It was about time that someone asked.
Everyone always asked my husband, Tom how I was doing, but seldom asked how he was managing. Finally, someone asked him that inevitable question, “What is it like for you to live with Kate and Parkinson’s Disease (PD) for the past eleven past years?”
We attended the screening of “Shaken,” a documentary about PD on Tuesday in Boulder. For the first time ever, Tom and I were on a panel with people living with PD and their spouses, children, and parents.
I was a little nervous about what Tom might say about living with me and PD. I was worried that he might have years of resentment built up that might come spewing out in front of these Boulder strangers.
No need to worry. Tom learned about compassion early in life when sharing a bedroom with a developmentally disabled brother while growing up. He always has been a caregiver.
Tom’s frustrations were similar to mine. He hated the unpredictability of this awful disease, as one minute I seemed to be functioning well and we were going to karaoke, while the next, I moved slowly, slurred my words and could hardly talk much less sing.
Tom mourned the loss of our pre-PD levels of activity with week long bicycle trips in California, Vermont and Wisconsin and running ten-milers in the Canadian Rockies and along the California coast.
Tom expressed his pride that I continued working as coordinator of hospital volunteers until the bittersweet end, and that I was carving out a new life for myself being on permanent medical disability.
I am not the same person that Tom married 32 years ago. PD has impacted me, Tom and our relationship.
We were touched that someone had the courage to ask.