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Elaine
25th April 2011, 21:04
My brother in law was diagnosed last April 2010 with Bulbar Palsy. He now uses a lite writer as he can no longer speak. This has been a wonderful aid for him. He has always been a walker and has managed a few recent long walks but his neck support has caused some difficulties and is sore. His left side is now failing and he has been given a foot support.

We live some distance from him and would like to help more but are not sure how to help. He refuses to go to his local MND group but his wife does go to the meetings and has found them very useful.

E mails keep us in contact with the family but my husband is very depressed at the fast decline of his brother. His brother has been successfully fitted with a PEG but still insists on having family meals which are very stressful.

How can we help from a distance.

How fast does this condition deterioate?

eshep
25th April 2011, 21:21
Hi Elaine,

I am sure you will find support from others on the forum who have been in a similar situation to you and your family.

It is positive that your brother-in-law's wife attends local meetings because this is a great way to find out information and get local support from others in the same position.

As ever, if you want and specific information, give MND Connect a call (08457 626262) and they will point you in the right direction.

Emily

Robin142857
26th April 2011, 16:00
Elaine,
So sorry to hear about your brother-in-law and his problems. I have no experence of Bulbar palsy and the only thing I can tell you is that MND generally progresses at a speed that it alone decides. And that can be fast, or slow, or a mixture of both, and even with plateaus where decline stops for a while. Maybe that rule applies to the Bulbar palsy form too. As to help - perhaps one starting point would be to ask him directly, or his wife if he won't tell you. Good luck.

Robin

bern47
27th May 2011, 13:53
hi elaine ,sorry to hear about your bother in law ,im a carer for my mum who too was diagnosed last jan 2010 with bulbar palsy,it started with her speech ,swallowing became difficult in august ,so she had Peg fitted ,all she could manage threw her mouth was food sieved threw a mesh bag or tiramasue its a dessert ,i think thats how its spelt,sieved chicken soup etc.we were told she couldnt eat lumpy food incase it went down the wrong way an head into her lungs ,its was very frustrating for her and was and still very scary because you dont know what happens next and she is still coming to terms with it i think .she wont talk about it ,december her voice went completly and couldnt open her mouth due to muscles in her jaw an throat have gone,she suffers from alot of built up mucus and saliva ,she is using suction machine and taking Mucodyne for the secretions,her neck muscles are gone she has no support over her head we r having bother trying to get a head support for her,she also went threw choking fits scary and frightening but the main thing i tell mam is dont panic try to relax and breathe easy nice and slow try to keep the head at an upright angle so the can get a bit of air .mum is on jevity feed at night and ensure to give her all the vitamins she needs,aswell the M.nd carer coordinatr calls to mam and has a chat with her as she too is reluctant about talking to outsiders about her conditions she has also refused to leave her home since last august,i dont know if that was any help but i do go on too much sorry ,good luck

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