“Today, I am better than I'll ever be again.” I was jolted when I read Diane Marty’s statement in her inspirational story about her diagnosis of Parkinson’s, Choices, at http://katekelsall.typepad.com/my_weblog/2012/02/choices.html
I would have made the same statement in my earlier stages of Parkinson’s, but after nearly sixteen years of living with Parkinson’s, I respectfully disagree.
A friend of mine with Parkinson’s said that her neurologist said she was better at her current appointment than she was at her previous appointment. The same friend thought that she might be getting better every day with Parkinson’s.
Although no one would probably state that I was getting better every day with Parkinson’s, I’ve been struck with how many times those from my earlier Parkinson’s days have said how “great” I now looked. Did they mean that I looked terrible before and now looked presentable? Some have gone as far as to say that “you look like you don’t have Parkinson's.” Initially, I felt misunderstood when receiving such comments, but now I gratefully accept these as compliments as they were intended.
It also confuses me that sometimes I can look good on the outside when I feel sick on the inside, due to my on/off medication/stimulation fluctuations. Equally confounding are times when I can move with ease, yet simultanneously my speech and voice are weak or slurred, or vice versa, when my movements are slow and stiff, yet my speech and voice are strong and clear.
Without a cure for Parkinson’s on the near horizon and with progression of the disease, I continue to ponder if it’s possible to get better with Parkinson’s. I believe that I am currently functioning “better” due to a supportive husband, family and friends, fine neurological care, medications, Deep Brain Stimulation and competent programming, exercise, yoga, dancing, massage therapy, acupuncture, traveling, volunteering, blogging, a positive mentally attitude, and likely a plethora of other factors.
Now when people ask me how I’m feeling, I'm going to change my response to “I am getting better every day." Call it stubbornness, denial or delusional thinking, I am unwilling to resign myself to “this is as good as it gets for me living with Parkinson’s and Deep Brain Stimulation.”