My father inlaw was a active man, lived alone and done everything for himself until Xmas day when he had a fall. He didn't look well after the fall so he was taken to hospital and was admitted for 2 weeks. When he came home from hospital he could not do much for himself after 2 weeks at home and family doing everything for him he was taken back to hospital. After another 3 weeks in hospital he had a MRI scan then seen a neurologist who Diagnosed him with PSP.. At this stage he could still walk with a walker. 1 week after he was diagnosed he was bedridden and moved to a nursing home at the end of February. Now 6 weeks since diagnosed he can only eat puréed foods , which he doesn't eat much of and can't talk or communicate.. His body has gone stiff and he can't move. Has anyone else seen anyone with PSP decline this fast???
My father inlaw Diagnosed with psp... - PSP Association
My father inlaw Diagnosed with psp...
Hi leemaree
Sorry to hear about your father-in-law's condition.
It would be extremely unusual for PSP to progress so rapidly (but some cases have been reported of about just one year survival from apparent symptom onset).
I'm not sure what the neurologist saw with the MRI but perhaps a diagnosis of Creutzfeld-Jakob disease should be also be considered (as this has occasionally been initially diagnosed as PSP in some patients). It has different forms and often shows a very rapid progression through most of the symptoms you have described. (CFD usually exhibits dementia and personality changes). Stiff limbs is more like CFD than PSP.
Please let us know all the reasons for a diagnosis of PSP given by your neurologist.
Cheers
T.
Hi strelley. Thank you for your reply. The diagnosise was from the MRI and the symptoms he was showing at the time we're slurred speech like he had had a stroke, which he hadn't , constipation, incontinence, he couldn't write, no coordination, didn't want to eat and could hardly walk and could do nothing for himself at time of visit to neuroligist, his eyes were also very sore. He doesn't have dementia he has all his wits about him.. This has moved very rapidly which makes me doubt the diagnoses of psp, as now 6 weeks after diagnosed he is bedridden and can't talk or move he is so stiff, he tries to talk but the last two weeks we just can't understand what he is trying to say. This is so heart breaking to watch someone in this condition..
Thanks for your reply leemaree. The diagnosis of PSP does sound suspicious in light of his very rapid deterioration. As you say, it's heartbreaking.
Take care and stay strong.
T.
My thoughts and prayers are with you and the family. Having lost my first wife to CJD and now my second fighting PSP my heart goes out to you.
Jimbo
Strelley, I totally agree with you that Creutzfeld-Jakob disease (CJD) should be considered. My first wife (51) passed on from that disease (married 31 years). She went from a relatively normal person to death in a matter of four months. In that time she went through partial mobility to no mobility, blindness, inability to swallow, and speak and much more. It was the most traumatic event of my life before this PSP in my second wife (24 married years). CJD is a sister to what was called "Mad Cow Disease" in the UK. It has a lengthy time period from it's beginning to when you see any symptoms. Neurologists said "Don't try to figure out how she got it because the incubation period is long". I'm putting my money on CJD in her fathers-in-law's case. I wonder if he is experiencing "alien limb" which my wife had. Her one arm had a mind of it's own and would move into unusual positions by itself. Also if she had hold of something it was like she couldn't let it go. PSP or CJD they are equally tough to go through. If the patient passes in four months (CJD) or seven years (PSP) the loss is not any easier, trust me!
Jimbo
Thank you for you reply it has been very helpful.. You mentioned alien limb, one of my father in laws arms won't move it just lays across his body and it's like it's frozen in that position and he can't straighten it. His hands are always curled up tight like he is squeezing something. He can't open his eyes much and when he does it's only for a second or two.. The neurologists trialed him on parkinson medication( sinamet) and we were told it was to give him a bit more mobility, after one week one this medication he was bed ridden. He has been bedridden since 28th February and after 5 weeks on this medication and weeks of us saying it was doing nothing they finally took him off it at our request. I think this medication made him go down hill fast and caused dystonia.. I just couldn't understand why someone that was bedridden was kept on a medication for 5 weeks that was supposed to give you more mobility.
Dear Learee, so sorry to learn of your problems with your father in law. Yes it is SO sad and heart breaking. As Strelley says try to stay strong and use this site for support. My father suffered severely for six years and all I can say to you, from which you may be able to glean some comfort, is that with quick progression of the disease, what ever its name, the kinder it is for the patient. There is no cure, we are helpless to do anything.
Hi there, sorry to hear that your father in law has had this set upon him so drastically. My mum's progression was a fast one but still took 6 years from onset. However we tracked the illness back to estimate the onset as she was only diagnosed approx 18 months before she went into end stage and passed away. We felt strongly that she had kept her problems a secret and was having falls a long time before it became dangerous for her to be alone. She would laugh things off, give what seemed a valid excuse or not mention them. It was only when she was getting major injuries and needing a lot of help with her daily life that we moved her into sheltered housing (she was too fiercely independent to have me or carers in every day) and even then we were amazed that she willingly went into there. She knew deep down that she needed someone around during the day when she was mobile. Only one year after moving into sheltered housing she had to go into residential care and only 5 months later had to go on to the nursing section. As already mentioned the quicker an illness like this moves, the less suffering for the patient but what a shock to lose things so suddenly, poor thing. I wish you all well and hope you get chances to say what you want to say and make the last days as good as you can. Best wishes, Dianne x
No it's taken 7 yrs for my mum has been agony watching her decline , I'm not sure which is worse ! Thinking of you and your family Louise x
Hello leemaree -
You must be in a state of shock - it does sound an unusually fast progression. My husband didn't have the total stiffness but the lack of communication was frustrating for him (and us - you have to know the right question to ask to get a yes/no answer, with a squeeze of the hand.)
Does your father-in-law have the problem with eye movement which seems to be the defining feature, such as an inability to look downwards without moving his head?
Thinking of you, Mo
Hello wifemo Thank you for your reply.. Yes my father in law did have problems with eye movement as you mentioned.. When having a conversation ( when he could still talk which was only 4 weeks ago) he could not hold eye contact and would look away like he was not interested or listening to what we said.. He would look really vague also, but if you asked him what we just said he could tell you. It was like he didn't comprehend what we were saying straight away but then would answer us..
Hi leemaree my mum identical just the same as your father in law , we have careers four times a day and me and my three brothers take it in turns to stay at night, heart breaking to see them decline so fast.
Leemaree, My guess is that the PSP had been going on for some long period before his Christmas fall. He had probably fallen many times before that but did not tell others because the fall wasn't bad. I do know that traumatic events can take a toll on PSP patients. Being hospitalized just could have set him on a downward trend. However, I've not heard of such a rapid decline in a PSP patient. As you describe it in time it would be only eight weeks (two months) from a relatively healthy individual to serious effects. I'd wonder if the fall didn't affect the brain very drastically to cause the quick decline. Perhaps others may have heard of such fast decline (two months) but not I in all my research. I'm agreeing with Strelly it most likely sounds like its CJD disease not PSP. Look up the Cruetzfelt-Jacob Disease symptoms etc. on Google. Jimbo
I have looked up the symptoms of Cruetzfelt- Jacobs disease, yes he does have all those symptoms but he does not have dementia he has all his wits about him..
Yes, my wife did also. The day before death my mother visited and said "love you" and a tear ran down her cheek. She couldn't speak but brain was still working. She couldn't comprehend what was happening to her although she knew it was CJD.
I asked a neurologist recently why PSP is considered a dementia disease and he said "Any disease affecting the brain is considered a dementia disease". Don't know if I agree, just passing it along. I asked him because PSP is suppose to be a dementia disease but my wife's mind is fine at the moment. Jimbo
Hi Jimbo
Dementia is not a disease but a group of symptoms that involves memory loss and thinking problems, impaired judgement or language and inability to perform some basic daily living tasks. Another name for PSP was nuchal dystonia dementia. However, the dementia in PSP is not the same as the extensive cortical dementia as seen in diseases like Alzheimer's.
Many neurologists call the symptoms in PSP as "subcortical dementia" which refers mainly to the difficulty in recalling words or phrases, slowness in mental processing and also apathy/depression. It may also include the pseudobulbar affect of excessive emotional laughing/crying. They also may show some prefrontal lobe problems of dysexecutive syndrome where they have difficulty organising things.
This is not to say that a number of PSP patients may experience some other forms of dementia, especially towards the later stages of the disease (some cases at autopsy have shown both PSP and Alzheimer's pathology).
As you know, most PSP sufferers are aware of everything around them (even when they can no longer talk or see). They can often retain a sharpness of thought (and good long term memory) even though they are slow to express themselves. My wife still has this ability but I have to give her time to find her words. It's awful when she cannot find them, and speaks so quietly and slurred that I don't hear them the first time!
Cheers my friend
T.
I can relate to the quiet speech and inability to find the words. Sharyn has the same issues. Thanks for posting.
Bonjour Leemaree! two months is truly too short a time from diagnosis to your father-in-laws state. A recent poll on this forum had most respondents stating 'like it took forever!' to get a diagnosis while we know PSP incubates for several years.
But that lifeless arm and the tense curled fingers I saw in my wife's PSP condition.
Our Tony Strelley has told of CJD and Jimbo has lived thru' it first hand..we mustn't forget that each patient is different...so if father-in-law has nine out of ten symptoms in the CJ case could it not be the diagnosis?
Leemaree maybe the only way you will ever be sure is at post mortem time....and only then should your father-in-law wish to make the final hero's donation to the UK Queens Brain Bank.They do all arrangements...and your GP will get a copy of the results. I do apologise for broaching this delicate subject.
And lastly that MRI scan can't be conclusive either. I believe that to be able to spot a PSP/CBD case via a scan the machine has to be almost 100% more powerful than any normal scanner. And there's only an experimental one that exists... worldwide!
With you in mind, best,brian.
hi i agfree i have donated my bqrain 4 research when i die
lol JIll
Hi my dad was diagnosed in November last year with PSP, he fell down the stairs in Feb and was in hospital for a month before he passed away, before the fall he could walk a little, eat and talk but after going into hospital he could only eat purred food and stopped talking, this all happened within 4 weeks. it was so fast.
Bonjour Geeta : first off my sympathy is with you all the way on losing your Dad. It's horrendous under any circumstances to lose a parent. In your Dad's case the time from diagnosis to leaving this planet was grievously short. Falling downstairs and being in hospital sure didn't help any.
It's not much comfort ...but from what you describe, Dad's suffering is now long gone.
Having said that falling down the stairs can be fatal to anybody who is Senior. And that's the reason we had to sell up and find a single story house..the risk even when accompanying someone with PSP down stairs is something we all should think about. Those sitdown electric stair climbers can be a great help...but soon
even these become redundant when PSP moves on.
Again sorry ,Geeta with you in mind,best b,
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