Advice on motor neurone disease please

[rumred]

Hello my dad has been diagnosed with motor neurone disease and I wondered if anyone here had been through this and had advice. He's 79 and been unwell for some time. He's married but he and his wife don't like one another. It's a long miserable story.

He doesn't have much money either and I'm an only child, living 60miles away.

Any advice gratefully received

I have looked after many patients with MND. It really depends what type he has as to what type he has. The bulbar MND can affect swallowing, other types affect walking. It is a progressive disease and some people can deteriorate quickly. The MND association has lots of good information and are a valuable source of help.
Financially, if your dad is having difficulties on a daily basis he should put in a claim for Attendance allowance if he doesn't already get a disability benefit. Once AA is in place , it may make him more eligible to claim other benefits like pension credit if he is on a low income. he should be allocated a MND Nurse specialist who can advise on benefit entitlement and how things may progress. Your dad will need a lot of support physically and psychologically.

Thanks babyroobs
He's been really ill with pneumonia so no sign of leaving hospital yet
I'm meeting the mnd specialist on Thursday, I think she works for the association.
He's got bulbar mnd and does seem to be deteriorating fast. It's all a bit horrible and hard to know what will happen next
I'm trying to make sure everythings in place for when he hopefully goes home. Need to start a benefits claim too as he's not well off

Ask his consultant or MND nurse specialist whether he may be able to claim benefits under special rules - it will speed things up and the claim can processed quickly. Bulbar MND means he will likely have problems talking and swallowing, you need to be prepared that he may need a feeding tube to reduce the risks of aspiration pneumonia. There are various aids and gadgets that can make life easier for him if his speech is affected - your MND nurse can advise. Unfortunately deterioration can be fast as the muscles just get progressively weaker until they stop working. I'm sorry for what you are going through, it really is a devastating illness.

Thanks again for responding. I think he already has respiration pneumonia, they've put a feed tube up his nose and planning a stomach one when he's better. His voice is very faint now and the permanent oxygen mask doesn't help
It all looks bleak. The consultant was fairly upbeat last week but unfortunately the swallow problem wasn't dealt with quickly enough I don't think
I'm hoping the mnd advisor I'm meeting on Thursday can give me a clearer idea of what to expect.
After the fairly positive response from the consultant last Thursday, saying he'd hopefully be home this week, I had a call early Sunday saying he was so unwell we needed to go straight to the hospital. It was harrowing and I'm so confused about it.
Probably to be expected but still hard