A person with Parkinson’s speaks out: A letter to my family and friends
I have Parkinson's disease (PD). To be more accurate, I have Young Onset Parkinson’s Disease (YOPD). Neither is contagious and is rarely hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate.
We all slowly lose dopamine cells as we grow older. If the cells suddenly begin to die at a faster rate, PD develops. It is a slowly progressive disease usually occurring as people age.
Most People with Parkinson’s (PWP’s) are diagnosed after the age of 60, but it can affect adults as young as 20 or 30. My first symptoms started in my late 20s, but nobody was looking at YOPD until after actor Michael J. Fox announced that he had it.
There is no cure for PD. Medicines can help with symptoms, but the disease progresses daily. Sometimes surgery (Deep Brain Stimulation or DBS) can control symptoms for several years. However, like me, not everyone is a good candidate for DBS.
Over time, it will take higher and/or more frequent dosages of medicine to keep my symptoms under control. Some Parkinson’s medicines can make me sick, and it takes much adjustments. Some medicines can cause side effects as disturbing as the PD symptoms themselves.
These are some of the things I experience daily that remind me that I am a PWP:
I am reminded when I try to move a part of my body and it says no.
I am reminded when I don't want a body part to move and it moves anyway.
I am reminded when I have something to say, but my voice is too quiet to be heard or I can’t speak the words correctly.
I am reminded when my hands shake so much I can’t hold a cup of coffee.
I am reminded when I have to take all those pills eight times per day, plus in the middle of the night.
I am reminded when I take a drink or a bite to eat and end up choking.
I am reminded when my feet, arms, legs or something else cramps.
I am reminded when I can’t walk without falling.
I am reminded when other people can't tell how I'm feeling because facial muscles freeze.
I am reminded when I get exhausted just from taking a shower.
To my family and friends, I offer this advice: When I cry, am upset or seem depressed, don’t take it personally. Ignore the tears and don’t be afraid of my emotions. I'll be OK again in a few minutes. If not, don’t be offended if I take some time to re-center. PD also affects my emotional controls.
When I have difficulty moving, perhaps my medicine is wearing off. The stiffness and slowness are part of Parkinson's. Let me take my time, keep talking. I’ll get where I’m going eventually.
When I can’t seem to find the right words during a conversation, don’t finish my sentences. Let me try to describe what I’m thinking. I'm still here. My mind's OK. PD causes slowed thoughts as well as slowed movements.
I want to be part of the conversation. Let me speak. Better yet, play word games with me, because it keeps my brain working, and it’s fun!
If I complain of difficulties sleeping, that's Parkinson's. It has nothing to do with how early I went to bed or woke. I may nap during the day. Let me sleep when I can as I can't always control when I'm tired or feel like sleeping.
Sometimes I have difficulty with memory or taking in information. Please speak slowly if I’m writing something down, which I have to do more of these days. The more people there are engaged in conversation with me, the harder it is for me to follow. When I can focus on one person at a time, I feel less stressed and can enjoy myself more.
Remember that even though my appearance and demeanor have changed, I’m still the same friend, spouse, parent, sibling, child, or grandparent that you once loved. My body may not look as good, but my spirit is still in good working order. If I scare you, we can talk about it.
Learn about PD and YOPD. Go to the library and check out a book by a PD expert. Attend the PD Support Group at the Edmonds Senior Center. Visit web sites like The National Parkinson’s Foundation (http://www.parkinson.org/) or The American Parkinson’s Disease Association (www.apdaparkinson.org). Learn more about YOPD at www.youngparkinsons.org. Many organizations will send free literature for you to read.
It took time, but I have accepted my diagnosis and do everything in my power to live a full and happy life – some days, that is, in spite of PD. More often, it is because my diagnosis has taught me to worry less, not to judge, to ask for and receive help rather than to always be the giver, and to love each person I meet.
I focus more on what I can do than what I can’t. I let go of the past, do not dwell on the future, and live for today. Each day is a gift. That’s why they call it the Present.
Dianne Dickerson grew up in Lynnwood and graduated from Edmonds High School. She earned both a Bachelor and a Master’s Degree in Social Work while living in Texas. Dianne has had several essays and books published.