What lies behind us and what lies before us are tiny matters compared to what lies within us.
Ralph Waldo Emerson (1803-1882)

 Eight years ago when I was diagnosed with Parkinson’s at the age of 44, I asked the question “What’s ahead?”  At that time I didn’t have a clue as to what direction my life would take.  A successful career as an elementary principal and a loving and supportive family weren’t enough to keep my attitude “positive.”  It wasn’t until I began to dig for information myself that I realized just how powerful the words of even one person is in our democratic society.  I often stop and wonder how an online journaling experience and a PD chat room could have evolved into where I am today in dealing with this disease.  The word “advocacy” wasn’t even in my vernacular when I attended my first PAN Forum in June of 2000.  Today, I wear the label of Parkinson’s Advocate around the country.

I am likewise a new granny.  My eldest daughter and son-in-law have given me a beautiful granddaughter (now 5 months old), and my son and his wife blessed me with a precious grandson (9 weeks old).  My "babies" will be phasing into childcare the first of July.  In fact, my granddaughter begins her initial 4 hours next week.  I look at these babies and think that if I didn't have this darn PD, I would be able to keep them more often.  But I was reminded how inept I am when I lost my sure grip the other day trying to get my granddaughter out of her jumper seat!  She was never in danger as I quickly lowered her to the carpeted floor, but there is still that potential hazardous possibility. 

 I have to come to grips with the fact that I am NOT cured.  And I want so to be "normal" - not exhausted after walking to the mailbox (and that's a long walk to the end of the driveway in rural Tennessee!).  I am so thankful that I get along as well as I do, but I have got to stop with this facade.  I will sleep in my clothes and/or make-up when I have an early commitment the following morning.  And I was so very good on our recent 7-day family cruise.  They offered a vegetable entree' at every evening meal.  I always watched my daytime protein intake and chose the veggie thing for dinner.  But one night they had lobster tails - succulent and already out of the shell with this little server who further cuts the meat out for you. All this served with melted garlic butter on the side – yum! Did I resist?  Nay! 

 If I do the protein thing in the evening, I usually don't opt for a lot of activity that night.  But the following day when I had eaten yet more ice cream and cheese items than I should have . . . well, I turned into a pumpkin at dinner!  I made it through the appetizer, then a sure sign that I was waning fast was when I dropped my fork into the salad plate and later missing my mouth, ruining my dress.  All of this combined with the emotional embarrassment I was experiencing and it happened.  I had to be removed from the dining room via the wheelchair.  Everyone was staring (not imagined!) and were smiling and waving as I left the room, my husband pushing me.  Then this one sweet little "greeter" who gives you a handful of mints as you exit each evening, jumped in front of the wheelchair and exclaimed, "What happened to you?"  A brief, "I have Parkinson's." was all I could manage.

 My family didn't even notice that I was going down fast that night.  The kids still don't get it - my hubby still doesn't either.  And you know what?  I don't get it either!   Since surgery 3 years ago, I am a new person.  Before that it was episodes like I just explained daily . . . sometimes hourly!  And protein didn't have much to do with them either.  And I reiterate that I am thankful for my regression, but I have the other side of my brain needing surgery.  And since the surgery is just in Phase II, Lord only knows when that time will come!

 The local TV people came to my home after I recently won the PAN Advocacy Award to get my "story."  I told them to come around 10:00 a.m.   I told the reporter that there was no way I could do without meds completely that morning, but I did a “no-no” just to show some of what we PWP’s contend with daily.  I was about 30 minutes late taking my morning dosages, and I ate yogurt (protein) for breakfast.  Yep; by the time the reporter arrived, I was a pumpkin again!  The reporter marveled at the change, and kept saying things like, “Get some footage of her walking ! Get those hands! Etc.”  Sure enough, the appearance was astounding!  I even had a gentleman to ask later if that was earlier footage of me walking in baby steps!  “Nope,” I replied.  “Just a good ole ‘Off.’”  Parkinson’s is often called the “designer disease;” meaning the symptoms and reactions to treatments are highly individualized.

Do we do PD an injustice by "doing as well" as we do?   Should we stop trying to reclaim our normalcy and let the world see us as we really are?  I think we know the answer.  If one more person asks me if I had the same surgery as Michael J. Fox; or if I hear "Oh; they have medicine for that don't they?" then I am going to start taking punches!  Not really, but I sure feel that way at times.  As a former teacher, why do I find it so different in educating others about living with Parkinson’s?  As Sgt. Friday used to say on the old TV series, “Dragnet;” “Just the facts, ma’am . . . just the facts.”  And that applies in making others knowledgeable in Parkinson’s awareness.

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*  Peggy was awarded the Louis Fishman State Coordinator for the Year Award at the 2003 PAN (Parkinson’s Action Network) Forum in May of this year in Washington, D.C. The story is here.