Many of you know my Dad. I should say many of you are lucky enough to know my Dad. If I had to describe him the first two things that come to mind are smart as hell and strong in both mind and body. My Dad has always been my go to guy for any question (other than cooking of course!). He has always been there to guide me along the way and I truly believe that I am the person I am today because of that guidance.
My kids have been lucky to know my Dad before he was robbed. We spent many winters up at my parents Vermont house where my kids will remember building Legos with their Grandpa. Playing all too long games of Monopoly and any other game they conned him into playing. They will remember his infectious laugh and his warped sense of humor! And they will remember him reading, always reading.
Sadly they will also remember him falling…like a 6′ tall tree with no arms and no reflexes…just falling. They will remember him losing his ability to walk. They will remember him losing his ability to speak clearly and I fear his ability to speak at all soon. They will remember seeing him struggle to eat. And they will remember him no longer being able to read.
I do believe that despite all this my kids and I will still remember my dad for who he is, that smart, strong man. Because while this disease is robbing him of his physical abilities his brain is still sharp. He is completely aware that his body and his brain are betraying him and there is not a damned thing he can do about it. And that just sucks.
My Dad was robbed. That’s what this crazy disease does, it robs you of who you are. It literally took doctor after doctor, year after year before he was finally diagnosed with Progressive Supranuclear Palsy (PSP). What is that? I’m sure that’s what you’re thinking because who has ever even heard of such a thing. I know that I hadn’t and apparently neither had a whole bunch of doctors. PSP is a neurodegenerative disease. It is in the Parkinson family and is very often misdiagnosed as Parkinson’s in the beginning. The unfortunate thing is that PSP does not respond to the medications for Parkinson’s. In fact there are no medications for PSP right now and there is no cure. There is just time and sadly not a lot of time.
My Dad has decided he will donate his brain to research…it’s what he can do to prevent and change the future of this disease. Me all I can do is a whole lot of praying and do what I can to raise awareness and money to help find a cure for this crazy disease. I know I have asked year after year for support for one of my causes but his one is the most important yet. I ask you to help end the suffering for the next family that receives this horrible diagnosis. Please consider donating to Cure PSP below. I truly appreciate your continued support and hope that someday there will be a cure.
To join Sue Walsh’s Parkinson Unity Walk Team Register Here