What does hope look like? What about strength? And courage? We bring you stories about people in our community who exhibit all these characteristics and more
I walked out of the doctor’s office after a 7 minute exam with “you have Parkinson’s Disease, here’s some meds, brochure, call me with questions and we’ll see you in 6 months” still ringing in my ears. We call him, Dr. #1. Stunned and not quite understanding the big picture yet, nor its implications, I cratered.
It all began when I noticed that my fine motor skills, brushing my teeth, shaving, rolling up a blue print were not working very well. My right hand pinky had a discernible tremor and my wife had noticed an expressionless pawl on my usually smiling Irish face. After going to a motion disorder neurologist (Dr. #2) for confirmation we started researching everything that we could find about PD. Within a matter of days, my wife, Martha had a 3 ft pile of articles on each corner of my desk. One of Martha’s incredible qualities is her tenacious capability of attacking a situation head on, weed through it all and produce results.
I'm convinced the volunteer work I did for PAR in the 80's and 90's saved my life. The time I spent as President of the Board gave me a sense of purpose I otherwise wouldn't have had. My partnership with Janet Humphreys on the Education Team gave me a chance to use my skills as a teacher to help nursing home and medical staffs learn to understand and better care for people with PD. It also fueled my love of public speaking.
When Paul was first diagnosed with PD, the first two things we did were to read everything we could find about the disorder, and increase his yoga practice, emphasizing those poses that had been most affected by the PD. Both moves were unusual at the time: our neurologist had no informative handouts or pointers to the literature to give us, and persons with PD were supposed to go easy on their exercise, not push it to the limit.
Both moves, however, were natural given who we are: a couple of former professors accustomed to using knowledge as a tool to make things better. And Paul had 15 years of teaching yoga (plus many more practicing it himself), which fueled his great respect for its ability to change the body.
A spunky, adventurous actress and model taking Los Angeles by storm, Lucy Roucis was cut to the quick when she was diagnosed with young-onset Parkinson’s disease in 1987. Slowly it became harder and harder to do ordinary activities and she thought her career was over. A friend told her, “Turn this Parkinson’s around and make it work for you. Use it.” Never forgetting this, she moved back to Denver where she discovered PHAMALY, an acting troupe comprised of people with all kinds of disabilities. In this venue, her Parkinson’s is actually an asset and she starred in several shows.
No one I know wants to have Parkinson’s, including me. But sooner or later, life will put real challenges in front of all of us. When I think about the nine years since my diagnosis, I find that they’ve been some of the best of my life. Because of PD, I’ve been willing to open doors to a different kind of reality — not just walk by them.
About ten years ago, my wife Randi was doing one of her very favorite things. She was shopping at Nordstrom with her best friend, Debbie. As Randi was putting on a pair of jeans in the dressing room, Debbie noted that Randi’s hands were shaking so much that she could not zip up the jeans. Debbie said, “You must really be excited about those jeans!” and Randi replied, “Debbie, I am scared, I cannot control this shaking.”
When I was 36 years old, after many tests done by a variety of doctors, I found out that the nebulous problems I’d experienced for the past three years really added up to one thing. My husband was with me at the time, our two young sons, ages 4 and 6, staying with dear friends while we drove into Center City Philadelphia to meet with a Movement Disorder Specialist. That afternoon I finally received a diagnosis – Young Onset Parkinson’s Disease (PD) – a progressive debilitating disease for which there still is no known cure more than 14 years later. At the time, neither of us knew enough about PD to be scared. I was just relieved to finally find out I wasn’t crazy – that the ever changing symptoms were not imagined.
My story started almost a year ago when suddenly I noticed my hand writing getting smaller. I had been having other symptoms for about three years but all the experts I saw dismissed the possibility of Parkinson's, even though I have a brother who has it. I know the symptoms and the handwriting hit me like a ton of bricks. I have Parkinson's? It was followed by a frozen shoulder and then the telltale hand tremor. Finally - the "official" diagnosis came. My first thought was, "really, cancer AND Parkinson's…really??"
I consider myself a very fortunate woman… who just happens to have Parkinson’s. Has it changed my life… oh yes…but I have learned that the rest of the world goes way too fast and that a sense of humor is mandatory. Years ago a very dear friend told me that there are three things we need in life; someone to love, something to do and something to look forward to. Keeping this thought in mind, I began to restructure my life and put things in priority.
Check out Ben Petrick's story about life with Parkinson's
Stories from Mindy, a daughter impacted by her father's disease, and Greg, an individual living with Parkinson's, on how they are utilizing life with Parkinson's as an occasion to rise to.
I'll never forget the day I found out my dad was diagnosed with Parkinson's disease. I couldn't believe it when my mom told us. It was almost an out of body experience; and I'm still amazed by how quickly it changed my perspective on things.
I first thought about his relationship with my children. Would he be around to watch them graduate? Will he feel healthy enough to coach their soccer teams? I then switched my thoughts to my mom and prayed for the strength to be her support system, even before she needs it.
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