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Monday, April 27, 2015

Living with Parkinson's #4 - We All Need Support – and Understanding

By Debbie Shapiro, a fun and inspiring woman and a great writer too, who just happens to 
 have Parkinson's

I've always been the type of person who likes to talk, talk, and talk some more (which is probably why I became a writer). My best friends are good sounding boards, who will listen quietly as I rehash with them whatever it is that I'm going through and then enlighten me with their insights and feedback. Then, once I'm all talked out, they give me the space to think things through. Sometimes, it takes just for a few hours; more often, it takes a few days, and occasionally, it might even be a few weeks until I digest all the information and am able to form my own opinion. And of course, as a friend, the relationship is reciprocal.  

But now, although my friends are really amazing – they empathize with my challenges and encourage me to do whatever I need to do to stay healthy—they cannot really understand me. I need to connect with people facing the same challenge.   

That is the reason why, on the very same day that I was diagnosed with PD, I contacted the Israeli Parkinson's Society to find out if there's a Parkinson's a support group in Jerusalem. "Yes," I was told. "There is one, and it's in English! This Thursday they will be meeting for the first time after a two month hiatus."

But the meeting was a real disappointment. Four elderly patients, two with full time aids, had come together to discuss who would be the one to run the future meetings, since the person who had been doing it until now was unable to continue  - for health reasons, of course. And then, since my tremor and lack of balance are not obvious, the women were curious to know why I thought I have Parkinson's. After I finished listing my symptoms, one of the ladies commented, "Oh, yes! That sounds exactly like what Sara K. had. The doctor also thought it was Parkinson's, but he was wrong. She really had…" and with that she named a much more serious and usually fatal degenerative disease. 

"Right! I remember her. She was such a nice lady," added another. "What ever happened to her?"

"She died."

"Why yes, of course. How could I forget. Nebuch…"

"She suffered so much! But it was still a shock when she passed on."

All four women nodded. "Those poor orphans," sighed the woman in the wheel chair. "She left two teenage sons, and a married daughter."

"And do you remember so and so, what she went through?" asked another. "The doctor also diagnosed it as Parkinson's. But of course he was wrong."

"Well," I felt bad interrupting their reminiscing but this was not the type of support I was looking for. "Let's hope I 'only' have Parkinson's."  

Everyone laughed. But it was bitter laughter.

Although I did not find the support and friendship that I was hoping for, the evening was not a total waste. I learned some very important information: that if I don't want to lose my Bituach Leumi Disability payments (akin to America's Social Security Disability payments) I must apply before the official retirement age, which is presently age 62 for a woman and 67 for a man.  So the following day, I contacted Rabbi Goldental of Degel Hatorah's Public Assistance Program for his help in navigating the enormous amount of red tape involved in dealing with Israeli bureaucracy. Although at the time of my writing this column I am in the midst of getting my application approved (hopefully), I want to publicly express my gratitude to Rabbi Goldental for both his empathy as well as his assistance, and recommend that anyone living in Israel in need of help in dealing with Bituach Leumi contact him.  
When I returned home from the "support group" I felt empty and sad. But according to a famous saying, ice cream cures all woes (ok, I admit, I just made that up - but  it's true, at least sometimes…),  so after a few hours of self pity and (a minimum of) one ice cream cone, I decided to stay away from support groups that do not provide me with positive support. Instead, I'll focus on maintaining my health, without worrying too much about the future.

And the truth is that without being over-optimistic, there really is a lot of hope for the future. The Michael J. Fox Foundation, the Parkinson's Foundation and the Parkinson's Disease  Foundation, to name a few, are presently investing millions of dollars into finding a cure for  PD, and there are several that appear to be very promising, including vaccinations, drugs to stop the progression, light therapy, and stem cell research.  And as I wrote in a previous column, I am doing everything in my power to control my Parkinson's.  Yes, it really is exhausting to go swimming or to work out at the gym every day and when I come home I need to rest in bed for at least an hour, but at the same time, it's also a lot of fun!
So what am I doing for peer support? I am grateful to have found a couple of creative women, both writers who are leading a busy and fulfilling lives while staying proactive about PD. Like me, neither of them have the time or energy to keep their PD a secret. As one so succinctly told me, "Being upfront about what I'm going through gives me the freedom to do what I must do to stay well. I don't have to waste precious energy coming up with all kinds of excuses for saying 'no,' or for missing a family simchah. People understand, and they're not upset with me." And the truth is that to the uninformed, finding time and energy to go swimming or exercise at the gym while missing a close friend's bar mitzvah or ordering takeout food appears, well, WEIRD – which is why it's so important that we remember to judge people favorably.  

That reminds me of something that happened some twenty five years ago. I had returned home after being hospitalized for blood clots in my legs. Since my blood was continuing to clot, I was under strict doctor's orders to remain in bed with my legs elevated or – believe it or not - walk briskly!  The doctor actually told me that I must take a 45 minute power walk each day, but that the moment I stopped walking, I am to return to bed with my legs propped up above my heart level with a minimum of three pillows! Each time I left my house, I wanted to wear a huge placard with the words "Dan L'kaf Zechus," "Judge me favorably" written across it in huge neon red letters. I could only imagine what people must have been thinking. Since I couldn't cook, we were receiving meals from the local chessed organization. Since I couldn't clean, seminary girls were coming to help out in the house. And what was I doing? Gallivanting around the neighborhood!

Judging our friends and neighbors favorably is really the greatest support that we can give them.  Being surrounded by friends, neighbors, family, and even strangers who can look beyond the externals and realize that they might not be aware of the full story, that they might be missing important pieces of the puzzle, really does make all the difference.  

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