Progressive Supranuclear Palsy, or PSP

Cure PSP Walk, 2011

We all have things going on in life that we keep to ourselves, things we’re reluctant to share, things we’d rather not have you know.    But today, I’m going to share something about what’s been going on in my life, and why I sometimes skitter a little sideways when you ask me too closely about what or where I've been painting.

It’s hard to write about it.   I’ve been doing my best to act normal and keep working and put up a good front, but it has affected my life profoundly for the last four years.  I’ve tried to keep it to myself, but sometimes unload on people close to me or worse, those not so close.

I’m forgetting things, I’m losing words, I sometimes have trouble painting, I'm missing deadlines, I'm not able to go out into the Everglades as much, and I’m more sporadic than I’d like in the posting of this blog. Sometimes I’m not where I say I will be because of last minute crisis. But this isn't about me.

Today we're speaking out, in the spirit of full disclosure rather than a pity party.  My husband, once active and athletic, the love of my life, ex-cop, photographer, sculptor, and person extraordinaire, has developed a disease called PSP, or Progressive Supranuclear Palsy. 

PSP is a degenerative disease of the brain, in the family of Parkinson’s and Alzheimer’s, but with its own set of specific symptoms.  PSP severely affects balance, eyesight, voice and throat, among a plethora of other unspeakable unpleasantries.  Movement and thought and response are slowed, while leaving awareness basically intact.  There is no cure.

We're speaking out because this disease is relatively unknown, and we want to bring attention to it.  It's often undiagnosed, or miss-diagnosed.  Symptoms often occur years before diagnosis, and diagnosis is confirmed only by brain autopsy.  This disease traps people within a body that won't function properly and with little ability to communicate.  People with PSP usually die from a fall, choking, or pneumonia.  Some people  survive for years, while others decline more quickly.

Tomorrow, Saturday, March 31, at 11 a.m there will be a fundraising walk for Cure PSP around Mackle Park lake on Marco Island.  Look under "Events" for more information. 

I will be there, with Bob if he’s able, and we will walk (well, he'll sit and I'll push) because we want to support research and awareness of this dreadful disease.  In support, some of our friends will be joining us.  Look for us there if you'd like to come along.  You don't have to pre-register, but there is a requested donation of $20 and lots of great prizes to win with your raffle tickets.