how far could dad be into the psp - PSP Association

PSP Association

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how far could dad be into the psp

rochestermn profile image
11 Replies

my dad has the double vision blurry vision alot of the time in one eye, he is somedays not real steady, he gets the shaky hands I have noticed he does,not have the strength to hold his legs up to put shoes on for very long. he falls maybe 1or 2 times a month. he was falling more that seems to bebetter or he is just more careful, he gets loud outbursts, I dont know if the stiff neck is part of psp. sleeps a bit more.he constantly is wiping his pants or the table with his hand, does anyone have a idea what stage this could be is it beginnig or middleor what he was diagnosed this year with psp we are not sure how long he has had this before he was diagnosed could someone give me a idea what stage or how far he is into this psp. he will not go to doc he says he does not have psp

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rochestermn
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11 Replies
mummybear profile image
mummybear

Rochestermn, sorry i don't think anyone can answer that question on the small amount of information you have given, in fact it's really hard to judge a stage with PSP, ask the specialist who diagnosed his condition, what type he thinks hubby has, and how far along hubby may be? you can look up the stages of PSP on this site and on Google but your Doctor should be able to supply you with printouts of the latest updates about PSP. wiping his pants or the table is quite common, stiff neck ect ect. who diagnosed hubby as eye signs are they cannot look down without moving the head, but i know of none that the hands shake like Parkinson. check out with the Neurologist first, give him a call and ask. good luck, and read the blogs on this site and CUREPSP to find anything out.

kay1 profile image
kay1

if only PSP came with a book of instructions, I think we all "muddle" along as best we can trying to make sure our family with the dreaded PSP are kept as comfortable as possible. My husband was diagnosed 2008 and for the first couple of years not too many symptoms, but the last six months they have become rapidly worse.and like you, I wish there was a tempplate to let us know what to expect and what to do. I wish you and your family well x

rochestermn profile image
rochestermn in reply to kay1

thanks for your reply

jillannf6 profile image
jillannf6

HI

I AGREE WITH THE ABOVE 2 BLOGS

THE PSP ASSOC IN UK HAS AN EXCELLENT ARTICLE ON THE STAGES OF PSP

I THINK I AM SITLL AT STAGE II SINCE DXD DEC 2010 AND THUS I HOPE I HAVE THE SLOW SORT

ANOTHER SITE IN USA ALSO HELPFUL CURE PSP

LOL jiLL

:-)

MJ-Mark profile image
MJ-Mark

Here is a great article for you.....

pspinformation.com/disease/...

Hope it helps

MJ

rochestermn profile image
rochestermn in reply to MJ-Mark

thank you this article was very helpful

jimandsharynp profile image
jimandsharynp

I think that sometimes we caregivers get too wrapped up in "how long will he/she live?" or "What stage is he/she in?" or simply "What's next with this PSP?". Truth is there are no specific patterns with PSP. I can be very different in each patient. I have the same questions but I'm trying to train myself to just cope with the present and forget about what's ahead or how long it lasts or what stage my wife is in. I feel that the immediate issues are a lot to deal with in my case. Just my thoughts and like PSP patients, all caregivers are different.

MJ-Mark profile image
MJ-Mark

You're welcome rochestermn! PSP is an awful disease and to compound it with no treatment is beyond cruel. It helps me to know there are others out there in the same boat and none of us are alone. Take care of yourself!!

MJ-Mark profile image
MJ-Mark

Well said! That is exactly what we do here!!! Sometimes thinking ahead too much is overwhelming.

Everyone else has said it all very well---there is really no way to tell exactly where the disease process is at any given time. I just wanted to say families report of long plateaus where patients stabilize and then there will be a set-back and things move quickly. Here, I tend to bet complacent when things stay the same and go into wishful thinking that nothing "bad" will happen for a long time, and then when it does I think the worst. It's a true emotional rollercoaster, so as JimandSharyn says its best to take it one day at at a time. I learned that here from other carers, and it's hard to do but the only way to keep your sanity. Take care.

jillannf6 profile image
jillannf6

hi i have psp and like the caregivers above tend to want ot knwo how long ? how bad will it be? etc etc

i have jus tbeen dxd with invasiv ebreast cancer - have had the op - am now clear and hav eto hav e15 sessions of radiotherapy and be on tamoxifen for life (see mky earlier blgos)

at age 66 i could have done without it BUT i am over th worost of it and th PSP is inh the forefront agian now..

but it IS improtnat to get soemthing out of each day easier said than done

take care

and lol JIll

:-)

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