Celebrate Your Life — You Don’t Have To Celebrate The Parkinson’s Disease

Someone that I respect recently wrote an Op/Ed piece that I felt shined  a more negative light on people who maintain a positive outlook on people dealing with Parkinson’s disease.  My interpretation of the piece inferred  that Michael J. Fox calling himself “lucky” or anyone  who considers  themselves lucky to  have Parkinson’s,  to be a “Pollyanna”.  Pollyanna, (as I have read accounts and in full disclosure not read any of the books) went through extreme suffering but was grateful for what she did have.  I see this trait as nothing but admirable. If seeing  the glass half full as opposed to half empty, empty, or even dirty and cracked is Pollyannaish then paint me as a “Pollyanna”.  Having lived over 25 of my 44 years of life with this challenging illness, I am not naive nor am I uneducated. I am well aware that this illness robs millions of people around the world of their ability to move, to work, or to function as they choose. The mind seems to get a mind all of its own and neither the mind nor the body wants to respond to one another.   

Parkinson’s  symptoms of tremor and rigidity appeared in my life at the early age of 17. I spent over 6 years without a diagnosis, never knowing what I was dealing with or how fast it might progress.  Was I scared? Sure.  Did I feel  sorry for myself? Only, after I got booted out of Outward Bound for being considered a health risk to the rest of the hiking party did I feel a real loss, because of the bonds that I had made and my failure to complete what I had started.  Thankfully though, my dismissal from hiking the rugged mountains of North Carolina led me to my last 3 or 4 doctors who finally diagnosed me with Parkinson’s disease. Not until years later, did I realize that it took my leaving the group to get diagnosed and move on with my life. 

The diagnosis of Parkinson’s disease for most people, can be sheer shock and devastation, or sometimes provide a sense of relief such as, “I had a feeling that it might be Parkinson’s” is heard from someone newly diagnosed who was looking for the culprit behind the symptoms.

 As a support group leader, a frequent speaker,  an active advocate for Parkinson’s disease issues,  and as an attendee at several  conferences a year on issues related to Parkinson’s disease,  I can honestly say that those people dealing with Parkinson’s disease who keep a positive outlook, appear to be doing far better than those who are less positive. Staying positive is a choice.

Once I received a diagnosis, I had an idea of what I was up against. Usually, people with  early or young-onset Parkinson’s disease symptoms progress slower than older patients. The Disease can impair both mind and body, cognitive function, memory, speech, swallowing, balance,  gait, posture,  and numerous other challenges. Parkinson’s can unleash an array of physical and mental  complications and with side-effects from Parkinson’s  medicines almost every patient can have a unique combination of symptoms .  Some people with Parkinson’s  show little to no obvious physical impairments but may suffer strictly from cognitive issues or vice versa.

The really good news is that as bad as this illness is or may seem, there are numerous therapies, medications,  exercises,  doctors, and classes, support groups out there that can make a difference in your life and help you change your life for improvement. While I don’t discuss DBS (Deep Brain Stimulation) surgery, I have seen it help many friends and for some it has not been as positive.

Parkinson’s has taught me to appreciate every day, to appreciate and to truly be grateful  for the good things and the simple pleasures in my life. Whether one has Parkinson’s  disease or is in perfect health, the realization that a positive outlook not  only makes you feel better but makes those around you feel better as well. I didn’t choose to spend the majority of my life with Parkinson’s disease, but I did. Sure, illness throws roadblocks and detours in the path, but that’s where the ability to adapt and creativity come into play.  Any illness can change how you see yourself and may get in the way of your perception of who you really are.  This is an opportunity to take a hard look at your life and observe that maybe a change in lifestyle is in order. Reducing stress and altering your life for the better in diet, exercise,  and complementary therapies on top of neurological care can have a tremendous impact on mood and well-being .

I hope and wish for a cure for all of us. Until the puzzle of Parkinson’s disease is solved, I believe the best course of action is to stay informed, take the best care of your body and mind as you can, take your meds on time, eat low on the food chain, eat organic, and get your rest.

If every day were sunny and warm could you truly appreciate the loveliness without experiencing those cold gray damp days of winter? The balance of life exposes us to pain because without it, there is no knowing pleasure. 

Take stock in the fact that people care about you. Focus on the simple things in your life that you can appreciate, like having a comfortable place to sleep, clean air and water,  the beauty of Nature around,  and so many more details of life.

I would like to know what you think.

About Karl Robb

Karl Robb has had Parkinson’s disease (PD) for over twenty-five years. Karl believes he has had PD since he was seventeen years old and was diagnosed at the age of twenty-three. Now fifty, he is a Parkinson advocate, entrepreneur, inventor, writer, blogger, photographer, Reiki Master, and speaker on PD issues. Karl is the author of the book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease. He has been chosen as a blogger partner for the 4th World Parkinson Congress being held this September in Portland, Oregon. He has a bachelor’s degree in English from the University of North Carolina at Chapel Hill. His writing has been featured in The New York Post and he has appeared on BBC radio, the CBS Saturday Evening News, Japanese television, as well as several local Washington, D.C., television stations. Karl is a former board member and a Virginia assistant state director of the Parkinson’s Action Network and a board member of the Parkinson Voice Project. You may reach Karl via email at asoftvoice@gmail.com, visit his blog at www.asoftvoice.com, on Facebook, or contact him via Twitter @asoftvoicepd.

Posted on May 9, 2011, in Education & Support, Health, Media & Trends, Parkinson's Disease, Philosophy, Politics, support groups, Uncategorized and tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. I simply love your blog, and there is far too much I could comment on this post would end up being another blog! What really resonated was the bit about being cheerful and the correlation between that and being well….. it stands to reason of course but it is nice to see it in action….. and thats me…. I am a cup not just full but cascading over with joy, smiles, happy, fun, laughing….. and I am 8 years in and quite remarkable. My life is not about PD its about everything else…… and you are something else 🙂

  2. Although it’s hard to stay positive I’m sure you are right.

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