This past weekend my husband and I attended the PSP conference in Flushing, New York, sponsored by Curepsp.
The first afternoon opened with a reading and book signing by Kathryn Leigh Scott, an actress who has a new book 'Dancing at the Savoy' coming out shortly - about her experience caring for her husband through his journey with PSP.
We then broke into patients and caregivers for support groups. It was the first opportunity my husband had had to meet other sufferers. Some were newly diagnosed, others had progressed further than him. There were about 10 in his group. Communication was obviously difficult for some, but wonderful for the all to find others walking the same walk. (Not literally!)
The support group for care givers was much larger as many with PSP were not able to participate and some had more than one family member with them. It was great to be able to talk face to face with so many in the same boat and share resources and ideas and frustrations.
The next day was more informational and research based with a lot of focus on current studies. The one really positive note I came away with was that scientists and researchers believe that understanding PSP could be the key to unlocking many neurological diseases, including Alzheimer's, so more importance will start being given to these studies. They seem very willing to include as many as they can who fit into the perameters.
Everyone we met was truly delightful, so I believe that PSP only occurs in really nice families!
There were also some vendors selling wonderfully helpful items: pads and underwear for incontinence, easy-on shoes with the whole heel opening up and clothing with zippers in every seam.
It was a 5 hour drive each way and of course I'm the only driver, but was well worth it. Thank goodness for gps!