This site is dedicated to PWP (People with Parkinson's)and their families. I was diagnosed six years ago, and it has been a life altering experience.
The first question I asked my Doctor was "what is Parkinson's disease?" The answer was not very helpful.......He replied PD (Parkinson's disease)is a chronic, degenerative neurological disorder that effects each individual person differently. In my case, I had to fly to Boston on a business trip, and on the plane I noticed my knee start to tremble which I thought was odd, then I lost some dexterity in my left hand, well I was on computer all day so that didn't worry me. I found myself stumping my toe when I was walking through the office on a flat floor, I'm just getting clumsy I told myself. Then my motor skills started to slow down, the office and my family noticed that it took me forever to bring my hand from my lap to my face.
My mom started to question me about the drugs I was taking, they were sure I was on some kind of drug, so they held a family intervention at a small party I was giving and had invited a doctor to come. Well the doctor didn't show up but I was humiliated in front of my friends and family.
The next day I went to see my family doctor. His nurse came in and did her thing and then she looked at me and ask,"Karen are you medicated", I said "no". My doctor came in and listened to my heart, and looked me in the eye sternly and ask "Karen are you medicated"? I told him no, and told him I was getting nervous. He said something was very wrong, that I had no facial expression, and hadn't moved at all since he had walked in and he was going to send me to a neurologist, which he did. And there was where I diagnosed. I had every sympton in the book, all I remember was words like: cognitive impairment, memory loss, dementia, loss of smell, speech and swallowing problems, unexplained pains, drooling, low blood pressure when standing, tremors, balance problems, rigidity, and on and on.
I left the office and drove home, I was by myself. I drove to the only place I knew to go, and that was to my hill. I sat there and cried and cried for 2 or 3 hours. Then went home and told my family.
What I want the family members and caregivers to understand is that we are not responsible for the tripping, falling, mood swings, depression, and all the other clumsy thing we do. In my own family, my broken leg, six broken ribs, broken hip, broken arm, broken neck, and dozens of falls are not my fault. I can do nothing to stop this from happening to me. DO NOT BLAME THE PWP!!!!! We do not do this to keep you entertained.
Caregivers you are so important to the PWP's, please realize the limitations we have and encourage us to get up and move. Parkinson's decease is terrible for everyone, but with understanding we all can come together and make life a bit better for everyone.
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