The Twitchy Woman Unscientific Study, Dan’s Progress and More

I know you are all waiting eagerly for the results of the very unscientific study that was posted a couple of weeks ago about dominant hand and the start of Parkinson’s symptoms.  As of two days ago there were 299 responses in various forms.

The results were interesting, but defiinitely not conclusive.  Those whose symptoms started on their dominant side accounted for only 52%.  The rest had symptoms begin on the opposite side, or occasionally both sides at once.  I would love to talk to someone who would like to collaborate on this on in a more “scientific” way.  Please contact me if you are interested.  But in the meantime, here are the results, simplified because the original survey was too confusing, even for me, the designer of it:

299 responses

156 or 52%  dominant side

137 or 46% non-dominant

6 or 2% other, both sides, stroke residual

Interesting trivia – 3 reported being naturally left-handed but forced to write with their right hand in school.  Their tremors started on left side.  I counted these as starting on the dominant side.

One of the things I learned is that most people preferred to just respond with a yes or no on Facebook instead of using the  Survey Monkey link provided, and later the WordPress Poll. I changed to the much simpler poll when I saw how people were responding.   Since this post was shared numerous times on FB (over 140!) I have no way of knowing how many people actually responded.

So the most important thing that came out of this is that Parkies don’t pay attention to instructions!  A simple yes or no was all that you wanted to give.   And some of the answers didn’t even make sense!

Somehow there has to be a way to make use of social media to reach out to large numbers of people and get the data that you want.  It can’t be too complicated, for it seems that our reduced attention spans don’t allow for more complex answers.

Dan’s Progress

Dan continues to do very well with the Path Finder shoes.  When he turned them over to Vince, he felt a definite increase in this freezing episodes.  Vince tried it out with his PT, but it did not work for him, unfortunately.  He returned the shoes to Dan, who is now a very happy camper.  I have asked him to write about his experience so that I can share it with you here in a future post.

A New Book for Parkie’s

 One of the first blogs that I followed after my diagnosis was PDPlan4Life which was written by Sheryl Jedlinski and Jean Burns.  Sheryl’s humorous writing and Jean’s illustrations gave me hope that I could live well with PD.  When I heard that Sheryl recently published Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis! , I immediately ordered the book.  I was not disappointed.

With a blend of serious information for the newly diagnosed so newly diagnosed) and self-deprecating humor used to illustrate her points, Jedlinski has written a very enjoyable book that belongs on every Parkie’s bookshelf.  We can all identify with some of the situations that she has found herself in as a result of living with PD.

Finally, I am in Israel for 2 weeks, mostly on vacation, but some PD related business.  There is some great research going on here which I hope to be able to share with you in my next post.

Did your Parkinson’s Symptoms start on the Same Side as Your Dominant Hand?

I have been intrigued for several years about what seems to be a correlation between Hand Dominance and Parkinson’s onset on the same side.  I noticed this in a Dance for PD class several years ago.  Most of the people seemed to have a right hand tremor.  I did not ask anyone if that was their dominant hand.  Just tucked it away in my brain for future reference.Image result for michelangelo hands painting

When I met a newly diagnosed Parkie last week, the topic came up.  She is left-handed and yes, her symptoms started on the left side.  So I went home and checked out the research.

There have not been a lot of studies, and the few recent ones seem to indicate that there may be a correlation.  According to a study by Sara M. Scharoun et al, University of Waterloo, from 2015:  ” One question of interest here is whether the motor symptoms of PD which give rise to PD initially in the preferred hand are the same as those seen when first expressed in the nonpreferred hand.”

Another study from 2011 by Barrett MJ, Harrison MB and Wooten GF showed a “significant association between handedness and the side of the initial symptom; that is, the dominant side was affected first in the majority of both left- and right-handed patients. Compared with patients with non-dominant side onset, more patients with dominant-side onset presented with bradykinesia, while fewer patients presented with gait difficulty. Patients with dominant-side onset were diagnosed and began dopaminergic medication after a longer symptom duration than patients with non-dominant-side onset.”

I tested out my theory at boxing class today.  Eight out of nine were certain the symptoms began on their dominant side (8 righties and one lefty); the ninth wasn’t sure.  That, of course, is a ridiculously small sample size, so, to expand my own (very) non-scientific follow-up on this, please complete the following survey.  I will provide an update in a couple of weeks once I get a significant number of responses.

A number of you have asked about the Path Finder Laser Shoes from last week’s post. Dan is doing very well with the Path Finder.  I am hoping that Vince will have a chance to try them before next week.  Stay tuned …….

Technology to relieve Gait Freezing

I was contacted last month by Walk With Path, a company that makes devices that attach to your shoes to alleviate Freezing of Gait (FoG).  The device, Path Finder, provides visual cues with lasers attached to the front of your shoes. This gives the wearer a visual cue to step across, and acts as an external stimulus to trigger walking.  Path Finder is available in the UK and in Europe, but not yet in the US.

A study  conducted by Professor Bas Bloem and Dr. Murielle Ferraye at Radboud University in The Netherlands has been published, validating the concept of Path Finder for alleviating Freezing of Gait in Parkinson’s.  In the article, using a visual cue projected from footwear, demonstrated a significant reduction in ‘freezing episodes’ and the time spent ‘frozen’.

I was asked to try Path Finder, but since I do not have a problem with freezing, I asked if two of the men in my boxing class who do have FoG could give it a try.  Walk With Path sent a prototype for them to use for a few weeks.  So far, Dan has tried using Path Finder with very good results.   He wrote:

“As for my own experience: the units are potentially transformative.   For example, I had to go to the bank a few days ago, and had to stand in line with a bunch of people in a small space.  Ordinarily, this situation would put me into a full-on freeze.  But because I had the units on, I was able to navigate it without incident!  Also, when my meds have completely worn off, I can use them to go a short distance (say, 50 feet) and it will take one minute instead of ten.
Limits: they’re not useful outdoors during the day because you can’t see the lasers.”  
Here are two videos of Dan in Boxing Class.  The first shows him freezing.  In the second, he walks easily, with the lasers to guide him.  The results were remarkable, as you can see.  In the first, the lasers were turned off.  You can see Dan is having a difficult time walking, and his arms swing wildly.


In the second, he turned on the lasers and his walk is more natural, and his arm swings have calmed down as well.

 This is a prototype for testing Path Finder in the US.  It is not available for purchase yet.

Dan will continue to work with Path Finder for another week before turning it over to Vince to try.  More to come in a few weeks.

Looking back at 2017 and forward to 2018

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year.  It has been an adventure for me.   I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer.  Hard to believe that it has been that long.  I am doing quite well, with my symptoms mostly relieved by medication and exercise.  Of course there are ups and downs, especially while living with Parkinson’s.  But for the most part, nothing holds me back.  Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

  1. The best part:  The continued growth of this blog has been a blessing beyound description.  The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words.  Let’s continue to read and comment  and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.
  2. The most curious part:  The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden.  The dichotomy seemed to resonate with a lot of people.  Sex and the PD Woman came in a pretty distant sixth place.  Not sure what that means.  (Maybe an update with pictures in 2018?)
  3. The most humbling part:  Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.
  4. The most exciting part:  Working with the Parkinson’s Foundation to create the study Women & PD TALK,  which grew out of the Women & Parkinson’s Initiative two years ago.   Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI),  Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways.  Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s.  It has  been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations.  The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

  1. The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT.   This will be the 3rd of the 10 forums being held around the US.
  2. The anticipated report and recommendations from Women & PD TALK  for improving care and outcome for Women with PD.
  3. Working with the World Parkinson Coalition to get ready for Kyoto in 2019
  4. Watching for, and sharing with you, the latest news on PD .  We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage.  Will this be the year for the big breakthrough?
  5. Oh, and we are expecting our 4th grandchild in May.  So there’s that, too.happy-new-year-2018-animation-fireworks-6062126467.gif

Finally, some guidelines for a Parkinson’s Diet

Dr. Laurie Mischley, of Bastyr University,  has been tracking People with Parkinson’s (PwP’s) for several years for her “CAM Care in PD” study.  When I spoke to her at the World Parkinson’s Congress last fall, she explained that this is the only study looking at how people are living with PD now and following them to see who is having a more positive outcome and why.   Data is collected with twice annual surveys sent to the participants.  Multiple models were used to examine the association between diet, lifestyle factors, and PD severity, with Patient Reported Outcome (PRO-PD) scores used as the outcome variable. She just released an abstract published in “Oxidative Medicine and Cellular Longevity” on September 10.

I will not try to summarize the entire report.  You can read it here.  However, I will give you some of the key findings.


The Good:

A plant- and fish-based diet, similar to a Mediterranean diet, is associated with the lowest PD severity score.  Fresh vegetables, fresh fruit, nuts and seeds, fish, olive oil, wine, coconut oil, fresh herbs, and the use of spices were all associated with statistically significant lower rates of disease progression.

The Bad:

Ice cream, cheese, and yogurt intakes were associated with higher rates of PD progression.


Consumption of canned fruits and vegetables was a strong predictor of PD progression. Stick with fresh fruits and vegetables whenever possible.

Soda, specifically diet soda, was also associated with a faster rate of PD progression.

A few other things to stay away from include meat and fried foods.

Nutritional supplements:   Only coenzyme Q10 and fish oil were associated with statistically significant reduced rates of PD progression.  The use of Melatonin for sleep produced inconclusive results.  Iron supplements increased PD progression.

And finally, organic foods were associated with a lower rate of progression.

What does this mean for us?  I have basically followed a Mediterranean diet for years, however, I am allergic to fish, so  I often each chicken instead.  I haven’t eaten red meat in years.  I never buy canned fruit and vegetables. My downfall is cheese.  I am not sure I can eliminate that completely from my diet, but I can certainly cut back on it.  I recently substituted almond milk for milk to use with coffee and cereal.  Years ago I switched to Tom’s toothpaste and deodorant to avoid the excess aluminum exposure.  The good news is that the progression of PD has been relatively slow for me.

This study will be continuing and more PwP’s are still being recruited.  If you are interested, contact Dr. Mischley at



For more information on living with Parkinson’s, read   Natural Therapies for Parkinson’s Disease  by Dr. Laurie Mischley