Monday, July 2, 2018

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.

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.

Monday, June 25, 2018

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

Monday, June 18, 2018

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 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 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: and 

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.

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  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,  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: 

Snake oil.

Image of duck from Pixabay.

Monday, June 11, 2018

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

Monday, May 28, 2018

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

Monday, May 14, 2018

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.

Monday, April 30, 2018

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:  May be more than you want to know, but he's thorough.

Reflective (my life with PD):

A good collection, including institutional blogs (good for research updates):

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), check out the videos here which show how it works.

Happy reading!

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 &q...