MND specific physio

[aussiegirl]

I still have a massage every week, which I think has helped me to still be able to walk after 7 years. It's painful having it, but I do feel the benefits. The provider tried to get me to see a Physiotherapist, but I was having none of it; a good massage therapist is worth their weight in gold, IMO.

[SallyAnnB]

Thanks Ellie. It’s good to hear another opinion on the subject that supports what I felt should be the case.

[Ellie]

I was told physio is only available for people who are in pain so I don’t qualify.

😲 Fat lot of good that concept is!!

Check with your hospice Sally Ann. You are correct in saying it's important not to forget about the muscles which still work, active exercise is important and, for muscles which don't work, passive movement is important. xx

[SallyAnnB]

I enquired about physiotherapy with the team that are supposed to be supporting me at my local hospital. I am still ambulant but I can feel my leg muscles getting weaker and my balance beginning to go. I thought physio might help me to preserve my mobility for as long as possible and give me some tips about preventing falls, but I was told physio is only available for people who are in pain so I don’t qualify. I saw a neurophysiotherapist privately before I was diagnosed and she gave me some hand and arm exercises which I feel have contributed to my still having reasonable strength and dexterity in those limbs.

[Ellie]

Maybe your avatar should be of Santa's Little Helper 😂😂😘

[matthew55]

Woof woof 😁😍😘😚xx

[Ellie]

🙄

As for the collar, maybe, just maybe... xx

[matthew55]

She seemed surprised that my head wouldn't move in the directions she was pushing it. She is bringing a set of collars for me to try. Just call me Fido! 😉😁😂🤣xx

[Ellie]

I saw a neuro physiotherapist who didn't seem to understand MND. 🤔🧐🙁😁xx

Hmmm, that's worrying...

Did they expect you to get better and recover some function 🤔 xx

[matthew55]

I saw a neuro physiotherapist who didn't seem to understand MND. 🤔🧐🙁😁xx

[MartinB]

Thanks all, I will speak with the Marie Curie lady we know

[Polly]

My husband had started to go to the day centre at our local hospice when COVID stopped all that support. But they have been absolutely brilliant, providing telephone support and advice. As soon as it was allowed, their physio started to visit and comes every week. He is very disabled now but she carries out gentle massage and stretching which is a great help. The complementary therapist has also helped and provides a cream with lavender and black pepper which I massage into his legs when he goes to bed. This has been really helpful with the muscle spasms which are troublesome at night and keep him awake.

[Mary C]

Hi Martin ,the physio who is part of palliative care team came out and showed me exercises to do to help prevent contracture of muscles.She left me an exercise sheet to follow daily and did a follow up visit.
I think the exercises help a little as left shoulder was painful pre exercises but that’s improved now.
Try asking the local hospice as I have found they are my main support.
Best wishes
Mary

[Shaun]

Hello Martin,
in some areas there are MS centres but they will accommodate MND , our local one has hydrotherapy pool and various other programmes, some bits are free and some things you pay for, may be worth spreading your search and not just look for MND related help
s

[Ellie]

Martin, I can't rememer if Caroline is linked in with her local hospice? They'll have a physiotherapist who should see her and she might get a few sessions there, so check first with the hospice.

I used to go for sessions to my hospice and had a mixture of passive and active physio - they also gave me the loan of a floor pedal machine, which was great. (I was very fortunate to have regular hydrotherapy too) Keeping joints moving is important, so you're on the right track and you might be lucky to have a community physiotherapist who can show you range of motion exercises. If you end up going private, choose carefully... xx