Brother with MND moving back to where family are ...

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Bamba

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Joined
Oct 1, 2017
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2
Reason
Loved one DX
Country
UK
State
County Durham
City
SHILDON
Hi everyone - I just joined today. Don't even know if I'm posting in the correct forum?

Anyway, we're in the UK. My brother was just diagnosed in late April/early May this year with MND. This has progressed really swiftly and he now uses a wheelchair.

He's been living at the other end of the UK (we're in the North East - he was right down in the West Country). His home was on a back-to-nature Community co-operative, living off the land - all environmentally friendly and ecologically sound! He was living his dream and this disease struck! We've been through to visit a few times and it's a fantastic place - but it's for people who are really in good health and are fit and strong.

He's finally agreed to come back up to the North East. back to our original home town (I'm about 25 miles away) and our other brother has found him a suitable ground floor apartment.

This is really tough for him because he's giving up on something that meant a great deal to him - he wanted to live and die at the place where he now is.

He comes back up here in about 10 days' time.

Any tips or advice?
 
Hi sorry about your brother. I am glad he is moving back near family.

Are you/ he hooked in with the local MNDA and services? Is the flat not just ground floor, but accessible for disability especially the bathroom?

Please ask any specific questions that come to mind and feel free to browse the forum. Lots of information about things you may not even know to ask.

Re where to post. I did move this because I think you want answers from carers too not just PALS ( people with ALS). As a general guideline: discussions about topic that may be of interest to both PALS and CALS are best here in the general subforum. The PALS is mostky for discussion among PALS and the CALS is for carers to discuss their special needs and challenges. Hope this helps!
 
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Thanks Nikki. Our youngest brother chose the flat and checked its suitability. I'm the one who's getting the accessories (shower chair is a MUST!). I worked with vulnerable adults as a Care/Support worker for 7 years so I'm fairly familiar with disability needs.

I think a boomerang board/banana board would be useful for him transferring to car from wheelchair and vice versa.

I'm going to get him registered with a doctor near where he lives, and he needs new spectacles etc ...

Those are the practicalities - but I worry about the emotional anguish he will be experiencing leaving his lifestyle behind when he moves.
 
Bamba,

I am very sorry to hear about the loss of home and independence that your brother must be feeling. However he can continue to interact with people, causes or groups he cares about in his new setting and circumstances, I would try to help him forge those connections as soon as he returns home.

Best,
Laurie
 
Yes I agree with Laurie- very important to help him still feel connected to the things he cares about. I think you are in a good position to do that because you have a strong grasp on the practicalities so you will not be distracted trying to sort that out.

I am very sorry this happened to your brother, sounds like he has a great family.
 
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