right foot isn't quite cooperative, I don't try to be too speedy.  I've created a channel on Pandora that's mostly the right tempo (originally used it for boxing practice).  I can hear if I'm stepping heel-toe and if I start dragging my feet.  My wonderful husband set up an old computer and monitor so that I can watch videos (youtube has lots of videos that work with treadmills).  I'm always dealing with a little cognitive dissonance - I would not be able to walk down the rim trail on the Grand Canyon which is very bumpy - but the difference between what I see and what I feel forces me to focus, so it's a good thing.  Not boring at all, thanks to the videos.  My stride is longer and stronger, and I find that I'm leaving my cane places because I forget it!

Unless I have boxing, 30 minutes on the NuStep, an elliptical, but a recumbent elliptical, so it's not hard on your knees.  I used this in my old gym and love it.  I can see the youtube videos from the NuStep so I'm not bored.  I can just use my feet, just use my arms, or use both.  This is my serious cardio workout for the day.  Pricey but worth every dime.

Voice and swallow exercises 2-3 times a day, usually in the car.  Why the car?  Because the voice exercises make my dog howl (maybe he thinks I'm in pain).

Leg strengthening exercises like squats that I got from my PT.  I do these throughout the day, when I'm waiting for the dog to pee, brushing my teeth, and so on.

Balance that includes some Tai Chi - 3-4 times a week.  I have a DVD (Jane Adams - Balance & Strength Exercises for Seniors).

Rock Steady Boxing - 3 times a week.  This is exercise, support, friendship, and sweat.  Favorite times of the week.

When I stop work in June, I hope to add dance, maybe a Tai Chi class, maybe a water movements class.

NuStep image from Amazon.com.

9zest "free trial"

A warning about the 9Zest app that is supposed to provide customized exercise routines for pwp (and also for people with MS and strokes).  Nice idea, poor implementation.

There is a free-trial period, but there’s no way to cancel at the end of the “free trial” unless you email customer service.

Why didn’t I want to keep using the app?

• Not a human voice – a machine voice (circa 1997, not Alexa).
• Poor English in almost every sentence – missing words, especially.
• Garbled directions.
• Do you think marching back and forth for 5 minutes is fun or interesting?  How about taking pinches from a piece of clay for 5 minutes, using only thumb and index finger?  Me neither.  Each exercise lasts between 2 and 5 minutes – with a machine voice that is either constant, interrupting itself, or disappears.  There is no music.
• If you have multiple goals, you’ll start seeing the same exercises showing up again.  Want to march back and forth for another 5 minutes?  In silence, except for occasional notices that you’ve completed 110 seconds… 130 seconds…
• Inaccurate lists of equipment needed – I assemble everything they say I need, only to find that, wait a minute, I need a ring to throw a ball through.  What?  And a bunch of balls to throw through the ring.  Didn’t you tell me that I need one ball? 
• Lie down.  Stand up. Sit down. Lie down.  – no thought has been given to people who might need extra time to get down or get up, never mind keeping all the similar exercises together.

If you want to exercise, even at home, there are many choices:  included in this blog post Finding Exercise, and in APDA's booklet Be Active and Beyond.

9Zest?  Nice idea, but the execution is lousy. 


Image: Pixabay

Parkie Personality?

Supposedly there is a Parkinson's personality.  A study from the year 2000 lists characteristics including, "industriousness, punctuality, inflexibility, cautiousness, and lack of novelty seeking."

Does that sound like you?  It doesn't really sound like me, or like my mom or my uncle, who also had PD.  I've noticed, at least among those still able to be mobile, a robust cheerfulness and a willingness to poke fun at ourselves.  Certainly for people dealing with annoying and constant reminders of what we can't do, I've found Parkies to be upbeat,  inventive in figuring out how to get around the barriers that our bodies present to us, and generous in sharing solutions they have learned.  But then again, I see the same things in Parkie caregivers. I have been fortunate that I haven't been hit by the depression that hits so many with PD;  I see other Parkies at exercise classes in particular, and I find exercise to be anti-depression.

A study in 2012 found that there really isn't a Parkie Personality.  That lack of novelty seeking is probably due to low amounts of dopamine (because there is no dopamine "high" from novelty), and that cautiousness is probably due to mood problems like depression and anxiety.

Speaking of studies about personality, there are even studies showing that it's harder for Parkies to lie, probably because lying requires use of executive functioning, and we're lousy at that.  I'll be the first to say, "Yup.  My executive functioning su---, um, stinks."

It seems that a lot of this work relates to finding a biomarker that identifies PD early, but I don't think we're there yet.

Image from Pixabay.

Scary overdose of supplement

Just had a real scare.  Pins and needles in the extremities that are most effected by PD were getting worse.  My neuro tracked it down to having more than twice the normal amount of B6 in my body.  Like a lot of pwp I take supplements to deal with imbalances caused by PD, but I wasn't taking B6, or B-complex, or even a multivitamin.

You can't get an overdose of B6 from food, so it had to be coming from a supplement (could have been B1, B2, magnesium, C).  I stopped all my supplements and the pins and needles are slowly improving.  It will take a few months to find out if there is any permanent damage.  So trying to make my PD better actually made things worse.

Which supplement had stuff in it that's not on the label?  Who knows?  But about one third of supplements have materials in them that aren't on the label - for example, "natural" pills to improve, um, male performance often turn out to have sildenafil in them - Viagra.  Not so natural.

How can I protect myself, when the FDA doesn't regulate supplements the way it regulates medicine?  There is actually a way - USP is a program that manufacturers can participate in, demonstrating that the contents of a supplement are actually what's on the label.  For more information on USP: http://qualitymatters.usp.org/what-letters-usp-mean-label-your-medicine

So I've gotten very conservative about supplements.  If it's prescribed and I get it via pharmacy, like my D2, that's fine.  If it is USP verified, that's fine.  Otherwise I'm not going to take a supplement.  Lesson learned. 

Image Pixabay and Free Vector