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Personal Reflections...
Helping The Children, And Myself, Understand Parkinson's


This is something I wrote in response to a question posted by Nick on the Parkinson's Board.  He asked: "How have you explained your pd to the children in your life? What problems have you run into? is there any strategy that has worked particularly well? " My answer is as follows:

My kids were only 7, 9 and 10 when my tremor began. I guess the fact that I always brushed off their questions regarding why my hand shook, mostly because I truly didn't know myself, made the entire tremor a non-issue.  No big deal, as they say. When I finally received my diagnosis of Parkinson's, two years after the tremor began, there was one main image my children (well, most people for that matter) would associate with the disease: Michael J. Fox. He retired from his show Spin City just a month after my tremor began.  The media coverage about him was huge at that time, which not only brought a lot of awareness to the disease, but it also gave Parkinson's Disease a face.  As much as they adored his sitcoms and movies, it wasn't a face my kids wanted to see on their own mother.

But Michael J. Fox received his diagnosis 10 YEARS before I received mine.  He was 10 years ahead of me in symptoms and 10 years ahead of me with medication and, more importantly, he was 10 years ahead of me in HIS case of Parkinson's Disease, NOT MINE.  While I had yet (even still have yet) to experience any dyskinesia,  people seem to immediately conjure up an image of Michael's uncontrolled movements when they imagine Parkinson's. What they don't understand is that MAY NOT EVER BE WHAT I EXPERIENCE. Even my daughter's recent discovery of a sentence in her Highschool's Honor's English text book stating that "Michael J. Fox is not yet an invalid but suffers from a disease that will soon leave him in a helpless state" exemplified what I'm up against in trying to assuage my children's fears revolving around my diagnosis.

After receiving my diagnosis, their first question was the one I expected, "Will you die from Parkinson's".  It was the same question I had asked my neurologist and I tried to assure them what he tried to assure me, "ofcourse not! People die with Parkinson's, not from Parkinson's".  I also told them what my neurologist had added, that they are getting closer and closer to a cure. Ironically, we can thank Michael J. Fox, in a way, for that because his famous face has not only brought awareness to Parkinson's, but it has also brought more funding than ever towards Parkinson's Research.  Still, the children had concerns and so did I.  Not letting them know I had concerns myself was truly the hardest.  Trying to maintain a non-chalant "No Big Deal" attitude about Parkinson's wasn't easy, especially with those images of once healthy and handsome people becoming hurting and handicapped because of that very same disease.  Michael J. Fox, The Pope, Muhammed Ali...they became the face of Parkinson's to the world, but in our house Parkinson's would begin to look like Mom.

In the years following my diagnosis, trying to assure the kids that Parkinson's was "no big deal" became even more difficult.  Not only was it changing Mom slowly and surely, it was getting some bad press, too.  Headlines would litter the News papers:

William Masters (sex researcher) -- Dead. Complications of Parkinson's Disease. Died February 19, 2001. Born December 27, 1915. Of Masters & Johnsons.

Edward Winter (actor) -- Dead. Parkinson's Disease. Died March 8, 2001. Born June 3, 1937. Col. Flagg on M*A*S*H

Pauline Kael (critic) -- Dead. Parkinson's. Died September 3, 2001. Born June 19, 1919. Longtime film reviewer for the New Yorker

George Roy Hill (director) -- Dead. Parkinson's disease. Died December 27, 2002. Born December 20, 1921. Directed wonderful movies including Butch Cassidy and The Sting

"What? I thought People didn't die FROM Parkinson's"...someday soon people won't, I try to reassure them...and myself. Someday Parkinson's will be something people "used" to have.  The year following my diagnosis, and 6 months after I started Sinemet, Michael J. Fox went on his book tour for "Lucky Man".  While it was wonderful he was bringing awareness to Parkinson's even more, it was difficult for me to see him on the talk shows and news program suffering with his severe dyskinesia knowing it was the Sinemet and not the Parkinson's making him move that way. I began to think that the longer I waited to start Sinemet, the longer until I may have to see those side effects. Against my doctor's wishes, I went off the Sinemet.

It took me yet another year to teach myself that those were HIS symptoms not necessarily MINE, something that is easy to forget when you see someone else with the same disease. It was a year of returning to Parkinson's after the relief Sinemet had temporarily brought to my life and seeing the slow yet steady progression of the disease unmedicated that made me realize I needed those meds afterall. While I may risk side effects, my doctor finally convinced me it was imperative for me to return to medication to help the quality of my life.  Boy was he ever right.  I feel renewed and this has really helped my children face their daily image of Parkinson's.  Their daily image, thanks to Sinemet, has no more cane or limp or stiffness or tremor when the medication is "on".  Their old image of Parkinson's is shadowed by a happier, healthier Mom.

Funny, now that the Sinemet is in my system, the children will stare at my right hand in amazement: "it's so strange to not see you shake?". They can hardly remember a time when I didn't have the tremor.  They relish my ability to take long walks with them or shop all day at the mall, things unheard of just a month ago.  Participating in the study at NIH has helped, as well, because the researcher who visited our house from there was able to tell them about the studies being conducted and the hope they have for the future of Parkinson's.  "One day we'll be able to diagnose people with Parkinson's before they ever experience a symptom...some day soon people will never know what it's like to have Parkinson's".

So, we assuage the children's FEARS (and my own) with HOPE and we hold on to that hope tightly.  When I began this adventure with Parkinson's, I only had 3 children. Now, I'm the mother of four and my youngest will never know what Mommy was like without Parkinson's...that is until there's a cure.  Perhaps, by then, he'll never know what Mommy was like with Parkinson's because he was too young to remember those days.

Lauren Sue (proud Mommy of Breezy 14, Drew 13, Miranda 10 & Joey 2)

Lauren Sue & Crew in Summer 2005
Breezy (16), Mommy (38 1/2), Miranda (12), Joey (4 1/2) and Drew (15)