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.

The New Mattress

We are such stuff
As dreams are made on, and our little life 
Is rounded with a sleep.
The Tempest (4.1.168-170)   William Shakespeare

A couple of months ago, a Parkie friend told me about her new Zero-Gravity bed and how wonderful it is.  Mr. Twitchy and I were ready to get a new mattress, so we decided to check out this amazing mattress that she bought.

Armed with internet research, we went to the mattress store.  Upon entering, we saw no one else in the showroom, not even the salesperson.  “Hello” we said.  “Helloooooo”.  Finally a man came out of the back room and greeted us.  “Hi, I’m Bob.  How can I help you”.  He handed us his business card, which oddly, did not have the name of the store on it, but rather a real-estate company.  Very strange.

So we checked out the different mattresses, laying on them, playing with the controls to achieve Zero-Gravity*, a concept which we are still not sure of, and finally settled on a memory foam mattress that was really comfy.  Or rather mattresses.  Since the new beds are almost all adjustable, the king size mattresses are available in what is called a split-king, so that each side can be raised and lowered separately.  You can raise the head of the bed and then the foot of the bed so that you sink into a spot where there is no pressure on your back, achieving Zero-Gravity.   Other bells and whistles included 3 different types of massage and 4 different memory buttons you can set.  This was going to be fun.  Kind of a Disneyland ride for the bedroom.

“The amount of sleep required by the average person is five minutes more.” – Wilson Mizener

Once the mattresses arrived, we discovered that no one makes sheets for the split-king bed except the company that makes the mattress.  An extra long twin is supposed to fit, but the dimensions are slightly off, so we had to order new sheet sets (you can’t buy just the fitted sheets).   With our expensive new sheets in place, we were ready to go.download.jpg

So we started playing with the mattresses.  Raise the head.  Great for reading.  Raise the legs, too, and you are supposed to be at zero gravity.  Ooooh, how comfy.  Lights out, and I slid down the bed.  I am obviously too short for this bed.   And did I say that I am a side sleeper?  Bob assured us that it worked well for side sleepers as well as those who slept on their backs.  So I turned on my side, but my body could not conform to that “V” shape while on my side.  I pulled up my knees and slid down the mattress again.

So for several weeks I played with the new mattress, trying different settings to find the right one for me.  And then, last night, I decided to keep the mattress flat.  I fell asleep reading and woke up at 5:30!  6+ hours of un-interrupted sleep!!  Woohoo!  I can’t remember the last time I slept that long.  Maybe this is going to work after all.

 

*The Zero Gravity Position is a term and position developed by NASA as a position for astronauts to help relieve stress on the body while taking off into space.  So you really are not going to sleep like astronauts do in space but in the position they are seated during take off.    Zero gravity beds evenly distribute stress across the body which can help reduce pain and pressure points and result in a better nights rest.”  Eric Gissal, Lake County Bed Barn

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.

Tripping into the new year

Did you just fall? No, I was checking if gravity still works.   Anonymous

Somehow, when things seem to be going well, something happens to bring you back to reality.  I fell twice this past week, after having gone months without a fall.  Once when I stepped on the edge of the sidewalk and my foot gave way, and the second time in someone’s home, when I was too busy talking to someone to see a one inch step in front of me.  Both times, I fell hard, with no chance of recovering my balance.  The second time, I actually injured my self.   I landed on one knee and the opposite hand, which was holding my cell phone ( I think).  The cell phone apparently dug into my hand, resulting in immediately swelling and pain.  Fortunately, x-rays showed no broken bones, so I am left with a sore hand and wounded pride, both of which should subside quickly.

But these incidents serve as a reminder that when living with Parkinson’s, we must always pay attention to our surroundings, more than usual.  You never know what dangers are lurking ahead to take you down.  A person without PD and good balance, will usually manage to stay upright when tripping on an uneven sidewalk.  They will start to fall, but catch themselves.  But with PD, it is a different story.  My wonderful husband, Mr. Twitchy, said that I fell like a tree off that sidewalk.  I never had a chance against gravity, as I would have before PD.

Image result for trippingWhat can a Parkie to do to minimize the chance of falling?  Walking poles can help, but only if you remember to use them. I really make an effort when walking up and down steps to use the handrail, and that has helped a lot.  Uneven steps have been a challenge for a long time.  Unfortunately there isn’t always a handrail when you are out on a sidewalk.  You need to look down at the sidewalk and look ahead at the same time so you don’t walk into anything in your way.  Sounds easy, right?  Not always, especially on a crowded sidewalk.

And then there is the cellphone, which is a major distraction and probably dangerous to use while walking (as much as when driving), but we all do it anyway.   Mr. Twitchy keeps telling me to put it away while walking.  He is concerned that I am really going to hurt myself one of these days.  He is probably right, but don’t tell him I said that.

Image result for quotes about tripping and fallingFinally, I can’t help wondering if the recent falls are signs of changes in my Parkinson’s symptoms.  And that scares me more than anything else.   Mr. Twitchy keeps reassuring me that I am ok, that I just need to pay attention to my surroundings more.   And I really hope he is right about that.

 

On a totally different subject, please check out Soaring with Hope for PD – Parkinson’s on Facebook.  This is a project created by 3 friends of mine who are all living with PD.  Their goal is to reach out to the Parkinson’s Community worldwide and bring at least 10,000 origami paper Cranes, each bearing a message of hope, to the WPC in Kyoto, 2019, to be displayed in a beautiful art installation.