We Are a Parkinson’s Family

Note:  Hi. Please don’t express that you are sorry for us or that you knew someone with Parkinson’s once and “she lived for 30 years.” Awesome.  And also this disease is 1) an adventurous opportunity and 2) different for everyone.

We are now a Parkinson’s Family.  It started first for HH and then it occurred to me that we all have it in that we are all on the same team fighting it.  There’s equipment we have purchased.  There are classes we have signed up for.  There are newsletters we receive regularly.  There are symposia we attend.  There are new friends we have made.  We now know words like bradykinesia and dyskinesia.

I come from a cancer family so this has been new to me.  I used to keep up with words like Tamoxifen and AC protocols (Adriamycin and Cytoxin).  Now we are increasingly familiar with words like Carbidopa-Levodopa.  I’m obsessed with the Vagus Nerve.

I used to expect little pains to turn into sudden life-threatening metastasis.  Now we are in it for the long haul.  We are ready and we are not ready.

We love Shrinking and two of the creators/writers (Bill Lawrence and Brett Goldstein) are from Parkinson’s Families.  Harrison Ford’s character frequently uses a four-letter word to describe his experience with PD. That epithet might show up on an embroidered pillow in our home one day. 

Michael J. Fox plays both a real character and a hallucination in Shrinking.  Love that.  Sweet Alex Keaton is also likely to use that four letter word these days.  Actually Apple TV in general loves that four-letter word (e.g. Roy Kent) and I increasingly do too.  Don’t judge me.  We are a Parkinson’s Family and sometimes it’s the singular word that expresses our feelings best. 

As the familiar prayer goes: we don’t know what the future holds but we know God holds the future.  We are immeasurably blessed with health care options and countless friends.  We are moving back to the city where we raised our family. This will give us the opportunity to be closer to some of our adult kids, and that’s another gift. 

We are embracing the funny parts of being a PD family.  Our favorite examples at this moment:

Q: Hey, would you like to join us for _____?

A (from HH with a Debbie Downer voice):  I can’t. I have Parkinson’s.

A (from me with a Debbie Downer voice):  I can’t. HH has Parkinson’s.

As a Parkinson’s friend noted recently:  People ask me if I’m mad at God because our family has Parkinson’s.  I tell them the truth.  Life gave me Parkinson’s.  God helps us deal with it.

We are now a Parkinson’s Family and by grace we hope always to remember that God is the head of this family.