Falls

It’s me again, Rick fell twice today he didn’t get hurt. It was just really hard to get him to understand how to get on his knees so that he could help me get him up. He’s not able to stand or walk and when he falls I have to get him up and he is dead weight. Sorry just venting. Thanks for listening.

[Dance1955]

Penny vent all you like I have passed that stage with my husband now but remember it well it’s ok for Physio’s and OT s to show them how to get up but we have to deal with the freezing the spatial ness the not processing the move and lots of other things really it’s so hard my husband is in a wheelchair now doesn’t fall just leans I have to pull him up now so I’m some ways easier and some ways not I ask myself if I had of known how long and how demanding this all would be would I have done something sooner and I am sorry to say I think the answer would be yes !! Not just venting telling the truth after about 8 Years of all of the above

Hugs to you all x

[Hidden in reply to Dance1955]

Rick is in a wheelchair and it is so hard to transfer him from one chair to bed or another chair. It’s only been since 2017 and I’m tired, I can’t imagine 8 years. I’m sorry we had to meet like this.

[Dance1955 in reply to Hidden]

Yes I’m sorry we had to meet like this too But Penny I have a Sarah stedy to do transfers they are brilliant can you you tube Sarah stedy hopefully you can get one too x

[honjen43]

Understand utterly, Penny! When hubby got stuck in the bath, he spent half an hour there trying to work it out by himself. When I checked why he wasn't out, he was unable to put action to my requests to get onto his knees. It was then I think that I began to understand more fully that his brain was no longer fully functioning. The first time it happened, I told him to push his emergency button and get Ambulance crew to get him up! I was due at a meeting and had been annoyed he decided to bath late in the pm when he already knew I had to go out!!

Second time, I eventually got him onto his knees and wrapped a large towel under his chest and supported him while he got himself onto his feet. Was not easy! Also called our son to help.

I hope Rick has a physio regime where someone takes him through a raft of exercises to help the muscles respond. Music, rhythm and counting helped my man, even tho he was no dancer or singer. And just lifting the leg to order while holding on to something solid helped to remind the brain his feet were there. You will need someone else to oversee that, as in my experience, they will not listen to their "nearest and dearest".

Hubby's battle with CBD is long over now.

I know what you are going through! Get extra support if you can. And some respite if at all possible. Even if only to go out of the house while someone else is with him.

There is mention on this site of a blow-up bag/cushion that can be used to lift/push his body to help him up. Might be called

'Sara Steady'. We never used one, though, as muscles gave out beforehand and he needed to be hospitalized.

Hang in there! We are all here to help and support you however we can!

Hugs

Jen xxx

[JantheNana in reply to honjen43]

Your comment about hubby not listening to “nearest and dearest “ rang a bell with me. My late husband’s PT taught him to get himself off the floor. He could do it in 8 seconds for her. At home with me prompting him he could not do it.

[Tippyleaf]

Dear Penny

When my hubby fell he would panic and be totally incapable of getting up. I found if I made him comfortable with a cushion and blanket and let him lie there for a little while I could calm him down and he would then be able to follow instructions and it was slightly easier than scrabbling around.

It is such a challenging phase

Sending love and hugs

Tippy xx

[AnneandChris]

Hi PennyWe too had some horrendous falls and Chris ended up in some unlikely places.

We were supplied with Manger ELK which was invaluable as long as there was space to deploy it. Sometimes however, I like Tippy, wrapped him up and let him recover before trying to move him. He was a six footer and I'm five foot! We also had a Sara Steady which was a terrific aid.

So keep on keeping on, you are doing a terrific job.

With love and hugs x

[fishponds]

In Norfolk Uk we have a great team called Swift That come out and get them up off the floor for you .using inflatables

[ncgardener799]

Hi Penny, Such challenges we all face with this disease. My husband has PSP and we are in year 6. Do you have a gait belt with handles? The OT recommended one and he showed me effect ways to use it, but dead weight is still difficult to move. It is a helpful tool even to help with moving up out of a chair or bed as well. The wider style with handles is best. Seems to take a bit longer for my husband to process instruction, so as others have mentioned make him comfortable if possible and rest awhile so you can both try again.Reach out as often a you need!!! We all understand the difficulties. Your doing the best you can.

I worry that I will get hurt-I've had two back surgeries and do ok thankfully, but Its still a worry. Not to many serious falls here and PT training has helped him so far remember a little song about getting up. He is fully ambulatory but wobbly. In US we call 911 emergency services for a lift assist and they are great. Haven't had to use them yet, but will if I can't safely handle him.

[Runner333 in reply to ncgardener799]

My husband has been recently diagnosed with PSP and I am very worried about falls. We are in physical therapy now and I was wondering if you could share the song that helps to remember the steps to getting up. Thank you so much.

[AJK2001]

Know just how you feel, have been there many times. The let him recover before you try & get him to move strategy sometimes worked for me. Putting a chair nearby for Mum to kneel at & then push up from helped (both physically & mentally I think, when she saw the chair it helped her brain realise what it needed to do). But do be careful, don't risk an injury yourself that could make life very difficult for weeks for you both. If you can't get him up easily, call for help whether it's a good strong muscley neighbour or an ambulance, it's better than hurting yourself. My husband came in very useful

[wear1947]

I know it would be very difficult to convince him. But Rick needs to be tied to the wheel chair. He can't stop the compulsion to stand up suddenly. It's a characteristic of PSP. Only at the care home my sister accept to be tied to the wheel chair or a chair.Good luck and big hugs

Elena

[Debspottery1]

I also have a 6 ft tall husband with PSP - year 6 to 7 - who is falling twice a day average. He freezes all day long. He gets stuck with his legs pinned beneath his weight. I'm 5ft - and bad back, not to mention being so tired I have no strength, but we are managing. I see the trouble ahead. I read in a PD book that a hula motion, swinging the body a bit, like a hula dance helps the brain to stop thinking the old patterns, so releases it to try a new method to move. It did help a bit. It is so hard getting help- family not close by, hospice will come out but they aren't close by either. I don't want him to go to ER and end up in hospital and rehab- as that is far worse as far as I've experienced here in Penna. So I'm taking pillows and a foam mattress cover to where he's falling down, and making him as comfy as I can, until he can use a chair to pick himself up again. I know wheelchair is coming soon. and he will lean so far I'm afraid it will tip. Standing to pee is a challenge too. We got a hand held urinal, but so far he refuses to use it. Strong will. Now he's having trouble peeing...

[Banta123 in reply to Debspottery1]

Hi Penny

Sorry to hear what your going through. My dad was diagnosed with PSP 18months ago. Hes 6ft something and my mum is his full time carer who is 5ft.

She still holds him to go for a pee because she wants him to not give up using his strength in his legs just yet. But i see how stiff he can get and i can't barely watch as i just feel hes going to fall again. Whilst going for a pee my mum just holds onto his top from the back but its just not nice seeing him being dragged/held like this. Its hard for my mum. We try go over a few hours every week to see him and cheer him up.

We are thinking of installing a urinal now as he judders whilst peeing and then its more work for my mum to keep cleaning the floor after spills.

The OT recommended a walking frame but again my mum doesn't want him to rely on that yet. Hes having PT sessions 3 times a week which i believe is helping...

Keep positive. Your not alone

Ranj

[ncgardener799 in reply to Banta123]

Perhaps you could get a gait belt for your Mom to use when she helps your Dad stand up to pee at the toilet. She can use it to hold him, it is much safer for her as well as him and much better than his shirt. Physical therapists use it to help patients especially when they are walking. The best one has handles on all sides, it is sturdy and soft with an adjustable strap for around the waist. The physical therapist can show her how to use it properly. I bought one on Amazon.

[Banta123 in reply to ncgardener799]

Great!! Thank you very much i will look into that for sure 👍

[ncgardener799 in reply to Banta123]

I suggest you buy the one that has woven handles on sides, and mid back, but not the hard handles . The type that are about 4 to 6 inches wide are more comfortable. Also a quick release buckle and the appropriate size for you Dad. Hope it helps you Mom and Dad.

[tasha1944]

The best thing I have bought for John is a Pelican belt [ a wide belt with four handles). It helps me to be able to grip something to get him up after his many falls.

I am looking for a a light lifting device that I can easily take outside into the garden to get him up when he falls outside. I just need a frame with a winch, but there doesn’t seem to be anything simple in Australia. They are all big cumbersome devices which are very heavy and expensive.