Parkinson’s: How Are You Doing Conundrum

Guest Post by Jim Freshour

 “How are you doing?” we are frequently asked.  Sometimes we feel tempted to answer with a tinge of cynicism, but we don’t.  Rather our response is too often than not, “Oh, fine thank you.”  Not being very honest, are we?  Sometime ago a friend and professional in the field of physical therapy composed a letter that I believe could go a long way in clearing the air of what we really want enquirers to know.  Below is an example of the letter: If you find the letter helpful, you are welcome ot make a copy and send it to your friends and family.

Dear friends and family members,

Here we are with summer over half-way gone and the next season lurking around the corner.  I suspect everyone and anyone who receives this letter already knows of the challenges I face dealing with Parkinson’s Disease.  It manifests itself in a number of different ways, all of which are associated with neurological complications.

That being said, I want to invite you to be a part of a greater community of persons I would identify as my “care team.”  No oaths to take or fees to pay to be a part of my “team.”  (Oh yes, and we don’t have uniforms!)

All I ask is that you are aware of my condition and help me with navigating some of the obstacles.  For example, there are still outdoor events you and I may attend before the summer is concluded i.e. family reunions, outdoor concerts, etc.  I can always use your help negotiating my way to a place to sit down and eat, while balancing a flimsy paper plate of food in one hand and a beverage in the other.  You probably have noticed I don’t talk as loudly as before and it is getting increasingly difficult for me to enter group conservations.  What could you do to help me out in a situation like that?  If it’s an extended event, you may need to help me find some space to either sit back and take it all in, or for that matter, just to take a nap.  Offer me your arm or hand if I need to cross a grassy expanse that once was not a problem for me, but now can cause me to “freeze in place.”

These are just a few ideas.  I’m sure you may have some others as well.  The point is I want to be more honest with you about my living with Parkinson’s instead masquerading it.  Thank you for taking the time to read this letter and to think about being a part of my “team.”

Appreciatively Yours