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Thursday, May 28, 2015

Living With Parkinson's # 8 Lady, it's All in Your Head

by Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.

Am I the only person who needs to be validated, to have someone tell me that what I’m experiencing is real, and NOT the result of an overactive imagination? A couple of weeks ago I wrote that I had been hospitalized with cellulitis and blood clots in my legs, and although I’m definitely on the mend and hope to be up and dancing in the very near future, at present I’m still spending a large portion of the day in bed with my feet elevated. And yes,  I know this sounds crazy, but yesterday, when the doctor told me, “Cellulitis combined with blood clots is EXTREMELY  painful,”  I was relieved that what I'm feeling is normal, and that no, I’m not a hypochondriac (at least not most of the time).   

Since Parkinson’s is literally is “in the head ,” when I am feeling good, and my body works the way it’s supposed to, I can’t help but ask myself if the original diagnosis was a huge mistake, and that I am perfectly healthy (or at least as perfectly one can be at my age), albeit a bit of a kvetch. And sometimes, when I’m shaking or having difficulty keeping my balance, I wonder if these symptoms are psychosomatic. After all, during dance classes, when I’m fully focused on following the instructor and keeping up with the beat, balance is not an issue, and my short, choppy steps disappear. And walking down the street, when I sing under my breath, “Big step, big step, right, left,” my steps become bigger and faster.

Shortly after my diagnosis I volunteered to take part in a research study funded by the Michael J. Fox Foundation at Ichalov Hospital in Tel Aviv. Mr. Fox is a famous actor (who I had never heard of prior to my Parkinson’s diagnosis) who developed Parkinson’s at age thirty. He established a foundation focusing on research to stop the disease’s progression, as well as vaccinations to prevent it in people with an elevated chance of developing it. I feel that if I can do something to advance research without causing myself harm, then this is a chessed that I can do to benefit others (and hopefully myself, as well).

My part of the research project consisted of spending a morning with a Parkinson’s specialist to assess the impact the disease was having on my day-to-day functioning, followed by a DAT scan, a very expensive scan that measures the amount of dopamine – that’s the neurotransmitter that is destroyed with in Parkinson’s – in the brain.  Several months later, I met with the head of the research project, a world-renowned neurologist specializing in Parkinson’s and other movement disorders.

After about a quarter of an hour discussing my symptoms and the proactive steps I was taking to maintain my health, he said, “I think the doctor who made the original diagnosis of Parkinson’s was mistaken. You don't seem to have any of the symptoms of Parkinson's."
I felt as though the rug had been pulled out from under me. Were the difficulties I’m having with walking and keeping my balance nothing more than a figment of imagination? And what about the tremors that overtake me when I'm trying to rest? Was it nothing but a result of my belief that I have Parkinson's?

 “What did the scan show?" I asked.

He hadn’t looked at it yet; his comment was made solely on clinical observation. But then, after looking at the results, he informed me that the scan was consistent with Parkinson’s, "So yes, you really do have the disease.”

I didn’t know whether to laugh or cry! I felt validated – yes, it’s true. I am not imaging all these crazy symptoms! But to tell you the truth, I really would have preferred to be shown as a fool. However, his words reminded me that I am just at the start of my Parkinson’s journey and that as degeneration progresses, and more dopamine is destroyed, the path will become more rocky. I just hope that by the time the going gets really rough, a cure will be discovered (which, of course, is the reason I joined the research study), and if not, that I will have the courage to face the challenges head on, with simchah and emunah.

Once the doctor was convinced that I was not a hypochondriac, I shared with him that my children had pointed out to me that my voice had become softer and the pitch lower  (no more screaming, at least most of the time!). Yet, when I really focus on speaking loud, for example, when delivering a lecture, I am able to speak loudly and clearly. The doctor suggested speech therapy. I asked him what he thought about my joining a choir instead. He thought for a few moments, and then, with a big smile, told me that it was probably a very good choice. It certainly sounds like a lot more fun!

As part of my proactive approach to dealing with Parkinson's, I try to keep abreast of the 
 many different research projects taking place around the world. Among the many things that I've learned is that not only is exercising important in treating Parkinson's (which I’m sure I have mentioned on the odd occasion!) — something which was not known a decade ago, by the way — but according to the Movement Disorder specialist at Ichalov, it is even more important than medicine for treating the disease.

I’ve also discovered that when it comes to improving balance, there’s nothing like Tai Chi, and Baruch Hashem I was able to find an appropriate class.  In one study, a group of patients with balance issues were divided into two groups. One group received physical therapy, while the second group was given Tai Chi lessons. The Tai Chi group had 80% less falls.

Studies have also shown that both cinnamon and green tea have a positive effect on Parkinson's, so I'm drinking lots of green tea with cinnamon!  And then there’s Dr Greg Willis of Australia, who is using light therapy combined with minimal medication to treat Parkinson's, with excellent results, and is presently doing clinical trials using minimal dosages of dopamine delivered via the optical nerve straight to the part of the brain affected by Parkinson's. I am presently in touch with Dr. Willis and am working on arranging to receive the therapy in Israel.

There’s also been a lot of research about the importance of fun in battling illness, although not specifically with Parkinson’s. Laughter really is the best medicine, which is the reason I participated in a local women's play that took place right after Purim. As the only actress over the age of 30, I was given all the "older" parts: a rabbi in a girls’ seminary, an elderly Shabbos hostess (who sang a solo about how girls are not what they used to be), a rebbetzin who delivers shiurim to newly married women, and (yes, I kid you not!) the yetzer hora, who is very old indeed!

But my claim to fame was when I went onstage as the rebbetzin, I promptly forgot all my lines (can I chalk that up to the Parkinson's?). So I adlibbed it, telling my “students,” "Ladies, I have something very important that I want to convey to you, but I have to make sure that I get it right, with all the details. Please excuse me while I get my notes." My notes, of course, was the script!  Although my friends immediately saw through my ruse, most of the audience assumed these were my lines. And I had a really good laugh, which is the reason I joined the play to begin with.

Although I was exhausted that night, and lay in bed shaking like a leaf, it was worth every second of it. Sometimes, we just have to have a good time, even if we end up paying for it later.

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