After reading Rachelle Friedman’s article entitled “10 Things You Shouldn’t Say to Someone Who Uses a Wheelchair,” I was motivated to write a Parkinson’s Disease (PD) version of “what not to say” and hopefully clear up some of the misconceptions.
1.You don’t look like you have PD.
PD progresses differently in each person. Not everyone experiences all of the same symptoms or has the same severity of symptoms. When the PD meds are working well, one can look nearly normal and can be highly functioning, and in contrast, when the meds are not working effectively, one frequently has trouble functioning and it is often apparent that the person has some sort of medical condition.
2. You don’t look old enough to have PD.
While the average age of onset of PD is around 60 years old, there is a large group of young-onset folks diagnosed with PD before the age 50.
3. I don’t see you shaking. Are you sure that you have PD?
The majority of people with PD experience the motor symptoms of tremors, stiffness and slowness. While 70% of persons with PD have a resting tremor, others don’t experience any form of tremor whatsoever.
4. My Grandpa had PD, so I know exactly what you are going through.
If your Grandpa had PD before the discovery of Sinemet, the gold standard of medicine for PD in the 1960s, his condition was likely far worse than patients with PD today. Each person’s experience of PD is unique, which makes it nearly impossible to know what someone is going through.
5. Hackneyed platitudes such as the following can be perceived as insulting or annoying.
Everything happens for a reason.
Just be glad you don’t have anything worse than PD.
God does not give us more than we can handle.
My thoughts are with you
What doesn’t kill you makes you stronger.
6. You are an inspiration and you are so brave.
When being described as inspiring or brave, many people with PD feel pressured to live up to these expectations. It makes them feel anxious to become the poster child for inspiration and bravery and afraid to reveal their true fears.
There is nothing inspiring or brave or glamorous about living every-day life, doing daily errands such as going to the grocery store, cooking and eating dinner, cleaning, reading, attending doctors’ appointments.
7. With your positive attitude, I know you’ll beat PD.
While a positive mental attitude is very helpful in living with PD on a daily basis, PD continues to be a chronic, progressive neurological disorder that is currently incurable.
8. There will be a cure in the next 5 years.
When I was diagnosed with PD more than 17 years ago, the buzz in the neurology community was that there would be a cure for PD within the next 5 years. Three 5 year periods with PD have come and gone, and there is still no cure. False hope is not reassuring.
9. Why are you parking your car in the handicapped space if you don’t have trouble with walking?
While sometimes some people with PD can walk without difficulty, other times these same individuals have gait and balance problems making it difficult to walk safely. At these times, parking in a handicapped parking spot can be helpful.
10. What do you do all day? It’s good that you get out of the house once in a while.
I am an active person who enjoys walking, reading, writing, blogging, volunteering, going to movies and dancing. I get outside everyday and am not a hermit.
11. Often said by doctors--You are a highly “unusual” case.
I don’t want to be odd or unusual. My preference is to be described as a fascinating and interesting person with a challenging medical condition.
12. Suffer, suffering, sufferer (any derivative of suffer)
I hate all those “suffer” words because many of us with PD don’t feel or act like helpless sufferers, but instead are proactive in our medical care.
"10 Things You Shouldn’t Say to Someone Who Uses a Wheelchair"
By: Rachelle Friedman