The Global Community of Parkinson's
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 (FB) 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 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 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.
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 Tikvah4Parkinson. 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 “it's good, it's 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. 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 only 18 questions compared to the US version which has more than 50.
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.
Sharon Krischer is a Blogger Partner for the 5th World Parkinson Congress. She writes about the joys and oys of Parkinson's on her blog Twitchy Woman.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®