Could someone explain the stages of PSP? - PSP Association
Could someone explain the stages of PSP?
I think you'll find this has been answered on this forum before, but I hope the following will assist you. Unlike some diseases PSP cannot be staged accurately because of the wide variation between sufferers. Additionally, there is often an overlap in symptoms and PSP itself has at least 5 subgroups and can occur with other very similar diseases like CorticoBasalDegeneration.
A John Hopkins PSP group wrote down the stages (they admitted they were not medical people). It shows 4 phases or stages but often the symptoms can occur in different orders (or not at all!). To see them go to pspinformation.com/disease/....
Some people use the Parkinson's Disease 5 stage of Hoehn and Yahr (which you could look up).
I suppose most people (including doctors) use general terms for 4 stages, and I tend to use, "Mild, Moderate, Severe and End-Stage". Even so, it's difficult to know what symptoms to put in these categories.
It's also difficult to give a prognosis (hope I'm not being too vague, or too insensitive talking about prognosis). The best studies say the average life expectancy from symptom onset is 5-7 years (or 6-10 years). Rarely does it go past 10 years and a lot has to do with other medical problems that exist apart from PSP (remembering that the average onset is age 63).
This may not have answered your question as you may have liked. Perhaps you may have been wanting to know things like "If my loved one cannot walk anymore at what stage are they in the PSP progression?".
I'm sure others will give their views, and it's good to have a forum like this to gain knowledge of this devastating disease.
All the best.
you said it all .thats the way it is. there is nothing out there for psp. the medication does not respond like for a parkenson patient. my husband is on stalevo and amantadine which so expensive and doesnt even work. it such a horrible disease.and it is so hrd to watch your loved one decline so. my husband i think is in stage 3. there are 4 stages. he now is having trouble swallowing. i have help now all day till 11 pm. he doesnt talk too much and if he does u dont understand him. many of our friends think they understand but they dont know what we go thru.we stopped going ouy to eat because it is so hard for him. i cry all the time.god should give us all strength. take care bubbie
i tried the link but it did not work ?
Sorry Shaha, just noticed the link did not work. If you google the following words you should find the first item contains the PSP stages....
"PSP stages John Hopkins" ....
the actual link is pspinformation.com/disease/...
Hope you find it!
THANK YOU STRELLY - I HAVE PRINTED IT OUT FOR MY HUSBAND TO HELP HIM UNDERSTAND MORE -
Just a post script to my answer. Although some use the Parkinson's Disease (PD) 5 stage to assess PSP, we must remember that PSP is NOT Parkinson's Disease. It has Parkinsonian features but most neurologist now keep PSP as a distinct disease and different from PD. For example, most PSP sufferers have no tremor while most PD do have tremor...... and PD sufferers do not eye problems (vertical gaze palsy - unable to look up or down) and most PSP sufferers do. The list is extensive, and there is no successful treatment for PSP while PD patients are helped by levodopa.
Hope this helps!
I'll put in my usual two cents. Here's my take on stages. Why worry about the stage you are in? Is this disease any easier to deal with in any stage? We decided long ago to live a day at a time and not deal in what the stages are. There are no sure things with PSP. It's different for each patient, progresses differently for each patient, symptoms or severity of symptoms are different for each patient. So why even think about the stages. Let's say you are in stage three (whatever that is) and you fall and crack your skull and die. Did it matter what stage you were in? Perhaps you are having trouble swallowing and you think you are in stage two, you aspirate, get pnumonia and die. Did the stage matter? Hate to sound harsh but getting hung up on the stages, for me, is a tragic waste of time. Live your life to the fullest for whatever your circumstances are currently.
Jimbo
I appreciate your thoughts and I think you have a point. I can see another point of view too as others might benefit from being aware of the stages in oder to best prepare themselves for the future. We are all different in the way we handle hardships. One thing is for sure we have no control over our situations. Thank you for your help. There is comfort in hearing from all of you.
hi i aagree tbat i t makes sense to plan a little for the future - i have never been goood at taking thigns a day at a time btu always liked to plan trips holidays etc/
so i tisdifficult to enjoy the her eand nwo on some days
but it is somehtign to work at
lol Jill
Hello! My dad has had this disease for almost 6 years now. It progressively gets worse hence its name. He is unable to talk, walk and feed himself. He has a catheter in and wears diapers. Lately he has not been able to make a bowel movement on his own. So nurses have been giving him enema's. Mom mom works full time and has people stay with him during the day. If it wasnt' for our church and the people God has sent to us to help us I don't know what we would have done. We think he has rallied once so far. It is an emotional roller coaster ride. I would love to stay in touch!
Just when we think its his last days bam! He gets better. and he reverts to how he was a year ago. then he declines again! so stressful!!!! and so draining on all of us. Sometimes it so hard to remember how he use to be before the disease.
If you have loved ones who have this disease my advice to you all is talk to them and communicate while you can. Because there will be a time when you will not me able to communicate with them.
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