The PT told me today that they have decided not to continue therapy because he is not progressing as he should. I am very upset and don't know what to do.
FRUSTRATED: The PT told me today that they... - PSP Association
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Auddonz
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So sorry to hear it. We had the same experience. Therapy is a joke- if you don't progress they say stop due to no progress. If you do progress they say stop as now you can do the exercises yourself. It's bull crap.
I hate to be the one to say this but. Literature shows that PT does not really help the disease but may increase flexibility and give some relief in that way. Same was my experience with my Dad with his PT and OT sessions.
You could say he is getting worse once the PT has stopped snd maybe that will work to start again, I am so sorry. Hang in there.
I think I know how you are feeling. Colin had hydro therapy which he loved as he was previously a good swimmer. After only the second session is was stopped as he was not making progress. I replied that of course he wasn't going to make any progress and would never make progress because of the nature of his condition but he enjoyed being in the water. It didn't make any difference to her. That was the last time we saw her.
We had a sheet of exercises to do at home but he hated doing them and I don't think they slowed the progression either. They may have done but not for long.
This post hasn't helped much has it, sorry, but you know you are not alone. I'm sure lots of us have had a similar experience.
💐 X
Sorry to hear this. We have found people very quick to discharge if there is no progress. Most of the services (in UK) seem to be based on the idea of rehabilitation and when that is not possible, as with PSP, there is not much offered.
When we lived in Devon and D was first diagnosed, we had one visit from the OT and a flurry of deliveries of unhelpful equipment mostly designed for people with arthritis or other age-related conditions, and then she said we were discharged. An odd decision I thought as we had just been told D had an incurable and progressive condition!
We do now have a list of excercises from the physio but they are increasingly impossible for D to do and I really don't think they have slowed the progress at all. Sorry this all sounds a bit negative but I'm afraid it is our experience.
V x
Get a personal trainer! I know they cost, but a good one is worth their weight in gold!!!
Lots of love
Heady
Try to compile a short list of exercises that do help such as sitting up as straight as possible and taking several deep breaths. Try a few shoulder rolls, or shrug the shoulders up towards the ears then relax. A few rotations of each ankle. That might be enough to keep your loved one more comfortable. In mums last year I found a woman who came and gave mum regular hand and foot massage. It was a free service which I think I found through the local hospice.
I remember feeling distressed that support was being taken away from us too, but in truth you, your family and regular carers are the best and most important resource. Most of the exercises recommended by the physio were probably a bit naff anyway. x
i had to keep fighting all the time there is no cure but if happy going they should let it continiu make me sick that this is still going onwishing you well
Sorry Audrey; I know it is disheartening to hear that. As you can see you are not alone with this. Do try to get a little routine of stretching exercises at least; keeping as limber as possible helps with balance. People have said that exercise doesn't slow the progression, but I know it makes my guy more generally alert and resilient and improves the quality of his life. I learned early on to report some kind of improvement every time so the therapist could note it, and we have been able to keep going to PT pretty consistently. The outing is good for us, and we do get good advice about techniques for getting up from a fall and safer ways to sit and stand. Is your GP involved? Can you get another referral from him?
Hi easternceder, No I can't unfortunately. He told me to call his neurologist and ask her for one. Hopefully she will cooperate. I do notice an improvement on the days pt comes and try to get him to at least walk and forth in the house. The pt we have now will be finished in two weeks covered by insurance and medicare. She told me to ask for an out patient script for him from the neurologist. Also said when the therapy is for someone on medicare they usually cover the cost. Plus we have a supplement as well. Sounds like both our guys react the same way to exercise. Keep your fingers crossed that I don't have to fight to much. Will keep in touch
Hugs,
Audrey
We had exactly the same and OT discharging after a flurry of equipment being delivered...but had to recall OT for further equipment , she saw the deterioration and referred us to social services as we don't see any health officials other than neurologist once a year. Social services rang a week ago asked a load of questions and said I needed some vouchers for sitting and my details would be passed on to the right department. Heard nothing since and not expecting too either. I feel , it's no cure , do nothing for the sufferer and let the carer get on with it. Very frustrating. Does anybody know about these vouchers ??? Are they means tested, if so I might as well advertise and find and pay for sitters.
gypsywoman1947,
Glad to know I am not alone. I am going to call the VA and the neurologist to see what can be done. Fingers crossed. Are you in the US? I don't know what vouchers you are talking about.
No , I am UK . We have the same frustrations though!! If I hear anything about vouchers I'll post , someone here in UK will know something about them and how they work , I'm sure. Best wishes as you struggle on, I hope you get some joy. Xx
We have two lovely ladies coming in once a week, we have to pay for it, yes it is expensive, but George enjoys it, sorry Audrey, about the problems you are having sending you a big hug 🌹🌹🌹🌹🌹
Yvonneandgeorge, Is once a week enough? Think I am going to try the VA and the neurologist,.
Big hug back to you,
Audrey
We got home PT visits through the VA for a while. The current program of visits to the hospital PT facility is part paid by Medicare. We can only have one at a time, of course, and have traded off, one after the other. When the Medicare runs out we will try to go back to the in-home PT referred by the VA. It's not as good as the hospital program, but better than nothing, for sure. Good luck, Audrey!!
easterncedar, Will be calling the VA on Monday. Had such a busy day today did not have time and am completely exhausted. Hopefully they can do something. I need a days rest and am not getting it. Wearing a holter right now for 24 hours since I feel so rotten. I need some luck, TY
Audrey
Hi Audrey, like other posts we had similar experience, after 8 weekly visits PT told us there was nothing more she could do and W would just have to live with it. He was in considerable pain was unable to turn his head to one side and still couldn't after PT. However I posted on this site and was advised to try alternative therapy so we went to chiropractor and now W can turn to the side and no pain. He continues once month just to keep mobile and all is still good so far.
Don't know what stage you are at but don't give up. 💐💐💐
Best wishes
Nanny 857
Interesting, Nanny857. I may look into that here. Thanks, ec
If you do let us know how you get on. Best wishes Nanny857
Audrey it is quite expensive we pay 75 pounds for an hour, don't think it does him much good, but he enjoys it. Yvonne xxxxxx
Yvonne that is very expensive. We pay £23 for half hour session.
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