Page 1 of 1

Mabel's PSP Story

PostPosted: Tue Mar 22, 2016 2:48 pm
by mabelgraham
I was first diagnosed with PSP after 5 years of exploration with my neurologist at the movement disorder clinic in Edmonton. I've had PSP for 9 years and I now can look back on the things I couldn’t do. First of all, I noticed that I fell a lot. I also started to notice my increased inability to dance. I had trouble balancing on one foot and it gradually got worse so that I couldn’t dance at all. I use to swim and cycle every day, and I was no longer able to do those things either. I was no longer able to the crafts that required lots of detail and dexterity. My use of mechanical devices was out of the question. I felt really bad about this because some of the crafts took me a whole summer to complete. And finally, after falling down the stairs and falling in the garden, I finally went to the doctor and he sent me to the geriatrician in the movement disorder clinic in Edmonton, Alberta, Canada. I was seeing Dr. Richard Camicioli every six months for two years before he finally diagnosed me. He decided, due to my slow eye movement, that the diagnosis was Progressive Supraneuclear Palsy. Following my diagnoses he went on a sabbatical to Switzerland where he planned to study my illness more. However, it turned out that he knew more than they did and, as a result, was able to educate people there on a few things about the disease.

Re: Mabel's PSP Story

PostPosted: Tue Mar 22, 2016 10:53 pm
by Robin
Welcome to the group! Sorry you've had to join us here. When is your doctor back from sabbatical? Neat that he was able to educate others about PSP.

Re: Mabel's PSP Story

PostPosted: Wed Mar 23, 2016 11:17 pm
by eplowman
Hello, Mabel. And welcome to the forum.

May I ask how you discovered the forum? Did a family member or friend do an Internet search, and that led you here?

May I also ask if you have a relative or friend who is helping you to communicate with us? Wonderful, if that is so. That person has our admiration and respect. You are blessed to have such a person alongside who cares.

Or, are you able to communicate with us using the keyboard or keypad yourself (possibly aided by speech recognition software)? If so, wow, that is amazing for someone diagnosed with PSP nine years ago!

More later. But again, welcome!

ed p.

p.s. Update: Your young friend, a college student, informed us in a private message that she is writing under your name as part of a blogging project. We suggested that she include her identity whenever posting anything on your behalf. We've heard nothing further from you or her in March, April, or late May. I hope all is well with you.