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Thursday, April 23, 2015

Living with Parkinson's Part 3 --- Finding My Balance while Off My Noodle

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

It's funny, because sometimes I feel as though my Parkinson's is actually forcing me to become healthy.

I know that sounds crazy, but it's true. I’ve mentioned before that I’ve begun an exercise program to delay the progress of my disease. That’s because Parkinson's is caused by the slow death of the dopamine-producing neurons in the area of the brain that controls movement, and it is the resulting shortage of dopamine that causes the tremor, stiffness, and general slowness associated with Parkinson's. Researchers believe that exercise causes the brain to use the existing dopamine more efficiently, which translates into less medication for the same effect.

Many people, including myself notice that after a good workout, their Parkinson's symptoms disappear for several hours.

Some 15 years ago, I attended a wedding where HaRav Nosson Tzvi Finkel, zt”l, was mesader kedushin. It was painful for me to watch his body twisting and turning as he struggled to recite the brachos and I was in awe of his perseverance and devotion to his talmidim. At the time, I thought that this was Parkinson's. Now, I understand that what I saw was dyskinesia, a side effect of the medicine levodopa that is used to treat Parkinson's, rather than part of the disease itself.

A well-known neurologist in Israel tells his newly diagnosed patients that it has been his experience that patients who exercise regularly are often successful at controlling the symptoms without needing to take levodopa. And that is the reason that I have made exercise a top priority in my life.  As one of my friends told me, "Debbie, that's your mitzvah right now. To do whatever YOU can to stay healthy. It's a wise investment."
I started out by joining a water aerobics class, which I dubbed, "Off My Noodle." That's because while the other women were able to follow the instructor's rapid directions while gracefully balanced on their noodles – a cylindrical foam tube used for water exercises – I would end up spending most of the class off to the side, propped against the edge of the pool, struggling to position both feet on the noodle, or (after finally succeeding with step one) losing my balance and, with an enormous splash, falling into the water. Although I never managed to get further than step two, I eventually learned to stand on the noodle, an accomplishment that I am really quite proud of! 

(But despite all my attempts to impress my husband with a vivid description of my newly discovered talents, he still has no idea what a water noodle is – only that it is not related to his favorite supper, spaghetti!)

Although I loved the water aerobics, it left me so exhausted that I spent the rest of the day in bed, either craving chocolate, or giving in to my cravings and eating chocolate, which is definitely does NOT fit ino my plan to be proactive about my health. Instead, I joined a hydrotherapy group. Imagine my delight when we were told that we were going to practice our balance by standing on a noodle. While the other ladies struggled unsuccessfully to maneuver themselves onto to noodle, I gracefully stood in the middle of the pool, without falling off… at least until we started to exercise! 

Keeping my balance is one of my biggest challenges. In one physiotherapy session, the physiotherapist instructed me to walk along a straight line, heel to toe. It's a good thing she was standing at my side to catch me when I fell – several times! Although I joked that if I was pulled over for drunk driving, I'd fail the test and end up in jail, the experience was really very humbling. I had been going to work every day, leading a very busy life, without ever realizing that I had lost the ability to do something as basic as walk on a straight line!
That's why, every day, as per the therapist's instructions, I devote several minutes to walking heel to toe along the lines of my floor tiles.  At first, I was constantly giggling as I lost my balance and had to grab onto one of the dining room chairs to keep myself from landing on my nose. Now, however, I am proud to say that I can actually walk the length of my house, not only heel to toe, but also on my tippy-toes as well as balancing on the back of my heels(clap, clap!). But just to keep my ego from getting too inflated, even my youngest grandchildren are still better at it!

The physiotherapist also recommended that I spend time at the gym working out on the cross trainer (also called an elliptical trainer), treadmill, and stationary bicycle. So twice a week I walk 25 minutes to the gym (it's really not that far; I'm just a slow walker. In better days it took me only 10 minutes!), work out for an hour, and then walk back home. It's not easy for me, but each time (which is basically every time!) that I prefer to stay home and cuddle under the covers with the latest copy of Binah, I remind myself of something a friend told me. Her cousin, who has Parkinson's, came to Israel for two weeks, and during that time ignored his exercise regime. All his symptoms became much worse.  

So, I guess I had better run!

I'm having a lot of fun sharing my experiences with you, the reader.  For those of you facing a neurological disorder, I'd love to hear from you- your challenges, triumphs, and yes, disappointments. Although I have not (yet) written about the koach of emuna, I can honestly say that my knowledge that whatever Hashem sends my way is custom made for my personal tikkun and growth is what enables me to face this challenge head on without (too much) bitterness and anger. So please, take this as a personal invitation to share with me, and, with your permission, with the wonderful growth orientated women of the Binah Family!   


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