My mum has adnavce physio therapist the community 'physiotherapist' just handed me a leaflet and said to follow these , that she cant do. She said mum cannot be helped with physio at this stage as she can't follow instructions. I dont fully agree.
My mum has a stiff body and she moans with aches and pains, what has been your experience ? Is it worth trying a private physio or a masseuist? Any recommendations?
We've used a private neurophysio once a week for a long time now and find it really helps with mobility and balance. She understands the neurological aspects and can modify the exercises to meet my husband at his level on any given day. Some days that means stretches and massaging the legs more than exercising and she always gives him "homework" that he can do with a carer or myself - some in the chair, some standing up and some outdoors (seasons permitting). We've not tried professional massages but I know others say it makes a big difference - at least for a few days- to pain & stiffness.
Best of luck, I know neuro-physiotherapists are hard to find, you probably need to ask around.
Hope and hugs🌻🤗
Hi Xaiwal
Physio therapy is very helpful until the disease progresses beyond a certain point so it depends. Depends on your mums progression.
My husband had private physio sessions once a week for about a year until he could no longer travel to the clinic. He looked forward to the sessions although found it very tiring. At this point he could walk unaided.
The NHS community OT and Physio took over when he became house bound and and list his ability to stand up unaided. They were focused on trying to get my husband mobile again. They gave him simple exercises to do at home each day and also visited regularly to conduct physio but Unfortunately they stopped coming in December as did not see any improvement. They explained no amount of physio would reverse the decline to date.
If you feel your NHS physio is not being helpful and has not reassured you that they cannot do more you could consult a private physio for their opinion but it’s important that whoever treats your mum understands she has PSP. I think the PSPA has a booklet for physios that explains PSP so worth contacting them and asking the question.
Hi Xaiwal!
Agree with Bengerser and Sun-flowerwearer.
These are our particular experiences and information about "physio actities on PSP":
If physicians agree that there is suspicion of a Parkinson disease (PD) or Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P, MSA, etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.
One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.
This link could help:
parkinsonslifestylemanageme...
On august 2021 PSPA launched an interesting information about systematic exercises: “Tips for staying with PSP&CBD”.
pspassociation.org.uk/app/u...
Bergenser makes this contribution:
Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care
frontiersin.org/articles/10...
(sections: Non-pharmacologic Therapy for Gait and Postural Instability and Role of Exercise in Gait and Balance)
Hoping to be useful.
Hug, luck and courage.
Luis
Interested in responses to this as my mum with CBD was given exercises to do which she couldn’t really manage and gave up. She is quite a strong willed woman so I didn’t push it with her. The physio said the same thing - that she would sign her off as there was no point in her making visits if mum wouldn’t do the exercises.
We went through several physios before we found a couple of good ones. At least five I would call complete duds Need physio with some psp experience which isn't easy but they are out there I agree that the pool is the best my partner has been doing hydrotherapy once a week for a year now and it is good for mental as well as physical health. We have 5 physio sessions a week. Nothing stops the progression but the physio is about quality of life for as long as possible. Good luck time is precious
Hi
My Mum has CBD and more recently has been seeing a neuro physio from the NHS who works alongside her neurologist. He is more in tune with her condition and has been really helpful trying to support myself and Mum’s other carer with how best to continue with massage both manually and using a massager he recommended. He has also provided a hand splint which we use on and off throughout the day so Mum can try and maintain a straight hand when at rest. She also uses an electric stepper -I’m not sure how much this helps but it does give her feet and legs some additional low impact movement whilst she’s sitting in her chair.
I hope you have some luck finding someone who can support you.
Would you be able to share this physio details ? Ans the recommended massage machine ? It would really help.
My mum doesn't speak, but her moans and groans i feel.she is in pain , esp in her muscles , she is in advance stages , cannot walk we use Sara steady, but it requires two of us to pull her up. I have asked for electric standing hoist so that she is still activating her muscles at least. But annoyingly CRS/OT ( NHS) insist on giving her a hoist . I fear that would make her bed bound too quickly.
It's been a struggle with them to the point they reported me to safeguarding because am refusing the normal hoist you can imagine how I felt when that phone call came.
I sometimes feel the entire NGS conspires against mum and I.
Had they caught this much earlier , she could have recieved physio to slow down loss of her mobility nope instead they misdiagnosed her twice and wasted precious time.
Thanks for reading
Hi
So sorry that you and your Mum are going through this and I totally understand how the additional worries that differences in opinions with others regarding the health/wellbeing of your Mum can be both frustrating and exhausting too.
The massager we have is called a Dr Graeme, General Purpose Massager. The massages tend to focus on her upper/lower arms and upper/lower legs. We find that often manual hand and feet massages are better received, we also use massage oil with manual massages which also helps Mum’s skin to stay soft and smell good too.
I’ve also just booked Mum in to have an assessment with a private neuro physio as even with the best will in the world from a great physio, NHS support can be limited and not always as frequent or timely as I’d hope for.
Sending you and your Mum much love xx
Gentle knee bends, foot rotation and massage are helpful to keep the circulation moving, even when bed-bound.Perhaps you could be in attendance to help with the instructions when the physio comes. You know your mum best and can interpret in a way she can better understand.
Unfortunately no amount of physio is going to work miracles.
Keep on at the "professionals" even if they consider you are being awkward.
Good luck.
As a retired neuro physio I was fortunate to be able to keep my husband on his feet for longer than would have been the case. Definetlly get a physio who specialises in neurological conditions. Contact the charted society for physiotherapists for physios who specialise in neuro .
Help with chest problems would be benifial too. Good luck!
How can I get help from a Neuro Physio?
Growing tired of therapists in and out of the house
Any one using a in-home physical therapist for PSP patient?
Update on how well my mum is doing since leaving hospital 7 weeks ago 😁
Mum can still make me giggle
