Please Don’t Pity Me

Here is something I wrote about Tikvah. Enjoy. 

I Have Parkinson . . .

 Please Don’t Pity Me

The lecture had just finished, and now it was my turn to speak. I had just five minutes to explain to this group of people, all somehow connected to Parkinson, the importance of what we were doing there.

The MC passed me the microphone. “That’s my grandson,” I quipped, gesturing to the bearded young man. “Cute, no?’ The women suppressed their giggles. I couldn’t see the men’s reaction. They were on the other side of the mechitzah.

“This evening, when the taxi driver dropped me off in front of Yad Sarah, I began, “he asked me if I was coming to volunteer. I responded that I run an organization that helps people with Parkinson, and that tonight we’re holding a lecture.”

“Nebuch. Such miskeinim.  What a horrible disease.” I could almost hear the driver cluck his tongue. “There’s nothing that anyone can do to help them. But it’s a real chessed to try and bring some happiness into their miserable lives.” 

“That’s exactly the misconception we want to shatter,” I continued, raising my voice so that I could be heard by the men on the other side of the mechitza. “It needs to be changed, both among the man in the street, as well as in how we look at ourselves, or at our family member challenged with Parkinson. We are not miskeinim. We are not nebuchs. We are people faced with a challenge and doing our utmost to stay as healthy as possible for as long as possible. And Tikvah for Parkinson is here to help us accomplish that.” 

 I created Tikvah because I need it. I have Parkinson. I live in Jerusalem, and I am Orthodox. Jerusalem is way behind the rest of the country in treating people with Parkinson. Not only is there no multidiscipline Parkinson clinic to treat the many different motor and non-motor aspects of the disease, there are almost no exercise or physical therapy groups geared to people with Parkinson, and virtually no separate groups for men and women. As an Orthodox woman, I do not feel comfortable exercising with the opposite gender. Yet today the medical world views physical exercise as even more important than medicine in treating Parkinson. It’s the only thing we can do to slow down the progress of the disease. Simply put, exercise can keep me out of a wheelchair. It can give me life – time to enjoy my family and dance at my grandchildren’s weddings.  I need to exercise. I need to work on my balance so I don’t fall when I walk. I need to work on my swallowing so I don’t choke on my own saliva. I need people who understand me and can support me – a cheering squad – to help me can fight the apathy that is part of Parkinson and to find the energy to get up from my armchair to do the things that are so important for my health. 

 

Last night, Tikvah for Parkinson, held its second informational evening for families challenged with Parkinson’s. The first one, really a test run to see if anyone was interested in such an organization, was an overwhelming success. People with experience in organizing these types of evenings had warned me that I’d be lucky if forty people showed up. We ended up putting out over 250 chairs, and people were standing in the back. Although last night’s lecture was smaller, the feedback was overwhelmingly positive. People were grateful to learn how to cope with the disease that was slowly taking over their lives, and to connect with others facing the same battle.

Tikvah for Parkinson is only six weeks old. Actually, it hasn’t even been born yet. We’re presently in the process of becoming recognized as a registered not-for-profit organization (although by the time this is published, the baby will already be in the nursery!). Today, we signed the papers with the lawyer, tomorrow, all the documents are being submitted to the government. Yet, despite our youth, we’ve accomplished a lot. We’ve set up a support group for women whose husbands have Parkinson; Each week, close to thirty men and women in three separate groups (two for men, one for women)participate in our rehabilitation program, which includes group exercise, gym, speech pathology, physiotherapy and a professionally lead support group. The participants are begging us to add another day, or even two. And we will . . . but not yet. First, we want to see these programs solidly established, and financially sustainable.

I’ve met with the CEO and head physician of Hertzog Hospital, who want to collaborate with Tikvah to create comprehensive rehabilitation center for people with Parkinson, as well as assuring that their planned Parkinson clinic will be patient-friendly. I presented to a national forum consisting of public health doctors, heads of Kupath Cholim, heads of hospitals and representatives of the Health Ministry about the problems facing people with Parkinson in Jerusalem, focusing on the specific problems of the Orthodox community. Hopefully this publicity will lead to better care for Parkinson patients in Jerusalem. But it will take years for these dreams to become a reality.

 Meanwhile, those of us challenged with Parkinson can’t wait. Each day, our window of opportunity grows smaller. We need that help now, so that we can dance at our grandchildren’s weddings. 

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