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Learning to 'shake' the pain of Parkinson's Terry Bibo NEWS COLUMNIST Sunday, October 21, 2007 There's a semi-old saying, "When life hands you lemons, make lemonade." Trouble is, life can hand you a lot worse than lemons. But it's interesting to see what happens when you apply the same advice. About a month ago, Joan Blessington Snyder raised more than $20,000 to research cures for Parkinson's Disease with a fundraiser on the riverfront she calls "Shake, Rattle & Roll." She's been doing this for five or six years, and the event just picks up steam on money and attendance as it goes. We met at her house to talk about the results the other day. Joan pulled out a letter she'd gotten from a woman in Chicago who used to live in Peoria. This woman's "once vibrant" grandmother has suffered the effects of Parkinson's. The woman was not complimentary. "I am more than perplexed as to why anyone would find it tasteful or appropriate to name an event 'Shake, Rattle & Roll' for a disease that causes crippling tremors?" she wrote. "Honestly, has the sheer ridiculousness of any of this even dawned on the planning committee? With all due respect, it's just rude and insulting to the victims of this disease and to the family and friends that support them." There are a number of ways Joan could have responded, including no response at all. But she chose to write back. It's worth sharing. "You are right: Parkinson's is a horrible, stinkin', rotten thing for anyone to have to deal with," Joan began. "I know, for I have lived with this unwelcome guest invading my body for the past 17 years - since the age of 39. Please be assured that not a day goes by without me cursing this damn disease and all of the pain, agony and tears that it has caused me. But I want you to know that every day I also thank the Lord for the opportunities that He has opened up to me since I received the dreaded diagnosis. "I thank God for the friends that I would never know, if not for PD. Every day, I thank God for the love, support and care of my family and friends. Every day, I thank God for the circumstances that made an insignificant housewife from Chillicothe, Ill., a force to be reckoned with; able to hold my own with local, state and national lawmakers and to hang out with some of the best and brightest doctors, who treat me as equal. "Every day, I thank God for allowing me to discover what is important in my life and where my true strength lies." As Joan says, Parkinson's has taken a toll. It's hard on her two children, who can't remember a time their mother was "normal." It's hard on her husband, a mechanical type who can fix just about anything except what's wrong with his wife. It's hard on her mother, who lives with the family and has since been diagnosed with Parkinson's herself. And it's impossible to imagine watching your mother/wife/daughter lurch from her wheelchair to a handrail to a desk in the bedroom simply to pick up a piece of paper, knowing that she wants to do it herself, even if she falls. "I notice that when speaking of people with Parkinson's, you refer to us as victims," Joan continued. "I would take offense with that label - if I took the time to let little things offend me. I do not consider myself to be a victim, nor do the literally hundreds of PWPs whom I have met in person or online. We are simply people trying to live our lives as the tricks are played . . . I am not defined by my disease. "So when I choose to make fun of PD, it is not to be politically incorrect, nor is to be rude or offensive to anyone. I prove that I still have a sense of humor despite all of the challenges it throws in my path. It gives me great pleasure to kick PD in the butt and to thumb my nose at it." And then the woman who spends the biggest chunk of her year as the planning committee for "Shake, Rattle & Roll" invited the woman who wanted to defend the people with Parkinson's from insult to come and see for herself next time. Perhaps she will. "I was expecting a stock answer from someone who wasn't battling this disease," was the e-mailed response, in part. "You're right. You're not a victim and I apologize for referring to you or anyone battling this monster as such. I suppose I took offense to the name of your event because I have not yet come to terms with this disease and am not quite to the laughing stage yet. . . Thank you for taking the time to help me understand where you are coming from. It means more than I can say." When life hands you insults, make a friend. When life hands you Parkinson's . . .shake, rattle and roll. TERRY BIBO is a columnist with the Journal Star. She can be reached at [log in to unmask], 686-3189, or 1-800-225-5757, Ext. 3189. Have a thought on this issue? Share it by leaving a message at (309) 687-8439 or e-mailing [log in to unmask] Comments may appear in the Journal Star's YOUPage on Friday. Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn