My mum has been struggling with the symptoms of CBD and now has a diagnosis.
Her right hand/arm is now of little use (along with other issues.. speech etc) - has anyone had any luck or seen progress with a physio - or are you aware of any good physio practitioners in the North west (UK) who know of this disease and may afford some practical help.
Thankyou
Hi Saj12
Our physio referrals came through our rehab unit with the Parkinsons Team but they were 2/3 at most and mainly to advise us of what to do. At that time we were working with Dad to keep his muscle strength. Through the Parkinson’s nurses we were referred to the Botox clinic, who helped to inject in muscles to help the cramping. It only worked once for Dad though.
We took Dad privately to a Sports Massage Therapist who helped to maintain his suppleness and strength when Dad could still get about. Now we have a massage therapist come to the house (pre-tier 3/4) which provides him with some relief. I’m afraid I can’t recommend anyone since we’re in the East midlands.
We certainly felt it was worth it for mobility abs relief for the cramping.
I hope you find something helpful soon.
Thankyou for sharing your experiences.
I think you need to look for a neurological physiotherapist. I know there is one in Cheadle near Stockport that has experience of Parkinson's and CBD.
Mum tried physiotherapy briefly. You must make sure it's a neurological physio though as she had the council ones advise her initially and they were actively dangerous because they had no concept that she had no balance. They helped her learn how to relax her clenched muscles though I think that's beyond her now. It's important to realise that physio won't restore anything that's lost with CBD but might provide some relief or prolong muscle tone.
Really appreciate this info - you wouldn't have more details on the Physio (name, no?). Thanks
Here's the link to their website.: neurologicalphysiotherapy.c...
They also list a number of Parkinson activity support groups which might be useful as well. The Alex Project in Bollington isn't mentioned but I know they are very welcoming to PSP/CBD sufferers. As is the way now, they are doing on-line exercise classes.
Hope you find something helpful. xxx
My husband went to classes for people with Parkinson’s. After that had a private trainer, (same young lady) who came to the house to help with his movement. I am positive it kept his strength up, it was good for his mental health as well. I also took him to an osteopath to keep him well stretched. Of course none of this actually stopped this evil disease, but like I said, it was something he could do and enjoyed, right up until the end. It will be worth every penny and effort on your part.
Sending big hug and much love
Lots of love
Anne
Thanks for this information, anything is appreciated - the trainer you used were they in the NW?
Motion rehab based on Leeds are your answer if you can drive over there.. they are neuro physio specialists and have an amazing gym but also do home visits. They work all over Yorkshire and Humberside. I thoroughly recommend them for CBD treatment
Hi,
My wife Ruth is in the same condition as your mum. My advice would be that any physio will be of benefit - just to keep her moving and if possible a bit of walking. The key is to find a local one and try to get your Mum there every week - or as frequently as possible. Got to try to slow down the deterioration - but be at peace with the fact that it is a losing battle -so no beating yourself up!
Richard
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