Patient, Professor, Writer
When I was diagnosed with Parkinson’s eight years ago, I made the decision to fight it as much as I could. I am a professor of chemical engineering at Technion, the Israel Institute of Technology, and I have not let my illness stop me from teaching, conducting research or working on my book. I guess my story is that of an optimist. I have tried to make sure Parkinson’s hasn’t changed my life too much. Really, the only thing it has changed is my music. I can’t play the violin anymore and that brings me great sadness. I haven’t given up music. I play the recorder now, instead, but I miss being able to play the violin.
Soon, I will retire, but I don’t plan on slowing down, and will continue to research this disease and the brain. I have initiated an annual Parkinson’s conference where neurologists and other scientists can gather and discuss its treatment and the advancement of scientific knowledge. Twenty-five to thirty people meet each year, and it has become an integral part of the participants’ lives.
Another way I try to fight the disease is by taking care of myself, paying attention to the way the disease affects me, eating well, and trying new therapies. I noticed that the symptoms of the disease began appearing when my wife died and I have always wondered if there was a connection between the stress of losing her and the onset of Parkinson’s. I try to be aware and notice how the different systems of my body interact. I notice when my hands shake, it is harder to breathe, and if I sit too long, my hands swell. These are small things a doctor may not notice, and I believe they offer clues to how the disease works.
Something I am very interested in is Deep Brain Stimulation (DBS), a surgical procedure that involves inserting electrodes that emit an electrical impulse at a certain frequency into the brain to help control body movements. I don’t yet qualify for surgery, but I have asked neurosurgeons for the frequency they use so I can replicate it as sound and stimulate my brain through my ears. When I first came up with this idea, I called this sonotherapy, but when I googled it, I found out this term was already in use. Someone had already taken my idea. With a little research, I learned the sound I use is the same one Tibetan Monks use in their gongs. There isn’t really any evidence that listening to this sound helps people with Parkinson’s, but I feel like it does so I continue to do it.
Parkinson’s makes many things harder, and it’s not very fun when you can’t bring your spoon to your mouth, but I’m both fighting it and ignoring it, and so far it hasn’t changed anything substantial. I don’t know if I’m lucky or if it’s my optimism. I always say that I was born an optimist, and I’ll die an optimist.
Avi Marmur, Age 68, Israel
Living with Parkinson’s