Twitchy Woman: My Adventures with Parkinson's

It’s a challenging, life-changing condition, but not a death sentence

Debbie Shapiro

We returned home from Israel on Tuesday, and it has taken a few days to settle back in.  A big time change is not easy for people without medical issues, although Mr. Twitchy and I have been fortunate to usually be able to adjust pretty quickly.   The biggest issue for me and most of the Parkies I have spoken to about traveling, is the disruption of our medication schedules.  With a 15 hour flight home, coupled with the 10 hour time change, I just kept taking my Carbidopa/Levadopa every 5-6 hours and hoped that would work.  The timing of the other medications are not as crucial for calming down my symptoms.

One thing I took with me that was very useful was a pair of adjustable walking poles like these in the photo.  When walking through archeological sites and uneven terrain, I use them to prevent tripping and falls.  Because we encountered a lot of rain on this trip, the poles were also very useful on wet pavement, dirt paths and stairs.  They look much better than a cane or walker, while providing just as much safety.  I found that I only needed to use one pole most of the time.  When collapsed, they fit easily into my suitcase.  (click on the photo to see details)

Before I left for Israel, I arranged to meet with several people about research and services provided for people with PD living there.  One of the people I contacted is Debbie Shapiro, who is also a blogger for the 2019 World Parkinson Congress.   Debbie attended the WPC in Portland with Dr. Tanya Gurevitch from Sourasky Medical Center in Tel Aviv (more about her and others I met in Israel in a future post).  Debbie, a mother of 9 originally from San Francisco who has PD, was so inspired by what she saw at the WPC that she came home determined to do something for people with Parkinson’s in Jerusalem.

Debbie’s experience was much like mine.  We both became well informed about Parkinson’s after our diagnoses in order to cope with it.  It did not take long for other people started reaching out to us because we were willing to speak to others about coping and living with the disease.  In my case, I started this blog to reach out to others more easily and share our experiences in this exclusive club.

For Debbie, it meant starting a program for people with Parkinson’s in Jerusalem where there was nothing offered. Tikvah4Parkinson, (Tikvah means Hope) provides exercise programs, boxing, support groups, etc.  In other words, a community for PwP’s.   Debbie has no background in physical therapy, speech therapy, tai chi, or any of the other things that are offered by Tikvah, but called in experts to help her put it all together.  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. Debbie says: “We need to make people aware of the disease and help them realize that it’s a challenging, life-changing condition, but not a death sentence.”  Because of her passion for this project, the people attending her programs are all showing improvement in their symptoms and their outlook on life.  She is definitely making life better for many with Parkinson’s in Jerusalem.

To see a video about Tivkah4Parkinson, click here