Does your loved one try to get up when they can’t walk?

[Moojuice219]

Is it common for a person with PSP to draw his/ her legs up into a fetal position? Has anyone had trouble with their loved one trying to get out of bed or a chair but can’t walk?

[Heady]

Hi Moonjuice, I am surprised your mailbox isn't full already! The simplest answer is, of course, every single person with PSP will try and get out of their bed/chair! It is the commonest thing going. My husband could occassionally even managed a couple of steps. Use to frighten me and the dog to death, when he would suddenly appear at a door way. Either that or the huge inevitable crash. How do you stop it? Find the answer to that and you will have made a large contribution to the world of PSP.

One thing NannaB taught me is, PSP sufferers only seem to remember the last word you say, so instead of "Don't Move" try "Keep Still". If that doesn't work, I hear Superglue or chains are just as effective!!! Joking aside, there are pressure pads that give you a warning that your loved one is on the move, or kiddies video cam's.

Sending big hug and much love

Lots of love

Anne

[Hidden]

When mom first enter the nursing home l ask if the staff had cared for anyone with PSP. The answer was one... she said the person was in the fetal position so caring for him was a challenge (those were not her exact words). But l believe she meant dressing, bathing & moving were difficult.

My mom was a bit of an escape artist at home & the nursing home... many falls as a result. The nursing home put an alarm pad by her bed... there are also alarm pads for chairs. There were times in the beginning of PSP that l believed mom was being defiant... l was wrong... she thought she could walk.

At night there are motion lights for inside or outside the home. We bought a small reasonably priced one at home depot.

Sending hugs of encouragement to you & hubby... Granni B

[Kellsbelles]

My dad was always trying to get up! He needed alarm pad on his chair and bed. He’s much more immobile now but still makes as if to get up. It’s just an impulse they can’t really control. Alarm pads are really good if you’re worried about falling.

[Martina_MP]

Yes, the person at the moment doesn’t comprehend their physical limitations. It happens endlessly and can be maddening. For my mother’s bedroom we use a bed alarm pad, a call button system, and a Ring camera with motion detector, for when there is not a caregiver in the room. She has a high-low hospital bed and we put it as low as possible so if she tries to roll out she won’t fall far.

[AnneandChris]

Hello there

As Anne wrote earlier anyone who finds a solution to this problem needs a medal. Chris' last and most catastrophic fall was this time last year when he decided to get off the loo before I got to him when he called me. Who knows what the thought process was but we ended up with two first responders, two paramedics and a dear neighbour to help and he ended up in hospital for three nights. Thereafter he didn't try to get up unassisted, so perhaps he learnt the hard way.

Good luck, keep on keeping on.

Anne

[Rembass]

I really recommend the chair and bed pad alarms. They were a big help when my mom, who also had PSP, would get up. Ours has a remote box so I put that in my bedroom. But she did hate the alarms going off! We also had call buttons for her both in the living room by her lift chair and one tied to the bedrail so it wasn’t dropped. All these were very effective until the last two months, when she was unable to remember to use the call buttons. A few times she tried to get over the bedrail or had her legs caught in it. At that point it was best for me to make up a bed on the floor next to her at night, which I did until she passed away. But that may not be practical for everyone. I was just glad to honor her wish to stay at home.

[racinlady]

This may come as a surprise to most of the regulars on here, but my husband never had this uncontrollable urge to get up without help. That's not to say he never fell because he had some very hard falls, but not for the reasons you all talk about. I always wondered why. I finally decided fear of falling kept him seated or in bed until someone helped him. Maybe some of his earlier falls scared him more and possibly hurt more than he let on.

I thought I'd add this because it's just another example of how differently this illness can progress from person to person. You just never know what will come next.

Pat

[HARRADL]

Yes. This is when the bulk of my mom's falls happen and now very serious injuries, including broken ribs, stitches etc. The Dr said that it is part of the impulsiveness. It has become so problematic at this stage of PSP given serious injuries that I have now purchased the soft belt restraints to use when she is alone in the tv room or washroom for a few minutes. It goes around her waist and the chair/toilet. It at least is an indicator that she isn't to get up. She will not stay seated even though she says she won't get up and she can't walk. I like someone's comment about Houdini as my mom typically can't even get up from bed unaided or from the chair, but I've actually seen her get up during an impulse move, unfortunately almost goung through the front window. My mom agreed that the restraining belt, as needed is a good idea. I bought them from Amazon and one is on the chair and one on the toilet. Night time is a challenge too as we just have to listen for her rustling as she can try to get up sometimes too wanting to go to the bathroom. We try to limit drinking fluids from early evening on, hoping to limit nighttime washroom trips, with bulk of fluids drank during the day. This helps a bit too.

Hope this helps.

Deb

[Baytalon]

Absolutely! For a period my husband experienced daily falls, often multiple. He broke 3 ribs one day, and the next broke 3 on the other side. He had a U-step walker for those with neurological illness, but he often didn't remember to use it. He was a mass of bruises and scrapes. His worst put his head through a wall and resulted in a subdural hematoma. We were fortunate the doctors agreed to operate and he maintained movement for another year before the steep decline hit. It is difficult to have eyes in the back of your head.

[Caralime]

Hi moojuice, my husband has been ill for 6 years but was told by Neurologist in May 2018 that she suspected PSP? Mainly due to the amount of falls he was having and behavioral issues. I am a part time carer myself so it was a very difficult decision when my husband had to go into care 17 months ago. I just could not keep him safe , he kept trying to get up from chairs etc . In the beginning it was all fairly manageable, but as mobility got worse it just became such high risk. I still feel guilty every day that this is how things have turned out. Even in my husband's room he has a falls mat plus a pressure mat if he gets up so staff can be alerted as quickly as possible? I never agreed to bed rails being up as I think he would try and climb over them. He is in the advanced stages now but is still impulsive and unpredictable?? He doesn't speak and shows no emotion but tries to get his feet on the table when social distancing outside and tries to push himself back in the wheelchair. He will be 70 in Nov . Take care & best wishes to you. This site is great for support especially at the minute when I can't even give him a hug!!