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.
Research makes HOPE a reality!