How many times do other people that have PSP fall?

[Sue20045]

My dad has PSP and this week he has fell nearly everyday if not a couple of times in one day, to get around the house he holds onto parts of the furniture. I just want to know if there's anything we can do?

[Hidden]

Hi Sue

My husband fell over more and more as time went on. It got to the point that he fell over at least once a day and sometimes two or three times a day. I bought him a three wheeled walker and this helped for quite some time. It also enabled us to go for walks for the sake of getting him out and about and also to keep his muscles supple.

His falls eventually got so bad that we were advised to get a wheelchair so that he could get around the house. I however kept his walker to take him for walks, right to the end.

I hope this is of some help to you.

Regards

Lina

[kay1]

We now have a wheelchair for Frank, he can stand but with assistance, you will need help.

x

[Sue20045]

We have a wheelchair for him that we use to take him to the shops. But he won't have a walker for inside the house even though we've told him he should have one

[Garyvard]

At our doctors request I kept a record of falls and in a two-month period my wife fell 61 times. We had gone from a stick to a two wheeled walker and then to a three wheeled walker all to no avail. I have no virtually eliminated falls by acting as a safety net when she is using the walker. This is pretty demanding but at least we'll avoiding the falls. We have had a wheelchair for some time for external use but I'm now considering a smaller chair for use in the home. I have come to the conclusion that in dealing with this horrible illness there are no ideal solutions it seems to be a question of choosing the least worst option. Maybe it's small consolation but one of the advantages of this forum is that you realise you are not alone.

Regards

Hugh

[Sue20045]

Well my mom did make a note of when he was falling but that was at the beginning because we didn't know what he had. He just won't accept that he needs the help and my mom is there to help him up but even then he says he doesn't need help. So we just don't know what to do for the best?

[Garyvard]

My wife was a strong, energetic capable woman who know needs help with eating, toileting, showering and dressing. and although she has mild dementia is still away of what is going on. I just can't imagine how she feels about needing this basic help and maybe it isn't a surprise that at times she resents the help and tries to do things on her own.which often results in making a bad situation worse. I know I'm not providing an answer because I don't have one I just try to do the best I can and sometimes this means insisting on giving help even when it is resented.

Regards

Hugh

[Sue20045]

Yeah I know what you mean, thanks Hugh

[MJ-Mark]

hello Sue

My Dad falls too. However, we have installed grab bars on lots of walls, especially in the bathrooms. Also, we got him a lazy boy chair that lifts him out. that certainly has helped. We have eliminated the stairs for him by having a rather expensive chair installed that takes him up and down. Also....he is never alone anymore. Even for him to sit at the table, we have to stand behind him, place our hand in the middle of his back to stop him from flopping into it. When he wants up, same thing.....

Its a tough thing to eliminate all the falls, but we are trying our best. good luck to you!! Hope I helped.

MJ

[jillannf6]

Hi Sue

-i have psp and at worst fall 3 times daiily-more upsettign for the onlooker than myself

I fall fwds and on a slope outisde I am paranoid about fallign and tend to freeze making the situation worse

But grab ails are a help insideI

AS i tend t fall fwds knee pads(as usd in break dancign )protecet my knees

Plus I use a walker outside and insde ( 4 wheeled ones give more stability and are better if u r tall)

Being careful is not always possible and i always know if i carry antyhign i might fall as my balaance just goes-so generlayy use a trolley to carry things insdie

Take care

Love jill

[susangillies]

Dear Sue,

I have got PSP and I am sorry about your Dad's falls. Until June of this year I was falling three or four times every day, always in either the kitchen or the bathroom, never in the carpeted lounge! Then my son, his wife and her two children came to stay. My son had me walking up and down the kitchen loads of times holding on to a couple of walking sticks. Then we bought a three wheel walker which I use in the house and hang onto for dear life. I have to say that I now only fall down a maximum of only once a week.and always in the bathroom. I hate the bathroom! I have also been to yoga and Alexander Technique which I think are important for balance.

I hope some of this will be of interest to you.

Take care.

Sue.

[PSPA_KatH]

Hi Sue

So sorry to hear about your dad and his falls.

It is difficult to know what to do for the best when someone is experiencing falls frequently especially as it is important to keep as mobile as possible for as long as possible-safely.

Some of the suggestions on here are worth trying particularly the yoga and Alexander techniques. Another suggestion would be tai'chi which can also be done seated if there are balance or fatigue problems. Anything that keeps the cardio-vascular and the respiratory systems functioning can help. Gentle movement also has the benefits of helping maintain muscle tone and flexibility so seated leg exercises may also be beneficial to help keep the leg muscles toned. This may then help to support your dad when he is standing up and walking.

Above all make sure your dad's environment is as safe as it can possibly be. Remove clutter from the floor, get rid of non essential furniture especially if it has sharp corners like low coffee tables, remove rugs, make sure footwear fits properly. Simple things but very important. It will all help your dad be able to move around without having his concentration distracted.

It is also essential to get some good advice on posture and mobility and correct equipment from the physio and the OT and he might possible benefit from a referal to the falls clinic who can also advise on falls prevention, walking techniques and protective equipment.

I do hope this has been of some help to you.

[IsraelZehavi]

hi .,

um furtely itis part of this dises

i have it for the lss5 yearys /. tyhir is dayd that i am falling up to 6 timmes and im another days i am not fasllimng at all ,this are very rare..' the trick with this fslliong is to have protective gear that prevents me from breaking bones like a helmet, especially underwear with protection for tailbone and hips and elbow protection and back protection, and to put bars at home anywhere that your father goes. If you want more information about protective gear please go to my name on the message board and you will find a very detailed response I wrote about the gear.All the best. Don't give up. The key issue is exercise, exercise, exercise. That's what will keep your father going.

All the best,

Israel Zehavi

[Sue20045]

yeah it's mainly in the bathroom he falls and we do have grab rails where possible. But he still seems to fall. Thanks for all your suggestions

[SheilaN]

It's a tough one but over the last few months I've learned that the only real way to prevent my husband falling is to walk behind him all the time. He has a Delta walker and a wheelchair outside though goes out less and less. Inside he has a zimma (sp?) but can still fall so I follow him. His OT recently gave us a canvas lifting belt which has 4 grab loops on the back and gives me a secure hold (rather than grabbing him or his clothes) and gives him a little more security as well. However because he has dementia symptoms he sometimes gets up for no reason he can explain when I'm out of the room. Then he falls more often than not and has sustained some nasty cuts. He's also missed the slate hearth by a miracle. After every fall he loses confidence in walking and generally deteriorates a bit more. When he does fall he is always the least concerned and always says he doesn't hurt. Our PSP nurse has a theory that PSP patients have a higher external surface pain threshold. Eddie certainly seems to .

Anyway all I can really suggest is that PSP patient needs a lot of close supervision but for some this is not possible. I feel for you because this is a constant worrry. Take care

SheilaN

[Jeff]

Jeff falls constantly and has for 2 years now. That was actually the main indicator to the doctor that he did in fact have PSP. We went from a cane to a walker to a bigger walker and now he is permanently in a wheel chair. He wears a helmut and has to use bars in the bathroom and a pole to beside his bed to help to get him to at least a sitting position. He now requires 2 people to get him a bath. Even with all this, he still falls several times a week. He has been lucky not to break anything but he has had very serious contusions and cuts and even a black eye. It only takes 1 second for him to go down so no matter how careful you are........he still just crumples.

Anyone that is still in the cane or walker stage that freezes, we found a funny solution. When walking beside the person that freezes, just set your foot across the front of theirs and that gets them going again! Make it like they will have to step over your foot to proceed. It was amazing. The number of times that Jeff and I held up and elevator full of people because he froze and couldn't go and this simple little trick got him going again! Silly but affective.

[susangillies in reply to Jeff]

Dear Jeff,

I had to smile when I read about the elevator because the same thing happens to me. When I go to King's College Hospital in London the lift comes down full of people who stare at me, whilst I struggle to move and hardly ever can. 'My husband usually tells them to carry on. It is very embarrassing. So thank you very much for your tip; as you say it is a simple little trick, but marvellous if it works. I will certainly try it when I get up from the computer.

Take care,

Sue.

[jillannf6 in reply to susangillies]

hi Jeff

a great solution to the freezing

I shall ttry it when i next freeeze

THANKS for that

love jill

[Jeff]

Hi Sue,

DON"T be embarassed! The number of times that Jeff said the same thing, I would just get mad at him and tell him that people didn't mind so much. If they have to wait a couple of minutes to get him in.......so what! It makes them stop and think that it might be them or a loved one in the same situation one day. PSP is the most horrible disease ever!!! It teaches me lessons about life every day. The biggest one is love what you have now because you don't know how quickly it can be taken away. Its frustrating to watch Jeff who was a financial success, an energetic world traveller, and a loving father and husband be diminished to a crumpled man in a wheelchair. He can't get to the toilet by himself any more, he can't write, he can barely speak and needs assistance to eat a meal. His spirit is still feisty and he still bosses everyone around but the bite has gone from his bark. I tell him I love him everyday.

Hang on Sue, its awful but it sounds like you are surrounded by love.....that really helps.

Sheri

[salman]

my dad has been using a "u-step" walker. it made a world of difference in his mobility. he is now at a stage where he will generally fall if he is unaided. the difficult thing is that he still, in spite of many falls, will continue to get up impulsively without assistance. can't figure out why he thinks he doesn't need support when he knows he absolutely does.

[jillannf6]

hi sue

i am now falling 24 times a daa (since 2 sweeks ago) a REeally! and am not t2 sure of the cause

My balance si terrible and i am having my ears sytringed (wsx probelm and my hearign is worse - i have hearing aids anyway)

But it may be a worseining fo the Psp - it is v distressing f ranyone to hear or see

ove jill

[jillannf6]

hi sue

i ahd my first bad series of falls outside yesterday walking for about 20 mnutews with my 4 wheel frame in town - never been a probelm b4 but ie kept falling on my knees which were very bruised by the the time i got to deisttination the hairdressers

And forr the 1st time i did not get much assistance form anybody - they al l passed and asked if i was ok and i said i was not - obviosuly o n my knees in fornt of my frame

and ifnally 2 great school boys stopped helped me up a coupel fo tomea turned roudn , camne backl and g ot tme over the last road i had to cross and, then wen t in to the hariredresssers to tell them

I was io tears when i saw my firends the 2 hairdressrs - famaili r lovely faces and so concerned anbout me

But the boys were wonderful - and i cannot praise them enough]

I shall write to the lcocal newspape rto hank them!!

A lady stopped with me ssyigngji shouold not be out on my own =- i shall take a taxi in future for this mini journey!1

[jimandsharynp]

I purchased a walker (Rollator with wheels) for my wife and she uses that around the house all the time now. That has reduced the number of falls a HUGE amount.

[timinsuranceman]

Gosh, Sue, a lot. Before I was diagnosed, one of the first things I noticed was this weird imbalance and I just couldn't get from A to B without holding onto the wall. People at work quickly noticed and as I was only in my early '40 s at the time, I suspect my colleagues thought I was some sort of drunk - until it was obvious that I wasn't. If I am somewhere I can't use my wheelchair, I use crutches but it's still pretty perilous! Sorry

[bsilverman]

My husband stopped falling when we put him is a wheelchair. I was resistant but now he feels more secure.