Is falling one of the main symptons with psp

[rochestermn]

my dad was diagnosed with psp this year. the thing I here a lot is peoplr who know someone with psp say they fall backwards. my dad seems to be getting worse buy the week. he does not fall much maybe once a month and when he falls he falls forward not backwards. I have noticed he has problems lifting his legs up when he is sitting. my question is do you still get worse with out the falling involed, I here a lot of people say there spouse or loved one falls all the time . but dad does not and he seems to be getting worse.

[peterjones]

hi rochestermn im very sorry that your dad has psp i have psp but i fall backwards but with your dad im sorry to say that he will get other symptoms hes voice will get weaker and hes swallowing will be effected BUT he might be on a slow progression in that case it might take a fair while its hard to say with psp but i have had it since 2004 my voice is weak and my swallowing has got a lot worse i fall over quite a bit more than i used to but everyone appears to be at different stages and i find it hard to get out of a chair it feels like i have run a marathon but get as good specialist because the drs do not seem to know much about it a lot of =people have never heard of it including me before i got it i must admit get plenty of help sorry i could not be the bearer of any good news but your specialist will fill you in take care best wishes to your dad god bless peter jones qieensland australia psp sufferer

[rochestermn in reply to peterjones]

Thank you for answering my question

[marusela]

hi rochestermn im very sorry that your dad has psp too, my father was diagnosed like your father, and he falls foward all the time, doesn`t get balance and for rise or lifting his legs its terrible cause he cant by himself, and we have to help him everytime for wallk and all things he need....i know that its very hard see our parents be this way but help him the most you can, the last phase of this disease they are in bed all the time, no speak, dont walk and maybe they sleep all day...be strong and dont give up, hugs from spain

[rochestermn in reply to marusela]

thanks for your answer, my dad has these same symptons as your dad

[Hidden]

My mum (now 77) spent 4 and a half years falling over before she was diagnosed. She had double vision which we thought would be solved by cataract operations but was not. Mum thought her falls were in different directions but actually they were always backwards , it's just that if her head was turned she thought she was falling sideways. It was always asked if she had suffered a stroke as she tended to veer sideways and look or gaze fixedly at things from a funny angle.The falls were just occasional to begin with and it was declared she had a balance problem. When they began to become more frequent we moved her to sheltered housing as we thought she would be safer but by the end of that year she was diagnosed with PSP and we had moved her into residential care as she would get up and fall as soon as we left the room. She became too dangerous to be left alone for short periods and needed watching overnight too.Her voice began to fail shortly after this and she rarely says more than about 20 sentences a day, also last year she said that she couldn't cough properly-something we now realise was because her muscles were weakening. Obviously there are many other issues in varying strengths. Speak to a PSP association advisor as sooon as you can as they are a massive help and can make sure you are getting the right help etc. Good luck. Dianne

[rochestermn in reply to Hidden]

thank you for answering the question

[jillannf6]

HI IA M JILL AND WAS DXD IN DEC 2010

I MUS THAVE THE SLOW TYPE AS I AM SITLL HERE

FALLING FWDS ALL THE TIME

AND 5/6 TIMES DAILY

LOL jill

[rochestermn in reply to jillannf6]

that must be scary falling that many times a day

[jillannf6 in reply to rochestermn]

Imam used to it!Loljill

[jillannf6 in reply to jillannf6]

My,falls are now 20 tomes daily, myn speech is sworse, imhave problems with incontimene bit i ama,till here dyslexic typing etc but I AMA good !

Loll Jill

:1)

[bubbie]

hi there, my husband has psp for 5 yrs. now. in the beginning it wasnt so bad but now we must be very careful. he just fell this weekend and i was right there. he needed some stiches. he needs constant supervision. i have help, thank god we have good insurance. i would be in big trouble otherwise. im starting to get burnt out. it takes a big tool on me and him.it is a horrible illness and it seems to be getting worse that is why it is a progressive disease. i live in boca raton in florida. tell me where do you live .maybe you can join our psp group. it is such a big help. take care, its a hard road bubbie

[jimandsharynp in reply to bubbie]

Bubbie, I'm in the Orlando area. Where does your group meet and when?

jimandsharynp aka Jimbo

[rochestermn in reply to bubbie]

thanks for answering. I am from Rochester, mn

[jimandsharynp]

Yes, our neurologist at University of Florida Neurological clinic said that early falls of any kind (balance issues) are one of the early signs of PSP. Upward and downward eye movements are mostly looked upon as the distinguishing thing in PSP but falls early in the disease are another indication of PSP. Most times patients are diagnosed with Parkinson's and not PSP. I think this is because the eye issue kicks in later than the falling does. Just guessing. My wife started with balance issues and falls. First diagnosed with inner ear or some other issue and not PSP. Then diagnosed as Parkinson's. When she didn't respond to the Parkinson's medications and her eye movements became more evident the diagnosis changed to Parkinson's Plus and finally PSP a short time later. I've found that falling/balance is the most difficult thing to deal with in PSP. I'm told PSP patients usually die from injury in a fall from which they don't recover or aspiration pnumonia due to swallowing incorrectly. Swallowing is another issue with PSP as the disease progresses. It's a long road with PSP with lots of curves to navigate so fasten your safety belt. Since each patient progresses, or can progress, differently there is no map of what's ahead and when a change will happen unfortunately. One person might have speech issues early on where another might not have that issue for some time. One person might have swallow issues while another at the same number of years/months in the disease may not. Wish there were some solid answers. We can know what the symptoms are but not the order they may appear. We can treat the symptoms but there are no meds or treatments for the PSP disease. Hang in there and ask all the questions and you will learn a lot from this group.

jimandsharynp aka Jimbo

[rochestermn in reply to jimandsharynp]

thanks for for your reply

[JudyJ]

I'm Judy from W. St. Paul, MN. I was diagnosed with PSP during August of this year. I'm in the early stages & experience several symptoms, and involuntarily falling backwards is one of them. In fact, last February, well in advance of the diagnosis, I was going up my staircase, & felt a big "whoosh" in my head & back I fell. There was nothing I could do to control it at all, or break my fall. I fell like dead weight into the foyer wall; I left a dent in the drywall. Off to the ER I went, which triggered months of testing to arrive at PSP. I had fallen, or almost fallen backwards several times before that. I still get that "whoosh" sensation like I'm going to fall backwards, but now I'm careful & grab onto whatever I can. I also am using a walker more so I have something to help with my balance. In fact, because of safety issues due to just this symptom, I've since moved into a one-level living environment.

[rochestermn in reply to JudyJ]

thanks for the reply

[peterjones]

hi judy i to am a psp sufferer i used a walker but i found that as my falling got a little worse the walker used to go right over my head always on an incline in my driveway so naturally i gave up

the walker before it finished me off just be a bit careful of it sometimes they are to light for our needs and especially being a backward faller just bear this in mind as i know its hard no not hard its impossible to control your backward movement \\\\ when you got to go you certainly go \\\ i think i needed something that was heavier on the front to hold it down a bit look after yourself take care peter jones queensland australia psp sufferer

[rochestermn in reply to peterjones]

thanks for the reply

[JudyJ in reply to peterjones]

Thanks for the 'heads-up' or should I say 'heads-back' on using a walker. I apologize if my attempt at humor offends you; for me, humor is a coping mechanism tho I know others might not appreciate it...my falling backwards episodes are infrequent as of now, thankfully, but the most dangerous. I do know that as this progresses, this symptom probably will pick up in frequency. Again, thanks for your response; it wasn't something I'd considered before.

[shasha in reply to peterjones]

hi i too had a lightweight type walker which i was always falling over with but have since got a heavier one with 2 wheels and a pair of rests which dos help a lot - it also has shaped grips for your hands

[Hidden]

Mum did much better with the seated heavy walker and I actually found out later on that the lighter ones should not be given to pw PSP. Although mum was given one of these for a short time she began to abandon it as she couldn't walk fast enough to the bathroom and lost her patience with it. We also found that twice she managed to get entangled in the lightweight one it to the point she was wedged inside and it took 2 of us to get her out of it.Unfortunately in Medway where I live there is not yet any awareness or training so it has been one long struggle to get things sorted out one way or another.

[jillannf6]

hi

everything has speeded up for me with the PSP

walking speech falling etc etc

but i have given up on the 4 wheeled walkers i had as i went over fwds 20 times or so outside on one short trip in the town cnetre

Never again!!

i am better wiith a good arm to hang on to when wlaking and use mu stiock as a comfort thing

lol JILL

[dllera]

Hello there - welcome to the PSP site but I am sorry for your need to be here. There are many initial symptoms with PSP and falling is just one of them. Most of us had years of doctors appointments before gettting the PSP diagnosis. Unfortunately PSP is progressive but it is progressive at different rates with different onset of symptoms for suffers. Many with PSP will plateu for a while before new challenges surface. I have attached some websites links for you to get more information. These are also good for your GP and anyone who will be participating in care to read.

pspinformation.com/disease/...

pspinformation.com/disease/...

[chacha1]

Great reading about experiences with walkers...my Dad is experimenting now with various types... I have to say though that, whlist I've found him a few times on his back with the walker on top of him... it has massively reduced his falls and allowed him to maintain some independence to get from A to B at home at least. His falls started 3 years ago - one spectaclular one before diagnosis over the top of the bannister and 9 foot straight down into the hallway - 3 broken ribs and punctured lung but still here. The first 3 weeks I was staying here (Mum currently immobile and waiting for urgent hip op) my Dad fell 15 times (crashing falls - bones made of iron I think). Now in the last 3 weeks with the walker he's only fallen 3 times. My heart was in my mouth most days waiting for the next crash somewhere in the house and now I am more relaxed. I asked Dad if he felt safer but like Jill, he just said he's used to falling so it doesn't bother him and the walker does take some getting used to. I feel better that he's safer of course but I'll take note of the comments about needing more weight at the front... makes sense of course.. I have to say it's also very easy to blame Dad for not leaning into it enough and walking around with it 1 foot off the ground isn't going to work either of course.. but the advise above helps a lot - thanks! Tan.

[aliciamq in reply to chacha1]

We have a wonderful U-Step walker. It is weighted in the front and has many wheels - It's wonderful for cruising and only goes forwards when the handles are engaged. It was given to us by someone who lost their loved one to PSP. I know this is an old thread but people like me often read them to gather information.

[aliciamq in reply to aliciamq]

My husband falls 3 big ones most days(98% of the days)

!!!!! I can no longer leave him home alone.

[camper]

I've been diagnosed with pure akinesia gait freezing. I freeze all the time and can't go out without my husband who I hang onto for dear life.

I've been lucky enough to have a U-Step walker, provided by the NHS. I use it around the home and find it marvellous. For anyone who falls over a lot it's a must! .

[veronica_gp]

eed not fall backwards. If there is to be found when falling or unstable walking early, something that does not occur in Parkinson's disease (seen but belatedly). Alterations in the eyes appear a year later or more (usually before 5 years and this is not seen in Parkinson's). Psp and sun parkinsonism and these give early gait disturbance. I have also read about a chub which ranks Psp in 3 types (I will send it shortly). Greetings and my support.

[ultramodern]

Hi there ROCHESTERMN Ireally can't add too much to all what our forum, friends have to say about falling.Whether it's falling forwards ,backwards ,or sideways its still falling and I recall my bride was ever at the MD for stitching up steri-stripping ,black eyes.Broken nose...you name it.

I recall once when my bride looked as though she'd been a few rounds with Mike Tyson, the next day we were booked to go on a cruise. We had to get a wheelchair to get her on board.Needless to say I got a few very nasty looks from other ladies as if to say...'It's all well and good that wife- beater (me) almost kills the poor thing and then has the audacity to take on vacation to be forgiven!'

Even the ship's Doctor actually asked her if her husband was given to violence!

We sure had a good cruise and a good laugh about it all along.

Finally rocherstemn with PSP you should always try to be one step ahead of the disease.

There's a time when your Dad can manage a a stroller to get around without falling....but before he gets to the stage where he' s strollin' n 'fallin' you must get him into, if possible, a battery powered wheelchair. I think the scooter type is a bit dangerous.

Then after a while Dad will no longer be able to steer it by himself so when you go for an outing someone will be in control from behind.

I know its hard to imagine that your Dad ...who's been a pillar of strength all your life --is going to lose his independence .Totally in the last stages. But that is the ghastly truth about this debilitating malady...that saps everything out of you inch by inch.

But keep calm and carry on...PSP doesn't last for ever.....sometimes 3-4 years at most after diagnosis...depending on the patient.

I'm so very sorry to give you all the bad news...the only good news is that I'm hopeful researchers and /or Big Pharma will come up with an anti TAU treatment one day.

Discuss with Dad whether he'd be willing to make a donation of his brain and spine to an American Brain Bank to be used in PSP research.

But I'm glad you got so many replies.....keep on the forum...we've people in the States like you in France like me, Japan...too. Ask anything...someone will hear your call, for sure.

Thinking about you and everyone with PSP worldwide. best,brian

[jillannf6]

Hi i have PSP and nearly always fall Fwds but imhave one fall per day backwards now

I'm not as good falling backwards as I don't know what is behind me send am gettin some new lumps and bruisesvwhich r invisible but I know they r there !!

Loljill

And a

[costner]

Rochestermn How is your dad doing now? My sister is in her 6th year with this diagnosis - fortunately I think her progression is slower than most. My sister has incredible balance and she has PSP/CBD. The take away I have from reading several posts: This disease does not look the same on everyone. Such a variety of clinical signs and symptoms. My sister has recently starting talking to herself.... actually I think she must be talking to someone imaginary. Recently I was watching her do it.... she looked at me and said " What?" like I was eavesdropping

on a private conversation. When she talks to her 'friend' I can sometimes hear a normal sentence, but mainly it does not make any sense. One time we called for her to come sit with us while we played a card game while she was talking to her 'friend' - she stopped and spoke articulately " I will be there in one minute as soon as I finish with this" This is a very long sentence for her.... and she said it perfectly.

Hope you dad is doing as well as can be expected.