In the dark about psp

[lindy21]

hi everyone,my husband George was diagnosed 3 years ago and is in wheelchair but other than being unable to walk and being weak there is no other change.l often wonder if he really has psp or maybe its just not understanding the illness,he is very well in other ways just fed up with not being able to get about.wondering if anyone else is like this

[Suebatt]

Hi Lindy

I'm sorry I cannot give you an answer but my other half had other illnesses before they put it all together and diagnosed psp

Hopefully somebody will be able to give you some different advice

Sue x

[easterncedar]

That's interesting, Lindy. I don't recall anyone else describing such a situation. Upon what was the diagnosis based, I wonder? The PSP diagnosis is often not perfectly certain, although the most common story is of years of misdiagnosis with Parkinson's before PSP is discovered.

Still, JudyJ just told us that she was recently told that her PSP diagnosis was incorrect, so a mistake in that direction wouldn't be unprecedented.

Worth looking for another opinion in your case?

[lindy21 in reply to easterncedar]

George was seeing neurologist for balance after a stroke,and because he cannot stand alone I feel he has become weak through sitting all the time and that would make anyone depressed,but I Suppose time will tell

[Julieandrog]

Hi

Anecdotally it appears that our loved ones started with behavioural changes, loss of empathy, motivation and engagement, then the falling!!!!!!rog was very mobile until he had a life threatening fall, then cascaded down, so would agree your journey is not the usual progression.

Julie

[VronB]

I think my husband was finally diagnosed by his eyes being downward looking. I don't think the first neurologist knew about PSP. Where are you?

[lindy21 in reply to VronB]

we live in Kent uk

[fothergilla]

My Dad was somewhat that way. No speech or swallowing problems but there was something about his eyes that was different. It wasn't terribly noticeable.

[Baruli]

Hi Lindy,

My Dad used to say that he felt like the ground was rolling under his feet (two years prior to him actually falling ill). We realised later that his eyes also could not focus downward during that time as he used to step on stuff on the floor. He was walking towards his car one day when he suddenly couldn't move- was rushed to the Hospital and went through three months of hell as his initial diagnosis was Parkinson's. Finally after spending a whole day doing various Tests, a Motion Disorder Specialist diagnosed him of PSP. None of the other neurologists (and he consulted quite a few) even knew much about this condition! He was fortunate that he was diagnosed early on. He too cannot walk on his own and has a dragging gait. It's Three years since he has been housebound- eyesight is slowly fading, has issues with bowel movements and responses/ speech is diminishing though he is mentally very alert with a remarkable memory and hearing. Recently he has also been having these trance like spells where he is unresponsive for some minutes. PSP has so many facets to it, and it's progression could differ from one individual to another. Do you think you could have a fresh consultation scheduled again, elaborating George's current and more prominent symptoms, so that a proper diagnosis can be made? Best wishes and love to both of you from across the miles xxx

[jillannf6]

i agree

lol jill

xxxc

[D0ttieL0ttie]

I can only add to the above that my husband was diagnosed with fronto-temporal dementia because of his behavioral and personality changes, then Parkinsons but as he became worse he started falling backwards, fixed gazing, getting stuck etc and then PSP was diagnosed which is where he now sits, more common to not get PSP diagnosed in early stages. Ask to re visit the neurologist and maybe contact the PSP organisation for help too. Good Luck

[JantheNana]

It is my understanding that the eye movement is the telling thing as to whether it is PSP.Inability to look downward and difficulty with side to side movement also.

Has your husband had physical therapy for his inability to walk? Hope you can get some answers that will help.

[lindy21 in reply to JantheNana]

My husband did have some physio but only one hour per day for about 4 weeks ,and because neuro rehab were told it was psp they said his brain would not carry over the next day and that it would not help, it was only done because I was insisting it was not psp and they were trying to prove it was,as I have said before George has no eye problems at all and if he could walk would be fine.Maybe it was an early diagnosis and these symptoms will appear but it has been three years now and no sign yet,maybe wishful thinking. Best wishes to you all. lyn

[JantheNana in reply to lindy21]

Did the physio help him? To me it would seem the exercise would help even if it did not carry over to the next day.I know my husband won't do the exercise on his own,and I have so much to remember to do as it is that I cannot remember to tell him to do it when the time is right! Our physical therapy benefit stopped because they said it was not improving him.

If I were you,I would keep questioning his diagnosis however because the eye movement is the telltale sign.

[Satt2015]

Hi Lindy

I think it's perfectly normal to wonder if it's Psp? Denial is easier! So that's my take on it! In the meantime welcome although sorry for the need to welcome you! Here you will find some of the best friends you ever make!! Shout scream and rant whenever you want, we ALL understand x

[Robmatlol]

Hi Lindy...........from my experience 3 years with no change other than being unable to walk doesn't sound like psp as it affects the whole body, ie mind as well as body. It would be interesting to seek a second opinion in my eyes. Good luck xx

[jillannf6]

i agree a second opinion would be helpful

lol jill xxx

[Janette49]

My dad has psp needs a wheelchair falls a lot but in himself he feels well and looks well.

[rriddle]

Lyn,

Most with the PSP-parkinsonism form of PSP don't decline precipitously. They can remain on a plateau for a long time. There are other forms of PSP, such as PAGF, where the survival time is an average of 11 years. (Some take that as good news; others do not.) Obviously, the diagnostic accuracy for those other PSP forms is much lower than in the classic form of PSP. No one can know the true diagnosis until the brain is examined upon death. (Hope you've made arrangements for that via Queen Square Brain Bank.)

You can read about the five types of PSP here:

brainsupportnetwork.org/fiv...

Robin