Hi all
What techniques or strategies do you use to deal with falls? my husband falls at least once a day
dorothy-thompson
Falls: Hi all What techniques or... - PSP Association
Falls
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dorothy-thompson
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Hi, Dorothy.Have you tried physiotherapy?I believe it offers some help in posture and balance.Of course, you need to find the right physio, it's necessary for the physio to learn about the disease and focus in exercises that help the patient to be more stable.
What is physiotherapy?
Physiotherapy involves evaluating, diagnosing, and treating a range of diseases, disorders, and disabilities using physical means.Our neurologist told us that for psp patients, a physiotherapist should focus on exercises that help with walking, balance and getting up.
hiD as u know i have psp and there ealll is no pattern to the falls- i tjust hauppens ot em ona daily basis - and i have to live with it
all the usual probs are ou t of the wya - no stairs/ no rugs to trip over / ligting is a probelsm 4 me as when in the dark i tend to fall
(in fact when i go i just go and a split second b4 i know my balanc eis aprobelsm)
sorry ui cannot be mor ehelpful
(strss make shte fallign owrse)
lol JIll
I met someone who has Parkinson. It has been there for 10 years.She goes to yoga classes daily . She goes to office(of course she goes in a car) and does all household works. The decease has not deteriorated. i am 72 and having PSP. I started yoga in December and in 2 months I have result . MY NECK PAIN HAS A RELIEF.
Does he have a walker or a scooter? My husband has gone from his walker to an indoor scooter which has really helped in the falling issues. He still will have an occasional fall when he cannot use the aids ie: bathroom. His legs freeze a lot and just recently he is experiencing pain in his legs. Does anyone else have this problem?
Yes, I do. Most of my invountary falling is backwads; oh, I don't like those; they're so scary & feel like it's happening in slow motion. Doesn't happen that often, but fell backwards down 4 steps like deadweight into a sitting position, slamming my head/neck 1st into the foyer wall. I actually left a dent in the wall from my torso up; that was an ER visit.
It was either on this site or a site I was researching that suggested getting a walker that is weighted down in the front, to help counter-balance when the sensation of the backward fall sets in. I'm looking into where I can find one.
Also I had 2 falls last week, in the home, & luckily didn't hurt myself. They were not backward falls. The non-backward falls have been happening for about a year & seem to come in clusters.
The best way I can describe them is I feel like I have a powerful magnet pulling me either to my right or left...cannot walk a straight-line...and then fall to whatever side is affected.
Last week were both on my left. If I feel this kind of imbalance, I try to stay off my feet as much as possible, especially if no one is home. Or if up last week, used the walls or whatever was on my left to guide me as well as my walker.
I do like the idea of a weighted walker in the front, tho. I makes a lot of sense to have one under the circumstances.
As to freezing of the leg/legs, I haven't experienced that as much as one or the other just 'giving out', or feeling a lot weaker than the other. As to pain, oh boy, yes. All over. In places that don't make sense either. My doc explained that since this is a movement disorder as well as degenerative brain disease, it can affect any to all muscles, ligaments, tendons, etc.
He started me on a Fentanyl patch some time ago which has helped me much. It allows me to be up more often, doing things that make me feel like I'm still contributing, othewise he's been stead-fast on being up & active no more than 3-4 hours a day, then resting the remainder, but most of all, insists I avoid as much stress as possible even if it means telling someone "Doctor's orders."
Summergirl, scooters can be helpful but I'll share my experience. I took my wife to COSTCO and thought she could use the electric scooter/cart. We she ran into one display and nearly into two others so I immediately switched out to a regular shopping cart. The cart gave her more stability. I think that the reaction time of some PSP patients isn't the best and sometimes decisions are made slower than non-PSP people. Therefore the reaction time when about to crash some electric cart is too slow to prevent a crash. Not saying this is true for all PSP patients but I'm finding with my wife that her brain works fine, memory is fine, etc. BUT the response time to even questions is slower than a non-PSP person. She hits the walls (baseboards) in the house with her U-Step and I can just imagine what it would be like with some electric riding device. Just my thoughts.
jimandsharynp
My husband does well with the scooter for the most part, but I can tell you the walls and doorways of our house are evidence that he doesn't always succeed. His eyes close involuntarily so that poses a problem as well. He gets Botox shots in his eyelids every three months which has turned into every two months now. He has an appointment tomorrow. . Best to you and your wife.
Summergirlx476 (Linda ) B.C. Canada
hi summergirlx476 i have psp and my legs freese \\ when they do go i say out loud or to myself sometimes STOP\ i just stop trying to get my legs going until ive said the word then once ive stopped i go forward again sorry about the spelling of the word freese but some of my computer letters are broken just for the purpose i wanted the letter between L. AND X i hope this helps in some small way for your husband as it did for me \ good luck and best wishes to your husband anything is worth a try peter jones queensland
australia psp sufferer
Thanks Peter, you're right anything is worth a try. He does stop until he can go again but on occasion he seems to lose balance when that happens. Do you use any walking aids or wheels?
Summergirlx476 B.C. Canada
summergirl x 476 i like your title well mate i do use a walking stick not that it saves me from falling its just that in a crowd people give you more consideration i do have a walker and a scooter but find them to cumbersome to get out of the car \\ i also take 25 mls of virgin coconut oil
per day \\\ i left off my coconut oil to see how i was traveling i had 8 falls in 4 days so i went back on it and for two weeks i have had no falls i have come close to it but have regained my balance now im not a seller of coconut oil i have no share s in it but it seemed strange that i had that many falls when i left it off and a few close misses when i took it so i will be taking it now permanately i also go to physio \ balance group once a week and speech therapist as well but they did say to me we will not be able to cure you but we will try and keep you going as long as we can which i believe they have done i started falling backwards in 2004 i have been going to them since 2005 i think they must be sick of the sight of me \\\ but they sure have got some patience i can tell you \\ but anyway tell your husband not to give in stick with it i wish him all the best and yourself
i know its not an easy job being a carer and lastly loved your country we had a wonderful holiday there a few years ago peter jones queensland australia psp sufferer
Both me and my husband use coconut oil as well. We haven't gone off of it to compare the results but I feel good using it. Good for you that you can manage with a wlking stick. Gerry started out with a cane as well. I don't believe he could walk on his own anymore. I think you are wise to keep up with physio as long as you can. Thanks for your well wishes and happy that you enjoyed Canada. As faraway s my name goes it just came to me one night while investigating this site and a couple glasses of wine. Haha
Verbal coaching works well for us - and vigilance on my part. Counting steps out loud - stopping - taking deep breaths - pausing before the running takes hold. Going around corners is horrible so we need to Stop and Pivot! Only one of us seems to remember that : / That'swere the vigilance kicks in
I had to get my husband up off the floor three times last night (going to the bathroom)and right off the bat early this morning in the kitchen!!! Hijole!!!!
My husband has PSP. The community physiotherapist has been helpful in helping him keep mobile, but he never moves without using a walking frame. He's very slow but can be independent. The physio has given him exercises to do to try and maintain his muscle strength,Kathryn
Dorothy-thompson
Thank you all for your replies. It is very ironic that physiotherapists have been mentioned, Harry has seen quite a few of these since he was diagnosed in 2010 but to my knowledge not one of them mentioned physio in relation to his falls, until yesterday when we saw a new parkinson nurse at our local hospital's falls clinic! So hopefully we will be referred to the community physiotherapists.
Harry has a rollator - we call it his cart - and most of the time it does keep him upright and someone is always around to supervise him. The worst falls generally happen in the middle of the night - when he gets out of bed to go to the bathroom - forgetting he has his conveen on - he is disorentated and confused, falls and I have the devil's own job to get him back into bed. He is 6ft and weighs over 11stone and unfortunately the technique of how to pick a prone person up unaided was never on my school curriculum!!
Judyj - what is a Fentanyl patch?
regards
dorothy-thompson
Dorothy, I find that when waking up it is best to let the person sit on the edge of the mattress/bed for a bit before attempting to get them up. I always ask my wife are you ready to get up or do you need more time? Just a thought. Their brain works but slower than a person who might just put their feet on the floor and get erect to walk.
jimloveswatercolor
Dorothy, My husband was also diagnosed in 2010, is nearly 6 ft tall and weighs 16 stone. I'm 5' 4" and also have a terrible job picking him up off the floor. I told the occupational therepist and have been loaned a Mangar Elk. This is an inflatable cushion and as long as my husband can roll/shuffle onto it, I can inflate it and raise him to a sitting position from where he can be helped to stand. I've used it many times and take it away with us when we go on holiday. During the day, to help avoid falls, he uses a walker and I walk behind him with my hands on his hips. In fact, we can often be heard humming the Congar tune and freinds have even joined in putting their hands on my hips. My husband finds it very amusing and it makes him laugh. He even starts the humming if I don't.
He has been given exercises to help his balance but finds them boring and I don't like nagging him to do something that he thinks don't make a difference.
x
I would like info on getting someone up!!!! My husband is large and my knees are having a huge problem - what am I doing wrong??? I use a sheet and a stool - It is very difficult - his arms don't work very well either.
I came into assisted living a year ago and they have gotten me up when needed but have brought most of the falls to an end. By putting me in a wheel chair and getting me poles which are beside my lift chair and bedside to help with getting up and down and transferring. The falls began four or more years ago and were happening several times a week when I gave up and came in here, after breaking much furniture and a couple of bones. They were as described, sudden and as unexpected as could be, Sometimes to the back or side but sometimes I would pitch forward too. I was using a walker when I came in and exercise hard to save my legs since I am in a chair all the time now. However I notice that I am getting weaker and am no longer able to get myself up anymore. One of you, also a psp patient. It is so great to be able to communicate through this blog isn't it? Lucille, USA, MN
.
Physio's and OTs should know how to get hold of a u-step walker - the weighted walking aid that helps people with PSP. If your local Falls Prevention service attached to your local hospital does not have the ability to refer for one due to funding problems, they will be able to get the information about them for you to consider funding yourself.
If all else fails, because it is happening in the night I would get a motion sensor. You can get them for beds/chairs/floor and it's an early warning system for your peace of mind. I found it was absolutely pointless telling mum to use her walker/wait for a carer or myself to come/ stay in her chair for a while. She would just do it randomly and it got to a point where we couldn't leave the room at all. I had to put her into care as I knew I would have to do it all without help and I wouldn't have coped. Mum is a big lady-5ft 11 tall and if she is in a small room she is almost guaranteed to hit her head on a wall when falling. By the time I persuaded her to go into residential care it was breaking my heart as she was covered in bruises and cuts from accidents but deterrmined to stay independent! The weighted rollators are a godsend for actually walking safely with but they still need supervising. Mum used to gather speed whilst veering off to an angle and that itself was a recipe for disaster.
The physios were very helpful but none of them offered 'therapy' and only watched her walk and tried (to no avail) to teach her new methods of rising /walking etc. alas now we miss those days as mum can no longer walk. But it was a worry when she could.
Dealing with falls is the worst part of PSP. Many PSP patients fall, get injured, require surgery (hip, knee, etc.) and never fully recover to where they were before surgery. There is a item called a "Gait Belt" you can use to help prevent falls. It goes around the waist of the patient and is about 4 inches wide. You can grab the belt if you are assisting the patient. Why a belt? Because if you are holding an arm or other part of the patients body and they fall you could do more damage than the fall itself (dislocate a shoulder, etc.) In my opinion you must be using a U-Step walker for PSP patients. Unlike rollator walkers the U-Step doesnt move unless you grasp the handles so the break is ON until you are ready to move. Rollators are the opposite, you have to grab and apply the break handles to stop rolling/movement. U-Step stops if the person falls and lets go of the brake levers. It also won't roll away from the patient unless they want to move forward. I've had my wife's rollator walker roll out into the street when she lets go and is getting into the car. I don't own stock in U-Step or have relatives there or anything else. I'm just trying to give some good advice that someone gave me.
jimandsharynp
Dorothy:
A Fentanyl patch is an opioid (narcotic) pain patch. You place it somewhere on your mid-section and it delivers a constant & consistent dose of pain medication; I change it every 72 hours. And it's addictive which made me wary at first, but what we (me & my Doc) are shooting for first is quality of life.
It allows me much more freely to get up and do even the simpliest of things I haven't been able to do in a long while. I also have pre-existing problems with my hips and knees (malaligned) that have given me trouble since a young girl; I've had several surgeries & a hip replacement but Grade 4 arthritis in the other 3 joints. They need to be replaced as well tho I doubt I will have those surgeries; my body is strained enough.
My symptoms started 2 years before I was diagnosed & really started escalating a year ago. Aside from falls, eye-tracking problems, & cognitive problems, I started feeling pain in places I never had before; my shoulders, upper back, etc. I honestly thought my arthritis was invading all over, but much of the pain was also in muscles and not following any exercise; in fact, I was pretty limited with what I could do before the diagnosis.
Both my long-time ortho & my internist only gave me oral pain medication on an "emergency basis", about 10 pills. And each time I asked for help, I had to hear another lecture on "the prescription pain medication epidemic" and/or "the number of celebrity deaths due to prescribed medication.". And this related to me how? I was so miserable for a number of years from pain 24/7. Pain would even creep into my dreams and then wake me up. Rarely slept for more than 3-4 hours.
I would tell them time and again I wasn't a medication seeker; I was truly in pain. And because of my pain, my functioning was maybe 25 percent, rarely left the house, and was being treated for depression. I needed relief. I would tell them there shouldn't be a group punishment by withholding pain medication from the population who needs it but doesn't abuse it. Deaf ears.
I had stomach trouble for several months before I saw a specialist almost a year ago today. He did an endoscopy & found 5 areas of erosions in my stomach from long-term use of NSAIDS; i.e., Ibuprofen & Alleve which help with both pain & inflammation. He cut me off cold from using them; said I was very close to bleeding thru my stomach wall in a few spots if I did use them. But what else was I to do??? Getting pain meds from a Doc here made me feel like a criminal. And I'm not.
As soon as I stopped taking Alleve was when I got slammed with intense pain, and just in the hips and knees. I can honestly say I was suffering. The backwards falling started not long after that, then the neuro testing started. A lot of it. I was 53 at the time.
What was also happening without me being aware of it (and no one mentioned it) is I began walking very slowly, in a very stooped position. It hurt to be up, it hurt to sit down, and it hurt to sleep.
Over time, the base of my neck would have a sudden onset of intense pain. I was scared to death; didn't know if it was a stroke or whatever. I literally couldn't move my head at all. Saw my doc after a couple of rounds of this. He said because of my eye-tracking problems, I began naturally holding my face in a chin-up, head tilted back position, & was pinching a nerve. Aside from the intense events, it just generally hurt. Gave me a muscle relaxer for that tho I may have to have a steroid injection going forward.
I was unaware I had eye-tracking problems as well as not blinking much if at all which caused my eyes to dry out to my corneas, creating damage, which took a long time to correct. And, was extremely painful
Here I am rambling about my pain. Sorry. It is sort of safe to do it on this site, isn't it? My pain has been obvious to those around me but I don't talk about it. Didn't want to be a whiner, so on and so forth, but I would cry myself to sleep often. My pain was my normal but when the additional pain from PSP was added on top of it, I got very, very depressed.
I understand there is an abuse problem at least in the U.S. of prescription pain medication. I get it. What I don't get is why I, or anyone, should suffer because too many doctors over prescribe them, and too many people abuse them. But there is this percentage of people like me who really need to have any quality of life.
With time passing, I feel I've lived a nightmare, particularly without pain management and being stereo-typed when I was suffering. It was my normal.
It was my Neruologist who suggested the Fentanyl patch; I became used to not asking for help because of the back-lash of scrutiny. It is to be used for people who have have chronic to severe pain and/or have trouble swallowing a pill. I'm in the earlier stages; swallowing is just starting to surface as a small problem, infrequently. Hope it stays that way.
So, for the first time I have a Doctor on my side who understands how debilitating pain can be and lead to even more problems due to being almost inactive, all of the time. I woke up the next morning after I put it on and thought to myself, "Am I dead? They say when you're dead, you don't feel any pain." I'm not kidding. It wasn't a bad feeling, it was the most glorious, liberating experience I've had in forever. I just didn't feel pain. Anywhere. I got up effortlessly, without my usual dread because of pain, and started doing things, as natural as can be. It was like a whole new world for me.
I also realised just how much of my energy and brain usage had been wrapped up in trying to cope with pain, hesitate from doing things because of pain, or just plain dread. And all that led to a whopping case of severe depression. It really was that bad.
My Doctor has me on the lowest dose he could put me on; I respect him for that. He did say going forward, I may require a higher dose but we'll cross that bridge when we get there. What I know for sure, even tho I have PSP, good pain management can up the quality of life in a way I couldn't imagine. On the other hand, he restricts me to 3-4 hours a day of activity, then bedrest and ward off all stress. He said it's the worst thing for PSP and can get it going in a negative direction.
So the downside is the risk of addiction. I'll take it. Suffering should be an option, not a Doctor's defense mechanism. The other is that it shouldn't be taken if a person has difficulty breathing. I may get there one day but not today.
If I've annoyed you, Dorothy, and have given you way too much information, I apologize. As well to my fellow bloggers who might've been rolling their eyes 3 paragraphs into this. I'm having more & more trouble with my speech and getting it out so it's understandable. But I can still write and it's one of the few skills I have left I feel I have mastery over. Can you bear with me, I ask sheepishly?
Dorothy,
Your question is the probably the most important one you can ask in caring for your husband. The falls are frightening and seem to come out of the blue, so I know what you are going through. My husband's were like crashes! I will add that the advice given by others about the U step walker is worth its weight in gold. Our neuro said the frame walkers can be too easily lifted so he prescribed the ustep, and it was covered by medicare and insurance. He was sent to therapy, and they trained him to use it. It kept him mobile for over a year. Best of luck in dealing with the falls. Take care, Rosemarie
I've been loaned a U-step walker and it's marvellous. They're very expensive to buy but I think everybody who falls should have one!
My wife is taking carbadopa-levadopa (stilevo?) and I've noticed that if she misses a dose it seems her balance and mobility are much worse. Anyone care to comment on using this drug and if it seems to help???
jimandsharynp
hi everyone
there is a lot of discussion on many issues over here and i wish to add to that.
as far as eye dryness is concerned i guess patients with psp should be regularly using lubricating eye drops..that really helps in protecting them.
and yes if u miss ur carbadopa levadopa dose the effect almost wears off fast and the person can fall more frequently and become lethargic.
i would request anyone of u whose using the u step walker if they could email the image of how it looks like to me on my email id mentioned below as i would like to procure one for my father.
also i am in favour of pain killers for the sufferers as it really helps them shift their focus from pain to rehab and keep their spirits high.
and yes psp z differentiating feature from parkinsonism is the tendency for backward fall...but that doesnt imply that the person cant fall forwards..so the caretakers have to ensure to be maintain their flexibility knowing that the pt can fall eitherways.
also what i have noticed is that response time is slow with psp patients
even if they r having a fall and they have something to grab in front..still their hands will we near their body and wont lead forward to grab the support or prevent from falling...so that has to be taken care of...another important thing to understand is that since these people can fall backwards or sideways...and less often in the front..whereever u seat them just make sure they are enclosed by knee height objects on which one can sit onall three sides except front so that even if they fall while getting up..they do not hurt themselves much.
also another advice for the caretakes is to not share each and every detail with the patients as that leads to psychological weaknes...everyone knows they have to die but no one thinks abt it and it suddenly strikes one day...similarly our focus should be to make our loved ones live each and every day as it comes and enjoy as normal beings and not treat them as patients...tell them that as we need clothes on daily basis...they need a few things extra on daily basis like medicines and therapy and support and otherwise they r normal and living a good lifestyle..just that balance is an issue so we have to prevent falls.
all those who r suffering and reading this i would cite an example...my father is suffering from psp and he knows abt its prognosis..stilll he believes that what matters is that each day he has to enjoy like a kid...his working days are over and now he has to live it to the fullest..i do understand that this might be really difficult to incorporate but its also a duty of the caretakers to keep them stress free.
regards
Dr. Manak Gupta
email: manak.gupta@gmail.com
ph: +91 9818774560
My husband never puts his hands up to save himself!!!!!!! I have taped handprints on the doorways as an reminder to no avail 
My husband uses a Kaye walker to stand and walk short distances (around the shops, home and local park). We hired one from the Independent Living Centre and then purchased one. It has been extremely useful for approx 3 years. The Kaye walker is a walking frame that fits around your sides and back of your body. John says the sound the brake rachet makes (a click, click sound), the hand grips he has to hold on to use it and the metal bar that touches his bottom have all forced him to stand upright and move. John tried the more 'standard' walking frames that are used in the the front of you, however they were quickly dismissed as John would fall into them and go off balance. When John is not using some type of equipment he describes how there is a permanent magnetic pull that he continually fights against. He also states that he is in permanent pain and just using something, even a walking stick for three steps is a good distraction. We have not heard of anyone else with PSP using or trying a Kaye walker. I saw it on the Internet, and thought why not give it a go. For us, it was an expensive purchase, but worth every cent.
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