My Nonprofit Reviews

Cure PSP.org

My husband’s diagnosis of PSP came as a terrible shock.
For a number of years he had experienced the onset with vision problems and falls but neurologists were unable to make a specific diagnosis. Instead, we were told all the illnesses he did not have.

I went to my usual source, the computer, to learn more and “Cure PSP.org” popped up. I followed the link and, though horrified to learn the specifics, I was better able to plan and deal as best I could.

The site enabled me to copy and present materials to “educate” the professionals who could help delay or alleviate his symptoms. It told me of Dr. Lawrence Golbe, who made the final diagnosis. It tuned me into the webinar hosted by Janet Edmunson where I learned of many things such as the assistance of the V.A. and Hospice. It notified me of support groups.

We lived my husband’s last years as best we could. My husband was a fighter and wanted to live and do. We attended concerts and theatrical productions, audited college courses, and dined out with our friends and family. He maintained a business relationship until his last month.

Without the assistance of the organization and the information it disseminates, people who have to deal with PSP will find little to help them. I will be forever grateful for its existence.