Ed. note — This piece was written and submitted to local media and the Diane Rehm Show by Anne and Paul Bonaparte-Krogh. We are grateful for their permission to repost it.
The media was doing ok with Robin Williams’ chronic clinical depression. Everyone has been providing the suicide hotline number and repeating the truth that depression can get better and life can feel good again. Now, news of his Parkinson’s.
A similar media message needs to be loud and clear to people diagnosed or who will be diagnosed with PD: it’s presently true that you won’t recover from PD. But, you WILL still find things to enjoy in life. All that makes life worth living is not behind you.
We know. Paul was diagnosed with PD in 2009. The less well-know cognitive impairments that can come with PD forced him to stop working at the end of 2013. His mother had advanced PD and we were not naive about the implications. Like any other major life blow, there are days you shoulder this burden, straighten with determination and go forward, and days, especially as the going gets tougher, when it feels hard: hard to the person with the PD, and hard to their spouse, children and network of support. We know our road will get more difficult yet.
We hazard the guess that few people have the relentlessly upbeat public attitude of Michael J. Fox, who is an admired inspiration and fierce advocate. But even those without his resources, his disposition, and without his form of PD (different for everyone) should know that PD is not the end to everything you love, everything that gives you pleasure.
We understand clinical depression and thoughts of suicide as Anne (and, consequently, her family and friends), went through both. Robin Williams brought so much light to our lives. It rocks and deeply saddens us that he could no longer see light. If it was the PD diagnosis that was the straw that broke the camel’s back for him, don’t let his mindset determine yours. With a PD diagnosis and progression, with depression, there ARE still going be glad times, satisfactions, and laughter. There are resources to tap for PD as well as depression.Try watching some old Mork and Mindy episodes or The Birdcage; these have brightened our days.
Tough things happen to all too many, all too often in life. Take them one day at a time.
Anne and Paul Bonaparte-Krogh