10/24/11

Noticing now that Bernie’s eyes are starting to close again on their own. Not as often as before the injections but it is getting there. I started to notice about 2 weeks ago that he was prying them open with his fingers again, and lately he has been doing it more and more. We are scheduled to go back to the doctor early December but just received notice from the insurance company that they have denied further Botox treatments as they deem it experiment. I am going to fight this and put in a grievance just hoping that they change their refusal to an approval.

Thoughts

10/19/11

Well we are done with 5 visits of PT and the insurance company won’t approve anymore, at this point I don’t think that matters. We have learned a few things to do at home and I believe as well as the therapist believes that PT is what you do every day at home. Bernie needs to slow down and think before he moves and he is finding that difficult. The problem with PSP is that your brain is telling your body what to do but your body doesn’t get the signal fast enough anymore or your body can’t do the task anymore. For instance when your brain is telling your feet that you are going to walk but your foot/feet won’t/can’t move but you don’t know your feet are frozen, your upper body leans forward as it would when you take a step but since your feet are not following you end up falling, and when you are falling you don’t have the coordination or reflex to put your hands out so you land hard. Standing up is also an issue, gets harder and harder to pull yourself up so you have to really try to throw your weight behind it and when you finally rise up your doing so at a faster pace and tend to fall forward with the momentum. Getting in and out of the car is difficult, moving your legs which are stiff and sore and having your balance compromised makes even that a difficult task. Everything is so much harder to do with PSP; it really steals your life in that sense. Talking is also difficult as your voice just won’t work anymore, words are slurred and mumbled and the voice volume is barely existent, so now it is just easier to not speak at all then to be frustrated when trying to speak. These are things as a caregiver you will see happening to your loved one, yet you need to stay strong and positive, for both of you.

PT

10/3/11

Bernie has started PT again; he has gone through several series of PT over the last 5 years. For the most part I don’t think either one of us felt it was doing much good. In the beginning he would drive himself back and forth but as his condition progressed and he was no longer able to drive I would take him and that is when I was able to see what was going on. The series of exercises they were having him do I felt were not beneficial to him, and although I am not an expert and have no degree I don’t think sitting on a large ball and lifting your leg and reaching for your toes is a particularly a safe position for people with balance issues. After speaking with the therapist and trying to explain what his needs were she told me she had experience with treating people with his condition (but I don’t believe her). Recently the PA at the movement disorder center recommended PT again telling us it would be helpful with the increased falling Bernie was experiencing. I told him my concerns with going again and he told me I would have to look for someone with specific knowledge on PSP or Parkinsonism. After three weeks of looking and phone calls I settled on Sunnyview Rehabilitation Center in Schenectady, and both Bernie and I are please. We met with a therapist for an evaluation and I had brought literature on PSP and what specifically was happening in people with PSP. After the evaluation we set up a series of appointments for PT, our first one being last Friday. On our first visit the first thing the therapist said to me was she read my pamphlets and what had occurred to her most was that PSP caused backwards falls…..and asked if anyone had ever tried lifts in Bernie’s shoes!! No one had, so she went and got the lifts and put them in his sneakers and Bernie said he noticed a difference as soon as he stood up…so if you have not tried them please do……He says he feels more stable now, not so wobbly like he’s constantly going to go over backwards. This is the difference between therapist who truly want to help and research conditions before starting. She then work mainly with his balance issues, footwork and walking, it was a eye opening appointment and I can’t wait to see what she has in store next.