Finding basic information about Parkinson's Disease - Updated

If you live in the US, there is a terrific website with current information about Exercise and about Support Groups for each state. Parkinson & Movement Disorder Alliance has taken on the work of identifying each PD-specific Exercise group and Support group.  They even have information about local, regional, and national organizations. Try to Google this yourself, and you will appreciate just how much work this is.  Exercise groups will help improve your symptoms and may even slow progression - and can often become a support group, as well.  Support groups provide a place to ask questions, discover local resources, and get support - for the pwp and for the care-partner/family.

     https://www.pmdalliance.org/resources/

If you live outside the US, to find Parkinson's specific exercise, Google

     Parkinson's exercise your-geographical-area

To find Parkinson's specific support groups, Google

     Parkinson's support your-geographical-area

For a list of national/international Parkinson's organizations by world geographical area:

     https://www.worldpdcoalition.org/page/Partners

A really great book for pwp and their families/friends is Every Victory Counts.  Its focus is on how one can live well with PD.  There are contributions by pwp, families and care-partners, physical therapists, doctors, and more.  Included is information about diet, exercise, speech therapy, how to talk to your doctor, useful checklists, and much more. Best of all, it's free and downloadable online so that it's instantly available; a print version is often available, too.  I have both.  Kudos to the Davis Phinney Foundation for making this available and updating it regularly.

     https://www.davisphinneyfoundation.org/resources/every-victory-counts-2017/

Other information that may help:

     How to find info on research http://parkiesupport.blogspot.com/2019/09/where-to-find-latest-on-parkinsons.html

     Who are all these PD organizations?  http://parkiesupport.blogspot.com/2018/01/who-heck-are-all-these-organizations.html

     What to know when first diagnosed  http://parkiesupport.blogspot.com/2019/05/what-i-wish-i-had-known-being-first.html

What I wish I had known... being first diagnosed with PD

It was December 20, 2016.  It was like a bomb went off close by, so I couldn't hear anything for awhile.  My neurologist had made sure it wasn't MS/stroke/Lyme/vitamin deficiency and a host of other things that look like Parkinson's, but aren't.  I was pretty sure he was going to say I had PD - after all, my mom and her brother both had it, and I knew something was very wrong.

But hearing the diagnosis confirmed...  I didn't hear anything for awhile.  Fortunately, my husband and daughter were both there to listen.

I read a lot then, but not everything soaked in, because in the background my mind was shouting, OMG OMG OMG OMG OMG...

What I wish I had known immediately, because it would have helped me focus on living (and might have helped my family, too):

Exercise is critical - not only will it help you feel better, but if vigorous enough, it seems to slow progression and improve symptoms.  Fortunately, I already had an exercise habit at dx (diagnosis). For more.

Find other pwp.  They provide support, they understand, and they have resources.  Support group, online forums, PD exercise group - all places to find your new peers.  Set aside your assumptions about age, or gender.  You have a lot in common.

Watch out for snake oil as well as for the over-enthusiastic press.  There are people who want to make a buck out of your worry.  See here   and here  and here  and here and here.  And the press will report that there is a cure  - but it turns out the hopeful results were in ...  mice.  It's important to find valid sources for information - talk show hosts, internet advertisements, and your brother-in-law's cousin's buddy are not it.  I heartily recommend The Science of Parkinson's.

Alternative / complementary medicine has not been found to cure PD, but it can help make you more comfortable. So.  Why.  Not?

Find a movement disorder specialist - a neurologist who has extra training and experience with PD.  You may see your primary care doctor or your neurologist more often, but a MDS can make a huge difference in diagnosis and care.  And be sure you can phone/email/patient portal when you have questions or concerns; getting your medications/dosage right or dealing with an alarming new symptom are not matters to wait for the next appointment in weeks or months.  In the US, you can use https://parkinson.org/Living-with-Parkinsons/in-your-area.  Or email your location to info@movementdisorders.org.

Be proactive.  I am not sorry that I found a good physical therapist who is experienced with PD.  Or that I found a good speech therapist.  And saw them when my problems were minor. Specialists like these can really help you now - don't wait until you can't get out of a chair, or you can't swallow or your voice is so quiet that nobody can hear you.  They can give you exercises that will help you stay on top of symptoms before they get overwhelming.  (I remember to do all those exercises by pairing them with an activity - like feeding the dog, or being in the car - that reminds me to do them.)

Read Every Victory Counts, published by the Davis Phinney Foundation.  This includes the voices of pwp and their families, addresses complementary therapies, as well as more mainstream therapies.  It is focused on living your best life now, and is much more helpful than many of the conventional books written by physicians. Available for free download and sometimes also in paper - free.

Recognize that this may be as hard for your family to grasp as it has been for you.  Some will be in denial, telling you that It's all in your head.  Sometimes because they don't deal with illness well.  Sometimes because this shifts your roles - maybe you were the caregiver and that can't be any more.  Some will have opinions about your choices for treatment, forgetting that these are your choices. While they are adjusting, being with other pwp is very helpful. Take family to a support group, too.

Live in the present, but plan for the future.  Grab bars in the bathroom.  Living will and other legal papers.  Investigate the care you might need down the road. My mom needed, eventually, 24 hour care, because she could not stand or walk; not everybody reaches that point, but you may have to deal with it.  And don't assume that your spouse can do everything - because even a few hours of physical care can be exhausting to provide.

If you're inclined to participate in finding better therapies, then explore being part of a clinical trial - a scientific study to find out more about possible PD treatments.

Focus on what you CAN do.  At the start, PD will remind you of what's hard to do, and you will have this loud volume reminder (OMG I have PD), but if you are wise, in time you just move on to what IS.  This is not passive resignation, it is facing reality but living your best life anyway.  Michael J. Fox provides a great example of this (but so do many, many others).

This one is hard:  accept help.  And even harder:  ask for help.  Getting my cane was a revelation; so many strangers held doors for me. I don't always need it, but that handicapped parking sticker is a Godsend when I do.  Exhaustion does not make PD better.  People really do like to help.

What's wrong with clinical trial process? A participant's perspective

I really want researchers to find ways to slow or reverse progression of the disease, and to find ways to make the many symptoms less bothersome (insomnia, urinary incontinence, lack of appetite...)  So I'm motivated to participate in research (which means clinical trials - see this article for more information).

From PDTrialTracker.Info

Here's what has happened when I tried to sign up for clinical trials:

• When I was first diagnosed, and not taking any meds yet, I contacted the local research center who said... Oh, we're not doing any studies on PD now.  They could not have sounded more bored.  And though I left email, phone, address, they have not contacted me.  Not once.  In two years.
• I called a trial in a neighboring state, but they wanted me to go there once a month for a year.  This means my husband would have to drive me at least 12 times, as I can't drive that far any more. (A train takes longer, and unexpectedly requires climbing up or down steps - not remotely disabled-friendly.)
• When I looked for trials anywhere within driving distance recently, the only trial I could participate in was a 3 hour drive one-way, and required repeated visits.  Not near public transport - and in the middle of nowhere.  Um, who is going to go there?
• I was looking through trials, and one looked possible, until I noticed that, not only do they want monthly visits, they want to do a lumbar puncture at each visit (that's a puncture of the spine to get spinal fluid).  That means, at the very least, a blinding headache.  I have to ask the clinicians who dreamed this up:  would you be willing to have this procedure performed on you once a month?
• Tried to enroll in a study about tracking PD symptoms on a Smartphone - twice.  Once was a Samsung phone; one an iPhone.  I had problems with the software on both phones.  Emailed the contact person - in one case, after instructing me to re-install the software, the response was, I guess it doesn't work with your phone.  With the other phone, never got an answer. 
• Clinicians had come to a local conference of pwp looking for participants in their trial.  It sounded intriguing, and didn't involve any dangerous testing.  When I was screened by the clinician later, because I have atypical Parkinsonism (no tremor, but balance issues), she suddenly wasn't interested.  Well, if you're still doing well in a year, give me a call; if we're having trouble getting participants then we can include you.  That was welcoming.
• A guy in a suburb of a major city emails me about his trial - 6 hour drive one way - but he thinks I should participate, and be happy to go there monthly.  His tested treatment happens to be known to make another medical condition that I have worse. so I wouldn't consider it; he is sure it's not a big deal and is perfectly willing to risk my health for his trial.  Update:  When I looked up this trial, it wasn't recorded on ClinicalTrials .gov, although it probably should be, by US law.  So who is looking out for the human beings in this trial?
• I've registered on Fox Trial Finder, as well as several other "I'm interested in participating" websites.  Do I ever hear from any of them about new trials?  Rarely to never.
• I do hear from one company that does clinical trial work for large pharmaceutical companies.  What they call me about:  Phase 1 trials of some unknown compound; this is a study to find out if the compound is even safe to use.  They seem uncomfortable when I ask the question, "Is this a Phase 1 or Phase 2 trial?" Scientists do Phase 1 trials on a small number of patients, so if it's dangerous, not too many are harmed.  And did I mention that any resulting harm to my health is entirely my problem?  Oh, and it requires a lengthy drive once a week for as long as the trial goes on (which my husband would have to do). Sounds appealing, no?

I regularly look at ClinicalTrials.gov to see what possibilities are out there.  I'm not diagnosed less than 2 years any more, and I'm not "drug naive" (not taking any PD meds); there go most of the trials.  The few I could still participate in usually don't want me because I'm atypical.  There are a few trials I could do if I was demented or having hallucinations (um, no) or if I'm willing to drive for hours weekly.

In sum, besides the almost standard desire for less than 2 years from diagnosis and drug naive, which is a tiny subset of PD patients, there seems to be a willingness to inconvenience the patients (and their families), casually put them in danger, and generally use them and then spit them out.

Pwp who have been through the actual trial process on potential drugs are equally frustrated by disorganized researchers, being cut off from a treatment that helped their condition improve because the trial is over, and then never being told the results of the study - and since 40% of trials NEVER publish their findings, they might never know. Some of these pwp don't want to be used again, and can you blame them? (See some of Christopher Maycock's excellent thinking on this topic.)

What could attract me, and other pwp, to clinical trials?

• Being treated like a valued customer, not a used kleenex.
• Recognition that my participation involves inconvenience and possible exhaustion. Telemedicine, anyone?
• Treat me like an interested partner - I might have insights that could help you reduce the barriers that are making recruitment hard, as well as insights about what success in the trial would mean to me, the PD patient.  
• Look to include many different kinds of pwp because you don't know which group of us will be helped by your drug/procedure/device. 
• Recognize that I might be risking my health - and plan for that eventuality with insurance (I should not be out of pocket if I'm harmed).
• Tell me about your results and what the next steps are.  For example, can I be involved in the next wave of testing? 
• Provide my physician with all test results and what I was dosed with.  

I don't think any of this is too much to ask.  To their credit, there are researchers that do a lot of this.  Why don't all researchers do this?

Suppose I want to know the results of a Clinical Trial?

Here’s an ugly truth – even though Clinical Trials need pwp (and sometimes people without Parkinson’s), about 40% of these studies never publish their findings* (this is true for all research there, not just for PD).  Note that NIH and Michael J. Fox Foundation, among others, make publication of results a requirement of funding; wish all funders had such a requirement.

Fortunately, there are several ways to find out the results.  First, make sure the study has finished.  Instead of the status of Recruiting, it will be Completed in ClinicalTrials.gov.  (See this article for more information about using ClinicalTrials.gov.)

In all cases, you’ll search in Pubmed.gov, a database of biomedical journal research articles from the US and the international research community.  Usually a summary (called an abstract) of the article is available, with a link to the entire article;  sometimes the article itself is free, but sometimes it’s behind a paywall (meaning you must pay the journal to see the article).

You can search Pubmed with keywords, just like Google. Why not just use Google?  Because Google will give you many confusing records you'll need to weed through; Pubmed is easier  For a lot more about usingPubmed, see this article.  

1.  The easiest way to look for a possible journal article is to search for the NCT number (National Clinical Trial) on the Pubmed.gov database, since some researchers refer to the NCT number in their papers. Just enter the NCT number (found throughout the ClinicalTrial.gov record) into the search field at Pubmed.gov as in the example above. 

Here's an example of the start of an abstract that could result from such a search.  You can see the link(s) to the full article on the right.

2 . Entering the NCT number didn’t work?  Put on your detective hat.  From the Clinical Trial record for this study, get the name of the Principal Investigator (scroll down to the bottom of the Tab called Tabular View.) Then look for the title of the study (at the top); you may also have to read the summary paragraph that explains what the study is about.  From these, pull out what you think are the important keywords – for example, name of drug or device or technique used.

In the Pubmed.gov database, in the search bar put the keywords and the Principal Investigator’s name.  You may also need to add the term Parkinson.  See the example below:

There may be nothing, or multiple articles.  If the title doesn’t tell you enough to decide which is the right article, compare the Completion Date from ClinicalTrial.gov with the publication date of the articles; the publication date is usually at or later than the Completion Date; this was done in the example shown above, choosing the 2017 article because it comes a few months after completion.

3.  If none of the papers deal with the clinical trial, there's one more place. Often you'll find an email address associated with the Principal Investigator in the Clinical Trial database, so you could email this person to ask about publication of results.  There may be a paper that you didn’t find, or the paper may be in the process of being published, so you don't want to assume they didn't publish. Here’s an example email:  “I’ve been looking for the paper that describes the results of NCT12345678. Title of Study.  Can you help?” If they have a paper, they can provide the link.  If they don’t have a paper, you may have managed to make them feel a bit embarrassed, all while staying completely polite yourself, and not risking embarrassment.  (Take the high road.)   

4. By the way, if somebody gives you a DOI number (used in electronic publishing), go to dx.doi.org, enter the number in the search box, and you’ll go right to the summary and/or article. (Google will give you confusing choices.)

5.  If none of these work, you've struck one of the 40%.  Studies that use US government money are required to publish their results.  Shouldn't funders from companies, foundations, and universities require the same?

*Wyant, Kara J., Yasuda, Erica, Kotagal, Vikas. “The 10‐Year Landscape of United States‐Registered Parkinson Disease Clinical Trials: 2007–2016.” Movement Disorders, Wiley InterScience, 4 Oct. 2018,  onlinelibrary.wiley.com/doi/abs/10.1002/mdc3.12665.

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.

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.

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.

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!