Editor’s note: How can we help women with Parkinson’s disease? The members of Parkinson’s Women Support are lucky because of the strong base of support in their group. Members are able to provide encouragement, camaraderie, and compassion for each other. They’re able to give each other confidence and strategies for living with the disease. What about women who have no support system?
Starting with our first individual story today about Barb, we hope to offer others a glimpse of our female experience with Parkinson’s disease. We hope to build a collection of stories that will provide a chronicle of the disease and how we deal with it. By reading individual stories, women can feel like they are not alone in the world. Many thanks for the first of our stories by Barb Zimmer, a trailblazer, indeed. –DB
Barb Zimmer’s Young Onset Parkinson’s Disease (YOPD)
I was diagnosed at age 36, 27 years ago. My symptoms started with tremor in my left leg, then arm, Over the next 10 years. the tremor encompassed both sides. I had no arm swing and my gait turned into a shuffle. As the side effects from Sinnemet and various agonists became worse than the symptoms they controlled, I was offered the option of DBS. I jumped at the opportunity and have not regretted it for a moment.
After DBS surgery, my tremor virtually disappeared, I was able to run again with a normal stride and the rigidity in my fingers was much decreased. The tradeoff was my voice. Despite many sessions of LSVT, my voice continues to decrease in volume and in clarity of articulation. At first, this was an easy tradeoff to make but I have since come to realize how much of one’s persona is dependent on one’s ability to communicate vocally.
Another symptom DBS does not help is balance. I cannot walk backwards or sideways without falling and am constantly falling from a standing position for no apparent reason. Installation of grab bars all around our house has helped considerably.
Perhaps the best benefit from my 16 years with DBS has been that I’m off all Parkinson’s drugs . Except I do take one 25/100 Sinnemet before I run. The single best treatment over the 27 years I have had PD is exercise. I run and do a regular stretch/workout afterwards. And I walk or bike as often as possible since I’ve mostly given up driving.
My hope for the future is that I am able to continue to reap benefits from my exercise routine and that I continue to meet strong women who inspire and act as great role models.
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