The diagnosis of Parkinson’s is particularly challenging to hear. Parkinson’s is a progressive, degenerative neurological disease. You knew something was wrong. But having your neurologist give it a name, can be - at the same time - both overwhelming and comforting. At least now you know what you are dealing with.
You’ve likely been through several misdiagnoses. Parkinson’s has no blood test, spinal fluid test, DNA or other definitive test. Most likely, your movement disorder neurologist, who deals with Parkinson’s patients daily, made the diagnosis based in part on the way you walked into the exam room. Current thinking is that you probably had Parkinson’s for perhaps 20 years before symptoms reached a point where it could be identified.
It’s a disease that has been going on in your body for years, long before diagnosis. Although there’s currently promising research, there’s no test to confirm you have Parkinson’s. There’s no cure yet, and no test to verify it has been slowed or halted. (Researchers are making progress on diagnostic tests.) Only symptomatic treatments – ones that work for some and not others, and that may work now but not as well later – are available today. And a big point to recognize: No two individual’s disease progresses in the same way or at the same speed. Parkinson’s may have a significant impact on you over time, or may be just another of life’s many challenges.
Some people with Parkinson’s are hesitant to join a support group for a variety of reasons. Some have had their communications skills diminish, reducing their social contacts. Some do not want to see in others how their disease might progress. Some think there’s nothing that can be done. Some would rather not think about Parkinson’s at all.
But almost everyone, newly-diagnosed or diagnosed long ago, finds support group meetings and functions to be informative, supportive, encouraging experiences. With our educational speakers, the sharing of successes and strategies, social activities, and important exercise programs, you soon realize that we’re all on the same path, that there ARE ways to improve your quality of life, and that YOU ARE NOT ALONE! We are fighting Parkinson’s together!