Just read some posts today about speech and other disabilities have improved, like speech returning, I thought that once the part of the brain had been destroyed that was it for good. I have only been on this site for a short while as my wife was diagnosed about seven months ago. She lost her speech a year ago, now her legs are letting her down, she has had a few falls lately, she now has to have a walking frame to move around the house, and a commode for night time. So pleased to hear that perhaps there is still some hope.

7 Replies

  • It is so curious how differently the disease progresses in each person. My guy's speech started to go only long after his walking was unsafe. Still, every now and then, especially after a really good session with the speech therapist, he can talk pretty intelligibly for a couple of hours, although he has still a hard time thinking what to say. Left alone for a few minutes he has, even quite recently, managed to get up and walk, clinging to the walls.

    It seems sometimes, in some areas, that it's not the part of the brain that controls the functions that is diseased, but the part that communicates the commands from that part, so a long way round may get activated for a bit. And we get a respite.

    On we go. What else can we do?

    Love and peace, ec

  • Hi, there is nothing wrong with the brain or the body, with PSP. It's the neurons that are dying, or strangled by the protein strands called Tau. Messages sent from the brain to different parts of the body aren't getting through in the normal way. Sometimes, with training, exercise or adrenaline, the messages can be sent via different neurons that haven't been damaged yet. Well that's the way I understand PSP!!! Hence, if S is doing an exercise, he is capable of doing lots of different things, but as soon as the exercise stops, he reverts back to "normal". The speech neurons are definitely affected by adrenaline, the dog bought in a bird the other day, S was able to call me to sort out the "little" problem!!!

    I agree with you, it is totally confusing and very frustrating, when it seems that they will do something for others, but not for us. I am beginning to get use to this and am grateful to anyone, who can get S to take part in life! As it is very much a "use it or lose it!!!"

    Lots of love


  • You made me laugh again Heady, with your little problem! I did tell B that he spoke more clearly to professionals and that I would appreciate his doing the same for me. He was totally surprised and he did try. He has just asked me if there is any breakfast for him, when he has already eaten it. Ah well. two steps forward and three steps bsck,.! X

  • Hi

    This crazy clunky forum technology... I want BBS boards back!

    Linking back to my reply on your other post... Hope that's OK. that what this forum does for a link? ;)

    All the best

  • don`t know what you mean

  • Must be me being confused... I thought there were two threads very similar... my appologies.

  • I followed your link back and found your previous reply, and appreciate your explanation there. I don't know what BBS boards are, though. I'm not great with technology but find this site really user friendly. (Except for the way the cancel button sits so cozily below the one to submit.). Thanks for all the good information, always. Love, ec

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