Early this summer I shared a poetry reading with a colleague and mentor, Pat Riviere Seel at the local library. We had a few sweet attendees, including my husband, Patrick. I had written a new love poem for him, and as I read it, I looked out at his face. It was completely blank, a strange sort of stare. I kept reading, trying not to take his expression to heart, but it wasn't until his diagnosis not long afterward, that I learned the effect is called "Parkinson's Mask."
We had known that something was wrong for a long time. Patrick's increasing muscular weakness, his fumbling over simple tasks, his depression, what did it mean? We feared it was dementia, so when the neurologist diagnosed him in July we were not unhappy.
We drove directly to a Dunkin' Donuts and talked over coffee and honey dipped crullers, holding hands I remember saying "At least I am not going to lose you. Whatever happens, you will still be all there. You will be you." I have watched my Aunt Margaret slip away from me because of dementia; she doesn't know who I am any more, and it has broken my heart (as many of you with similar experiences will understand).
As months have gone by we have had time to make room for Parkinson's in our lives. We have been learning as the symptoms increase. Our lives are going to change. I recently reached out for help with You Caring. If you would like to lend a hand, please forward the link PATRICK'S YOU CARING WEBSITE to a few of your friends, particularly musicians who know Pat and me, who might be interested.