who can i speak to?: I was diagnosed... - Multiple System A...

Multiple System Atrophy Trust

1,835 members1,483 posts

who can i speak to?

Monkeyfeet1 profile image
8 Replies

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.

Written by
Monkeyfeet1 profile image
Monkeyfeet1
To view profiles and participate in discussions please or .
8 Replies
Gill-C profile image
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 profile image
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 profile image
Monkeyfeet1

Thank you for your invaluable advice, Gill& Frenchoak

PineEater profile image
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 profile image
fixedit

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

Monkeyfeet1 profile image
Monkeyfeet1 in reply tofixedit

Thank you 🙏🏼

That I do xxxx

fixedit profile image
fixedit in reply toMonkeyfeet1

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 profile image
Monkeyfeet1 in reply tofixedit

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

Not what you're looking for?

You may also like...

Helping my brother who has MSA

My brother is currently in hospital 11 months now with MSA as a result of cronic alcohol abuse for...
scarke profile image

Has anyone tried Sertraline to help with MSA ?

Hello, My husband was diagnosed with MSA-P November 2021. Looking back symptoms started round...
JJAJJ profile image

New to this Forum

My husband has just been diagnosed with MSA after over a year of uncertainty whether it was...
Cat-gal profile image

Episodes of not being able to wake although can hear

my step dad has MSA P. A new symptom has just started happening where he goes unresponsive. It’s...
Rowljo profile image

I don’t understand

hi My husband was diagnosed with Parkinson’s in 2021 after a few years of dizziness and balance...
DeeMilo25 profile image

Moderation team

See all
JamesMSAT profile image
JamesMSATAdministrator
MSATKirsten profile image
MSATKirstenAdministrator
MSAAndy profile image
MSAAndyAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.