PSP Association
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Massage therapy

Hi

I've seen a few members post that they have massage for their LO. Is this something youve arranged privately or has a health professional arranged?

I think Mum would benefit from this alot now as stiffness and spasms are becoming worse and worse. Her legs never stop moving and it is feared she will end up contracted legs bent up as this is her go to position. It has been discusswd by neuro team and they don't believe there is an effective medication to help as won't work with the brain disease.

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Hi Spiralsparkle

We used to have a lady come in that we paid privately to massage dad’s legs, very therapeutic

This may be a silly idea but you could see if any local salons have someone good that would come out?

Plus I think the neuro team could be offering physio?

X

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The neuro physio said massage would be good but didn't offer it!

I've left message with community matron also.

Will look around online for suitable private people. Does your Dad get massage now at the home?

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Sorry coming back again - We found a lot of massage folk do the soft music and scented oils and were 'gentle'. It seemed to be all about a nice experience.

Then we got a woman who did 'Sports Massage' - She really had the tech. knowledge of what she was doing and still played nice music. ;)

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Yes that's what I'm wondering if do it privately what sort of therapist would be the best kind.

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No not at the home but to be honest I haven’t asked....

When dad used to have it, it was due to swollen feet and legs, that problem had stopped as is bedbound 😓 x

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I found the person we use through a friend. It was her friend’s daughter. She works at a spa but does house calls which was what I needed. Check with you friends and family to see if they know anyone.

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Hi Spiralsparkle

You can ask the GP to prescribe. Its covered under 'NHS Choices' We were getting it through direct payments on CHC for a while and then the CHC was stopped and when we got it re-started we came off the direct payments. So funded it ourselves.

The thing is with direct payments one can just go out there and pay the masseuse. I'm not sure how payments would work through the GP.

Anyway reports online say it very much depends on the GP.

Having said all of that in Parkinson's Pain management (and PSP is a close relative) massage is one of the top recommended treatments for pain.

Good luck

Kevin

xx

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Ok thanks. I will go that route after spoken to neuro team again if they can get it under way

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Great idea - I didn't think of that.

The neuro team might well write to the GP recommending it. Most GPs follow specialists recommendations.

Good luck.

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Thank you.

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I have my left arm massaged once a week to keep muscle tone, she also straightens it but a few minutes after release it is back to being across my waist. It seems the brain controls the position but maybe botox is needed to relax the muscles. I have read there are other issues with the use of botox.

Patrick.

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Who does this for you? Do you find it helps?

They are holding off from botox currently and Mum isn't that keen on having the injections. They can only do it a number of times I was told.

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I took Steve regularly to an Osteopath. He did lots of massage, stretching and moving of all limbs. Positive it helped. Might not have been any benefit to his brain, but it made him feel better, which in my book, is all that mattered.

Lots of love

Anne

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Did you need to get Steve onto a treatment bench?

Sounds like it was very beneficial indeed.

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Yes. It wasn't easy, but the guy was very good and understood the problems.

Lots of love

Anne

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