who can i speak to?

[Monkeyfeet1]

I was diagnosed with MSA in 2022. I don’t want to diss my husband because he does

Everything for me. However , I’m very organised. He is burying his head in the sand and because o can’t talki cannot organise anything.

[Gill-C]

oh that’s tough. Marie Curie do great welfare advice eg Power of Attorney, Statement of Wishes. Living Wills etc

You could probably email them for advice and perhaps ask for a home visit? Could you start with practical things like that and sell it to your husband as a standard service for carers and those with life limiting conditions?

Maybe try emailing the MSA welfare advisors for ideas too? They are a mine of information

[Frenchoak]

I feel the same way. My husband does all the practical stuff that I used to, like shopping, cooking, cleaning and driving, but I can't cope so well with those things now and I feel like he doesn't understand, or give me any allowances for having MSA-C. I understand completely where you're coming from, and it's hard and lonely sometimes 😔 I'm very organised too, so it's really hard not doing so much yourself now! I'm sure msa trust would help you with bigger things like LPA etc but sometimes it's the little things you want to do, like cut your toenails or file your nails, write a card out, make a complicated phone call etc.!? Here's a few ideas that may help you that I use; little basket of things by where I sit, so I don't have to keep getting up or ask! Got tablets, book, Scissors, letter opener, pens (not that I can write now!), hand exercise balls, Dictaphone, etc! A Dymo labelling machine has been invaluable ! Mobile phone lanyard, several walking sticks in numerous locations! Files for hospital letters, address book just for your health contacts. I have a manicure 💅 at her shop, but mobile hairdresser comes to house. Bags for different activities I go to with the stuff I need. Hope some ideas help and makes life a bit easier & make you feel a bit more organised &in control?! But I know exactly what you're saying ! Take care. 😀

[Monkeyfeet1]

Thank you for your invaluable advice, Gill& Frenchoak

[PineEater]

Monkeyfeet1

Hi. Sorry you have msa. I saw your post but I am surprised that only two persons have replied so far. I think you need to elaborate what you have said so that many more people could give their suggestions:

...He is burying his head in the sand...Best wishes and regards

[fixedit]

you’re welcome to talk to us … it sounds like you need to talk to someone.

[Monkeyfeet1 in reply to fixedit]

Thank you 🙏🏼

That I do xxxx

[fixedit in reply to Monkeyfeet1]

Might you be able to go to one of the MSA Trust regional meetings? They are friendly and informal, and not huge either, because there are only a few of us with MSA or caring for people with MSA. There is probably one in your area. Get in touch with the MSA Trust to find out about it

msatrust.org.uk/support-for... .

It’s okay to go on your own as a carer. My sister went as the sister of someone with MSA and she’s in a completely different part of the country to me. See how it goes.

Tim

[Monkeyfeet1 in reply to fixedit]

Thank you, Tim. There isn’t a face to face one locally but I’ve joined a online group

[TK-67]

Hi - bit of a delayed response, I wonder whether you have thought of contacting your local hospice, I know sometimes it's a scary word but for us, it was a turning point both for mum and us as a family and can support you in so many ways. giving you and maybe your husband somewhere to go and to support? Just a thought.

[Monkeyfeet1]

thank you-I’ve contacted them x