I would like to know what stage of PSP I am in. My doctor doesn't say anything about that. I diagnosed with PSP three years but have had

symptoms for nine years. My speech has gotten really hard to understand. I can't write and I can barely walk. Walking slow, balance is poor, lots of falls. Use wheelchair most of the time. I choke on liquids, use ThickIt. I don't have a neurologist. I live in central Ohio. What do you people with lots of experience with PSP think?

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  • patandindia well mate I think you ought to start getting yourself sorted out mate get yourself a neurologist by going to a dr and getting a referral to see one you did not say whether you were going tom a balance group or speech pathologist because I would give them a try I would not worry about what stage your in\ I take it day by day and enjoy every day as it comes

    along otherwise it becomes to depressing anyway mate take care look after yourself peter jones queensland Australia psp sufferer

  • Hi patandlinda

    Peter Jones has given some good advice. My wife (approx. 5-6 years into PSP) has similar symptoms (but I stop her from falling!!!). Staging PSP is not a very fruitful exercise because of the complexity of the disease and different severity of symptoms in individuals. A rating scale for the progression of PSP has been formulated (by Dr Golbe) which some find useful, but as we often say on this forum, you might be in the early stages and fall on your head and die, so it's best to address issues as they arise and not think too far in the future (except for making wise provisions - as per a "living will - advanced health directive" and "power of attorney" etc).

    A neurologist could be useful, but as you probably know, there are no medications to stop the disease progression, and he/she would only treat the symptoms (some neurologists are cautious about giving certain medications, even for symptoms, because the side effects mimic/exacerbate those PSP symptoms).

    I do wish you all the best and continue to develop a good support group of family, friends and understanding doctors (perhaps easier said than done with respect to the medical profession).

    T.

  • From diagnosis, my husband lasted one day short of three years.

    He could not move any limbs, turn his head, read, talk, smile, hug, kiss, hold anything in his hands, nor barely eat. He could not chew. Even drinking was a problem.

    He was like that for approx 6 months and then one day he could not open his mouth.

    it was locked closed so he was put on the Liverpool Care Pathway.

  • so sorry/awful to hear this. In my wifes case, walking has gone over a 9month period, swallowing poorish, talking still good, reasoning a bit iffy. Tremor. lots of constipation/incontinence. Lots of pneumonia infections. Did you have any of this, before the really awful cessation of muscle activity occurred. I ask, because are we heading this way. My wife has had symptoms for about 3 y, but a diagnosis for only 2 months????

    Any advice gratefully received.

  • Hi magzelliott. What is the Liverpool Care Path. My husband was diagnosed with PSP in November last year but has had symptoms for a good 2-3 years before this which we thought were due to a brain aneursm. He continued to decline after the op and it was not until November last year when he was admitted to hospital unwell that he was diagnosed. He has very poor mobility, poor speech and swallow and poor eyesight. His jaw is almost clamped shut which the Drs thought may have been a side effect of one of the Parkinson's drugs. They discontinued these but no improvement. I can just about get soft food into him using the end of a tea spoon which is very slow and tiring for him.

    He initially refused to have a PEG but now I don't think they would be able to get a flexible scope through the very narrow gap in his teeth.

  • hi pat and linda

    you def need to get a neuro(movement disorders)

    thats all 4 now folks

    lol jill

    :-)

  • PSP STAGES – MY THOUGHTS

    I've posted this several times on this site but I'll post it again because I think it is worth knowing. PSP is not a one-size-fits-all disease. Each patient is different in how quickly or slowly the disease progresses. Each patient is different in the symptoms they have. Each patient can have the same symptom as another patient but to a lesser or greater degree. As far as "stages" are concerned they just don't matter at all. There are supposedly four "stages". However, your loved one could have a bad fall with brain damage or broken hip and die in any "stage". They could aspirate, get pneumonia and die in any "stage", even "stage 1". They could get a serious UTI that causes hospitalization and death. Like all of us there are no guarantees in this life. THINKING you know the "stage" can be very disappointing if you are thinking "stage 4" and the person lives another three years. As caregiver and loved one you'd be better spending your time on care and love. There are no predictable certainties in PSP! Things might be bad and then the loved one rallies and gets better for months. There are some "level" spots (good or bad) often in PSP for some patients. Bottom line it is an unpredictable disease with an unpredictable length of life. My dear wife and I took one day at a time literally not thinking about what is ahead, what "stage" she was in, what symptom might be next, etc. Worry about "stages" robs your peace for today and doesn't change what comes tomorrow. IMHO Jimbo

  • So well written Jimbo. Wise words, with PSP it really is take each day as it comes and each challenge as it comes, for sure there are plenty of them.

    Peter3.

  • Get thee to a neurologist. It is worth the hassle to know that someone is monitoring your symptoms. With that said I have found neurologist as a group to be..well..not very cuddly. But it is worth it everyso often to find out if anything has changed and especially medication issues. Good Luck and be well,

    Jill

  • Get thee to a neurologist. It is worth the hassle to know that someone is monitoring your symptoms. With that said I have found neurologist as a group to be..well..not very cuddly. But it is worth it everyso often to find out if anything has changed and especially medication issues. Good Luck and be well,

    Jill

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