Forum

Exercise?

Hi all

just wondering if your health care providers have ever suggested exercise recommendations or referred you for physio to help with mobility? My mother had Primary progressive MS and just wanted to see if exercise has ever been encouraged by your neurologist/gp etc

thanks for your time!

N

Hiya N,

Exercise is essential; remember the old saying ‘move it or lose it.’

Believe it or not, Mr. Motivator is my guru; see https://support.mstrust.org.uk/shop?prodid=245

Give your mum my luv

George

Thanks for your reply. We know it’s essential and completely agree with your phrase there :slight_smile: we just want to see how often exercise gets recommended by health professionals? We’ve just been offered medication so far. It’s an interest of ours.

Thanks for the link George.

1 Like

Thanks. How often is exercise suggested by your neurologist/gp though? Everyone we’ve been in contact with ms hasn’t been offered any advice/referrals for exercise. I guess we are just interested in other people’s experiences. We love mr motivator too!

The Barts Blog has covered this subject a lot and always recommend the benefits of exercise.

“Should you be doing anything about exercise? Yes, you should just do it. The health benefits of exercise are are now well established, whether or not you have MS. What if you are too disabled to exercise? I have mentioned in the past that regardless of your level of disability there are exercises you can do. So please speak to your physiotherapist about designing you a realistic and pragmatic exercise programme. If you don’t have a physiotherapist ask your neurologist or nurse specialist to refer you to one. There are also a large number of online self-help programmes that you can engage in. I am aware that exercise is easier said than done and I have no easy way of nudging everyone so they adopt this as part of their routine MS therapy package. May be you as a community can help each other, or help us, with getting exercise adopted as part of the standard treatment for MS.”

My MS nurse she referred me to a neurophysiotherapist. We have agreed a set of exercises to improve flexibility and movement.

It’s remarkably effective in tackling spasticity and enabling me to do a wider range of activities.

Regards,

John

Does using my gob and excessive talking count as exercise?

Hope so, `cos I get very little other kind!

pollsx

Thanks for all the feedback so far!!

We are going to look into exercise being prescribed as part of treatment for MS. Sounds like a big project!

Just to add to what’s already been suggested, I find the exercises invaluable.

I was referred to a neurophysiotherapist about two years ago and we have developed a regime of exercises, which I can do, and which help me with my particular areas of concern.

To get a flavour of the sorts of activities which might be useful, take a look at the ones shown on the MS Trust website.

I have PPMS and I am determined to do whatever I can to slow down the progression. Have you also spoken to your mother about other approaches to managing MS? I would recommend taking a look at the OMS website where you can obtain a free copy of the complete programme under the Recovery Program tab.

If you are in the mood for further research I would recommend looking at the following:

Supplements, in particular high doses of Vitamin D (5000iu). Magnesium is also essential for any spasms.

Biotin or Vitamin B7 in high doses (300mgs daily) is promising and may help repair the myelin sheath.

The use of CBD to reduce neuropathic pain, rather than prescription drugs.

There are lots of threads about the above in the Forum and there are various groups on Facebook.

I am sorry to have thrown so much at you, but I will gladly answer any questions you might have if I am able to.

Best wishes to you and your Mum.

Alun

Hi,

Thanks you so much for your comment. She has PPMS too. I work as a dietitian so familiar with what you are suggesting. There’s definitely so much research that needs to be done. I don’t understand how it’s exercise intervention isn’t provided routinely as part of a patients care. My mother and uncle who has RR MS weren’t offering any type of intervention other than medication.

thanks again

N

N,

I am sorry if I sounded patronising.

To answer your question, however, I believe we are at the mercy of our adversary, the postcode lottery. I live in Suffolk, and on diagnosis, I was referred to an agency which runs services for the NHS. I was allocated an MS nurse, referred to a physiotherapist and the OT team came out to assess my house and then provided many adaptations, for free.

I cannot see why this cannot be provided nationally.

Best wishes

Alun

Not at all Alun, I appreciate your comments

hi nal

i’m the same as alun in that my ms nurse referred me for neurophysio and occupational therapy.

i’m in bolton, greater manchester.

have a look around the place your mum sees her neuro.

there is probably a sign for neuro rehab which is the place she needs.

simple ankle exercises are easy and quick.

carole x

I was referred by my consultant when diagnosed to neurophysio, they helped me with exercises, taught me tai chi in an exercise class run at the hospital and also referred me to OT for adaptations to the house and to orthotics for drop foot.

If I feel I need any more help my MS nurse can refer me back to them at any time.

PS I’m at the QE in Brum

The MS Society have exercises for MS with Sally Gunnell.

For most of the exercises, there is an alternative option for people who have difficulties with mobility or balance or who are exercising in a seated position.

The exercise programme contains a range of simple, gentle exercises and stretches that can help people with varying levels of disability strengthen their muscles and feel fitter. A warm up is followed by a range of exercises – including squats, pelvic tilts, lunges and shoulder rotations – all demonstrated by Sally and people living with MS.

Free to watch, just click on the links. A DVD can be ordered for free instead.

If you live anywhere an MS Therapy Centre, they will almost certainly have tailored courses - if your mum has real mobility problems, check out Feldenkrais.

I do chair based Pilates - very good for balance and has the added benefit of not being too energetic, so you don’t get too hot. Mine isn’t an MS-specific class, it’s just over 50s, so we’re all in varying degrees of mobility.

Yoga is another recommended regime if your mum doesn’t cope well with heat.

If you have a reasonably active local MS Society, get involved - ours have organised a specifically designed exercise courses - whatever you’re interested in - ours do walking football, amongst other things, for example. And they are quite happy to have a plus one along, so your Mum can take you along too if that would help.

Your mum’s MS nurse will probably be able to get you on the list for neuro physio at the very least, and will probably know of more.

Exercise generally - just don’t overdo it, and your mum will find it beneficial - apart from anything else, it releases endorphins, which are the body’s natural happy juice - that’s why some people get addicted to exercise - all of which will make her feel better.

You don’t need to do a prescribed exercise regime, just do whatever suits your mum - it’s all good. But if she enjoys her exercise, she’s more likely to do it, do bear that in mind.

Jo x

I have seen six different neurologists since I was diagnosed with MS. None of them has ever recommended that I exercise, or even asked me about what exercise I do. However last time I saw my current neurologist, he suggested that I get a standing frame. Does standing count as exercise?

Hi there,

Exercises are must to recover fast and remain healthy.

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Im not sure that is does! Such a shame that different locations don’t all provide referrals for exercise as a standard.

thank you all for your comments. It’s been really useful.

N