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Carers UK Forum • Newbie
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Newbie

Posted: Thu Feb 11, 2021 9:59 pm
by Brenda_2102
Hi, I am new to the forum and am finding it difficult to make a start on my concerns. I suppose I don't want to feel alone.
My husband has a neurological degenerative disease, no speech and poor mobility. Ordinarily I would be meeting up with friends with covid this is impossible. I don't feel that I can ring my friends as I feel it is disloyal to be talking about my husband and my feelings in front of him.

Re: Newbie

Posted: Thu Feb 11, 2021 10:50 pm
by sunnydisposition
Hi & welcome Brenda

I don't think you are alone in how you are feeling. Many have hopefully temporarily lost. Access to their support networks.

You certainly are not alone on this forum. The forum is about getting support and not feeling alone. There are a lot of knowledgeable carers on the forum. And I suspect you may also be very knowledgeable. We all learn of each other.

Can you give some information ...on how long have you been a carer. What ages are you and your husband. What communication method do you use with your husband. Due to lose of your husband speech does this have a double impact. Given the current situation with Covid.

Re: Newbie

Posted: Thu Feb 11, 2021 11:48 pm
by Brenda_2102
Thank you for that it helps knowing others are having the same concerns
Nick (age 60) was diagnosed with MSA 3 years ago. His first symptom was poor speech and quite quickly changes in his balance started and he started having falls. Luckily without any major injury.
We have tried a number of things to aid communication from hand signals to typing out the words all of which are slow and cumbersome. it is also a lot of guess work by me, it is like playing charades permanently. It is frustrating and tiring. We have an appointment next week with an NHS assessor/provider of equipment specific to his needed

Re: Newbie

Posted: Fri Feb 12, 2021 4:00 am
by bowlingbun
Welcome to the forum. Do you get any support at all?
Are you aware of the MSA Trust?

Re: Newbie

Posted: Fri Feb 12, 2021 9:08 am
by Brenda_2102
Hi,
yes I am aware of the MSA trust and will hopefully be able to attend the next face to face meeting

Re: Newbie

Posted: Fri Feb 12, 2021 9:20 am
by sunnydisposition
Good morning Brenda

Do I assume you are aware of ....

https://therapy-box.co.uk/post/communic ... u-have-msa

Re: Newbie

Posted: Fri Feb 12, 2021 11:10 am
by bowlingbun
I would get in touch with the Trust, privately, and ask what support everyone else gets.
I've learned more about things from other parents than from Social Services through the years.

Re: Newbie

Posted: Fri Feb 12, 2021 11:20 am
by Jane Carers UK
Hello Brenda, welcome to the forum

As others have said, you aren't alone and lots of people on here will relate to your feelings. It's very hard to be without your usual support systems.

We're running weekly online meet ups for carers to chat informally and take a bit of time for themselves. You'd be very welcome to join, sign up is here:

https://www.carersuk.org/search/cuppa

Best wishes

Jane

Re: Newbie

Posted: Fri Feb 12, 2021 8:56 pm
by Brenda_2102
Thanks I will look at the therapy box site, I am not really familiar with very much on offer we have been managing by ourselves.


I

Re: Newbie

Posted: Fri Feb 12, 2021 9:00 pm
by Brenda_2102
Jane,
what day and time do you hold the online get togethers? If I am available I would like to participate.
Thank you