PSP

my husband was diagnosed with PSP and is cuurently in a care facility - presently when we visit him he he always in a deep sleep some days and seems to be rather rigid. Originally he was given Sinet I believe a parkinson drug which has now been withdrawn and just this week they have given him muscle relax

medication - how long is this disease and what can I expect - it is devasting to see him totally not eith us. Thanks

4 Replies

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  • Please refer to Curepsp.org for very good information. They will even send a packet so that you can give it to your gps or even your nuerologists.

  • Hi I always thought the lifespan was 7-10 years how long has your husband had PSP? My partner has it now for 9 years although he is still at home and manages to watch TV etc. It is very sad watching them decline wondering how its all going to end.

    Best wishes

  • For life expectancy PSPA documents suggest average 6-8 yr after diagnosis but a lot of patients diagnosed very late so average could be skewed. If you read the document attached to mndovrmnky's post "knowledge" a bit heavy but it suggests that there may be 2 variants of PSP with different life expectancies either side of the PSPA norm.

    Margaret was on sinemet for 3 yr it is a Parkinson drug increasing the levodopa in the system which helps with mood and limb control. M developed a reaction to a high dose but on withdrawal it was noticeable her apathy and sleepiness got worse. We reintroduced sinemet at a lower dose apathy lifted and less sleepy. Since PEG feeding sinemet withdrawn as not crushable and replaced with another levodopa drug Madopar. Margaret was diagnosed 3 yr ago but had symptoms for over 5. Her condition has declined in a series of steps but PSP is a cruel and unpredictable condition affecting everyone differently. It is like a long farewell and often without a clear end.

    We are told by the neurologist that PSP does not kill but it contributes to the end allowing either pneumonia from poor swallowing, or broken bones from falls. Sorry cannot help with definite information but this site provides assistance and a sounding board when you feel low.

    Best wishes Tim

  • Hello 1009luck

    My mum had PSP for 9 years (finally diagnosed 4yrs ago) and, as each year passed mum became more rigid. In the last few months before she passed it became increasing difficult to move and dress her, and she slept for most of the day.

    I am not saying that your husband is at this stage. As you will know from this forum, everyone suffering from psp is different, even if some of the symptoms are the same.

    It may be that your husband has now developed another psp symptom where he cannot control opening/closing his eyelids. My mum also had this and, many a time, we thought she was asleep when she wasn't!

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