Back from Gainesville, FL

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.

17 Replies

  • 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. 

  • Whew!  That must have been exhausting but sounds as if it was well worth the trip.  I had to have the difficult conversation with my husband earlier on, he doesn't talk now so I'm pleased I did, but it also spurred me on to have the same conversation about me with our sons.   I was only 62 at the time but folk can have strokes, accidents etc at any time and if I was left incapable of making decisions, my husband wouldn't be able to help. It wasn't a miserable conversation and we laughed a lot but they now know what I want, and don't want, to happen to me.

    I hope you have recovered from your long trip.

    Have a good day.


  • That's a good idea NannaB, I'm going to do the same thing with my children!

    Love Pat xx

  • I'm going to do the same with my sons, thanks for sharing. xx

  • Must have been extremely tiring but well worth the journey!

    Love....Pat xx

  • Well done and totally agree with doing the travel while she can.  

    Long journey but sounds as though well worth the outcome.  When doing a bit of touring in US when M was mobile and eating, used Best Western and Holiday Inn motels booked ahead to get adapted rooms very good.  Then coach tours with  Globus/Cosmos only snags were the long flights from UK but planning and contacting airports in advance helped M get around.

    Best wishes Tim

  • Thanks for the suggestions. Her vision is touring with an RV, so that we could include our Dad and the dog, Gracie. I'm going to look into the possibility of renting an RV and how we would be able to handle their limitations.

  • Sounds like an exhausting trip, but I'm sure you received enough information to make it worth the effort.   My wife can barely swallow her own saliva also.   She has had several swallow studies over the past few years (probably at least 5 or 6) and most all of them never revealed a lot of issues.   Her last one was over a year ago.   But I'm guessing if she had one now, it would show major problems.  If it didn't, then their test is flawed, because she can't drink or eat anything.   If she does, her nose immediately begins to run.   And I mean immediately.  Even with the thickened water.  So everything has to go in her through the feeding tube.   


  • How is she doing with the feeding tube? Is it less stressful now that she has one?

  • Absolutely!   Best thing ever invented.  She never appears to be hungry.  Weight stays the same.   Easy on the bowels.   And I've lost a ton of weight by not eating her leftovers!    Very simple outpatient procedure and insurance covers it, along with all of her feed (Jevity) and supplies.  Meal time used to take hours and she'd make a huge mess.   Now, I give her the feed during the evening while she sleeps, using a machine similar to an IV machine.  It slowly dispenses the feed overnight.   We have a twin-size hospital bed next to our queen bed.  This allows me to keep her head well elevated, in case she did aspirate.   Again, insurance covers the hospital bed too, as long as you have an order from a physician.   Kim received her PEG on 8/31/2014.  Without it, she would have surely passed by the end of 2014.   And I just could not watch her starve to death.   She is currently only 54 years old, way too young for this disease.


  • Oh wow! She is really too young to be going through this. I think she is the youngest I have heard of. It sounds like the PEG has really improved her standard living, not to mention yours. I never would have thought of feeding at night. How convenient. Thank you for your information. When was your wife diagnosed?

  • Diagnosed with PD in January 2010.  Diagnosed with PSP in March 2011.   Was showing symptoms back in 2008.  

  • thank god for our nhs!

  • How wonderful G_G that you found someone who took the time, were interested and educated in the ways of PSP .  Fla.  research center (ant remember name) is the brain donation center for curepsp.  I'm sure they have other centers . but this will be the one closest.  At any rate I am so glad you had this interaction.....good for you

    AVB....use time wisely it slips away....

  • Makes me feel tired just reading your post but sounds well worth the effort. Terrible that you have to make such an effort to get the information that should be readily available to you nearer home. I would love to holiday more but the thought of the responsibility puts me right off. We cruised Lat October and although we enjoyed it I did find it stressful. Think we will stick to the UK and find suitable self catering accomadation with the family. xx

  • Tired? It's taken me two days to recuperate. All I've been able to do is laundry and nap. Tomorrow I will have to get back to normal chaos. You know, catering sounds pretty good. 

    I've been checking into the traveling project and it's starting to sound rather work intensive. I may have to find some help to do this.

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