Dan was feeling pain in his very rigid leg last night. Is this common, and what can I do for him, I gave him ibuprofen. He eventually seemed to rest so I hope it worked, but he is almost completely non-verbal.
We use a sit and stand to transfer him (always two of us ). When my sons are around we hold him and pivit him to a wheelchair without the sit and stand. He has a problem bending his back. Now often when he is places in the wheelchair he slides out a bit because he is not bending. He slides a bit in his recliner also is it is not tilted back. I hate to keep him tilted back as that seems to just add to the deterioration of the muscles and stiffness of the back.
Do PSP patients often end up confined to bed? Those of you who have comtinued to care for your loved ones, were you always able to get them up? Transfer to a recliner, or only a specialized wheelchair?
Thanks this is scaring me wondering what’s next. I try to be prepared , but it’s crazy.
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Karynleitner
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If he is not able to bend into a sitting position you may have to look at getting a tilt back wheelchair. He probably needs to be a reclined position or even laying down now, just make sure he gets re-positioned occasionally to avoid pressure sores. Moving dad I'd vary the degree of reclining. Dad didn't become bed bound till the last week or so but he was in a tilt back chair if not in bed.
Thank you. Dan does have a tilting wheelchair. It is wonderful, but harder to transfer him into his recliner, and from the chair into bed. Eventually it will be our next step. He enjoys sitting in his recliner, but he doesn’t not sit in it quite right anymore.
Look at getting a lift device. It'll save strain on you and Dan. I used one for the last 8-10 months Dad lived with me and nursing home used it or 2 people but even they went to a lift full time eventually.
Be careful of him sliding out of the wheelchair! That happened to G at the hospital one day! At least they had a hoist handy but when we left later it happened again in the Ambulance! Thankfully we had a very kind female driver who helped sort him out.
My experience was he was alright in a tilting chair at home but about 6 weeks after he went into a Care Home he decided he wasn't getting out of bed again. It was all downhill after that sadly.
Thanks. I can see that it is a vicious circle. Some of it seems to co e from arthritis in his back also. Therefore he needs to sit up to relieve the stiffness . When we can get him to bend and sit up a few minutes, he can them do much better. Unfortunately , that’s getting more difficult. Thanks so much. Somedays I’m stressed to the max.
So sorry I have no wisdom for you Karyn: I lost G before he got to that phase. It seems to me from all the reading on this site etc, if patients last long enough, they become bed bound - if pneumonia or other infection doesn't take them first.
I always said one of the cruelest things about this disease, is you are left with nothing to hope for: do you wish them to be spared the worst disability, but then an early death? (My hubby), or do you wish them a long life - but much of that in a (possibly) very disabled state?
You are correct. It’s all so sad . He seems to enjoy so little. I am overwhelmed and have a hard time just trying to make him happy. His physical care has become draining. I try to make certain he know how special and loved he is, but I have to try a little harder.
Do you ever get a chance to get away - even for an afternoon, ideally for a 24-36 hour period? If we don't get to recharge, how can we survive? And having some perspective so you CAN give the live you want to, to Dan? I know it's like a bottomless pit...I sympathize so deeply!
We resorted to a hoist when Ben could no longer transfer using his rota-stand. Unfortunately it wasn't too long after we started to have to use this that he died. He was in a very sorry state at this point but never complained and always cooperated as best he could to help with washing/dressing etc which was extremely difficult and tiring for him. I didn't really want him to be in bed all the time as he was so much more comfortable in his recliner chair and I was able to manage prevent pressure sores more effectively and feeding was also easier than in bed. In the last week of his life he was bedbound. I think it was a relief for him when the end came he had had enough of the trials of PSP, bless him.
Thank you Kate. Bed sores are a concern with Dan also. I purchased a alternating pressure mattress for him. We are in the US and it was one thing no one would help us purchase. It was expensive , but I’m very happy I decided to purchase it. Fighting the pressure sores continues to be a battle.
Would you mind telling me a little more about your love. Was he able to communicate, swallow etc. Also, what actually took his life? Dan seems to experiencing pain in his legs from the rigidity. This is new. Any thoughts?
I am so sorry for your loss, but hope Ben is now happy with freedom from this devastating disease. It is So hard .
Can you massage his legs with cream? That always seemed to give G some relief.
Believe it or not he only got a bed sore when he was confined to bed for 24 hours by the carers as they said his legs had gone! Stupidly I didn't ring the doctor as I could see he couldn't even stand!
He went into the care home because they had a suitable mattress. However he was only there 24 hours when he started to vomit. I thought it was because he had been eating chocolates. A doctor was called for him and he was admitted to hospital with pneumonia! That's why his legs had gone too!!
After that he went back to recuperate but just went down again. He actually died from aspiration pneumonia. I think he was neglected at the Care Home. They always seemed nice but refused to feed him and one day I found him with no water! I should have gone mad with them but I just sorted things out for him myself! I know he just wanted to go and he eventually did.
Karyn it's no use pretending all this won't break your heart but you will come through it all. Life will never be the same, it will be different but you will make it Karyn and your darling husband will be at peace. We will always be here to help you through this. I wouldn't be here now were it not for the kindness and support of some very special people on this site.
Thanks Marie. I do try to massage his legs with cream for a few minutes each morning. As silly as it sounds, I get tired and I overwhelmed. His care is not difficult once we get him sitting in his recliner. Dressing and undressing is the hard part. Thank you for your kind words. They mean So much. 💜
I know just what you mean! I used to massage cream into G's legs but there were days I felt like asking for one myself! It wears you out. Have you got anyone to help you? Carers coming in? I hope so because it is so tiring even then. I dread to think how we would have managed without help.
Hugs to you Karen. Please think of yourself sometimes?
Hi Karyn, I live in The UK so we do have most of the aids issued for free which is a blessing. Ben was diagnosed in November 2014 and his decline was reasonably rapid. He had swallow issues and was on puréed food and thickened drinks, he became very rigid in th last few months and looked in a lot of discomfort. No meds seemed to ease the rigidity and he indicated that he felt some pain in his hands and shoulders in particular. He did have morphine patches to ease any pain he might have been feeling, pain was my main worry as he didn't or couldn't always express that he was feeling pain but he was so rigid that I thought he must be in pain of some sort. He completely lost the ability to talk a few months before he died and was difficult to understand several months prior to that. He never lost his cognition and could sometimes raise a little smile or a twinkle in his eye. I'm not exactly sure the reason he passed away as the doctor had visited a couple of days before and said his chest seemed OK. He was making a bit of a gurgling noise before he died but that may have been saliva in his throat, he just seemed to give up and fade away. Fortunately it was reasonably quick, he did have a syringe driver fitted the day before as I guessed he was fading and didn't want him in pain. It is a wicked illness, must be up at the top of the list somewhere and I'm pleased for him that he is no longer suffering. Miss him loads.
Thank you for taking the time to help me . This disease is devastating. Most of the time I’m too busy to think about it now, which is probably good. To see the deterioration of my vibrant husband, the man that was the most fun father and our Rock, is awful. We feel as if we are losing him little by little, yet he is there... He does know what’s going on, but it’s so hard to really believe that . That makes it even sadder.
Thank again. Your kind words truly make a difference. 💜
Thank you so much. I agree with Marie that it’s amazing you all got through this. It certainly is a nightmare, and those who live it are the only ones who can begin to understand the heartache, grief, anxiety and feeling overwhelmed. Also the knowledge that it is your responsibility to make your loved ones life the best you can. I try my best, yet know I will never feel I’ve done enough.
How are you coping? I am getting there I think. Just like you I miss G too and can't quite believe all that happened. Nobody deserves these conditions and neither do their loved ones. I am amazed we actually survive it!
However I am still breathing and go out with friends whenever I can.
Think I'm pretty much the same as you Marie, I'm OK most of the time in the day, seeing friends, gardening etc etc but I hate the evenings and weekends, people seem to think you are all OK and getting on with life but that ache is still inside you. I haven't got round to doing anything hobbywise, just not in the right headspace at present, maybe after Christmas! I still have lonely moments when it all feels so hopeless but generally manage to eventually snap out of it, dreading the winter as hate being penned inside, long may this beautiful autumn last.
Kate I am glad you said you are not doing any hobbies or anything! Thought it was just me. The weirdest thing is trying to read again? I have books coming out of my ears but can I read them? I love reading so it's almost like I am punishing myself although not knowingly. Have read 4 pages of a book this week! Lol. Well it's a start? Wonder if I will get any further?
Thank goodness we are having a nice Autumn. Winter is awful as you say!
I too have a pile of books, started 3 of them but not got past the first few pages, not interested in series in TV and I think there are some really good ones at th mo, just can't concentrate. I stick to the paper, magazines and try the daily soduko and crossword to try to keep my brain in gear, not always successfully I have to say. Hey ho!
I too, am experiencing a "frozen" state - seemingly not wanting to do anything - day-dreaming - feeling purposeless and very empty.
I'm a reader too, and the one thing I seem able to read is stuff about widowhood. I found a book by Genevieve Ginsberg titled Widow to Widow, which is full of fairly short practical chapters. It's not wordy and full of theory about grief, it's pretty practical. Kate, I thought of you and an exchange we had some months back; there's a chapter titled "Stupid things people say"
Don't we just know the stupid things people say? Not sure if I could read it though. Maybe it would make me angry again? I am trying to read autographies as I find them really interesting...but 4 pages? Lol. Maybe I should look for that book it might help me kick start reading if nothing else?
We transfer Mary using an electric stand assist (The Oxford Journey). She has a sling placed behind her and she can be moved on the stand assist. I can do this single handed but it is easier with two. Mary is very rigid and unbending but I am convinced she has remained with me because she has as normal a life as possible and being bed bound is a last resort. Hope this helps. Rob
Thanks Rob. We also have an electric sit and stand a Sabina. At this point we have a large sling that goes under his arms. It is al ost impossible for me to do alone now as when I sit him up he flops back on the bed. Recently when he is being raised he has (just a couple times) bent his knees so that he was hanging , it was scary and dangerous. My son was here and sleeping. Dans knees were wedged and he had to picked him up slightly and I pulled his legs down. With them bent back I could do nothing. I could not even get him back to bed or in a chair.
I Agree completely about you giving your wife as normal a life as possible. Does she communicate with you ?
Also can you tell me what type of a sling you have for your stand assist . I know other types are available.
We are in the UK and use the Oxford stand-aid with a harness to lift R from his riser/recliner to his wheelchair and back ( he does not walk) - the 'riser' component in his chair being especially useful to get him in position to get him up. There is another harness for this that has leg straps but we have yet to use that. A couple of months ago we weaned R off the baclofen he was taking and then had a terrible time using the Oxford because he would straighten his legs and they were absolutely rigid. We could get his feet on the plate of the stand-aid but then he could generate incredible force with these rigid legs so single-handed it was impossible to push the stand-aid into the chair so he could be connected to it. Several times I had to put out a call for family to come help and could do nothing until between two of us we could get his legs bent enough to hook him up to the stand-aid. As you say, when he stiffens his legs, he slides forward in any seat he's in, which itself makes it hard to get the stand-aid in place. We are now back on the Baclofen (but at half the previous dose, which seems sufficient) and the problem has largely disappeared. He can still stiffen his legs if he gets agitated but we can usually talk him down from that. Just while we're on transfers, sometime ago we found that we could not use the stand-aid to get him in and out of bed because he could not hold a sitting position in the free space around him. We now have a hoist and sling for bed transfers which works well, although stiff legs can cause more difficulty getting him manoeuvred into position.
R also has problems with rigidity, especially in his arms and hands and the salvation solution for that has been Botox injections every three months. We discussed Botox injections for his legs, but as long as he is able to use the stand-aid and we can move his legs enough to give him the personal care he needs, it was felt best not to give them in his legs.
We will keep him from being bed-bound as long as possible. Although at times he is convinced that is how he will end up, there is no need to think that at this stage.
Thanks for taking the time to help. We are using the stand-aid exclusively. We are still able to move him from wheelchair to his recliner without the stand aid if I am helped by one of my strong sons. Somedays are harder then others . Although he has a riseing recliner, he tends to slide out. We use a regular small wheelchair to transfer him from bed to chair (in two different rooms ) but it can be difficult if he cannot bend well he can slide from the wheelchair. He has arthritis in his back also.
I have concerns about using a hoist . Dan is hard to turn and roll. Im really hoping we can get by without it awhile, but that’s looking doubtful. The hoists are So big, and seem to take away all dignity.
Dan does not seem to have as much rigidity in his arms, although sometimes he will have food that stops a few inches from his mouth. It often seems he just isn’t able to concerntrate on what he’s doing. I give him fingers he can pick up with his hands. Etc... sandwiches, fruit etc. I help with with food that requires utensils. Is R able to eat regular food? It also seems like Dan has some pain in his arms and shoulders.
I will be asking about baclofen.
Thanks again. Your help is truly appreciated. Best of luck to you and R.
Be careful about yourself when you are moving Dan. It is so easy to injure yourself, especially when they can't help in moving themselves. Our hoist system is quite compact; no screwing into walls or ceiling but with a u-frame that is braced by the floor and ceiling. Once on the bed in the sling, the sling we have can just be pulled out from under his legs and elbows and then pulled up his back with him in a semi-sitting position. I agree that Dan would have to be rolled from side to side to get the sling on him in bed but glide sheets on the bed help with this. Do you have a hospital bed that you can raise and lower and one with side rails? It makes the process easier. Have you had an occupational therapist come to advise you on the best ways of moving day? We found ours absolutely invaluable.
Fortunately, R is able to eat regular foods but is unable to feed himself - a combination of difficulty looking down, lack of coordination, and rigidity. He is slow eating but can eat the same as the rest of us. Although he has muscle rigidity in a number of places, he says he is in no pain. He can get 'set in stone' sometimes, and it's hard to believe it's not painful, but we count all the small blessings.
Thanks . It is a struggle for me to move Dan even with a pad, sheet etc. He sometimes actually seems to be fighting against it. I do talk to him and tell him the process, but he will grip the bed rail or stiffen his arm. His bed does raise with a stiff crank, but I don’t do that too often, probably should. It is only recently that he has admitted to pain after my observation .
Dans ability to feed himself is diminishing, but he does not seem to have much eye involvement. (Makes me wonder about the PSP diagnosis .). I will have to supplement a bit as he eats slow and much less. He needs to be reminded to drink. Sometimes I put the straw in his mouth and he bites it, other times he listens when I tell him fluid is important and he tries his best. The communication and cognitive issues are the worse. He rArely smiles. We have used a wheelchair van service to take him out a few times, we should do it more often. The problems with the bowel incontince etc, makes me stressed. Sometimes I know he should be ok for a day, but not much in advance.
Is your hoist free standing?
He is doubly incontnent and seems to have no feeling at all. Yesterday I had a caregiver here and we got him in the sit and stand. When he stood up he had a huge bowel movement. It was a difficult situation as he was half standing, not steady. It was a blessing I had a second person.
How long as R been suffering from PSP?
Thank again. It’s nice to talk to someone who understands.
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