You look amazing”. “You look great”. “You don’t look like you have Parkinson’s”. These are some of the comments I often hear, and so I find myself asking “what is someone who has Parkinson’s supposed to look like?”. Apparently, a person with Parkinson’s is not supposed to look like me. What they don’t know is that I struggle daily and go to great lengths to look and appear “normal”.
Prior to being diagnosed in 2012, I went through 3 years of both physical and emotional changes, along with a series of inconclusive tests. During these 3 years, I saw many different doctors none of which gave me a definitive diagnosis. It was only after much frustration that I finally met with a doctor that was able to confirm what I suspected, was afraid of, and yet almost relieved to hear: “You have Parkinson’s”…
Parkinson’s is often referred to as a “boutique” disease because it is unique to each person. You cannot predict which symptoms you will get and when you will get them. There are broad similarities as the disease progresses and no guarantee that what you see is what you will get. Some people may end up in a wheelchair while others continue to run marathons. Some are unable to clasp a necklace, while others bead necklaces by hand. What we know is that Parkinson’s is a degenerative disease that damages and eventually destroys neurons in the brain, causing muscle rigidity and tremors, difficulty moving, unstable posture and ultimately death.
Being diagnosed with early onset Parkinson’s disease, and living with PD for the past eight years, I can tell you that the progression is much faster than I would like. I am battling with rigidity, internal tremors and more pronounced symptoms of both Dystonia (uncontrollable and sometimes painful muscle spasms) and Dyskinesia (uncontrolled, involuntary muscle movement) mostly due to prolonged use of carbidopa/levodopa.
I often ask myself where do I go from here? I have three sons, am I going to be around for their wedding? Will I be able to hold and play with my grandchildren? So many unanswered questions, so much fear of not being around or worse not being able to do the things I love. I love the quote “do not let the fear of tomorrow rob you of today”. I not only plan on living today, but I will do my part in the fight to find a cure.
The Michael J. Fox Foundation for Parkinson’s Research is dedicated to finding a cure for Parkinson’s and funds the Parkinson’s Progression Markers Initiative (PPMI). Six years ago I enrolled myself and am proud to be part of the PPMI study at the Cleveland Clinic. PPMI is a clinical study to find biomarkers for Parkinson’s disease. Currently, doctors depend on the description you provide of your symptoms and their own examination in making decisions regarding your diagnosis and management. The goal for PPMI is to have an objective marker they could use instead, much like a glucose measurement in the management of diabetes.
This year I have also enrolled in an online clinical study called Fox Insight. Fox Insight is a long-term observational study world wide for people with and without Parkinson’s disease. Answering health related experiences helps researchers better understand the unmet needs and treatment breakthroughs.
Becoming a Team Fox member alongside thousands of other members all over the world to support the Foundation’s mission to find a cure is very important to me and my family. 100% of proceeds from all Team Fox events goes directly towards Parkinson’s Research. It is only through research and education that gives us the hope for a world without Parkinson’s disease. “Alone we can do so little…together we can do so much” – Helen Keller
I refer to having Parkinson’s as a gift. People are dubious about this, but it’s a gift that keeps taking, because it’s really opened me up to more compassion – Michael J. Fox