Liz used to have one to one hydrotherapy with a neuro-physiotherapist.
Her lack of balance was not an issue in the water. She was able to do exercises and swim and the resistance of the water gave her a good work out.
The principle, as many folk here know, is that the more one uses their muscles the longer they are able to use them. The physio explained it in terms of nerve feedback to the brain. As I understood it the feedback to the brain stimulates it to keep those functions. Of course any such exercise would help, but Liz felt so safe (from falling) in the water she could really go for it. And, water is such a lovelysensuous and supportive place to be.
I hope this is useful.
Warmly
Kevin
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Kevin_1
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PSP is progressive as all the neurological illnes. In the case of my sister diagnosed as PSP-P (in the classification of Dr. Toledo), the progress hs been quite slow during 15 years. But now the degree of stifnees of her legs and the lack of balance is huge. Then, it is usefull to try egain with swimming as she used to do in the early days of the disease.
For a while I paid for Colin to have hydrotherapy and he loved it but at £40 for 30 minutes before CHC, we couldn’t continue indefinitely. I went to the GP to see if there was anything available on the NHS. There was and an appointment was made at a hospital 13 miles away. It was an effort for me as I had to get him there, get him changed and showered and to the waters edge. He was in the water for 20 minutes and then I had to shower him again, dry and dress him and get him back into the car. After the 2nd session I said goodbye to the assist and said, “See you next week”. The response was, “ Oh no. The therapist is going to write to you. She won’t see him again as he is not making any progress”. I couldn’t believe it and explained he won’t but it helps with his mobility. She wasn’t interested as the next person was ready to go into the water. I was so upset I just left and didn’t take him back, never received a letter or any other communication. I should have complained but you know what it’s like before you get any help. I should have done but didn’t have any fight in me at that point. That came later with the many other problems with professionals, carers etc. I hope no one else has to go through that as hydrotherapy is something our loved ones can enjoy even if they don’t make progress.
That is so awful - shows a complete lack of awareness on the physios behalf - surely maintenance is equally as important as progress. You are right though so hard to fight those battles on top of PSP.
Hi NannaB, we had the same experience with NHS Physiotherapist. After 6wks she said W would no longer be seen as he wasn't making any progress. I was shocked, as I had given her PSPA's booklet for Physios on our 1st visit. Obviously she hadn't read it!! 👿👿
I think it’s the same with everything now, all professionals in any job have to reach targets and if they have someone who is not going to look as if they have improved on paper, they don’t want to waste time when they could treat someone who will make progress, improving their personal records. Common sense isn’t used. So sad.
Yes, all of these things add up. I am constantly watching costs.
That hydro-therapist seems to be way off track. Maintenance of function is every bit as important in treatment as is recovery of function. Maybe they had a long waiting list with waiting times that needed to be brought down. It makes me rather cross!
Yes, caring does knock the fight out of us. Tiredness and fighting battles on all fronts month after month...
Yes, changing Liz in a hot humid changing room with her being as difficult as possible was an endurance test. There was humour too. Getting her trousers on I would say, "put your left foot out and I would have the left trouser leg ready and of course she would put the right foot out. I quickly learned to say the opposite leg of the one I wanted. She then started doing a swift foot shuffle to try to get the wrong foot in the trousers whilst I was chasing the right foot with the trouser leg. Infuriating, but oh, so funny too.
Larry does the same thing. Ask him to put his foot out. I am holding the underwear left leg he gives me the right. It’s such a small thing but over the years it adds up.
We have a splash pool, but sadly Ian is too nervous about getting into it now, as his legs are so weak. I keep trying to convince him, but as a non swimmer he is terrified of losing control in the water.
Such a shame as the temperature here is steady in the mid to high 30s! I am enjoying it, though!
The problem is actually getting in it! It is a metre high above ground with no steps and his legs are so weak he can't (or won't) swing his legs over the edge, or be helped to do so. Managed to get him in a couple of times last year, but both his legs and confidence are weaker now. We press on, though.x
When Colin was still fairly mobile we were invited to join my friend in her hot tub. A glass of wine in the hot tub under the stars sounded wonderful and it was. Colin loved it as well. Getting out was the trouble. It was the worst “can’t follow instructions” episode we had up to that time. His legs would not move. I told him to lift his leg over the top and he said he didn’t know how to. I tried lifting it and it was stuck to the ledge. There were 2 of us in the pool with him, my friend, who had enjoyed many glasses of wine started laughing and so did Colin. I would have but was freezing as it was in the winter. My friends husband went and got us all towelling dressing gowns and being short, mine dangled into the water. My feet were the only part of me that kept warm. We struggled, laughed, nearly cried, laughed again for ages until I said we had better call the fire brigade to winch him out. Suddenly his leg was over the top and he almost sprinted down the garden. Some time later he got stuck in the bath. Again I struggled to get him out and he said he didn’t know how to. Then I remembered the hot tub and said I was going to call the fire brigade. He suddenly flung himself forward, grabbed the taps and pulled himself up. He nearly went down again but I’d already put a towel under his arms around his back so was able to stop him. That was the last time he had a bath and two weeks later our wet room was finished. Never a dull moment with PSP .
My husband was never a swimmer the look of horror on his face at the mere suggestion of a swimming pool. But he attended a twice weekly session at the Neurophysio gym until the week of his death. I am convinced that plus the weekly Tai Chi (seated version) made a difference to his chest, his mood and prolonged his ability to mobilise /transfer etc. We had 4 weeks of no physio gym last October followed by a huge and scarily rapid decline in muscular strength, coordination, mood and sleep. This motivated both of us to keep going with the exercises.
So absolutely agree any regular exercise is good - whatever is available/appropriate.
Liz still gets physio in the nursing home. Even though she can barely move. The physio gently moves her arms and legs and encourages her to assist. We think it has stopped her getting too stiff.
Steve never had Hydrotherapy, never was offered it, or, to be fair, even thought about it. I did take him swimming, before we knew about PSP, he loved being able to "run" again, I did loads of different exercises with him. Swimming, he couldn't actually do, seemed to sink every time, although he use to be a really strong swimmer.
Totally agree with some form a regular exercise, I had a personal trainer come to the house, twice a week right up until he died. Positive it helped, kept him able to weight bear until the end. Was still able to walk with her, until he died.
Of course all this is hard work, but well worth the effort, even if it doesn't seem to make any difference to your loved one, I know Steve thoroughly enjoyed his exercises. To me, that was the most important thing.
I took Valerie to our local hydrotherapy pool until a couple of weeks before she died. We had no physio with us and I took her in myself. She was always a strong swimmer and loved it right up until the end. It may not have helped the PSP but it kept her very happy.
We met when we were 14 and both swam for Surrey , married at 18 and celebrated our 60th anniversary before I lost her. She was such a good swimmer she was in one of the first synchronised swimming teams in the country.
hello kevin and all, i'm a new reader of these posts. my mother is at an advanced stage of psp. i want to say first of all what a remarkable place this forum is in terms of counsel, useful knowledge and humanity. thank you all, as i have been reading posts for some weeks now and learning a lot. regarding hydrotherapy, does anyone have any advice on the best way to get the person in and out of the pool if they are very stiff (plus heavy)?
thanks so much kevin. that may be more heavy duty equipment than we can manage (my parents live in india, in an apartment complex with a shared pool--though hardly anyone else seems to use it which is nice) but i'll look into it. two years ago when my mother's symptoms were milder she had really enjoyed spending time in the pool, where she felt weightless. then we stopped as it was just too difficult and scary helping her get in and out. these days there is so little she enjoys so i found myself thinking about that again...
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