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Thanks Terry. As many of you have said, a problem appears, and as fast as you work out how to deal with it, another one appears. All we can do is take one day at a time. Tired, despondent, but...

Well, it’s been a rubbish day. Yesterday my husband felt really poorly. Our lovely GP came out and diagnosed a UTI. The medication upset his tum, and this, plus the infection, plus his ongoing...

Thanks to everyone who has offered advice. My biggest concern is whether the conversion suggested by the council OT is practicable, because of our concerns about ventilation and drainage. That’s...

I’ve not posted for some time, as things have been pretty much on an even keel, as much as they can be with MND! But we need to have adaptations to our house for the inevitable time when we need a...

Hi Debbie, yes, the physio said they will only provide this one. I would just have appreciated some guidance, rather than her saying go and try some out. He’s not up to it! I guess this wheelchair...

Hi Debbie, I don’t want to sound ungrateful as the physio has been helpful in lots of other ways. That’s a very kind offer. We are in the West Midlands.

My husband is still fairly mobile, but the long walk from car park to clinic to see the dietician today was very tiring for him. The physio ordered a wheelchair but it’s too heavy for me to lift in...

Although we are coping pretty well with my husband’s speech, at times I struggle with certain words, particularly later in the day when he gets tired. The speech therapist mentioned two speech apps...

Ellie, the physio got him to do various things with his feet, and as his movements were so strong, it is very unlikely to be foot drop. But the back problem is twisting his pelvis and affecting his...

Thanks for all your support. It went very well. They were friendly, helpful and gave a lot of good advice. They don’t feel that it is foot drop that led to his falls, but more likely were caused...

Thanks Lynne! X

You are right Terry, but that’s not really the problem. I know I overthink things, but I’m thinking of bigger things like access upstairs, and what if we need a bathroom downstairs. It’s very hard...

Tomorrow we have a physio and OT visit. I must confess that I am quite apprehensive. As no one has any idea of how quickly MND will progress, I have no idea of how this will impact on our house,...

Success! A call today from the community physio. She will visit next week along with an occupational therapist. It’s such a relief to know that local support is now forthcoming.

Thank you everyone, you have given useful advice and support.

Mandy, my husband definitely sounds like yours! I want him to carry on and do things but I’d like him to pace himself, and not do so...

Reading this again I apologise as I realise that many of you are coping with much worse problems. It’s just that it’s happened so quickly and seems to be developing so rapidly, I can’t believe that...

4 weeks since diagnosis. 3 weeks since visit from specialist nurse, when it seemed there would be all sorts of support. 2 weeks since assessment clinic prior to referral to local services. Since...

Thanks Kayleigh

Coincidentally we received a letter from MNDA this morning about this very thing.

No contact with visitors as yet. It’s very difficult to start at one hospital trust, be transferred to another, then back for local support services. Hopefully things get sorted ASAP.

Hi Mandy

Our husbands certainly sound very much alike! Mine also likes to keep busy. Although he still works in the garden, it’s frustrating for him not to be able to do anything more physical. ...

I have realised that emotional lability was almost the first sign that my husband had MND. We also have a very disabled granddaughter, but she is very happy and gets fits of the giggles. On a few...

Wailywoo, I totally get that it is easier to fit a PEG early, before it is actually needed. It’s just that I did feel quite intimidated, especially as it wasn’t a one-to-one conversation, as there...

Hi Lynne

I very much doubt that my husband will look at the forum. We all deal with problems in our own way and some people want to know more than others. We have a lovely local speech therapist...

Ellie, I know what you are saying so tactfully! This type of MND develops more quickly. You are right though, a gentler approach would have helped.

Thank you Barry, Kayleigh and Ellie. The diagnosis is bulbar onset MND and yes, he had EMG tests.

At the moment we are being referred back to our local health authority for ongoing care, which...