I have psp.Can someonr tell me what the 7 stages are? Love Issy.

[ifenwick]

[Hidden]

So sorry to hear you have been diagnosed with PSP. I can only give you my understanding of this neurological condition, so others may differ from me. Unlike other diseases (e.g. cancers) it is not possible to stage PSP. While some (in Europe) use a 7 stage model, others give a 4 stage. However, PSP is so variable with each individual, one can only generalise about stages. The reason for its variability is mainly due to the areas of the brain it affects, and the degree of neuron death during the course of the disease.

I use simple terms (not clinical staging ones) like PSP starts as mild, then progresses to moderate and then severe, followed by end-stage. Even these terms still require definitions of what is moderate or what is severe. Most PSP sufferers will go through similar (but not necessarily the same) symptoms with different severities, and this will often detemine how we express what "stage" someone may have reached. For example, when someone cannot swallow food anymore then this could be called the "severe" stage.

By the time the first symptoms occur there could be 50- 80% loss of neurons already in some areas of the brain (usually the one that affects balance), The progression severity then depends on how the remaining neurons "hang on", and some patients who have are otherwise generally healthy can survive longer than the texbook average prognosis. Sorry if this sounds a bit technical and somewhat morbid.

I'm sure others will give you the 7 satges that you have obviously heard about but I trust you'll not worry about stages. My wife has PSP and we saw our neurologist only twice. Once to confirm my own diagnosis of th PSP, and secondly to give us the MRI result (midbrain atrophy). He was extremely empathetic but suggested no mediactions, but sent us away with the words "enjoy what you have now and live life to the fullest". In other words concentrate on all the positives of life and don't let PSP rob you of the present joys one can experience with family and friends.

Tony

[veronica_gp in reply to Hidden]

Hi. I have not read or heard that PSP has 7 stages. Cad sick evolves differently. If I find something I will comment on your question. greetings.

[lepman50]

I personally never heard of 7 stages, But I have learned of 5, and they are comprised of the symptoms you are haveing....But in like all conditions everyone is affected differantly and some don't get them all of the symptoms either...But why try and even asertaine a certen stage...Care givers and the patients know when it's colse to the end....why not concentrate on quality of life issues as well as day to day living....We all know that this is a life shortening condition and have no choice but to roll with the punches as they come....It's just alot of unnessary worrie and mental anguish for everyone to jsut keep worrieing about what stage you maybe in....We all know just to get our affaires in order to make it easier for all who are involved.....And to keep enjoying life as much as we can.....I know this sounds callus, but it is what it is, litteraly....Life, It's still what you make it, and if you choose to keep your life in termoile, then I think it would be a wate of life....

[jillannf6]

hi issy

i was dxd in dec 2010 and had been having major balance problems.

the neurologis twho gave m ethe diagnosis told me to get my affairs in order/ move 2 a gorund floor apartment (frOm 1stfloor) get a sooial worker / all of which i hav e done

and i ma still her eupright most of the time)

"THE STAGES" CNA BEH OBTAINED FROM TEH PSP ASSOSC IN UK IF YOU HAV ENOT ALREADY JOINED

ARE U IN THE UK?

THEY R SO HELPFUL AND THE SPECIALSIT NURSES R ABSOLUTELY GREAT

LOL jiLL

[kay1]

the above answers are all true, each case different. The swallowing never seemed to affect my husband, i spent time worrying about peg fittings etc instead of just making the most of each day, you are right to get as much information as possible, any answer from "our Jill" is always informative, and helped me during my husbands PSP journey x

[huthwaite]

Tipping over, wobbly legs (We thought Peter had inner ear problems), general balance problems, high voice then mumbling, dodgy eyesight. Peter fortunately didn't suffer from problems with swallowing but his appetite diminished (apart from puddings!) and very sleepy.

[jimandsharynp]

I've posted my feelings on the stages of PSP on this site before but I'm happy to share them again. Our neurologist at the University Of Florida doesn't believe that stages of PSP are identifiable. My feelings are that in dealing with PSP there is enough to be done just to cope with each day. Bottom line is NO ONE knows how long your loved one will live with PSP. This disease is so different in each individual that there are no "guarantees" in ANY aspect of the disease. Some have tremmors while others do not, some have speech issues early on others do not, some have swallowing issues early on others do not, I could continue but I think you get the picture. Your loved on who has PSP has enough to cope with mentally without dwelling or even thinking about what "stage" they are in. My wife and I don't discuss anything about stages, how long she has to live, what's next for her, etc. I find those things unproductive for both patient and caregiver. This is a unique disease to each patient so how can there be stages that are CLEARLY identifiable? If I were you I'd ask my neurologist and see if they will tell you about stages and what stage your family member is in. I doubt they would take a guess about it and would challenge you to forget about stages. Give it a try and see what he/she would say. Sorry to be a bit harsh but I have strong feelings about how unproductive worring about stages is. PSP, as they say, "is what it is".

[shasha in reply to jimandsharynp]

hi - i agree with your statement - i.e psp is what it is and there is very little we can do about it - ' apart from getting on with life and trying to make the most of our days weeks or years

[marytea13]

I was diagnosed Dec 2011 mostly balance problems I agree with what others have posted here. I am supposed to have the 'slow' type as I have not changed basically when I was checked in Janually by my neurologist. He's wanting me to increase my dose of Sinemet that I am graually doing as it causes me to vomit. Try to keep busy with a range of activites including physiotherapy.Cheers marytea13 in Western Australia