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.

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.