My husband is falling on average 4 times in 24 hours, I really struggle to get him up. I have an elk cushion but it's not very easy getting him on it, I've only managed it three times in 12 months, it's next to useless for one person if you don't fall in the right place or position. I struggle with heaving ,pushing and a manual handling belt. Today I can't lift one arm and I know my back is weak. Can I ask how others manage ??  Do you call an ambulance and if so do you call 999, if he's not hurt I wonder if this is acceptable and what the reaction would be to several times a day and in the night!! I'm at my wits end. X

61 Replies

  • Yes just call 999 they will come but might take a while.  Since George has been in the wheelchair we don't have any falls .  Look after yourself get to the doctors, you will ware yourself out.  Yvonne xxxxx

  •  I have also hurt my back and arms, so I know how hard this is.  My sympathy! Does your husband get around much on his own? Can he help himself up at all?

    For what it may be worth, the physical therapists have tried to teach my guy how to get up from a fall, with mixed success.  According to their instructions,  I try to get him to roll over so he can get onto his hands and knees, (with a blanket or other padding to protect his poor knees) then I push a stool or chair over so he can haul himself up on it. I sometimes have to help him roll over, not easy, and to position his feet so he can raise himself. Sometimes this works well.  I often threaten a call to emergency services or the neighbors, but so far he always makes it up in the end. 

    Like Yvonne's George, now that he spends more of his time in a wheelchair, he doesn't fall nearly as much.  There was a time when he was constantly, shockingly bruised all over - I was sure I was going to be accused of abusing him -  and some bit of furniture was getting smashed every few days.  Of course the decrease in the number of things available to be broken has helped!  But mostly the solution is that he isn't moving on his own at all any more.

    Like everything with psp, the conditions change. I hope you find a way to protect yourself while this phase lasts.

    Love and peace, Easterncedar

  • Ah, Thankyou, I think this is about what I manage to do, if I can't get him on his knees then I have no chance, then I have all the weight to haul up, he can give no help at all.  He can shuffle the 10 steps to bathroom a dozen times a day and he may or may not fall, at night it's while he gets out to commode, we've tried a bottle his coordination is shot and this lands on floor or gets tipped down the bed. Likewise he can't use a walking aid , he has no sense of direction to steer it.   Most times I'm about it's usually if I've gone in garden or garage , it's so exhausting isn't it , I'm fit for nothing after getting him up and he's cackling with laughter like a chicken, that's another thing , inappropriate laughter. Dear God, I pray for help for all carers. Xx

  • Have you thought about a catheter?  one thing about it, it stopped my guy getting up to (try to) pee all the time, and I haven't had to replace a broken commode all year.  wee-ha.  I promised him it was a temporary solution to the problem of my getting no sleep and having to change the bedding twice a night, and it was.  The catheter has now been removed, after his having it a couple of months, but he generally doesn't try to  get up to go any more, day or night, and with the doubled incontinence briefs, plus guard, its generally okay.  Manageable, anyway, and there have been a lot fewer falls.

  • I think this is the next stage for us, we have been referred to the incontinent nurse and we are waiting for her to call. It would be such a godsend as he is weeing every hour through night as well. We have doctors appointment Thursday so will pour out my woes and see if things can be hurried along. Thanks for replying xx

  • Hi,

    Oh my goodness this is like reading something I have written myself. My dad manages to get himself to the bathroom through the day but not a chance on a night, it is like his legs forget how to work once he has gone to bed. Also the lack of co-ordination to use a bottle etc so I completely sympathise with you.

    As mentioned by easterncedar, we manage to get my dad up by rolling him onto his side and getting his onto his knees otherwise he is a dead weight and we have had to call for an ambulance on a couple of occasions. They have been helpful and have not be resentful of it not being a typical emergency situation however they have not always been quick as other situations are classified as a priority.

    Take care of yourself as carers are so important and the paramedics understand this.

    Bw Hayley

  • It's exhausting isn't it? I have had to give up gardening. If I go anywhere in the house, I often use a baby alarm with screen, or make sure that he is watching snooker or something that will keep him focussed. He has a convene and all toileting is done with my intervention. I have come to the conclusion that the more I do, the more time I have to do other things. It's a crazy, crazy life with PSP! Good luck.X

  • EC I am right where you're at.  I don't have much furniture to break and I have found that rolling B over onto hands and knees workds very well.  He wears elbow and knee pads so thats a big plus.  The biggest plus is prevention.  Like your man, B does not go anywhere without me.  He uses his walker and  I guide him. if he starts to fall , I am there.  So GW 1947, give those two things a try; walk with him everywhere he goes....you'll get used to it; And both of you learn how to roll up on the knees....give him elbow and knee pads!


  • The knee pads are an excellent idea....thank you x

  • Knee pads might do it!

  • Hi I found that any time he was up and about I was hot on his trail so no falls occurred.  We now have a Sara Stedy if he wants to go bathroom etc x

  • Yes, dial 999. I have many times and they use our Elk to get him up. The paramedics always say never try and lift him myself. They don't want carers injured, we are too valuable.  When C was able to get around, he had pressure pads under a mat by his chair and another one he sat on. They both made a handset, I had clipped to my waist, vibrating and buzzing, if he got up, so I could rush to him and help him walk. He also used a walker which helped. I stopped him falling very many times once I had the buzzer.  A few months ago I said he didn't fall any more as he was immobile, and then he dived off his commode chair which meant another 999 call.  You wonder what the reaction will be if there are many call outs.  If you ever claim CHC, knowing he has fallen a lot will help with the decision making. I showed all the call out forms and it was noted on the form.


  • Thank you , that's very useful to know, I've hesitated with 999 call , thought I'd be a nuisance especially when I have the elk to use, I feel pretty useless, but it's really having a toll on me now xx

  • Hi, yes! Yes! Yes! dial 999!!!  I have only had to do it the once, but they were so nice. I felt awful, but like NannaB said, they would rather come and pick one person up than two!!! They stayed with S for a good couple of hours, making sure he was OK, checked him over thoroughly.  I was left with the impression, that they were more than happy to come and pick someone up, even if there was no injury!  Even more happy, to know that you have an Elk to help them!

    As to stopping the falling, bar chaining him to the chair, all you can do, is get alarms in place. S has a pressure pad under him, (from the OT). The only problem with that, was S thought he could still just get up and I would be able to catch him, he forgot about the time it took for me to reach him!!!  EC's suggestion about getting the OT to come and help with suggestions for you both, one to keep him safe, the other on how to get him back up from wherever he has landed!!!  Do you have CHC funding yet?  If not, make a note of all these falls, what he was trying to do at the time and the injuries sustained!

    I take it most falls are due to toilet visits.  When you see your continent nurse, ask about a convene.  S now has a permanent Catether fitted.  Oh, it's the best thing since sliced bread!!!  You say he can't manage a bottle, perhaps it's time that you took control over holding it! Until you can sort out what the next step should be.  The only good thing about time rushing on, the falls decrease as they struggle with moving.  Although S is still very capable of kissing the floor, when he puts his mind to it, even though he is wheelchair bound now.  Still reckon chains are the best solution, do you think the OT will provide them!?????

    Lots of love


  • You made me smile Heady, as for holding bottle I can do that except it's every hour all night , prostrate trouble has been ruled out so it's been put down to the psp. I'm up about every couple of hours and I'm so waspy next day if I'm tired. I think I'll try the elk for few mins and if difficult I'll call 999, seems that's what others have done. I was thinking they would say it's not a real emergency. Xx

  • I remember those evil nights only too well. How I got through, I have no idea, but I did, so will you!!!

    That's all you can with the Elk, is try.  If you can't get him up, then, make no bones about it, it is an emergency.  You will have a sick man, stuck on the floor, with no way to get him up.

    Lots of love


  • If prostate not a problem, perhaps a straight catheter might work. You use it to drain the bladder at bedtime and then remove it. My guy's prostate got in the way, which was a shame.  I really wanted that to be the solution, as the permanent catheter poses some significant problems, not the least being his inability to leave the darned thing alone.

  • Thanks for making me laugh, Heady. X

  • Agree with everyone call 999 for any fall, to save your back and reduce any chance of further harm, but also call 999 for any major choking episode even if sorted out while on the phone to control room.  As Heady and NannaB said the logs are very good evidence for CHC claims.  The paramedic and ambulance staff always say it is better to call them as choking can cause other complications.

    Good luck Tim

  • Thanks , I will, we have had no choking episodes or even eating difficulties as yet. It's mostly balance, coordination and dementia type issues to date x

  • We have a council alarm system. It costs different amounts in different areas. I have paid for it for about four years and only called them out once, but as my back is fragile, and I made it worse by lifting wheelchairs into the car boot etc. I consider it to be an insurance policy. I also leave the cord and neck button at the side of our beds at night. I have told my husband that if anything happens to me in the night, stroke, fall etc. he can press it. His speech is poor, but if they get no response, they will notify our daughter and/ or come out to us. My mother has one and they came out and brought her a comode when her stairlift broke and she couldn't get up to the toilet. Do be careful with your back! Take care.X


  • Thank you, we have telecare system in case of fall it calls me, then family and emergency services if none of us answer, I smiled the other night when my husband told me to press it, it would have rung my mobile. X

  • Hi, well there is a lot of good advice here.  So I am just adding a little.

    First off with PSP a Mangar Camel is far more useful than a Mangar Elk. 

    The Elk is like an inflating stool.  The Mangar has back support and is like an inflating chair.  Far easier to keep someone on it as it inflates. 

    Next, yes that whole weight thing and getting someone onto it.  I have the same problem.  I get my partner to roll onto one side as far as she can. I place the Camel behind her and she rolls onto her back and onto it.  Might that work for you?

    Start the inflation with the back support with yourself behind the 'chair' so to speak.  Now it is easy to hold the top of the back of the support to keep it steady whilst inflating the underneath parts.  Doing it this way gives finger light balance with one hand.  Trying to steady the person ans the good Mangar training man suggested means weight and struggling. 

    Failing that have you considered getting assessed for a hoist?

    I hope this helps a little.


  • Thanks, I actually watched a you tube video on using the elk, it was very good and gave good tips. Also learnt the rods can come out for ease of rolling patient on. Sometimes I manage it sometimes not, my husband is not able to roll to help, it's sheer pull and push. X

  •  Its a constant learning curve isn't it!

    I got another tip today (from a stern physio who saw the bruise on my wife's hip (rough landing in chair) - open the passenger window as a grip for transferring in and out of the car.

    Its tough eh?  I am hanging in here, hope you are too.

    good luck.

  • Coming back to this...

    We had a real struggle yesterday after a fall.

    I wonder whether a sliding sheet might help.

    Gonna get one gonna try.

    Any advice?


  • Hello Kevin, Yes a little....depends where one falls and how much room there is. I have got two sliding sheets from OT, one goes on top of the other and they have handles. I once dragged my husband on one all the way down a hall and into the lounge, it's very undignified!!!! It's still a heavy manoeuvre , the advantage was I had space to get the elk in position. Actually I never thought of dragging onto the elk with the slip sheet I'll try it next time. It seems a good thought. Thanks for that , best wishesx

  • Thanks G.Woman

    I never knew you could get handles on them... off to Amazon now.

    Wonderful... Life changer.

    Thank you


  • Ok, I'm from the states, what is an Elk and a Camel. This a new one for me. My sister is extremely distressed when she falls, and makes a loud wail which is extremely unnerving to say the least. She really has a hard time rolling over and getting on her knees. She had a bad fall in the bathroom this past week, giving her a hellacious black eye and forehead. She hit the doorknob on her way down. It's getting to the point that I have to stay with her at every moment. What kind of alarms are you using? She is very impulsive and can't stay seated for very long, drives me bonkers. I can't get anything done around the house. Also, here in the states, the fire dept. has a non-emergency number you can call for falls and whatnot. Haven't had to use it yet, but have come close.

  • Gracie_Girl, I went and bought the Hubble baby monitor from Babies or Us. I can go to store or errands and see him on my cell phone. We also have cordless door bells, and a security neck alarm. I am able to work outside in the yard most of the day and still watch him. He is in a wheel chair. After the fall in Lake City, Fla., with stitches in his head, he does not try to get up unassisted any more. He will will hunt me down by door bell, cell etc.... 

    Are you guys going back down to Fla. for PT, or OT. How did she like the visit over all? 

  • Excuse my ignorance, what and how do you use cordless door bells. I was extremely pleased with our visit to UF. Really liked neurologist, Dr. Armstrong, she was patient, not in a hurry and really paid attention to my sister. Sue was disappointed because for some reason she thought they were going to have a cure(I wish).Became very emotional. The dr. reassured her she wasn't alone in this disease. The therapists were great and had some great suggestions. Also, they sent to her primary dr. their recommendations and scripts for more PT, Speech therapy and a social worker. So, we will be doing therapy here and going back down in 8 months. Hopefully, I'll be fully recovered from this trip. Lol! All in all, I was pleased and it was worth the time and lack of sleep.

  • Gracie_Girl,  Door bells use batteries. You can buy them for $9 at Walmart. I take and put them on the porch when I am working outside and can hear them ring. They can reach about 30 to 40 feet apart from the bell to the ringer. When I turn the sound all the way up, I can hear it across the yard. 

    There is a therapy that the speech therapist can do called vital stem therapy. My guy was able to talk again the first day the lady used it on him. I was told that it was good when the patient was early in stages of PSP. I was told eventually that the PSP would take control and the vital stem therapy would no longer work. 

    Good luck!!! I did not know if you guys were going there or getting OT,ST, & PT from a local person. 

  • The impulsiveness is a problem, no doubt! So hard to work around it, and impossible to control.

    I just have to say, though, that services provided by fire departments or other emergency response agencies vary entirely from town to town in the states.  Our city fire department has no such number;  lots of places here in Maine only have volunteer EMT and fire departments; and a number of cities I've lived in in the northeast US only have private company ambulances that will charge you a good bit for any call at all, although insurance, if you have it, may cover it.

  • Fortunately, I have a cousin who is an EMT and a fireman. He told me they would much rather have someone call the non-emergency number, so that they don't have to respond to an emergency for 2 people.  I just wish he was at a station closer to me. That would've been ideal! 

  • Hi live in a very rural area and only have volunteer fire department, they know my brothers situation, have never called as we struggle to get him up after a fall, but they tell us to call any time and they would be more than happy to get him up for my sis and me

  • An elk is a sort of blow up layered cushion, four layers brings patient to a sitting height, a compressor is used , it's like a rubble stool, difficult to get patient on in the first place and to keep them balanced on it. A camel is same with back rest and arms, I presume still same difficulty in getting patient on in first place though.

  • Thank you for letting me know. They sound interesting. I don't know about the balance thing, though. 

  • My brother the falls are the same 3 to 4 times a day also slips out of bed at night, it took a whlle but now he is able to turn around with great difficulty and crawl to the chair grab the chair to be able to push him up, very hard as they are heavy. Hope this will help and make it easier for you. ❤️ 

  • Thank you. I got her some knee pads. They seem to help some.

  • Just got threw reading all of the posts my b is there 'plus' with a couple times of almost chocking to death, everything is now cooked in the crockpot, makes everything very tender, still chocks a little on water, but for now that is ok, we can build strength in each other with gods blessings.

  • hi

    rog has a telephone alarm via telecare, primarily for him to press on his bracelet if he falls but they will come out and lift the pt back up as long as no bones broken. costs £12 per month but well worth it help the aged in your area will give you details.

    julie x

  • Hi Gracie, helps so much to be able to communicate with ones that know first hand dealing with PSP, our loved ones are in different stages with disease, so helping each other is such a blessing. Things that were once so easy has now become such a task, but have made some easier, like cutting his toe nails I put him in the wheel chair, have him soak his feet for a few to soften his nails much easier now, then rub his legs and feet with a good cream as his skin seems to be really dry now. He can't turn around any more at night so has to lie only on his back, I worry about bed sores so threw the night I get him on his side proper pillows to keep him there for awhile rub his backside with cream. He tells me it makes him feel better.

  • That sounds wonderful. Touch is such a powerful healer. It makes the two of you feel very good and still maintains the sense of intimacy. 

    Looks likes I'll be doing my sister's toenails. She tried to do hers and she cut way too short and they started bleeding. She said it stayed sore for days afterwards. 

    Her speech is getting worse, she slurs her words and even makes up a few along the way. I have such a hard time understanding her. Bless her heart, she gets soooo frustrated with me when I have to continually ask her what's she saying and that I don't understand. Thank goodness I finally got her dr. to prescribe speech therapy. I hope it helps. Anybody heard of Vitalstim or LSVT Loud programs? Do they help? I understand the therapist we're going to see is certified in both of these. I guess we'll see.

  • Morning Gracie, yes my brothers speech is so bad to, hard to understand him to, but he just laughs about the whole situation, I understand with PSP that some can be very happy and positive, and laughs ,others can get very depressed and cry, such a weird disease. I have never heard of Vitalstim or LSVT before, I am always afraid of side effects, when was your sister diagnosed?

  • She was diagnosed 2014, showed symptoms as early as 2011.

  • Hi Gracie, that is when my brother was diagnosed with problems 3 to 4 years earlier, do you remember what was going on before  she was diagnosed? I remember a few things but not all, but I can remember saying something was just not right with him.

  • In the Summer and Fall of 2013 was when I really noticed the changes in her. I was taking chemo and radiation for the cancer I had. In the beginning, she was able to drive me to treatments, within a few months she had double vision so bad she couldn't drive anymore. When I finished radiation, I had surgery to remove the lower right lobe of my lung. My cousin drove us to the hospital, and we both noticed her slurred speech and pronounced shuffling of her feet and being off balance. Her face showed that far off stare that I find so unnerving. That's when we started looking for a neurologist. It took two neurologists and neuro ophthalmologist to diagnose PSP. In reality, I was so engrossed into beating the cancer, I didn't notice as much as my cousins did. They pointed out many of the symptoms to me. Unfortunately, it has gone downhill from there. However, she says she started to notice small changes as early as 2011 and didn't say anything.

  • Hi Gracie, strange when it rains it pours, my brothers wife leaned she had cancer also, so all that goes on with the treatments, I saw the changes, she saw some. Thankfully she is doing well now. He was seeing his doctor, a year before being diagnosed, had a MRI, but the lab tech did not read the test right. After a new doctor he looked at the MRI and saw the shrinkage in his Brian and the it was said he had PSP, had never heard of this disease before, did a lot of research on it. Gosh what a terrible disease. I pray you are doing ok.

  • Oh, I'm fine, tired, like the rest of caretakers. Had my yearly PET scan January. Came back perfectly clear. Yea!

    I'm glad your sister in law is doing well now. But, being a caretaker sure takes a lot out of you. When my sister was first diagnosed, I kinda was in a state of denial. I just couldn't face the future I was reading on the CurePSP website. Eventually, I realized my sister was going through more distress than I was and gave myself a good talking to. I needed to be the strong one and take charge of all that needed to be done from now on. Don't think I'm Wonder Woman, cause when my neighbor asked me how I was doing the other day, I just burst out crying. Shocked her and me. I didn't realize I was so bottled up. Oh well, I guess I needed to let it go. My neighbor, bless her heart, started sending her daughter over to walk my dog and started sending over dinner every now and then. So I guess I got something out of it. Lol!

  • Yes this does take a lot out of you, but like you said we have to be strong to take hold, when I first learned of my brother being diagnosed I cried for 6 months, he was always so active, live out in the country he has the land next to me he would constantly run back and fourth all day, so of course that has all stoped, gets me down at times. And I have done the same they always tell me I am so strong but at times I don't feel that way trying to put on a good front. Ha ha. My brothers legs are so bad now at times hard to get him going, and is now in pull up depends, dear lord. Have a nice day, we will all get threw this.❤️

  • We will survive.

  • Hi Gracie, glad that your PET scan was good my sister en law had hers and scan and her numbers were good also such a relief and blessing. I have the day off today, but we live out in the country and my brother is on the next land over, so I am over there half the time seeing if I can help my sis usually put my brother in the wheel chair and bring him over with me for a few hours he loves to sit on the patio with me we talk well let's say I talk poor guy wants to talk but will try to say he is sorry he can't breaks my heart. Not like when he was well he was a motor mouth you could never get a word in.ha wish it was like that again. I am leaving for a week to visit my daughter in Chicago I can't wait to see her and my granddaughter I miss them. Have some people from the church that will come in while I am gone to help with my brother, which is so nice of them, but knowing me I will still worry about him. Where do you live Gracie? I am in the northern part of California having beautiful weather glad it's spring and not going into winter. Have a nice day.

  • I'm glad you're going to see your daughter and grandkids. It will do a world of good. I live in Huntsville, AL. Our Spring is quickly turning into Summer already. Ugh! I much prefer cooler weather. But, the flowers and blooming trees have been extra beautiful this year. This week for me is going to be very chaotic. I've been planning a big 100th birthday for my Dad this Saturday. We've got family coming from all over, his 1/2 brother and sister with their adult kids, which is a surprise. He knows about the party, he just doesn't know some of the details. I'm getting excited, I hope he enjoys it. Fortunately, two of my sister's best friend's are coming to be with her at the party, so I can take care of everything else. Don't worry, I got a caterer to take care of the food, decorations, and the cake, so, I can at least enjoy myself. It should be a good time.

  • Oh how nice that will be a happy time 100 years old, my grandfather lived to be 5 weeks before turning 105 years, he and my mothers side are all from New Mexico come from  huge family so they gave him a 100 the birthday party he came to America in 1909 born in Italy. Is your dad in good health? Nice your sisters friends are coming to be there. My children just gave me a surprise birthday party in Feb and I was shocked, surprised they were able to pull it off, of course I cried and made them do the same, it was so nice tho never had a surprise birthday before. Everything is so pretty here to everything is blooming, a lot maybe we finally got a lot of rain with El Niño plus all the dams and reservoirs are finally full. We'll have a nice time with your dads birthday, with the decorations, food, cake, taken care of you can in joy yourself. Many blessing to you and family.

  • Gracie_Girl, 

    Larry had the vitalstim therapy. It did work very well for him. However, the therapist said that they were often short lived. Meaning, the sicker the person gets with the PSP disease the vitalstim would eventually stop working. My husband talked clear the 1st day he had the therapy. 

  • Wow! That's really cool! I'm going to check this stuff out. Thank you!

  • My mum was getting up every 40mins or so at night.  My father was exhausted as he would get up with her.  I convinced my parents that it would be best to put  a nappy on mum at night.  This helps my father so he could sleep and also my mum as she would be very dangerous at night because she was barely sleeping.  She agreed grudgingly but it worked.  It took her a few weeks to get used to it,  but it meant they could both sleep.  We also fitted a bed guard which would stop her from being out of bed and had assisted technology alarms (one on a bed and the anchor on her armchair). She was falling so much but after these changes we have reduced the gaps dramatically.  

    The referral to the incontinence nurse took nearly 3months,  we couldn't wait and ordered Tena sanitary products.  

    It can get better, it must needs a bit of tweaking.  Hope it helps. 

  • Gosh, we are waiting for incontinence nurse , 3 months is ages. The reason my husband uses commode is cause he needs to wee so regularly but when he started falling doing that we switched to bottle but he can't handle it and when he did he emptied it on floor he couldn't tip it into bucket or commode, I had wet towels etc every morning.  Xx

  • My mum needed the toilet every 40minutes. She is unstable on her feet during the day and it night her balance is awful and cognition.  The nappy was the only thing that allowed her to sleep and be safe.  It gave my dad a proper nights sleep as well.  Try the nappy,  I'm sure it will help. The incontinence nurse was useless when she came we still don't have any sanitary products from them out had been 5 months.  We just buy Tena or Lille. It made of lives so much better.  

    All the best. 

  • I've read several comments on CurePSP website, where carers are using Tena underwear called Ultra and supplement with Two Night/Super Pads. S. has incontinence but hasn't gotten that bad yet.

  • We combine slide sheets with the Elk.

    Just adding this to all of the good advice above.

    There are very gppd Youtibe videos on using slide sheets.

    Good luck - It sounds hard



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