Our Story
DEAR MEMBERS OF THE PARKINSON'S COMMUNITY
It was declared fifty years ago that there would be a cure for Parkinson's Disease (PD) in five years. This was before PD was found to be infinitely more complex than thought in the 1960’s. The biomedical establishment may be moving closer to a cure but what about those of us who woke up this morning with PD and the over 50,000 people (US alone) who will be diagnosed this year? We wait and we hope while the sand runs unrestrained through the hourglass. What can we do today? The answer may surprise you. We can fight back!
Non-contact boxing-inspired exercise programs are growing in popularity among men and women of all abilities. Even if you are opposed to the combat associated with competitive boxing, boxers themselves are among the best- conditioned of all athletes. Additionally, people who participate in “boxercising” find that it can relieve stress and build confidence.
So, what does that have to do with people struggling with Parkinson’s? In fact, a boxing gym is the last place you would expect to find someone with PD, right? Wrong! A Parkinson’s-specific boxing workout at the gym is exactly where they should be. Non-contact boxing provides the same benefits for people with PD as those without it, plus one thing more--it appears to slow the progression of the disease thus enhancing walking ability, flexibility, balance and overall well-being. To date, no medication has been able to do this. Following established principles of scientific inquiry, studies are providing evidence that a structured, purposeful, non-contact boxing program, like Rock Steady Boxing, may be neuroprotective. In the biomedical community, it is becoming widely accepted that forced-intensity exercise (a level above voluntary effort) may trigger events that fall within the broad definition of neuroplasticity – the ability of the brain to reorganize and form new connections.
By the time someone is diagnosed with PD, a majority of dopamine producing brain cells have already died. Dopamine is a master neurochemical responsible not only for numerous physical and physiological functions but also for psychological functions such as mood and behavior. For instance, depression (affecting over half of the people with PD) is considered a symptom, not a reaction to the disease. Nowhere is the mind-body connection more evident than in a person with this disease.
Parkinson’s is an opportunistic disease that shrinks one’s world and convinces your mind that this diminished engagement with your surroundings is the new normal. LSVT – BIG is a research based set of exaggerated movements intended to help restore balance, flexibility and movement to those with PD. This seemingly simple set of exercises requires dedication and practice because you are retraining the mind as well as the body. At first, what others perceive as within the typical range of motion will, to people with PD, seem amplified because they have come to accept their diminishing world as normal. The goal of LSVT is to mentally and physically expand your operating space making the world a safer, more navigable, hospitable place.
My name is Dan Dail. I was diagnosed with PD eight years ago. I wasted several years after my diagnosis languishing in denial and trying to prove that I was the one person who could continue to do everything I did before I became symptomatic. This approach hasn’t served me particularly well. If you’re reading this letter, you or someone close to you knows by now that we have a progressive, incurable disease for which a cure remains elusive, and no medication to date seems to slow its progression. Time passes anyway so what can we do? The evidence is there. Programs like Rock Steady Boxing and LSVT-based movements can reduce symptoms and improve quality of life for those of us with PD in a safe, supportive, fun group setting.
After learning about some of these innovative programs, I started to explore my options only to learn that I had none. Yes, by virtue of our population, we who live a distance from the main population centers of the state could be denied access to programs that may indeed relieve some of our daily struggles with PD. Then, at a friend’s suggestion, I contacted the Utah Center for Rural Health and the Rural Health Scholars program on the SUU campus in Cedar City, and everything started to change. With their help, Southwest Parkinson’s Fitness has been formed in Cedar City, and we plan to start LSVT-inspired and Rock Steady Boxing classes in September. Enthusiastic certified instructors are anxious to get started. Together we can fight back!