The Global Community of Parkinson’s

This blog post was originally written for the WPC Blog, March 26, 2018

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One of the great things about the Parkinson’s Community is that it is truly global.  There is research going on in many different countries, often with researchers from more than one country collaborating on a project.  As a result, in the last few years there have been many new theories about what causes PD and how to treat it.  Trying to keep up with the latest “breakthrough just about ready to happen” can be daunting.  But we are getting closer, maybe even to the point where we can reverse some of the damage in our braincells.

On another level, Parkies around the world have connected through the internet in a way that that no one could have imagined 20 years ago.  The many Facebook groups provide forums for us to get to know one another, share experiences good and bad, learn about promising new treatments, participate in clinical studies, problem solve and more.  Blogs have allowed many of us to express how we feel and explore new theories about treatment and care.  We have become more well-informed patients, ready to make the most of our appointments with our Movement Disorder Specialist (MDS).   We know about the research going on in other countries and about different treatments that may not be offered in our home towns.  There are many people that I have met through my blog and the various FB groups that I can truly call friends and I look forward to seeing them next year in Kyoto.

For the last two weeks, I have been traveling around Israel and have had the privilege to meet several individuals who, because of this global community, are truly making a difference for those of us with Parkinson’s Disease.

On a cold, rainy night in Jerusalem, Debbie Shapiro came to meet me at my hotel.  What Debbie has accomplished in the last 18 months since she attended the WPC in Portland with Dr. Tanya Gurevitch (see below), is amazing. Debbie, a mother of 9 originally from San Francisco who has PD, came home determined to start a program for Persons with Parkinson’s (PwP’s) in Jerusalem. Tikvah4Parkinson, (Tikvah means Hope) provides exercise programs, boxing, support groups, etc. for  PwP’s.  Her program has been so successful that she is is moving into a larger space and is looking for help to manage the program.  She told me that many people in Israel believe that they will only live 5 years after their diagnosis and do little to improve their quality of life.  She wants that to change.  Because of her passion for this project, the people attending her programs are all showing improvement in their symptoms and their outlook on life.

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Prof Tamir Ben-Hur, chair Neurology and Dr. David Arkadir, Hadassah Medical Center

The next day I met with Dr. David Arkadir at Hadassah Ein Karem Medical Center. Dr. Arkadir is the top Parkinson’s researcher at Hadassah and is on the board of Tikvah 4 Parkinson.  He told me about several research projects that he is working on now. The first is a double-blind study testing the artificial sweetener Mannitol.  Earlier studies with animal models have shown that it prevents alpha-synuclein from accumulating and even removing it from the brain.  Dozens of patients had already reported benefits while taking it, so Hadassah applied for a grant from the Israeli Ministry of Science to investigate this further to confirm previous anecdotal stories of the benefits of Mannitol.

A second study is just getting underway to look for new genes related to PD, mostly looking at young onset patients who have relatives with PD.  They have already found a few candidate genes.  Another study is looking at guided physical therapy, collaborating with a company that developed user-friendly therapy that can be done at home combined with cognitive therapy.

One anecdote.  When I told Dr. Arkadir that I thought many Parkies do too much, and that I was doing too much, he said “its good, its what keeps you well.”

Finally, I met with Dr. Tanya Gurevitch who is the director of Parkinson’s Disease and Neuroautonomic Service at the Movement Disorders Unit at Tel-Aviv Sourasky Medical Center,  a Center of Excellence for the Parkinson’s Foundation.  She is also on the board of Tikvah 4 Parkinson.  According to Dr. Gurevitch, the clinic sees about 2000 patients from all over the country.  They look at PD from all sides, not just as a movement disorder but as a multi-factorial and multi-symptom disease, which also affects the entire family.   They offer a multidisciplinary approach for patients who live in the Tel Aviv area, which includes physical therapy, occupational therapy, speech therapy, dance, and more.  Dr. Gurevitch says there are no unimportant symptoms and encourages her patients to report everything.  The department provides workshops for the newly diagnosed and their care partners are encouraged to attend with them.  They are doing a lot by phone with patients outside of Tel Aviv area, in between their visits to the center  3-4 times a year.  She agreed with Debbie Shapiro about the prevalent thinking in Israel that you only have 5 years after your Parkinson’s diagnosis.  They are working to change that perception, encouraging more exercise along with medication to improve quality of life.  People don’t want to exercise, but if they are told it is their medicine, they are more likely to do it.

In addition,  the center was beginning a study for people with the GBA gene mutation.  GBA is found predominantly in Ashkenazi Jews, making Israel a logical place to be one of the test sites chosen because of its large Ashkenazi population.    This international study will be looking for a disease modifying treatment for people with the gene mutation.

Treatment is Global and Research is Global

Dr. Gurevitch stated that “Treatment is Global and Research is Global.”  For example,  she just published a paper on the validation of the Hebrew version of the UPDS scale.  The 50th patient was just recruited to participate in a study to validate the new European (EPDA) scale, which is only18 questions compared to the US version which has more than 50.

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Tel-Aviv Sourasky’s Movement Disorders Unit is a  Parkinson Foundation Center of Excellence

I asked why she specialized in PD.  Dr. Gurevitch said that for her “it is real neurology, because you look at the symptoms, you can diagnosis it because of your education and knowledge, not an MRI or some other test, and you can use your creativity and the art of the treatment to find the special thing for the special patient.  Parkinson’s is a grateful disease, and if you are treating it good, it will be good.”

To see a video about Tivkah4Parkinson, click here.

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