Stories

Peggy

It's Not a Death Sentence

Diagnosed at 44

“May I help you?” I was startled by the store clerk who brought me back to reality. I managed a weak, raspy, “Just looking,” and wondered how the clerk perceived me. I don’t know how long I may have stood there, but I was holding a bottle of fingernail polish. I used to love those deep, rich colors – reds and brown tones . . . but they were on my taboo list now. I had to go for those sheer, barely-there colors because it would look like a 2-year-old had done the job. I could do one hand pretty well, but the other (even though I am not tremor-dominant) would shake like everything and I’d end up with reds or brown tones everywhere other than on my nails. My legs were aching, and I had only begun my shopping. You would think I would be good at this by now – planning ahead. But my symptoms can surface whenever they well please – and indeed they do. I used to worry about what people thought when I parked in a handicapped marked space. I worried that they would be saying, “There’s nothing wrong with that lady; look how well she’s walking.” I had even considered making this sign to put on my windshield; it would say, “I may not LOOK handicapped, but just wait around and you will see otherwise!” And I suppose if I knew someone was staring at me when I pulled my frame from the car seat , I would sort of play the part of intentionally taking a bit longer to rise and initiate my walk to the store’s entrance. My husband is forever asking, “What took you so long? Tired of reminding him that I have a chronic illness that prevents me from flitting through the store like Wilma Flintstone, tossing items in the buggy and breezing through the check-out, I reply with a sigh, “I’m just slow.” Having symptoms as early as my late 30's, I've had Parkinson’s disease for nearly 18 years. When diagnosed, my kids were old enough to be pretty much independent. But now I have three young grandchildren making demands of me. When they are around, I do feel more energetic - probably an adrenaline surge. I marvel at those with Young Onset Parkinson’s who have small children. It’s challenging to do all that is required of a young parent if you have such a chronic illness; so when someone offers to help you, don’t hesitate to answer in the affirmative. Attempting to be as energetic and effervescent as I was “BP,” (Before Parkinson’s), aging and the wear and tear of a distorted gait or writhing muscles (dyskinesia) are taking their toll. Still functional (I drive, most always walk unassisted, and can take care of my personal hygiene), I know what lies ahead unless science comes through with a miracle. I befriended three ladies through advanced Parkinson’s, and I have bittersweet emotions about that. On the one hand, I want to know, but it doesn’t take a rocket scientist to translate "neurodegenerative" means you only get worse. You don’t give up living because you are diagnosed with Parkinson’s; research is getting close to finding a cure. Your quality of life depends on how you "live" from Point A to Point B. Speaking of Point A to Point B, how did I get here? I was now standing at the check-out with a buggy of carefully selected items: a half-gallon of milk (the gallon size is too heavy), toothpaste and shampoo with “flip tops;”( the screw-on kind are nearly impossible,) mouthwash with a flip top (difficult to find), several boxes of tissue, and finally, my barely-there colored fingernail polish. It isn’t the end of the world to have an incurable illness like Parkinson’s. It’s “how” you live your life - starting today. Do what you can– hold a fund raiser to help fund research, befriend somebody who needs someone with empathy, start a support group, join a clinical trial, or do something positive, like write an article about living with this illness. Parkinson’s . . . It’s not a “Death Sentence; it’s a “Life Sentence.”

4 Comments

Great Story. Try to add exercise every single day, even a little. It will help you grocery shop!

Jackie Russell,
David Zid
Delay the Disease

Jackie Russell/Delay the Disease, Aug 22, 2011

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Im a wife of a YP who is 49 and was officially diagnosed when he was 32. its been a rollercoaster for me and husband and 4 children we have gone trough everything from finding the rigth combination of pills witch cause him to think the he was being chase or chasen.. we were his enemy thanks to YP and Lithium and Bipolar that is another story..even tho there was drama 24/7....we have been married for 28 years .
my kids did the best they could...finally they have come to reality my oldest 27 single and just started college a year ago my second son 25 he is in his 2nd year of college and my 22 year daugther married with 2 children 4 and 2 and my youngest a beautifull 21 young women..you look at my family in a picture you migth think we look very good and there is nothing wrong on the surface ..but if you look into the past you would have never guess what YP and BP have done to our family ..I always felt like we could share our experience from finding yp symtoms while wakeboarding to going to having his own stems cells implanted on his back witch he did improve until he got in a motorcicle accident on witch he knew he wasnt supposed to ride one...this has cause more mental trauma then physically making his dementia come to the surface now everyone can see he dosent make any sense in certain areas of work and I'm getting ready to talk to him about disability ...I have always stay home to be near him to help him with anything he needed from home, we have always been a team not matter what...but I would like to know if this is something the people would be interested in reading about, if we as a family were to write a book trough the eyes of my husband my children and me ...maybe I'm desperate...we have to give up our home, we are getting to file for disability and me and my husband did talk about it once and would like to share it like I said before you will know it by just looking at the pic...what do you think?

hope, Oct 19, 2011

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By all Means write that book! The book would prove helpful for others. Don't talk yourself out of living life to its fullest. Parkinson's sounds so serious, and although there is no cure, researchers are on top of things, and I am confident that better therapies are just around the corner.

Peggy, Aug 30, 2012

any dbs tingeling,mine does?

jim, Mar 18, 2013

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