PSP Association
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How long does the ability for a PSP patient stand on their legs last?

My wife being able to stand although she can't walk is a huge help in moving her. I dread the day she can no longer help by standing. At what point does that ability stop? What was your experience with standing? Thanks for your responses.

Jimbo

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Dear Jimbo,

My husband went through a stage of not being able to stand - which I thought was going to rapidly lead to the use of overhead hoist.(It didn't - presumably due to medication benefits?) John's legs would literally not support him and he would come crashing to the ground the second he tried to take his weight. This occurred when moving off the bed with hook, rails and helper. When I asked John to describe them he said the feeling was like his legs were not there. Then anywhere from 10 minutes to 2 hours later (took a while to get him back to bed to start all over again) he would finally stand and then he would describe them as trying to move the heaviest he was able and described them as 'lead weights". There were times John would do the same over and over again all hours of the night and day and refused to rest until he was totally exhausted. For me it got to a point that I refused to assist. Imagine going through that routine night after night. Sleep deprived I certainly was.

Over time John's falls reduced when getting out of bed. John described to the OT that he had to wait ages til he knew he had legs, and literally think about the motion of getting up including in his mind visually re-enacting the move and then he could stand. (Well most times). I thought it his inability to stand was due to blood pressure changes, and John should have waited as long as possible - eg 20 minutes however John refused to do - now I don't know what happens. Since around that time I noticed he lost most sensitivity to the bottom of his feet. John now also carries alot of fluid to his legs and feet. Which means he always has some sort of sore/ulcer/weeping skin in need of attention. His skin also is blue/blackish in colour which I take it to be circulation and medication (?) related. The skin discolouration and amount of fluid buildup is consistent to someone else I have met with PSP - I don't know if it is a norm though?

Regards,

Alana - Western Australia

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Alana, thanks. You are a brave lady as are all who wrestle with the terror PSP. I appreciate your input. Jimbo xox

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Mum was able to stand up until the day before she dropped into end stage through infection. She had a point beforehand when she was unable to stand for about two weeks again because infection struck but she was back on her feet through positive encouragement and her own determination after that. Best wishes x Dianne

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Dianne, what type infection does she have? Jimbo xoxx

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|Hi jimandsharynp the worst one when Mum was out of action the longest was a stomach bug. Because she couldn't keep anything down she had no Madopar for 2 days and that meant a huge set back. She was back and walking by the end of that month although needed 2 people to walk her. Then she had a few more UTIs which had plagued her all the way through on and off and the last one sent her into end stage. This was despite me being vigilant and getting her onto prophylactic antibiotics. It will be a year in Feb since mum lost her battle. Dianne xxx

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Dianne, my wife has had one bladder infection which was cleared up by Cipro antibiotic. First time dealing with it so I didn't realize her frequent times to potty were an indication. Since it cleared up she is back to normal potty breaks. Thanks for supporting those of us still in the fight by staying active on this site. Jimbo xxox

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hi jimbo .my husband cannot stand we have to hold him up for toileting we ,move in form the bed to the wheel chair then to the shower chair or toilet ,when he is being held up he is bent over he looks ninety years of age not the sixty years that he is , he went into care for a week respite today it is very hard to leave him there, it was 37 degrees and the nursing home he is in has no air con in his room .the next four days are going to be even hotter, his small room is facing west ,i hope i never have to put him in full time care ,I hope he dies before that time comes

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Oops54, yes, may God have mercy on us all in dealing with this terrible disease. Jimbo xox

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Hi Jim

Our neurologist told me Dad would always be able to stand. I would say he is in at least 7th or 8th year of the disease and it was only recently when the GP put him on to Lorazepam that he lost this ability and he couldn't straighten from a "sitting" position and his legs would start to tremble and buckle. Reading about the drug, this was actually a side effect along with a few other things that made me think "what a ridiculous thing to put someone with PSP on to!". I do believe he would have kept the ability much longer but a combination of events in the last few weeks has him now bed ridden and he has refused to eat since 2nd January so would now be too weak to stand despite me stopping this med. I think without all the events, he would have been standing for much longer and hope that Sharyn will always be able to so as it not only makes life much much easier for the carer but I am sure it helps the sufferer keep that little bit of sense of accomplishment and spirits up. Love to you both x

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Sharon, thanks for the information. My Sharyn is able to stand but only if fully rested. Any fatigue makes moving her a real chore. You are right about it being an accomplishment. I wish you the best with dad. Is he making a conscience effort to not eat? Do you thinks he is tired of the long struggle? Any thoughts of feeding tube? Sharyn has let me know that feeding tubes are off the radar for her care. Again, thanks.

Jimbo xox hug

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Hi Jim and Sharyn. Yes fatigue will play a factor. Must admit Dad could stand for long periods of time, even through his whole shower, then being dried, then us putting on condom catheters and creams and talcs etc as long as he had something to hold on to for balance. I do hope that Sharyn can keep on standing for you for a long time to come. Pretty sure Dad hasn't chosen to not eat but we decided a while back no peg or artificial feeding of any kind. One nurse insisted we try food supplement drinks as he was only eating a little each day. I tried to explain why I wouldn't think they would be good for him but she didn't take it very well and made me feel like I was trying to bump him off! So we gave them a go and because they are so thick and gloopy he was coughing twenty four seven for about 4 days afterwards and didn't get any rest or sleep. After I stopped them after only having three, he ate a little then just refused. I think it was more his body telling him he wasn't hungry. He's certainly still fighting, drinking masses which I give him by syringe 1ml at a time but refuses to sit up for food. I thought he might turn this around. We have seen it so many times and read about it on here. Really serious downturns that you think their cannot be an upturn yet there so often is. Even this far in to not eating, I still except him to try to say yes one day when I offer him food. I admire Sharyn for her brave choice in no feeding tubes, it's a hard decision to make but at least you know what she wants, which is always a help. Hugs xxx

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I understand how you feel-I was rather bitter about mum being put on to a dementia treatment as it knocked out the effect madopar was having and spiralled her into a collapse and as she was in a care home we couldn't just stop the medication but had to frantically contact everyone in the hope of someone giving the authority to stop it. Mum did recover but never regained the control of her neck.I am finally able to look on it as someone trying to help but the Parkinson's nurse straight away said she couldn't understand why the consultant put mum on it as it had bad results with PSP! Take care xx

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Hi Daughterno1 What a sad story. It's amazing really that we can see someone struggle so much and not think the Madopar is doing any good, then it gets knocked out and wow, the difference is shocking. It was a shame that some good meaning person managed to do some harm. In my case I suppose it was me, for reading about them and thinking it was a bad choice then thinking "well the doctor must know what he is doing" and giving them to him for a while. I guess I didn't trust my own judgement enough until I saw the proof. Must have been a frantic time for you trying to get them stopped and glad your Mum almost fully recovered for a while. Thanks for the confirmation that they are not a good thing in some cases. Hugs xxxxxx

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Yes it came about when a student psychiatrist did some dementia testing on mum before the PSP diagnosis came and they pursued it even though with hindsight mum's answers were classically affected by her PSP-cognition eyesight issues (not seeing clearly made them think she didn't now what was in the very busy hand drawn pictures) and taking a long time before giving what were very clever short witty answers but which were misinterpreted as not understanding the questions. I was having a job not to laugh as I knew of course that mum was a very clever and articulate person but never guessed they thought mum had dementia! A more experienced assessor may have realised that the fact that mum took 2 lots of 2 hour sessions to answer all the questions was not normal for plain dementia! We were then convinced by a locum memory clinic consultant that Rivastigmine would help mum's memory when talking and had been matched to madopar successfully . How I wished I had dug my heels in and said leave well alone! Never mind, it wouldn't have affected the bigger picture as Mum's decline was extremely rapid throughout. Thank you for taking the time to talk to me. Although mum is gone I feel an affinity with people left on here and do try to help out with advice when possible. Take care xxx

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You are a special daughter to us all. Lol

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No, thank you for taking the time to stay on here and give us all your help and advise! It's invaluable to us all. Dad was initially diagnosed with vascular dementia but after three months of testing they withdrew the "dementia" label as he always passed the tests and there seemed to be no further deterioration. So sad that your Mum's answers, which sound as if they brilliant and hilarious by the way, were completely misinterpreted by the "experts". I guess we all look back and think things were "mistakes" but we are all doing the absolute best we can and sometimes we have to put out trust in others. You certainly did everything you could for your Mum and you should be really proud of yourself. xxx

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Thanks for sticking around to help, very gracious of you and others who do the same. Much obliged.

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Sharon, what does Madopar do for PSP patients? Jimbo xox

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Madopar seems to be the Levodopa drug of choice in Europe. It's mainly a Parkinson's Disease med and is meant to help with movement. Dad's posture and rigidity was some days extremely bad and I didn't think it could be worse but it certainly is without the madopar. Sharon xx

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Jimbo -

Just to reinforce that all PSP patients are different, it was being prescribed Madopar on transfer from main hospital to cottage hospital (after breaking his hip) that put Tony on planet Zog - right out of it, aggressive etc. Once I managed to get it stopped, all back to "normal".

Tony was able to stand right up to the point where he became bedridden after the chest infection that put him into hospital again some time later.

If he hadn't been able to stand, I wouldn't have been able to transfer him single-handed. Tony would hold the walker while I stood close behind to stop him falling, steady him with one arm round his waist while pushing away the wheelchair and bringing in the wheeled commode with the other. (The OT didn't like it, but it worked for us and was the only practical solution at the time.)

We had to do that in the hall as the doorway to his room was too narrow for the wheelchair but OK for the wheeled commode.

Mo

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Mo, thanks for the ideas. I'll give them a try. Picked up potty chair today. It has arms that can drop down to make access during transfer a bit easier. Stay tuned! Lol

Jimbo hug!

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Hi jimbo

Hubbi seems to be at a similar stage. Until now his left leg has been week, at times it buckles under him. Lately this has happened with both legs. It's very frightening when trying to transfer him from chair/ bed to the wheeled chair. However, the last few days he has been able to stand again. Maybe it's just a bit of occasional tiredness? Sorry I can't be of more help. Yale care, maddy

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Mandy, yes, fatigue makes anything much, much worse. A restful night sleeping long hours and naps help. Jimbo

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Dad went through a period of several months when he had to "think it through" before being able to stand, but once on his feet could remain standing for the few minutes it took helpers to get him repositioned to sit in a wheel chair or be moved to another location. For the past month though he has not been able to do that. He has absolutely no muscle tone in his legs or arms, even his head lolls.He's like a 120 pound rag doll. My husband, the primary helper, physically lifts Dad and sits him in a different position or on a different chair.

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Yes, I do think the cognitive issues come into play with standing as well as other things. Jimbo hug

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Hi Jimbo

my dad was walking up until april last year then the ocky health woman said it was to dangerous and said he had to be moved in a wheel chair which that basically robbed him of his walking ability.

we had to walk dad aided with a frame and us stood behind him or its easier with 2 people one in front holding his hands and one behind guiding and assisting with the shuffling feet or locking up.

does your wife have physio at the min? if not shout from the roof tops to get it ans the longer you can keep the movement going the easier it will be and also helps with the rigidity and pain from this .

we also was able to have careres to help mum with dad and they had a technique where they helped him walk by moving him through his hips.

hope some of this helps

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Thanks for the information.

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no probs mate

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Dear Jimbo...as we know all PSP people are different I can only assure you in my bride's case she was able to stand right up till the end. She could just about take a half dozen steps with her Physio till the end. Let's hope as you say jimbo this huge help carries on as long as can be.

With you in mind,best,brian.

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Brian, thanks. Much better today. Jimbo

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My mom could stand and bear her own weight last Friday afternoon but had almost completely lost the ability to shuffle from wheelchair to comfort chair or bed or toilet. Saturday she was totally bedridden and she died Sunday morning at 5:00, We were truly blessed she was mobile and never suffered from pneumonia during this painful journey.

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Thanks, there aren't manny blessings in the disease but not having pneumonia is one. If you don't mind answering a few questions it would be appreciated. How old was your mom? How many years did she live with PSP? May you and your family find peace at this difficult time.

Jimbo

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Thanks Jimbo

Mom was 69. She was diagnosed with Parkinson's a little over 6 years ago. 4 years in we noticed the eye involvement and the diagnosis was changed to PSP. First year was filled with times of decline and plateau then she had a catastrophic fall October 2012. We think she hit her eye and head on her walker while my dad was outside. He came in to find her. After waiting and being treated at a local ER it was determined she had a massive bleed behind her eye and she was sent to a trauma center at UNC. She lost her sight in that eye and we had severe decline as she stayed in a rehab that had no idea how to treat the peculiarities of PSP. We brought her home semi-AMA and secured a home health agency to help relieve dad 4-5 days a week. With the help of family and a herculean effort by church groups and friends, she remained at home until her death.

More than you asked but telling the story is a part of the grief process. peace to you and strength as you care for your sweet wife.

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Thanks for the response. I know what you mean about talking giving some relief. Jimbo

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It's been almost one year since my mom could stand alone.

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Mary Kay, so how are you dealing with that?

Jimbo

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Hi Jimbo, mom' s been in a nursing home since March 2013. Prior to March she had 24/7 in home care but it was very expensive. Walking was limited at best and the carers staying with her put a belt around her waist and would walk behind her holding th belt in case she fell. Since she's been in the nursing home she's wheelchair bound, but does have physical therapy to help build up her muscles. Keep in mind she broke her right hip twice in 2013, crawling out of bed alone. She now has rails on her bed. It's not an easy thing to move her to/from the car when I take her out. Shes tiny, but dead weight and I cannot lift her by myself. She's 85, so sad.. Hate PSP.

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This worries me as my dad's walking has gone downhill at an alarming rate over the last 6 months, but while he is still able to stand/shuffle he at least has some autonomy and independence in terms of getting in and out of wheelchair/stairlift. If this goes it will put a lot of strain on my poor mum to get him around the house.

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Start looking into lift possibilities now. Check Hoyer lifts and Google for other lifts. Don't wait too long. I have a Hoyer lift but haven't had to use it but twice. Rest of time wife can stand and assist me with transfers. Jimbo

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Hello all

I just wanted to say to everyone that I have not been receiving any blogs for sometime and have not therefore replied to all the very kind support I received from my blog about keeping ones sanity as a carer.

This new , or not so new site now, is a mystery to me sometimes.

But thank you to all of you, like so many others have said, the site is so informative and supportive, where would we be without it. I think if should be required reading for every neurologist support worker GP Parkinson's nurse and Uncle Tom Cobbley and all

From the medical profession, they would probably learn more about PSP, it's symptoms and stages than from any learned journal they are likely to pick up!!!!

Dorothy t

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