Editor’s note: Stories by our members chronicle how we are affected by Parkinson’s disease. Our intent is not to prescribe medical advice about the diagnosis, treatment or other medical aspects of PD but to provide information, news, support and encouragement for women living with this condition. Thanks to Barbara Rosenthal for her story. She has been with Parkinson’s Women Support for quite some time, and we can always count on her to pull through with us for events and special causes. –DB
Professional Parkinson’s Patient Barbara Rosenthal
For two years, I was performing face plants and near misses monthly, usually in public places and when I was in a hurry. An intersection on State Street in Chicago was one of my best acts. My GP referred me to a neurologist triggering a series of brain scans. The pings in the scanner became so familiar, they started sounding like dueling banjos. Nothing was showing up that could explain what was happening.
Finally, in December, 2012, I went in to a different neurologist for unrelated nerve damage and mentioned my excellent skills in proving the theory of gravity and a slight occasional tremor in my left hand that I had attributed to nerve damage. One walk down the neurologist’s hallway, getting rapped with a rubber hammer, repeatedly touching my nose, tapping my fingers and I was informed I had Parkinson’s. At least I had an explanation. But my initial reaction was that I had been handed a death sentence.
After progressing through the stages of grief, I pulled myself out of bed, dried my tears, and started absorbing every iota of information about PD that I could ferret out. I talked to everyone, called perfect strangers who had Parkinson’s who were friends of friends of acquaintances. A friend from Shanghai told me that in China, the first recommendation for anyone with a chronic disease was to spend 20 minutes a day talking to people you are not related to. My mantras were ” Knowledge is Power,” “You won’t die from it, you’ll die with it,” You have Parkinson’s, it doesn’t have you,” and ” it’s the world’s best incurable disease.”
Emerging from this soup, I found myself with an excellent team, including a gifted Movement Disorder Specialist. I joined the Parkinson’s Women Support Group. I was referred to an incredible physical therapist who specialized in neurological movement therapy. I signed up for a yearly gym membership. I bought poles. I traveled to a seminar at Kripalu in the Berkshires sponsored by the National Parkinson’s Foundation that was invaluable. I volunteered for trials. I started Tai Chi and Ai Chi. I became involved in my local Monterey Parkinson’s Support Group. I went to Arizona to Dr. Becky Farley’s PWR! Workshop. I participated in National Parkinson’s Foundation Moving Day fundraisers with my family and friends. I found myself moving towards acceptance rather than feeling defeated by my diagnosis. In short, I became a PPP- a Professional Parkinson’s Patient.
What works for me is to take charge, get enough sleep, exercise, take Azilect, physical therapy, acupuncture, sleep, create art, structure my life to avoid stress, (did I mention sleep?) and be involved in a support group or two.
I work out in a therapy pool at the gym 3 days a week, do Tai Chi in the water once a week, pole walk for at least 15 minutes a day. I know I should be doing more cardio, but I also know that doing any exercise consistently, no matter how minimal, is better than doing nothing.
After three years, I am still classified as having “mild” PD. My balance has improved, my tremors are still slight-unless under stress or cold, my handwriting is legible and I can holler across a room, if need be. I firmly believe there will be major breakthroughs in treatment of PD in the near future thanks to organizations like the MJF and Google. In the meantime, I am game for placebos to believe in, dependent on others who are in the same boat, and tap dancing like no one is watching!
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s Disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen