What`s the link for ?
I noticed this, is was for something non MS, about tutoring and Portuguese.
I was given an MS nurse and referred to star team who organised neurophysio, speech & language, pain clinic, fatigue management and occupational therapy, who also organised adaptations to my home
The physios have been brilliant at helping with exercise and giving me manageable exercises to try on my own too.
Im in Cheadle, which comes under the Stockport/ Manchester area.
Thanks all. Great to have your feedback x
hey Soo
do you ever go to the ms therapy centre in trafford?
i go most tuesdays
carole x
Adding to this because I canāt believe how many people have been given support to exercise. GP, Neuro and MS Nurse all said it was someone elses responsibility to refer me, GP said I was too complicated for NHS physio! Iāve ended up paying privately, she largely just tried to relieve my tightness with massage. I also get very defeated by the āanyone can exerciseā mantra. My MS is largely invisible but I have overwhelming fatigue and any exercise (and I mean 4 minutes on an exercise bike two days running at the easiest setting) risks me being unwell for days, more and it becomes weeks) I am at my witās end. Arms are as weak as legs and itās all getting weaker, currently at the end of week 3 of a flare because I got the bus to and from a hospital appointment. Does anyone have any hope to offer me?
Have you tried something seriously gentle like just stretches? Or something seated like chair yoga?
I would suggest swimming (when I say swimming I donāt mean thrashing up and down doing lengths, I mean gentle movement in the pool, supported by one of those noodle floaty things) - but depends on how easy it is for you to get to the pool, and what access facilities it has. Our local one in Gloucester has a separate pool where they do quieter sessions to promote access e.g. sessions specifically for ladies and for older people etc. They have a hoist for those who need help to get in and out of the pool. I often see disabled people using the pool and pootling around with the noodles.
I hope you find something that suits you, as exercise and movement are so beneficial. Figure out what you CAN do, and build on that?
And if exercise on consecutive days wipes you out, then make sure you get a rest day after every active one, as far as possibleā¦
PS if the GP says the NHS canāt help you (implying a private non-NHS therapist could!) then try a different GP?
The MS Therapy Centres tend to have suitably experienced physios available and worth checking to see if you have one in range.
Failing that the MS Trust has good selection of exercises on their site and some may suit you. Stick within your comfort zone and you should be fine.
Hi, yes, Iāve got a few leg stretches which I try to do several times a day. One of the problems seems to be that my whole body goes tight now so my physio spends most of the session trying to loosen me up so that we can try to progress. I tried swimming (and physio has now explained that I mustnāt actually swim as it will put my neck in the wrong position) but it was too cold for me as I canāt do enough activity to warm my muscles up so everything got even tighter. Iāve asked to be referred for the hydrotherapy that they offer fibromyalgia patients because thatās all I can think of, but who knows when or if that will happen.
There really is nothing to build on though and I am getting so scared because I know if I get another relapse that will be it. My arms are so weak that even using a walking stick to help my legs causes problems. Thereās no way I could manage a manual chair, and yet the neuro says I have no loss of strength.
I just donāt understand it. My joints hurt so much and other people can hear my knees creak and yet apparently thereās no inflammation or arthritis. Physio says (as have all physios I have ever seen, that I have hypermobile joints so my ligaments take a lot of strain.
I just lie there doing pelvic floor squeezes and hope for the best!
.
I wish I could get to an MS Therapy Centre, I hear such good things about them, but there isnāt one near me.
Neurologists always emphasize the importance of staying active. They understand that exercise can play a significant role in maintaining joint flexibility, muscle strength, and overall mobility. Physiotherapy has been an essential part of people with MS as well, as it offers specialized exercises and techniques to address specific mobility challenges. Itās great to hear that youāre exploring exercise options for your mother with Primary Progressive MS. While everyoneās experience with MS is unique, exercise can be beneficial for many individuals with the condition. Engaging in activities like walking, swimming, or even an upper glute workout can help improve strength, balance, and coordination. Remember, when it comes to exercise and managing chronic conditions, itās essential to start slowly and listen to the body. Finding the right balance between challenging oneself and avoiding overexertion is crucial.