Is there Life after Parkinson’s?
Many would argue and answer in the negative while others hold reservation inclined to a more optimistic attitude….
I would say a resounding YES!….There CAN be a GREAT LIFE after Parkinson’s…
just look at Michael J. Fox ….he has been up and down ( now I feel like breaking into chorus like Sinatra) but I digress….he is starting in a brand new T.V. show which debuted a couple of weeks ago in which he is the main star playing a man living with Parkinson’s Disease (PD).
After many trials and tribulations even in the face of continued dyskenesias, he has found his niche again……
I myself have not always had an easy time of it in the last 8 years since my diagnosis. I have had to face many challenges of my own and at times simply felt like giving up but despite all the heartache and personal losses in the end the uphill battle has been worth the climb!
In thinking about the life with PD, I am reminded of the dry bones in the desert into which God breathe life into ….surely we are not to that stage yet, so there must be hope …
Yet, all us have been confronted with the stark reality ….this IS OUR LIFE and IT WILL ONLY GET WORST (PHYSICALLY)..which BELIEVE ME ……even for an ETERNAL Optimist such as myself …this is ONE BIG MASSIVE HORSE PILL to SWALLOW!!!!
I can certainly understand why some people feel like they have been handed a “life sentence” when given this disease diagnosis. I, as a neurologist and Parkinson’s specialist, have witnessed all the varying stages of this devastating illness from early diagnosis to patients finally succumbing to this diseases having battled it for years with courage, great dignity and equal bravery.
when I think of these wonderful people whom I had the honor and privilege to care for I get sad, begin to bargain, but refuse to get mad……so I feel like I am drowning …….BUT maybe we do NEED to get MAD…..and fight …back with even greater force…we don’t have to take it….we don’t have to be passive….there are things we can do for ourselves and others….but we first have to learn to LET GO of the pAST (something which I have had a very hard time doing until very recently) ….we as individuals are meant to grow and change and evolve…so why cant I move on? I guess is stubbornness, denial, vanity, not accepting that I too need help ….we are not islands to ourselves…we do not live in isolation…..the body functions with the help of many members with different functions …yet they are equally important…one CANNOT function without the other! We need each other as support …
Now my chronic illnesses (PD) has put me in position to be dependent on others at times but it has also allowed me to become a better human being a better person, wife, mother and friend! I can appreciate my patients humanity and makes me want to fight the stigma of PD with which so many people live with even more.
The other day as I was sitting at a football game watching my daughter perform in the band, I saw a beautiful rainbow in the sky …which reminded me that ” you can’t have rainbows without storms” yes, my life has been one HUGE storm lately but I have seen and experienced many wonderful things along the way that had I NOT been diagnosed with Parkinson’s and forced to look for plan B and give up my solo practice…I would have missed out entirely….like going to my daughter’s concerts at school, and learning to be a better mom- my daughter said the other day…’ your cooking has gotten so much better since you stopped working! I am so glad you are home more now!” these are the real treasures in life ….that along with all the wonderful and extraordinary people I have gotten to meet along the journey have deeply impacted and enriched my life forever in a way that perhaps would not have been possible with my previous duties and responsibilities even if it was my desire to connect more with others (outside of my practice and immediate circle of friends and colleagues)….
As dumbfounded and somewhat apprehensive about my future (knowing all the intricacies of the disease first hand) as I was, it was liberating to know I had a chance to do something new with my life! This was the opportunity of a life time…how often do we get a chance to start over? Until now, I had always known or had an inkling of what I was going to do the next day and the day after. But, now the pages were blank….it was up to me to decide if I was going to panic, be paralyzed and consumed by this illness or pray and be empowered by it and continue pursuing my passion in different ways outside of my traditional role as a neurologist. Parkinson’s has allowed me to express myself more creatively through my writing and has thought me to laugh and find joy in everything no matter what. Life is sweeter this way and makes the hard times easier to endure.
So, where ever this disease finds you today whether still gripping with the shock of a new unexpected diagnosis or you are cruising life as a pro or battling the problems that come with end-stage disease, I encourage everyone to embrace the odyssey of becoming more human, more empathetic, more able to relate and anticipate the great need of others (like ourselves).
And in a hostile world where things don’t always go our way and terrible things do happen to good people…despite your limitations and failures shout as the poet and author W.H.Auden once wrote : “let the more loving one be me!” (The More Loving One) and in the process all those new found relationships will deepen your reason for being and help to discover goodness and contribute to its beauty by the works of art, music, poetry and other writings you all create by virtue of having Parkinson’s.
Dr. M. De Leon is a retired movement disorder specialist, PPAC member and research advocate for PDF; Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at www.facebook.com/defeatparkinsons101 you can also learn more about Parkinson’s disease at www.pdf.org or at www.wemove.org; www.alz.org, www.aan.org, www.defeatparkinsons.blogspot.com
may also contact me at