View Full Version : petal

8th January 2012, 23:23
Hi first time on here,my husband has mnd since aug 2010 it is mostly in his legs they are useless so he
does a lot of sitting around we do not have any physio treatment at all and yesterday he was rushed into hospital thinking it was a heart attack but he had a pulmnary embolism i am not great at spelling it was of course caused by his lack of movement we have an o t who comes to see us if we call her but apart from that we see no one i am his full time carer and wonder if this is normal, i have read many posts but not registered before i am not good at opening up or computer s. hope practise makes perfect

9th January 2012, 00:39
Hi petal and welcome to the forum.

I am glad that you've managed to make a start with the computer because, as you will be aware if you've looked around the forum at all, this is a great source of help and advice, with topics ranging from fundraising to benefits, medication, research and all ports in between.

Don't be afraid to ask advice on any subject that's worrying you, someone here will have had a similar experience and will be happy to help. In the meantime, please call MNDA Connect on 08457 626262 or you can email them on mndconnect@mndassociation.org. They will be only to pleased to talk through with you anything you need advice on - or simply chat with you and lend a sympathetic ear.

They can also help to integrate the Association's efforts with your husband's care team, and put you in touch with your local branch of the Association who can help in various ways. The Regional Care Coordinator for your area would be an early contact to make, as they can also arrange for an Association Visitor to call, if you wish, to offer direct help with your husband's ongoing care and try to help manage your situation as well as possible.

Full details for the Connect team are available if you click the MND Connect tab at the top of this page.

Keep in touch, and let us know how you are getting on.

Best wishes,


9th January 2012, 01:26
Hi Petal

I've had MND since December 2010 and regularly see the Speech and Language therapist who checks my eating, drinking and swallowing, the Physiotherapist who gives me different exercises to do and checks strength, balance, etc., and the Dietician to advise on high fat, high calorie foods that people with MND should be eating.
I've also see the local MND Association lady twice and the OT twice.

All were organised by the Consultant Neurologist who diagnosed my illness. Maybe give your Neurologist a ring and ask what support is available in your area, especially when it comes to Physio.

Best wishes, Paul

9th January 2012, 13:18
Thanks for your advice i will be chasing up some of your leads while my husband is in hospital .

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