This is my first time participating on this site although I have been a keen reader for the last 12 months.

[ruthbarlow]

My husband was diagnosed with PSP in December 2010, but like a lot of what I have read of your experiences he also had the symptoms for at least 2 years before they finally found out what was going on. Unlike most of what I have read my husband has never had any falls, thank goodness, and was wondering if anyone else out there with this condition has never experienced falls. He has all the other symptoms, eye movement difficulties, swallowing, very low mood, can only walk short distances to name but a few. It has caused me to question the diagnoses and have discussed this with his consultant who has assured me of his condition as a brain scan confirmed this.

Any feedback would be appreciated.

[jillannf6]

hi ruth

welcome to the blogging world!

i do not know why your husband's balance is unaffected - but a brain scan cannot confirm Psp as far as i am aware

only at death( if the bran has been donated) can it be proved to b Ps\p

sorry i cannot be of any more help

love jill

[kay1]

I think that PSP has it's own variations, earlier blog informed us of two variations, I found that interesting to read and believe my husband is PSP P as opposed to the PSP R.

[SheilaN]

Hi, my husband was in hospital for twelve days in December 2009 (in Germany where we lived at the time)for extensive tests, MRI, CT, lumbar puncture,etc etc. All they found was degeneration of the central nervous system and spinal cord. By then he was falling, confused, short term memory going, wobbly legs. It was only in October 2010 here in Scotland that it was found he has the classic PSP eye problem; perhaps he had only developed that since the previous tests. But we believe it all started, without us really recognising anything significant, in 2005, following an accident with a rotivator. We saw the neurologist most recently in December and he told me that an average life expectancy is 3 years after diagnosis.

I had never heard of PSP R/PSP P until recently on this site. Just PSP. My husband has both physical and cognitive symptoms. Anyone who didn't know him or his condition would assume he had mild dementia.

There seems to be no pattern in symptoms developing in PSP patients. I have been dreading my husband losing his ability to swallow but last week during a swallow study his speech therapist told me she has had a couple of PSP clients who never lost it so I don't think we can make any assumptions about PSP.

Take care

SheilaN

[Jeff]

Jill mentioned that no scan / MRI or any other test can verify PSP and that is the same information that we have received.

Jeff wasn't diagnosed until the fall of 2009 but once we found out what all the symptoms were, we can trace back the start to 2004/2005. He didn't start falling until 2008. Not to be a downer here but it may be that he just hasn't reached that stage of the horrible journey.

sheri

[dllera]

Hi Ruth - I can only second or third what has already been said. PSP cannot be confirmed by MRI's etc. It is a clinical diagnosis based on symptoms. Google "stages of progressive supranuclear palsy" and read up on the most common symptoms. I would also like to inquire about your husband's behavior - -is he having judgement issues, behavior changes etc? Everyone experiences PSP at different rates - -PSP-R has more to do with cognitive changes vs. the more physical changes in PSP-P.

[PSPA_JillL]

An MRI scan would be used to rule out other causes of the symptoms, and clinical diagnosis is made by looking at all the information, there is not one simple diagnostic test. The difference between PSPR and PSPP would also be based on the clinical observation of an experienced specialist, and not all specialists make this distinction, both can have physical and cognitive changes. We need to learn more about PSP by research and study.