My Nonprofit Reviews

Seeking a Treatment for Progressive Nuclear Palsy (PSP)

PSP stole my husband from me in 2006. About 3 years before he died we both realized something was very wrong. Bob fell unexpectedly, had double vision, and definite signs of cognitive loss. His right leg did not work well for him. We sought medical help but received only a misdiagnosis- or Alzheimer's and then to explain the physical symptoms- myesthenia gravis- a very unlikely combination of illness to appear at the same time. It seemed to me as though a label was slapped on my husband and we were sent away. However an ophthalmologist who was mystified by Bob's symptoms suggested we rule out PSP. I got onto the Cure PSP website to study the symptoms and then realized they fit Bob's condition. We found our way to a university Neurology Institute where we got the correct diagnosis. But I knew the doctor there was struggling to tell us the facts. Cure PSP gave is the information we needed to manage this fatal disease as well as possible and let us know what to expect. We attended a free conference for patients and their families. So we could get on with the remaining time we had together and make it good. Every year I will give in Bob's memory as long as I live. We don't know if it is inherited but I want a cure to be found for all those who are following us through life.