MS Society UK | Forum

Looking for help and guidance

Hello everyone,
I’m new to this forum and asking for help! My husband will be 60 this year and was diagnosed with rrms at age 23, (just before we got married). We’ve done hugely well, living with ms in all areas of our life. 3 years ago, after a hospital stay because my husband got a cold, he had an mri scan which concluded that he now has progressed to secondary progressive ms. He was offered some medicine (didn’t catch the name) that might help his muscle spasms but might weaken him and as he is a strong man, he declined the offer.
My husband now uses a mobility scooter in and out of the house but has trouble getting up from sitting and in and out of bed. He’s starting to have trouble to dress and feed himself, all of which I lovingly help him with as necessary.
My question is, how or where can I get him help. It’s agony for me to see him struggle and he’s had a few falls recently.
I read somewhere that nowadays people should have a ‘team’ available, but we seem to have slipped the net.! We are on the border of 2 counties when it comes to hospital visits and kind of feel that one county wouldn’t mind letting the other county deal with us and vice versa!
Thank you for reading my first posting here. Kind regards Christina

Hi Christina,

It sounds like you & your husband have been coping very well for a long time. I would start my quest for help with my GP or any MS nurse if one is in place. I would also write to my neurologist (or their secretary) to ask for recommendation of suitable sources of support. If this is not working, try to contact social services and tell them there are vulnerable adults who need some help.

I hope that you both get some useful help soon.
All the best

Hi and welcome to the gang!
I’ve had PPMS for 24 years.

I rely heavily on hubby and 2 carers for many things.

I would suggest getting in touch with Social Services. They will do a care assessment for you and hubby.

I wonder if baclofen was the drug offered. It helps with stiffness/spasticity, but too much can cause falls…as I found out for myself!

Best wishes, Boudsx