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trh29
16th September 2012, 00:27
My mum was diagnosed with mnd last month, her speech is greatly affected and people can't understand what she is saying. Unfortunately this has ruined her social life completely and she is desperately lonely. I care for her and see her everyday but she does not see any friends anymore as it is awkward for her not being able to talk. If there is anyone in the Brighton/Sussex area that is in a similar situation and feeling lonely she would really love to meet some new people who understand her situation.
It would also be nice for me to meet other carers as friends and family do not fully understand the situation so it would be nice to speak to someone in the same boat.
Please get in touch if you are in the area and in the same situation.

Toni

MikeFD
16th September 2012, 01:21
Hi Toni,

I would first suggest that you contact the Association Branch nearest to you, which looks likely to be the East Sussex branch in Lewes, BN7 1UE. The Branch Manager is Susan Smallwood, contact telephone number 01323 843084 or email: smallwood.sue@sky.com. They can most likely go some way to helping with the social element of your mum's situation.

I'd also recommend you to contact MND Connect on 08457 626262 or email mndconnect@mndassociation.org. They are available 9am to 5pm and 7pm to 10.30pm Mondays to Fridays. Full details are available by clicking the MND Connect tab at the top of this page.

The Connect service is for people living with MND, Carers, family members - and medical professionals too! They can give medical, social, practical and financial information, offer you individual help and advice and, again, put you in touch with your local Branch and Regional Care Development Adviser who, in turn, can arrange for an Association Visitor to call, if you so wish.

Association Visitors are trained volunteers who are wholly familiar with the difficulties that may arise after a diagnosis of MND has been made, and can help patients and carers alike to best benefit from the care plan put in place by their medical team. They are also happy to talk about problems that may arise and try to find the best individual solution - or just have a chat over a nice cuppa.

Hope this will help you to get the advice you need,

Best wishes,

Mike.

trh29
16th September 2012, 14:17
Thanks for the info Mike, its so nice to know there is support out there. I did contact MND connect about 3 weeks ago and an association visitor was supposed to be contacting me but I still haven't heard anything. I will give them another ring and make sure they have the right number for me.
I will definately give the lewes branch a call as well though as it sounds like this may be a great way for mum to meet new people.
Thanks again for the reply and pointing me in the right direction.

Toni

pete
16th September 2012, 15:13
Hi trh29,

Wanted to say hello, as one who knows how your mom feels ,it is a hard task to get to terms with, I wonder has she begun to use any communication aid ,as it is never the same as speaking with your own voice ,but at least she would be able to tell you via an aid , Mikes advice is very sound and hope you get help. she does not have to feel isolated ,there are quite a few folk on the forum who are in the same situation, so don't be afraid to as if there is anything we can do to assist, I guess she has been suffering problems for some time as speech isn't normally the first sign that things are not quite as they should be .

regards
pete

trh29
16th September 2012, 17:49
Hi pete,

Thanks for the reply. I did speak to her about speech aids but she is adamant that she doesn't want one and is quite happy with a pen and paper at the moment. In all honesty I think its quicker for her to write than it is to type anyway.
I think she is possibly a bit of an unusual case from what the doctors have said as her speech was the first sign that something was wrong. It has progressed over the last year from a slight slur and has got rapidly worse over the last 3 months, she also developed swallowing problems about 6 months ago but still has no problems below the neck.
Thank you for making me feel so welcome as I'm sure I will have many questions and it is nice to know there is people I can talk to on here.

Terry
16th September 2012, 19:44
Hi Toni;
You are very welcome here. Sorry to be a bit negative but it would be good to try a keyboard communication device such as a lightwriter. Your mums hand control might get worse and if she could get used to an aid it might make things easier later on. Your speech therapist might be able to get one free from the Mnda. There are a lot of things out there to help communication. I found that my speech and swallowing went downhill very quickly, but I seemed to get used to it and cope better with swallowing.
Best wishes Terry

trh29
16th September 2012, 21:59
Thanks for the advice Terry, I never actually though of it like that. I may try and gently persuade her to try one, she is rather stubborn though! Hopefully she would see the logic in it and give it a go. It's good to hear that you seem to be coping with the swallowing as I worry terribly about that with mum, maybe she too will get used to it.

Derek_
18th September 2012, 11:08
Hi Toni,
I ain't been on here for sometime. I go to the Lewes branch of the MNDA, and the people there like Sue Smallwood are wonderful people.
I wanted a communication aid, and they installed JayBee on my laptop which is a brillient aid in communications. The next meeting is at Ringmer village hall on October the 24th at 7.30pm in the evening.

Proffesser Nigel Leigh who worked at Kings college hospital is now Patron of the Lewes branch, and he will be at Ringmer on the 24th of October.
You can email me privately if you wish, .......Derek

trh29
26th September 2012, 16:03
Hi Derek,

Sorry for the late reply, things have been a bit hectic lately! I am not sure how to email you privately, I am new to this! Perhaps you could enlighten me as I would be interested in getting in contact with someone at the Lewes branch.

Toni

pete
26th September 2012, 17:15
Hi Toni,

If you click private messages at the top of this page a form will come up enter the persons name and type in your email and send , Good luck
pete

Robyn Copley-Hirst
27th September 2012, 10:56
Hi Toni,

Pete's instructions will work for you perfectly.

You can also click on someones name when you see them in a thread. A box should then pop up over their name with the option to Private Message, Email (if they have made this an option), view their profile or view other posts that member has made.

I hope that helps,

Robyn

john
27th September 2012, 13:34
Robyn,
As a newcomer will Toni have had all these features available before now?

John

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