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.