Hi everyone
Just wondering about when LO's have lost their mobility. Was it sudden or gradual. Was it as they began to sleep more & became weaker. Or more due to balance. Can it happen literally overnight. I feel my hubby is getting closer as he walks less & less.
Thank you for any insight.
Kerry
Dear Kerry
It was gradual for my husband and then followed by ups and downs. He went to a Neuro physio gym weekly for years and this I am sure helped slow the decline.
Love Tippy
Hi Kerry,
My Mum fell backwards really badly, smashing most of her ribs, which led to surgery, after that she was in so much pain she didn't want to move much. My Dad, who is her main carer, is in a wheelchair and so could not assist her to walk so got her a wheelchair. That is about 3 years ago, once her ribs healed, he was able to help her onto the sofa for a rest, that lasted for about a year before she couldn't manage that. She has carers to assist her with washing and toileting, and initially they could help her move a few steps, then she had to use a rotating thing to transfer from wheelchair to commode chair. After a year or so she wasn't able to support herself on that and the OT sorted a simple hoist that held her with a belt round her waist. Then earlier this year, the OT decided that she was not standing sufficiently well to use that hoist and organised for a track to be put into the bedroom with a full sling, so now mum is unable to stand.
So she has had a gradual decline, but in a very specific way due to circumstances. Her decline does seem to step down though, she will be less able for a few days, usually because she is fighting an infection, but once she is better she never seems to get back to where she was previously, sometimes by quite an obvious difference.
It's a funny old illness, PSP.
I hope you and your hubby can find the right way forward, to keep as much mobility as possible without risking falls.
Julie
Hello there
My husband lost mobility fairly quickly earlier this year.
He was dragging his left leg and found it difficult to use his walker even with me steering it, so we started using a chair to move around the bungalow. He can still stand and pull himself up on the Sara Steady and can move his feet to turn 90°.
Sorry not to be more positive, PSP is so cruel, but we keep on keeping on.
Hugs
Anne
Thanks Anne
My husband was using a wheelchair sometimes if we had been walking quite a distance. He would push it then get in when he was tired. One day we were returning from a trip out and I had difficulty getting him out of the car. I finally did and he clung to the handrail we had fitted at the side of our drive and couldn’t move any further. It is on a slope so I couldn’t put the wheelchair behind him but up to that day he could walk up it holding the rail. Gradually his knees started to bend and he ended up kneeling on the drive, still holding the handrail. I was wondering who to call when a stranger stopped in his car, got out and said I obviously needed help. We managed to get him into his chair and I took him inside. After sitting in his chair to rest, I got him onto his standing hoist but again his legs collapsed and he was bedridden for 7 weeks while I waited for a full hoist (the NHS had changed suppliers). So with my husband, one day he could walk quite a distance slowly, the next his legs couldn’t take his weight.
Most things I was prepared for and got equipment before we needed it. I was annoyed with myself for not anticipating this but as you know, everyone is different.
Best wishes.
XxxX
Hi Kerry. My husband was diagnosed with CBD which was not confirmed by autopsy, but seemed to fit his symptoms. I guess each patient will be different, depending on what part of the brain is most affected.
My husband kept up his walking exercise for as long as he could. His times got longer and his distance shorter over a year, latterly with a walker.
He lost the use of his back muscles suddenly. He had severe back pain up to 21/2 years beforehand, was weak down one side of his body and was gradually losing his mobility. He had been given a trapeze hoist over his bed 2 months before to help him raise himself out of bed.
He was very tired one evening and I suggested he shower and get to bed. He 'walked the wall' down hallway rather than using his walker and sat on his bed. Instead of staying sitting upright, he flopped over flat on his back and after a few moments, he said with a laugh that he couldn't get up. I managed to shower him and helped him to bed, the first time I had needed to do so.
I rang his Dr next day and he got him into hospital under urgency.
Hubby remained in hospital and never regained his strength. Within a week, he was telling me he had fallen in the toilet while getting new pj's on. In fact, I had been rung to say he had fallen out of bed. So I think there was a bit of 'hopeful imagining' on his part. His bladder control was also failing, although that was not helped by nursing staff not answering a call bell promptly!
Within a week, he had 'forgotten' how to read, and was showing signs of forgetting how to use his knife and fork, so co-ordination was also going.
All this led me to ask for a neurological consultation, and the diagnosis of CBD.
Things continued to deteriorate from here on. The downward trend had been obviously increasing in rapidity for 6-8 months before his end. He died about 3 months after going into hospital.
I have not seen other accounts of CBD that have been as rapid.
Just watch for the pace at which changes seem to occur. I found this an indication of how fast the disease was progressing, and I had already started the process to get help at home, even tho hubby did not think he needed help. He seemed quite unaware of how fast things were happening until close to the end.
I also found it helpful to note down any change, however small, in behaviour - sleeping during day, blood pressure or temperature irregularities, short vacant periods, that might be construed as a mini stroke but were not, etc. He had meds for BP and he had taken them at these times. Think it may have been due to auto-immune system also being compromised.
I know it sounds unbelievable to link these things now, but this is what I believe was happening. The ward Dr in charge was a Parkinsons specialist and we saw little of the neurologist and did not seem to link all together. However, he did send hubby for an x-ray thinking he may have had a stroke - of which they found no evidence.
So keep your eyes open, and watch for the unexpected. Hopefully, you have a long time left to enjoy his company.
Take care.
Hugs
Jen xxx
Thanks Jen. My husband also has diagnosis of CBD. The progression had Ben relatively slow but steady over the last 8 yrs. The last 9 mths have spiralled from one thing to the next. He is sleeping more, much stiffer, not eating as much but lost weight even when he was. No speech now. Doubly incontinent most of the time. His right hand was initially the problem limb but now I think his right foot is not working properly. Swallowing is also a problem. I feel it won't be long before he can't walk. Just didn't know if it could literally happen overnight.
Thanks for sharing xo
Sorry to hear that. You can already see the changes are happening more frequently.
To me that is an indication of that downward trend. It will inevitably get more difficult to look after him on your own. You are right to question, and plan for a more difficult phase.
I found swallowing - or reduction of ability to do so - brought a more crucial period. Feeding needs to be managed carefully, and foods pureed or softened, liquids thickened. Often this is not liked! I found it took time to arrange for soft foods, yoghurt, icecream, jelly, etc to be made available in hospital, but if he is at home that is not a problem. Hubby was given fortified milks too. It is probably no longer essential that he has a balanced diet! Let him enjoy whatever he is able to eat, if sweet things, so what! Hubby often ate pudding before dinner!
If you can communicate with your husband, try and learn how he is feeling about life in general. It is a hard conversation to have, but if you understand how he feels, it make help to plan forward whether he will accept supplements and foods, or not. Let him know he can still have control over his treatment. Although it is hard, support him if you can. It is equally hard to watch them suffer, and feel powerless to help!
Nurses were still giving my hubby meds by mouth with a chaser of apple sauce when his swallow was weak. They had not noticed it as clearly as I had. A little sauce went the wrong way and started another bout of pneumonia. He was already eating very little. He was very frail by then and all by mouth meds were stopped. We did our best to ease his coughing and make him comfortable and prepare for his end which was peaceful. I think he was ready.
I hope you can prepare for this before it is needed. See if you can get Hospice or palliative care involved, as they know best of all how to prepare you both, and to do it all with compassion and dignity. Their care can remove the stress from you and you can devote yourself to him while they do the caring.
Big hug
Jen xxx
Love what you say about food, Jen! I have bern more flexible, too, about Ian's diet. Puddings are the order of the day here, albeit with sweetener, as he is diabetic! Can't win either way, but he is happy.
Juliet x
Happiness is the objective! Their life leaves little to be enjoyed, and the ability to eat will be lost at some point.
My hubby was diabetic too, as well as having high blood pressure, heart disease, high cholesterol and psoriasis!
I used to take in a small bar of plain Cadburys milk chocolate, and when he was in bed, we giggled like naughty kids at a midnight feast and ate several pieces.
I reckoned overdoing the sugar and fats, etc was not going to do major damage in the long term - but it was going to add to his enjoyment of life in the short term!
Hugs
Jen xxx
Chris continued to walk with my support. He occasionally froze. He used a wheelchair to move far or quickly. He gradually got weaker and slower. Then he got an infection - had a week in hospital - swallow gone - and came home for palliative care. He never got out of bed again.
He was 84 and prepared " to go " when he judged his quality of life unacceptable.
It's impossible to predict. But you will certainly need a wheelchair.
Love Jean xx
Thanks Jean I am in the process of trying to organise equipment I may need.
xo
Dad went from normal walking to assisted walking to using a walker and then wheelchair over a period of about 18 months. The shift from walker to wheelchair was a quick event. He got to where he was expended so much energy trying to walk it was deemed by his doctor and O/T that a wheelchair was the safest option.
Ron
Thanks Ron
My brother declined slowly at first, starting with continued falling backwards.
He used a walker for a while but eventually stopped walking altogether, due to balance and I think all his falling began to frighten him as we ended up in A&E so often.
John fought to the end though and tried to walk many times even when his legs couldn't hold him.
It's a wicked disease.
Big hugs
Sue x
My husband Paul who has CBD, was still walking (albeit slowly with help) on August 1st and we went out for a pub lunch in the car with his brother and sister-in-law. He’d had problems with stiffness and his left leg dragging a bit.
A couple of days later his left leg just gave way when he was standing and he fell. Thankfully nothing was broken, but he then began to use the wheelchair.
He was ok for a couple of weeks but then could no longer sit up and would slump to either one side or the other, or would end up bent over double with his head on his knees. He has now been completely bed-bound for the last couple of months and has been admitted to hospital twice.
The first time due to coughing, not being able to swallow and so was not eating and drinking enough and therefore not peeing or pooping either. They then inserted a PEG feeding tube and he’s been doing fine with that.
This last time he was admitted to hospital as he had developed pneumonia and sepsis and we could have lost him. Thankfully it was treated in time and he has recovered and is coming home today, and we’re finally getting married on Saturday!!
This horrible condition/disease is so unpredictable, and things can change quickly with very little warning. He first had symptoms about five/six years ago and at first we thought it was RSI, and then the neurologist thought it was a stroke. It wasn’t until it had started to affect his other side that they made a diagnosis of CBD in January of this year.
The neurologist told us then that Paul has another year or two (three if he’s really lucky.) As Paul also has stage 2 prostate cancer this may also be accelerating his decline, but we’ve been told by the urologist that the cancer would not become a problem for a few years yet.
It’s hard to predict how things will turn out, and we’ve found that it’s best to prepare for the worst and get everything in order, and then to savour and enjoy each day as it comes.
Hope this helps.
Hi Kerry
I was diagnosed in 2018 @ John Hopkins, .I just start to notice that my balance and walking is getting worse especally when I am tired
Now I Use my walker constantly . I fell in the street yesterdayk got out of my friends car after playing cards for 3.5 hrs.My son said to me mom you look excaused . He turned around to go & open the garage door and I fell backward Thank God I didnt hit my head . My gaurdian angel watches over me I sleep later in the morninb go to bed around 130 am due to taking afternoon or evening short naps.my right side is weaker.Iam sure everyone is different .minr has been gradually getting worse.
think it is time for us to start interviewing palliative care.
xxoo
\Maria Elena
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