My wife has Atypical Parkinson’s Disease with PD/Lewy Bodies dementia. She was diagnosed three years ago, and the progression (movement-side and cognitive-side) has been much faster than typical PD.
Because of Michael J. Fox and his transparency about Parkinson’s, most folks think they understand what my wife and I are going through, but they don’t because of the variety and complexity of the disease.
The reality is that everyone has their own “version” of the disease. So, when folks tell me they understand and/or know what I’m going through OR try to tell me how to fix it, I think to myself that they are well-intentioned, but they—
Don’t have a clue!
And I wish they would acknowledge that and be more open-minded and curious.
When will we understand that unless we’ve gone through exactly what another person is going through, we know nothing about it. Zilch. Nada. Zip. Zero.
Instead of acting like we do, why don’t we quietly acknowledge that we know nothing and give them our heartfelt support, encouragement, and perhaps a hug?
Here’s a link to an article that provides additional guidance on what not to say—
https://www.agingcare.com/articles/things-not-to-say-to-a-caregiver-152083.htm