Good Evening!
My sister just got back from Shands Movement Disorders Clinic in Gainesville, FL. Even though we had been told that there was no cure, I still wanted to see the Dr.'s there, just because I had read about their all encompassing program with dr's, research, and therapists under one roof. Yes, the Dr. told us the same thing yesterday, but she took the time to explain PSP in great detail, took a thorough exam and history of my sister, and took the time to console her when my sister got upset. I was very impressed with her, Dr. Armstrong. Next, we had meetings and profiles done by a physical therapist, a speech therapist with a swallow test, and an occupational therapist. We only had physical therapy done for S after we insisted with her last doctor. Never have we seen a speech therapist, had a swallow test, or seen an occupational therapist. They all answered my many questions and concerns and gave multiple suggestions to help her with her many needs. Needless to say, I was very impressed and grateful for the time we spent there. Since we were coming from out of state, they scheduled all her appointments on Wednesday. It made for a very long day, but well worth it in my book. Tuesday, it took us 9 and a half hours with one and half hours stuck in gridlock on I75 outside of Atlanta. And it took us today 8 hours to come back. I'm getting too old to do that all in one day. Ha Ha! We're both exhausted with it being hardest on S. S and I had some difficult conversations about death, her last wants and wishes and the things she would like to do in the future while she still can. She wants to travel, so we will travel as long as she can. S. hasn't wanted to talk about these issues, so having this opportunity to have a heart to heart was also a blessing. All in all, I am very grateful we were able to make this trip and survive. I'm sorry to be so wordy, but I wanted to share. Good night all and have a blessed evening.
I am so grateful you had a good trip. Are the therapist there worth going back to visit them again? How did the swallow test go? Blessings to you both. Get some rest. XoXo
During her consultation, she started to choke on her own saliva and was coughing quite hard. The therapist was extremely concerned about the findings of what her swallow test would be. What is weird she passes her test with flying colors. She had some very minor aspiration, but nothing that would explain her choking fit earlier. She did show us the video of her test and explained the mechanics of how the muscles work and what transpires as the disease progresses. Very enlightening.