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Posted: Thu Feb 11, 2021 9:59 pm
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.
Posted: Thu Feb 11, 2021 10:50 pm
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.
Posted: Thu Feb 11, 2021 11:48 pm
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
Posted: Fri Feb 12, 2021 4:00 am
Welcome to the forum. Do you get any support at all?
Are you aware of the MSA Trust?
Posted: Fri Feb 12, 2021 9:08 am
yes I am aware of the MSA trust and will hopefully be able to attend the next face to face meeting
Posted: Fri Feb 12, 2021 9:20 am
Good morning Brenda
Do I assume you are aware of ....
https://therapy-box.co.uk/post/communic ... u-have-msa
Posted: Fri Feb 12, 2021 11:10 am
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.
Posted: Fri Feb 12, 2021 11:20 am
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:
Posted: Fri Feb 12, 2021 8:56 pm
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.
Posted: Fri Feb 12, 2021 9:00 pm
what day and time do you hold the online get togethers? If I am available I would like to participate.