June 7, 2010 - A year has passed
Today is one year since I started to walk from Kentucky to New Jersey to raise awareness about PSP. This one year “anniversary” has been on my mind quite some time. I’m so glad I was able to start and complete this walk and glad I was able to shine a little light about this disease. I hate that it had to be done and there is so much more to do.
But life goes on, and the normal, daily routine returns. One day I’m walking 20 miles and the next I’m sitting for 8 hours in professional development. All the while, the disease continues its insidious progression.
That leads to the awkward question, “how is your mother?” Well she’s worse but holding her own. It’s not what I want to say or what people want to hear but it’s true. With this disease you never get to say, “Oh, she’s doing much better. Thanks for asking.”
So if I ask about someone I met last year, we have to get past that unsaid question, “how much worse is your loved one?” People do ask and make comments about the walk, and a few ask me again, “what’s that disease?” I also hear from a few new people on the website.
At Christmas I heard from Fred and Nancy in Ohio, and Deb in Maryland. I was able to talk to Kay in South Carolina just recently. Some of the folks I met last year are on Facebook and we keep up that way. A few folks I haven’t heard anything from and I want to write and ask how things are going.
I have been able to share a perspective with these people that few others understand. They know what PSP is like; they are living testaments of courage and strength. I will never forget these wonderful people. The support I feel from others who have been or are going through this disease is immense. I only hope I can be as supportive to them.
One day , perhaps, we will discuss PSP in the past tense, as a disease that no longer exists. I sure hope so. Because for those suffering from PSP, and their families, the situation is purely unspeakable. We can only retreat into our routines to find a safe harbor of sanity, and yet, we know this is only temporary. The next stages cannot be worse, and yet, we are surprised when they are.
For now as my dad says, we just take it “one day at a time.”
A walk from Kentucky to New Jersey to raise awareness for a devastating brain disease
Progressive Supranuclear Palsy, or PSP, is a devastating brain disease. It ravages the nerve cells that control walking, balance, vision, speech and swallowing. There is no known cause, treatment or cure.
My mother, Allene, has it.
Since her diagnosis, I have talked to many people about PSP, and have found that general awareness of this degenerative disease is low. I decided I should dramatize the need for PSP awareness and research by walking from my home in Louisville, Kentucky, to my mother’s home in South New Jersey during the summer of 2009.
That’s what this web site is all about. You can follow my progress, arrange a ceremonial walk with me, help with my trip and learn more about what you can do to fight this difficult disease.
Please join the cause. Not just for my mother and me, but for all the others who have been touched by PSP. | 
