What was the first sympton you had before ... - PSP Association
What was the first sympton you had before being told that you had psp?
For my mother in law it was not caring about her personal care, losing balance and falling.
hi stitichand knit
balance and falllign hav ebeen a problem fo rme for many years byt i ws only diagnosed with Psp in dec 2010
now i ahv ethe diagnosis i am not de[pressed (bu anxiety and resltessness are v high)
my personal care is stilll so improtant to me
lvoe jill
The same for my husband, loss of balance, falling, after having a pacemaker fitted we all thought it was Parkinsons, but when we saw a consultant we were told PSP. That was in 2008.
as for Steve it was the loss of balance and the falls then 6 months later was brochial pneumonia followed by his trouble breathing he was unable to clear his lungs of carbon dioxide from december 2010 it was downhill for Steve it was nearly two years he suffered and was not understood Steve will be cremated 7th march 2012 at 3.30pm but will never be forgotten god bless you darling RIP xxx
Geoff was a very keen rambler until he started falling backwards, his last ramble he had 3 falls! his handwriting had already gone tiny and was illegible! he was very "lucky" in being diagnosed very quickly by a marvellous neurogist in liverpool dr andrew nicholson. good luck to all of you x
As all of the above, my husband suffered falls, handwriting that got smaller and smaller, speech became slurred and muscles stiffened. He initially was diagnosed with Parkinson's but six months later PSP. It is 8 years in December since first diagnosed with Parkinson's. More recently falls have increased, mostly backwards, and walking very slow and difficult. He gets very tired and he has difficulty keeping his eyes open. Stiffness of joints has increased and he needs to take care when swallowing. Going up stairs has to be carefully managed as downward gaze is slow and difficult.
it was falling with Mum backwards for no apparant reason - but she was also coughing and spluttering eating but we had no connection wth PSP then xx
Main symptoms:-
Frequent falls and impaired balance and a staggering, "drunken" walk, though
teetotal
Additional symptoms:-
Difficulties initiating movement, eg getting up once fallen
Handwriting became illegible
Bending very low over his food (to see it, because of loss of eye movement)
Slight tremor in one hand eg when lifting cup
Taking longer to do things eg slower at doing his job, but also walking
markedly more slowly
Increased stiffness
Increased clumsiness
Eating with his mouth partly open
Mumbling & opening his mouth relatively little when speaking
Slurred speech
Habit of repeating just a single word from a sentence which had not initially
been heard/understood by person to whom he was speaking
Seeming to be aging prematurely
Starting to go to events specifically for older people and speaking of himself
as old though not even of retirement age
Withdrawing from pleasurable activities such as long-distance walking
Lower mood
Saying that there was something wrong with him
Suspecting he might have Parkinson's
Urgency incontinence, but this could have had non-PSP causes
Leaning backwards when walking & an occasional fall as well as seemingly depression.
Thankyou everyone for your replies. I keep thinking I may have PSP developing. I'm due to see the neurologist maybe he can tell me more when I get an appointment.
All the best to everyone, this site is brilliant!
My husband's personality started to change about 5 years ago, then he started not bothering about himself or others. He became very quiet at about the same time the falls started. Since then his speech has become almost inaudible at times, his voice is getting softer and he speaks very rapidly. He eats slowly but fills his mouth beyond capacity, this in turn causes him to splutter and choke on his food. The most recent development has been a mark decreased in eye movement, this causes him problems with virtually everything he undertakes. He does most things by touch rather than looking in the direction of an object he may want.
I know the literature states that each person has very individual symptoms, but just reading the replies to this question would suggest otherwise.
Is anyone undertaking more detailed research into the early signs and symptoms of psp?
Hi
I agree. Research needs 2 be done
I wish that everyone with PSP would look into Cure PSP Foundation and take the steps to be a brain tissue donor... that's the only way they will ever be able to find a cure. The process is not hard, you do however need consent from your loved one to proceed. It's through the Mayo Clinic in Florida.
Original diagnosis of Polymyalgia rheumatica. Diagnosed in 2008 with PSP based on inability of eye movement primarily up and down.
My father's first symptom was apathy -misdiagnosed as depression -then it was his vision.
We initially had the same as you dlera. My husband had vision issues and the opthalmologist said it wasn't the eyes. It was the brain. The neurologist said that it was concentration and attention, then depression, then a chemical imbalance in the brain. We had 2 clear MRI scans. Finally the memory specialist sent us for a spect scan and that showed problems with the back lobe (vision) and the front lobe ( memory, understanding, appropriate behaviour, emotions, following instructions etc). Finally 2 years later in December 2010 it was diagnosed as PSP with an overlap of CBD. Over the last year he has been having falls which have got worse. His handwriting has got smaller and is illegible. The worst part for me now is the anger which sometimes results in hitting out and grabbing me tightly. He hurts me at times. He gets very frustrated. He can't stand it if i don't do what he wants immediately. They're now saying he is atypical PSP with other problems.
hi dorothy
and camper
it is v diffiucult even wiht a diagnsois as ther eis no approprate treatment
and i ge tv angryu and am frustrated
it is all part of the illness i kow
othe rsyjmptons
smlaler illeg handwrtign
typgijn dyslexic
speecjh garbled and quieter
eveyrthing has speeded up fo rme - cnanot mvoe or do anythign slowly nay more
my introduciton include smih problems ]like inabiltih ot do zips buttons as co ordination gone
cannot bruhs or comb my hair or polish things
and dorppign and breakgin lots
et cetf
btu i need 2 think more of wha ti CAN do
ie sitll sing in a small ladies choir and i HOPE keep to the rhythm and tune
get my hair done once a week as i cannnot brush or comb it myself any more
and get out occasionally 4 a walk aroudn the park (wiht an arm ot ohang on to) or suse mkyhi 4 wheel frame iwht someone elsel too
tjhsi ha sbecome a lonh ramble
jlveo jill 
Hi Dorothy -it does sound like you are on the same path as we were - Dad started getting dizzy and couldn't work anymore -we went to an ear nose and throat doctor, eye doctors and several nuerologtst -- had several MRI's. We were told that dad had alzimers -but he knew he didn't -then the falls started happening. So we kept looking -Dad then had a fall and got a herniated disk in the siatic part of his back and needed surgrery. He never fully recoverd his ability to walk "normally" - -we finally when to another neurologist in Seattle and is was an intern that found that it was PSP - -4 yrs after inital symptoms - -that's how long it took us to get a diagnosis. We also started seeing a nueropthamoligst as well. The aggressive behavior that you are seeing will probably pass - -the initial stages of PSP mimic FTD behaviors in a lot of ways - -do some reading on FTD and it may be able to give you some coping assistance. Judgement is one of the worst symptoms and the need to still be a "man" and independent are extremely frustrating. There is a delicate balance between keeping them safe and allowing them to be independent. My mom didn't make it through this part -the behavior part-- and she left him in Jan of 06 -divorce final in 2008 - -- it was so sad after 42 yrs of marriage. I wish my dad had the love story - -the one thing I couldn't provide. I really hope for you that you can look past the aggression - it really is the disease and it will pass - -there is a tough road ahead but there are many tender moments along the way that you'll look back on and think fondly of.
Hi
It is so difficult to cope with PSP as a patient,and threre is no respite from it at all
Love jil
Hi Jill - My lens can only see PSP from the side of a carer. I can only imagine what it is like to suffer from it and I'm sure my image only touches the surface. I in no way want to or mean to minimize your burden as you can not get a break from PSP. I just want Dorothy to be the best carer for her husband and part of that is getting her some help too. I pray that your burden is light Jill and that there are little moments of relief for you a long the way too. How are you getting along?
You're doing brilliant. Thanks for your reply. My husband can't get out by himself unfortunately because of the vision and memory issues.
Falls and very slight hardly noticable balance issues were our first sign anything was wrong. Then diagnosis of Parkinson's and later PSP (the correct diagnosis).
Thankyou everybody for your replies I saw the neurologist back in March and he says i have PAGF (pure akinesia gait freezing). My main problem is freezing and falling.He checked my eyes and they were ok. So I'm hoping it doesn't
turn into anything more. My heart goes out to anyone who has PSP because it doesn't sound very nice.I just need help to get around and can't go out on my own anymore which is frustrating!
hello sorry to be so late in replying but thiught i would anyway .... i frst fell backwards down the stairs in 2007 - i cracked a vertabrae .... then we moved to france in august 2008 - i was dx with PD in ian 2010 and started to take d opamine and loads of other stuff which did nothing for me - i had already thought , by reading stuff on the internet that it might be PSP or worse but was not dx until november last year after i went into hosp for a drug holiday - so i have PSP and dont i know it !!! my husband is the most wonderfful kind and caring man and looks after me so well .. my heart goes out to all who are suffering from this hideous disease
love sha xxx
sorry to repeat myself camper but thiught it may help some others
I fell down and since then have fallen forwards a number of times and backwards only once. My balance is definitely abysmal and my handwriting has become illegible I was diagnosed as having PSP 14 weeks ago. Hope this answers your question.
Regards Les
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