“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 years of both physical and emotional changes, along with a series of inconclusive tests. 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 neurologist who ordered a DAT Scan. The DAT Scan along with my symptoms confirmed 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 over the 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.
They say knowledge is power – and I wanted to have the power over my disease. I wanted answers! Is this environmental? Is this genetic? I needed to know. Through genetic testing with “23 and Me” I was able to get some unanswered questions. I knew that The Michael J. Fox Foundation is dedicated to finding a cure for Parkinson’s and funds the Parkinson’s Progression Markers Initiative (PPMI). In 2012 I enrolled in the PPMI study at the Cleveland Clinic. PPMI is a clinical study to find biomarkers for Parkinson’s disease. Patients would contribute invaluable data and bio samples into the most robust Parkinson’s database and specimen bank ever created. PPMI is an observational study and volunteers do not take any experimental drugs or placebos, but agree to contribute data and samples for five years, which has now been extended to eight. Doctors depend on the description you provide of your symptoms and their own examination in making decisions regarding your diagnosis and management. The discovery of a biomarker is a critical step in the development of new and better treatments for PD.
In 2018, I also enrolled in an online clinical study called Fox Insight. Fox Insight is a long-term observational study worldwide 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.