For those who care for someone with Parkinson's disease
Parkinson's disease Caregiver Commentary
What follows is a peek into the mind of a PD Patient. In the early stages of this disease, I find these symptoms particularly bothersome:
- Tremors: Fortunately this symptom does not, as yet, have a serious impact on my day-to-day activities. My tremors are quite mild, and occur mostly in the morning before I take my morning meds. They are nevertheless on this list because they affect such activities as buttoning and zippering as well as cutting food. I have also learned not to order certain items from a restaurant menu. For example: I can't twirl spaghetti anymore.
- Poker Face: Every so often I am aware of it. I first noticed "the look" when looking into a mirror at the barber shop. I also noticed that I have it whenever I am not involved in group conversation.
- Turning over in bed and adjusting bedclothes. It seems like I am constantly making adjustments and, of course waking up each time. Though she does not complain about it, I am sure my spouse (caretaker) is affected.
- Hygiene: Showering used to be a five-minute event but now averages about fifteen minutes. All my movements seem to take much longer than normal and I often feel unstable. Without a chair to be used when toweling off, I suspect I would be taking an occasional spill.
- Swallowing: Although I frequently take meds without liquids I find food particles often seem to stick in my throat. Also, if I fall asleep on my back, I frequently have a reflux reaction and often cough until I turn on my side.
- Walking, falling or "freezing" or as I call it "my shuffle". I get up slowly, move cautiously and sometimes feel I am losing my balance but have not actually fallen since prior to my diagnosis in December 2006.
- Intellectual Impairment: My short term memory is more often than not unavailable but long-term memories are easy to recall. Old song lyrics, school chums names and long poems like Paul Revere's Ride are a piece of cake for me.
- Vivid Dreams: Dreams sometimes seem bizarre and have most recently involved violent physical movement, which has recently scared the dickens out of my wife. I am concerned that they could result in an unexpected traumatic episode involving my spouse or me.
- Handwriting: I hesitate to write anything and am embarrassed when asked for a signature. Printing is satisfactory but done slowly.
- Speech and salivation: I have the combined these symptoms because they often occur simultaneously and are equally mortifying. Stammering, drooling and nose running are symptoms easily observed and you can only imagine how they affect my psyche.
Well, there you have it! The top ten things I wouldn't mind losing with a cure for PD.
About the Author
Diagnosed in 2006, Bob was a Parkinson's patient from North Texas. He was a Korean War Navy Veteran, graduated from Temple University in 1959 with a B.A. in Political Science and worked for 40+ years in the Trust Administration and Wealth Management field. Bob retired in 2001 as Senior Vice President of his company's Los Angeles Office.
Although medical problems reduced activities to some of his charitable volunteer work, he kept himself busy working as a Parkinsons advocate. Bob worked with the Michael J. Fox Foundation, the Parkinson's Alliance, the Parkinson's Acton Network and with the Obama Administration's Health & Human Services Department in advocating patient input to a proposed National Healthcare Information Technology Database.
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