Following a diagnosis, anyone would be eager – even desperate – to get answers. What is Parkinson’s disease? While the simple answer is that this is a disease affecting the central nervous system, practical answers are a bit more complicated. How Parkinson’s disease will affect one patient versus another also leads to a number of possible answers.
Returning to the simple description, however, this degenerative disease means that particular cells are dying in one section of the brain, usually affecting body movements, whether noticeable as a tremor or in difficulty speaking or swallowing, or more hidden as in a patient’s digestive system not functioning properly. Whatever the symptoms of Parkinson’s disease, there are two constants. First, it is common. Alzheimer’s disease may be the most common neurodegenerative disease, but Parkinson’s disease is second. According to the National Parkinson Foundation, 50,000 to 60,000 new cases are diagnosed annually in the U.S. alone, with roughly a million Americans diagnosed with Parkinson’s disease at any one time. Second, there are treatment options. The medical community has been looking at this disease since long before it had its current name. And while some treatments exist to counteract the progressive symptoms, research continues. The National Institutes of Health , for example, funded nearly $100 million in Parkinson’s disease research in fiscal year 2011.
While treatment follows diagnosis, so too should long-term preparations to best maintain quality of life. Looking at Parkinson’s disease not as an ailment affecting a large population or in terms of research dollars, Parkinson’s is a disease that each person with the disease needs to examine closely with her loved ones and medical providers. At the personal level, Parkinson’s disease can take a serious toll on quality of life. As the researchers make progress and statisticians look at the big picture, an individual’s responsibility after diagnosis is to prepare for the disease to progress. There may be many unknowns, with the disease progressing differently in different patients, some being more responsive to treatment than others, etc.
So, do the research. Become fluent in the various nutritional considerations of Parkinson’s disease. Develop relationships with specialists who can help you cope with the disease, from doctors and physiotherapists, to counselors and dieticians. Establish your support network, knowing whom you may rely upon as caregivers, whether family, friends or professionals. It’s true that Parkinson’s will likely add some rough weather to your journey. But it’s far easier to prepare for those storms while you’re still sailing.