abirke, I think it was you who asked me when symptoms started. I thought about when he started shuffling and realized it was in Sept. Went to one neurologist, who was an absolute idiot, watched him take 5 steps and said he has Parkinson's. Gave me a script, don't even remember what it was for, since I threw it in the garbage. Memory issues as well. Took him to another neurologist, who we have used for years and he said he really didn't know what was wrong with him. Those 2 issues were the only ones he had back then. Since he has heart problems as well, around that time he developed AF, what month I don't remember. The med he was given did not work for that and his cardiologist said hospital, came out with more physical issues which I blamed on the new med he had put him on. He was quite upset with me. Since then it has been a roller coaster. OK, today he is 78 years old and will take things day by day. Will be going to our daughter's house later on. He requested Tacos for his birthday dinner, which she makes very well. I feel like ranting and raving but will try to keep myself together.

28 Replies

  • I remember the first Neurologist. oh he's just getting old....he was 53...I thought he was having ministrokes and they did nothing to investigate. We finally went to an internist who pushed us off onto another Neuro / But at least this guy listened to me. Assessed him and agreed with my fears of psp. Our GP dropped us because he didnt' do our insurance....that was fine our new gp is wonderful. She seems to know what psp is and has been helping him thru sleep and pee issues.....

    It's amazing , we have so much trust in the Drs who can be so ....lackadaisical or ignorant.....We have to arm ourselves with information thats my thought of the day...arm yourself with information.....journal his progress on each drug or just when there might be on a plateau or a slide...I don't know im learning myself.... What is AF?

    Have a good day-stay strong


  • abirke, Atrial fibrillation, another condition to add to his other heart issues. An irregular, often rapid heart rate that commonly causes poor blood flow. He was very tired yesterday but is stronger today. Day by day, and today is his birthday. He is 78. Audrey

  • awe geez, isn't psp enough? at any rate HAPPY BIRTHDAY DON!!!!!!!

    tacos sound yummy!!!


  • He enjoyed his birthday dinner and TY abirke!

  • :)


  • good on yer Audrey

    i wish don a happy birthday and one or two more to get to his 80th !

    i am looking towards my 70TH next year and if i get to that and am still at home i shall have done well

    Lol jill to you and DON


  • jillannf6, TY and I am sure you and he will still be around and home for more than 2 years. Positive thinking!


  • In December after my husband kept falling and couldn't walk, I called the ambulance. I thought he was having a stroke. The paramedics didn't think he was. They took him to ER, he was admitted, they did all the scans, and told me he had a stroke. When released after a few days, hospital told us to follow-up with a neurologist and his GP. Took two months to get in to the neurologist at which time he immediately said it was not a stroke. He could tell from the scans and from our visit that he had PSP. No wonder there was no improvement. No wonder he seemed to be getting worse.

    He has had several more falls but at this point he still gets around in the house. However all the other symptoms are progressing. Coughing and choking while eating, dementia, voice issues, etc. What I don't understand is why one day he seems so much more capable and the next days are downhill. This just increases his deniability issues. I feel so bad for him.

    Also, back to the doctors, Last month at the GP, I had to tell the doctor that my husband was not recovering from a stroke, that the neurologist diagnosed PSP. The GP said "Oh, I guess I need to read the notes from the neurologist." Exasperation doesn't even cover it.

    The best I can figure is my husband has had this horrid disease at least since 2009. I remember unexplained falls and other things from then, possibly before that too.

  • jmhk, the Dtrs are impossible. Not like the ones when we were young. I spend my days wondering why we had to go to 5 neurologists to get this diagnosis and am still not 100% sure. I want to take him to the Mayo Clinic, if I can get an apt. There reputation is the best. We will see what happens. Don has good days and then bad ones. Think I would find a new GP if I were you.

  • We went to the Mayo Clinic in Jacksonville, Fla. I was surprised when they called me back about a week after I had tried to make him an appointment. We went through so many different test for about 4 doctors. They did diagnose him with PSP. That was about 2 years ago. They wanted us to come once a year, but I felt we needed to see a neurologist more often than that. So, I am trying to find a good one closer to home. The Mayo Clinic is 4-5 hours away. I do not regret taking him there at first. I have heard bad stories from small town neurologists.

  • mthteach, I am going to try and get him an apt but it is about 2 1/2 hours away from us. Using a local neurologist here in our town who seems to be up on PSP. I have put him back on coconut oil for memory which does help. Asked her first if it would ok and she said yes. Are you in Fl?

  • I am in Dothan, Al. We drove all the way to Jacksonville, Fla

  • Long ride, I would ask your GP who he would use if he needed one. That is what I do.

  • The one neurologist doctor in our area is bad. We will not go back to him.

  • That is a shame mthteach. Tried to get an apt for my other half at Mayo here in Fl. They are booked through Sept and won't even call me if there is a cancellation. No waiting list or anything, just told me to call back later on. When I haven't a clue.

  • Actually there aren't any Dtrs I trust at all.

  • OMG, do you not just feel like you want your money back? What would that Dr. say if they were talking to a dr about their family member? How flippant of that GP! My husband seems to be about the same as your husband. the Speech therapist told my husband to minimize choking take short , quick sips from an open glass...not a bottle as water rushes in without much control B has Good days bad days , but right now good days.....Curepsp.com says that this WILL happen and to embrace the good days and be ready for the bad......They should warn us about the ignorance of the professionals...actually I think they do....It's amazing as we start analyzing incidences, how much we can hang behavior on psp! It doesn't really change anything today is the only day we can worry about ...but it does maybe answer questions....

    May you have peaceful days as your husband and you go through this thing together


  • Don was warned about slowly eating, since he tends to gulp and eat quickly, smaller pieces

  • Thank you so much, abirke. You mentioned speech therapist. Neither of D's doctors have even suggested this. Of course, that shouldn't surprise me as far as this GP goes. Would that come from his GP or his neurologist? Maybe it's because his speech issues are still so sporadic. He's not always slurring when we are at the doctor.

  • Whoever you think would order it for him jmhk. Our GP usually does the paper work for therapies, pt, ot.

  • At this point, Auddonz, I'm not sure D would go to any therapists. It's a chore just getting him to the GP and neurologist. I'm wondering if he has to be further along in the disease before therapies are recommended or beneficial.

  • Doesn't hurt to try jmhk.

  • We have seen a speech therapist for weeks. My spouse will not practice the exercises given by her. One thing that we did do that has helped is to use a thickener in his drinks. This is the web page with the kind we use. I have been told that is is the best kind to use.


    or you can type in simply thick into the search box, and BettyMills web page will open. We do not use a powder form of the thickener.

  • Mthteach, He seems to be ok now, not needing, speech therapist. When he was in the rehab they were using the thickener in his drinks. As far as doing his other exercises, pt and ot, I have to remind him sometimes he does them, when he feels like it. He is very tired though and personally I think it is from his meds.

  • Our neurologist prescribed Speech (saw 2x) and physical therapy through Medicaide and Disability agency who wanted to make assessments of B's needs. received about 45 visits from the physical therapist (PT). speech actually pawned off coughing issues onto PT. He did not know what to do. So I told B to explosively say "pah" while pushing on his stomach....It's all I know what to do. He seems to know how to cough when he has a full mouth! hahahaha no, I am thankful for that. even if I do need a shower after! haha

    Funny (?) thing B was same way much more articulate to others than with me. I think he tried harder to make a good impression.... But it was just as hard in comparison to the multiple times he would have to repeat his words to me!

    Today I am limping as B fell onto me when I was assisting him on his midnight pee run....I can walk but cannot push up on my leg its my sciatic!!! oh well at least the toilet isnt in a milion pieces!

    Yah the things that make a good day good pads and an intact toilet hahahaha


  • abirke, Speech therapists are a entirely different speciality. WTH are they thinking. Glad to know your toilet is intact but your back is another issue altogether. I have a bad back and when I do to much I suffer :(

  • indeed Auddonz,

    x-rays show I have a pretty good back except for one lumbar in my tail bone is almost resting bone on bone . not quite that bad and chiropractor seems certain we can stretch back in place...It's my knee that is in the most pain but top of sciatic to the sole of my foot is throbbing.

    I was telling my son that PSP is like a seesaw. You walk up one side, and as you progress to the other side, for a wonderful moment, you are at an even balance, and then you are over half way to the other side and you begin that downward descent! This may be where we are at since his falls are on the rise last few days.....It was good while it lasted....


  • Very true abirke

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