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Standardbeatz
21st August 2019, 21:19
Hi Everyone
Diagnosis a couple of months ago so still in a bit of a weird state of mind.
As I'm at a fairly early stage I'm still able to walk a bit with a limp and can poodle about on an ebike.
I would like access to some advice and guidance from professionals (physiotherapists) with direct experience of people with mnd regarding what exercise is beneficial and what would actually do more harm than good. I'm worried that if I push myself too much it will have the opposite effect to that intended.
Can anyone suggest what route I should take? Is my GP the first port of call? Do the NHS have staff with this sort of experience?
As you can see, this is all a bit new to me!

Thanks for your time

Standardbeatz

Ellie
21st August 2019, 21:45
Hi Beatz,

If you're lucky, there'll be a good NHS Physiotherapist in your area - some people don't have a physio, some people have one but may as well not!!!

Ask your GP, or do you have an OT or Community Nurse? (If not, you should) Did your MND Clinic mention their Physiotherapist? I acknowledge your head was probably not in a 'taking in information' mode if it was your diagnosis appointment :(

Another great resource is your local hospice - yeah, I know, a hospice, is she serious??!! They are terrific places for us with Physios, OTs, Social Workers, Nurses, Complementary Therapists and focus very much on getting the most out of living...

Most need a referral from one of your healthcare professionals and offer a day programme of varying forms.

You're correct on not overdoing things but it is good to keep moving and it's also important to get a physio who knows how neurological clients differ from sports injury clients!

Take care.

Love Ellie.

Kayleigh
21st August 2019, 22:40
Hi Standardbeatz,

In addition to Ellie's great advice, the MNDA provide information about Physiotherapy on their website - if you click on the link below, it will take you to the 'Information for people with oraffected by MND' webpage. Then click on the dropdown 'Information Sheets' and scroll down to Information Sheet '6A Physiotherapy':-

http://https://www.mndassociation.org/support-and-information/information-resources/information-for-people-with-or-affected-by-mnd/ (https://www.mndassociation.org/support-and-information/information-resources/information-for-people-with-or-affected-by-mnd/)

Also, your local Regional Care Development Adviser should know what services are available in your region and how to access them. You might wish to get in touch with your local Adviser, if you haven't done done so already - for further information about the local Advisers, please click on the link below:-
https://www.mndassociation.org/support-and-information/local-support/mnd-regional-care-development-advisers/

Very best wishes to you and your family,
Kayleigh

Terry
22nd August 2019, 01:08
Hi Standardbeatz,

I have always done exercise and joined a private gym soon after diagnosis. As much as you are tempted don't over do things, I think that over stressing your muscles or getting very out of breath is bad for us. Most physios and trainers don't understand this so tell them that.

You want exercises that keep your range of movement in every way if possible.

Doctors sometimes have links to gym's and you might get a reduced rate and a trainer for six sessions.

Many hospices have gym's with trained staff.

Also your Mnd team should include a physio and they should know about it all.

Exercise for us is not really about building up muscles and fitness but more like trying to help keep muscles etc moving and in as good as condition as possible.

Many of us can't do exercise or are very limited but it is still important that the limbs and joints are moved even if someone moves them.

Love Terry

Doug Carpenter
22nd August 2019, 09:10
Hi Beatz

Gyms immediately spring to mind when we think about exercise, but may I pass on a tip my specialist neuro physio gave me: swimming.

For a while, when I was more mobile, I went to a sports centre with a big swimming pool that had dedicated sessions for disabled people. I don't go any longer because getting to and into the centre was too much of a hassle - and the great expanse of hard, wet, slippery tiles became rather scary, but it was very therapeutic. Nothing energetic, but it enables you to exercise muscles that wouldn't, for example, weight bear, on land.

Doug

Standardbeatz
22nd August 2019, 10:01
Some sound advice there.

You lot are great!

Standardbeatz

Lynne K
22nd August 2019, 11:18
Hi Beatz. Your head is bound to be all over the place after your diagnosis. About exercise: I was referred to our local gym by my physio. GPs and other health professionals can refer. The programme is called Beats. Lynne

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