Leslie Riopel

The doctor uttered the words, “He has PSP”, and those words would forever change our lives. What in the world is PSP? We left the doctor’s office in shock. We had waited years for a diagnosis, now what? My father, who is now nearing the end of his journey with PSP, is not able to enjoy his retirement anymore.

My mother tells me she misses the little things: the secret looks, the touch of his hand, a hug, spending time together, the connection in other words. My mother has documented parts of her journey on a personal blog:
http://livingwithpsp-deej.blogspot.com/

My father is a graduate of the University of Florida in Gainesville, with a B.S. in Electrical Engineering. He is kind, intelligent, loved to travel, and spent four years in the Navy during the Korean War, but was first and foremost a family man. After the balance problems started, he began to do a little shuffle with his feet – we would ask him what this new little dance was and he would simply say, “I don’t know”. The slow downward spiral had begun; we just didn’t know it.

It is important that you don’t give up hope, because sometimes hope is all you have. Diseases like PSP are not well known, and often misdiagnosed. The most frustrating part for us is the slow decline of everything my father held dear. Every day is a struggle, and this disease has devastated my family, mentally, spiritually and financially. We never expected to have to pay for months in a care center, at $6,000 – $10,000 per month, and there doesn’t seem to be anyone out there who can help, and that’s sad. My father spent four years serving his country, but all we get is the run around with the VA. Where is all the help I wonder? My wish is to make this disease better known, so my father won’t have suffered in vain. My mother told me:

“My husband is trying so hard to try and make things easier for me, but it is a losing battle. Everyday we see a change. He is now losing the use of his right hand and arm and his speech is getting hard to understand. But I love him with all my heart, and will be there for him always, no matter what.”

We are grateful for every little moment we have. That is the blessing. I can still tell my father I love him, even if he has trouble telling me back. My parents were able to celebrate their 55th anniversary recently, although not in the way they expected. To put it in my mother’s words:

“Happy 55th Anniversary to my husband Lyle, who has been in the care center for the past 6 months. We made it this far even though we are not doing what we intended to. I love you – Donna.”

For now, it will have to be enough.