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 our anonymous friend for her story. We love her dearly!–DB
Sister Keep Calm and Carry On
One of my favorite books is “The Martian.” How can you resist a book that starts with “I’m pretty much ***ked”? Getting a diagnosis of Parkinson’s disease can feel a lot like that, particularly when it happens at the best, most productive, peak time of your life. I knew for several years prior to diagnosis what was happening. At some point, you have to accept that knowing is better than not knowing and take the next step.
When I was diagnosed seven years ago, it became clear that I needed to become an advocate for my health and take the reign. I ditched my first neurologist and went to see Melanie Brandabur. Best thing I ever did. In her wonderful way, she told me, “Bad news is you have PD, good news it’s not going to kill you!” I could do something about living the best life I could. Dr. Gandhy at the Parkinson’s Institute continues to support that goal.
In The Martian, Mark Watney doesn’t just rollover and play dead when he gets marooned on Mars, he gets to work. That’s what I did. I found out everything I could about meds and treatment. Discovered Becky Farley and learned about the power of exercise. Met all of the incredible women in the Parkinson’s Women’s Support.
Like the best botanist on Mars (Mark Watney,) I was going to be the best multi-dimensional me I could be. Not just a Parkinson’s Patient.
Overcame my fear of dyskinesia by using medications judiciously. Battled fatigue and sleeplessness. What a combo! Learned that the high energy life I lead is going to have to be moderated to avoid progressing this disease. Accepted that I cry at the drop of the hat now (one of those non-motor symptoms you don’t hear about.) Lost my ability to sing even when my voice remains strong. Learned to hate that double tap on the keyboard or when texting on my phone. Adjusted to some expectations of myself.
There have also been wonderful moments along the way. I have dear and life-long friends from the PWR Retreat. I savor every opportunity to move, be mobile, free. I love my work and excel at it even though I do not reveal my condition in the workplace. Travel a lot. My family supports me and my friends don’t limit or coddle me. I try things I don’t think will work like drawing. Weight train and exercise. Never ever give up stretching myself cooking and baking. I recently made a 28 in. high three-tier wedding cake!
The Martian made it home, in one piece with a foundation of strength he could rely on and the future ahead of him. The best of possible outcomes for us all!
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