Periodically I post things written by friends because Parkinson’s affects each of us differently and we learn from each other. The following was written by my friend Sarah. She was diagnosed with Parkinson’s in 2010. Her title for this post is Do I Have Parkinson’s Or Does PD Have Me. I call it Sarah’s PD Story.
I look at other Parkies and compare their symptoms to my own. If I see someone who looks like they
have PD I really want to ask them If they do. I once asked a stranger’s wife if her husband had PD as I held the door for them. She said yes, I said, me too. She said, “God bless you”. Another time I told a former coworker (both of us are retired) that I thought we had something in common. What’s that? PD, I said. He asked if it was that obvious. I said, no, I’ve just learned how to recognize it.
I don’t want pity or attention. Some people feel it’s important to ask first if someone wants help. I’ll take all the help I can get! I started wearing a PD bracelet when I go out so that people might see it and understand why I’m so slow handling money and fumbling with bags, etc. How petty/vain I am! Somebody always has it worse than I do. I’m still getting used to the idea that I have PD and all the baggage that comes with it. I always say we’re like snowflakes - - no two Parkies are alike. We don’t experience the same symptoms, speed of progression, etc., so we’re in uncharted water.
I’ve been asked to come back to work for a special project lasting about 6 months. How many hours can I work without getting tired? Will my hands and brain hold up? A nap at lunchtime may suffice. I’ll let you know how that goes.
I’ve got the PD “masked face”. People think that I’m mad or sad or sick. I try to smile more to compensate. I try to stand up straight and not shuffle when I walk. I catch myself walking by the mirror moving like a zombie with my mouth agape.
I take dance and chorus classes for people with PD. By the way, why is it called a disease? It’s not contagious. Why not call it a syndrome? Then we’d have to call it PS. But I digress. I walk 3 miles every morning. It takes an hour. Sometimes toward the end of the walk, if I’m tired, I list or lean to the left. I’ve fallen 2-3 times, but no real injuries.
When your symptoms get visible you can’t be private about PD any more. A lot of Parkies become shut-ins, not wanting to eat in front of people, for example. I like my PD groups where everybody knows your name and they’re always glad you came.
Why did I get Parkinson’s? I don’t know. Nobody knows. My maternal grandfather had it plus I grew up and lived on a farm for 17 years with DDT and other chemicals. My father died of pancreatic cancer at age 75, my mother - - colon cancer at 93 and my brother - - brain cancer at age 35. My sister-in-law who lives on the farm has had breast cancer. Who knows what - did what - to whom. I fear for my siblings and provide them with a list of symptoms to watch out for.
Have you done a will and health directive? I’m working on it. I’ve decided they can keep me alive for a week before unplugging me. Willing my brain to science sounds so righteous but I don’t know if I can do it. I’ll let you know.
I scan the obits to see who died of Parkinson’s and Lewy Body Disease. I started doing that upon diagnosis because I was curious how long we live after diagnosis and at what age people die. The verbiage is usually “a long struggle with PD” or “a brave fight” or “a 10 year-battle”. I cut out the obits and glue them onto a cardboard portfolio like you would use for a school project. I must have collected 300 by now. Do you want to see them?
I’m obsessed/curious about death now, especially since my Mom died on “my watch”. It was about 3 years ago, she was 92 and at her home in hospice care. I’ve been reading books about death and dying, trying to figure it all out. The latest is “Dying Well” by Ira Byock, M.D..
I have a great fear of what will happen to me. I’m really scared. I suppose it’s natural to feel that way. I’m trying to face that fear. I’ll probably move back east to be near my siblings. My two sisters say they’ll take care of me but they’re both older and may need me to take care of them! Back to the DDT farm? Maybe I’ll get cancer and not have to worry about the end stage of PD. My husband is 5 years older than I am and has had cancer. I may outlive him, my caregiver. I’m 62 years of age, diagnosed 6 years ago. I take Mirapex, 1.5 mg three times a day. Hardly anyone else I know takes Mirapex because of the side effects such as compulsive gambling, shopping, sex, etc. I don’t gamble.
As I write this I’m lying flat in bed on ice and Ibuprofen due to hurting my back pulling weeds. By the bed I have a walker, a “footed (quad?) cane, a grab-it apparatus, a TV tray and a collapsible cane. These items are getting a test drive and I’m getting an inkling of what life might be like for me in a few years. I finally got my husband to install grab bars in the shower. I hold on for dear life, knowing that it only takes a second to fall. I’ll let you know if the shower chair is worth the money.
I try to stay positive. “Live in the here and now” people tell me. What does that mean? Don’t think about the past or future? Stick your head in the sand and make believe what has befallen you is not an elephant in your brain? I can only change my attitude, not my predicament. I’ll get back to you on that.
What is Important to you? What makes you happy/smile? Here’s my list, some frivolous, some cliché.
A good haircut Care giver Cat Chocolate chip cookies Chorus
Clean sheets Cleanliness Clothes that fit Clothesline Comfortable shoes
Dance class Dignity Driving a car Electric blanket Electric toothbrush
Family Fiber Friendship Happiness Heirlooms
Helpful salespeople Home-grown tomatoes Hot shower House guests Husband
iPhone Ices Jack Johnson Jewelry Meds
Mobility Money My neurologist Politeness Practical jokes
Puzzles Rod Stewart Sharp scissors Snapple iced tea Sunsets
The house I grew up in Thrift stores Walking Warm feet & hands
Will you get back to me on that.
