It can be difficult knowing how to respond to someone who has Parkinson’s disease (PD). Trying to find one sentence that expresses your concern, compassion and your desire to help can be as difficult as hugging a greased pig. Sometimes our best intentions are taken out of context and we can sound insensitive. So instead of writing about what to say to someone who has PD, I decided to put another coat of butter on the swine and let it loose. Here are 12 things NOT to say to someone with Parkinson’s…
1. “My grandpa had Parkinson’s and once they gave him medication, he’s just fine.”
-As I have described in an earlier blog “Not your grandfather’s disease”, the overgeneralization that Parkinson’s only impacts elderly people is common today. Just because your grandfather had this neurological disorder and was able to control it with medication, doesn’t mean that everyone will have the same outcome. We each have a body that is unique to us in the way it manifests symptoms and how we metabolize the medications.
2.“You have Parkinson’s disease? But you don’t have a tremor.”
-Each person will experience Parkinson’s in a distinct way; some may have a tremor, others might have rigidity. We are kind of like snowflakes… no two Parkies are alike. Or maybe you’re a fashionable and chic Parkie, you could see it as we all have own pair of designer jeans that we love to wear. Although they may look similar, we each wear our jeans differently.
3. “With medical technology nowadays, I am sure they will find a cure within your lifetime.”
-This is a hope that many of us Parkies have, but being realistic offers the brutal honest truth. We might find a cure someday, but that day has not come, so to brush off our fears with an unknown future can be frustrating.
4. “You look like you are having a good day, your Parkinson’s must be getting better.”
-Three words, “Degenerative Neurological Disease”. Parkinson’s is a progressive chronic illness that will worsen with time. Just because a Parkie appears to be having a good day with little symptoms, doesn’t mean that their PD is getting better. There is no cure, no way to heal from this illness, and keep in mind that even hour to hour a Parkie may appear better or worse.
5. “You have trouble multitasking? I can’t multitask either, maybe I have Parkinson’s”.
-You’re basically saying to a Parkie, who feels like they have gone crazy, “What you’re experiencing is not a big deal, and maybe you’re overacting.”
6. “God can’t give us anything we can’t handle.”
-Religion and Spirituality is a very personal experience, try not to push your values on someone else. Everyone has their own coping mechanism when faced with diversity… let them find what works for their situation.
7. “Those medications can’t be good for your body, have you checked into a holistic approach? It might be your diet.”
-Oh! If I only I’d known it was a milk allergy that caused my Parkinson’s… riggggggght…
8. “Well Parkinson’s doesn’t kill you, so that’s good.”
-Yes, Parkinson’s does not “kill you”, but it’s the complications of the disease that can. Caution: attempting to help someone see that it could always be worse, may result in a Parkie throwing a blunt object at your head… don’t say that I didn’t warn you.
9. “My father had Parkinson’s disease, I know exactly what you are going through.”
-Ummm, I’m a 30-something woman. Even if I found my identical twin and we both had Parkinson’s at the same age, we would have different experiences. We would eat different foods, live in different environments, and cope with our illness differently.
10. “I don’t know what I would do if I got Parkinson’s disease, I would probably give up on life… You’re so strong.”
-Such comments can suggest that Parkinson’s is a death sentence. Although you mean well by complimenting the strength that your loved one is displaying, it can be interpreted negatively, it sends a message of hopelessness. Nobody wants to hang around Debbie Downer.
11. “You’re the Perky Parkie, you can’t be sad.”
-It’s my party and I will cry if I want to! Just because it might be difficult to see the people you love going through emotional and physical pain, doesn’t give you the right to dictate how they should feel. Most days I am ball of energy, but then there are times that might be a little dark and that’s ok.
12. “Don’t let Parkinson’s define your life.”
-A person is ultimately responsible for their path in life and they determine what’s important to them. I am not just a person with Parkinson’s disease and although it doesn’t define me, it is a huge part of who I am.
I know what you are saying….”Ok, I get the greased pig thing…. but what should I say to someone with Parkinson’s disease?” The answer lies within my blog. With each of us being little snowflakes, our disease is unique to only us. That means that we will all need support in different ways. Don’t believe that a someone will cope the exact same way that you would. We have lost so much control in our lives, we don’t want someone dictating how we should cope with PD. Take the time to have a conversation with your loved one and meet them where they’re at. Let THEM tell you what will be most helpful when faced with the challenges of Parkinson’s disease.