Advice to people with MND considering Tracheostomy Ventilation

We asked people living with MND who use Tracheostomy Ventilation (TV) what advice they would have for others who may be considering TV for themselves. Here are some of their responses.

Brian says it is difficult to adjust to TV at first but it has been a positive step.

I think that overall, I would say it was a positive step, that I feel, well obviously we don’t know the effect on mortality, but I definitely feel that in the position I was in, there was no alternative. I would say to people that the first month or six weeks is very difficult, and it takes a lot of adjustment and determination and patience. But if you retain your ability to speak and to swallow it’s a great advantage, I think. But you need to consider your own circumstances and whether you can accommodate two strangers living with you 24 hours a day. You know, if we only had one flat, I don’t know what we’d do, we wouldn’t have space. So I think that people need to really think seriously about the effect it’ll have on their life, but if they want to live longer, then I think it is worthwhile.

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Richard says “Go for it”

RichardGo for it – life goes on albeit with a plastic tube sticking out of your neck!!!  I think asking others about their experiences of funding/care packages would have been helpful – life after TV – and what services they found helpful.

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Mark A talks about the effect of MND on his family

It’s obviously a difficult decision, hence the need for studies on it. I think the fact I was on my own without a wife or children influenced my decision to have a tracheostomy. I am not sure if I would want to put them through it; MND and how it affected me caused the breakdown of my marriage and it would have depended a lot on their opinions… I think that it would help my family to also have been involved in the talk about TV not just me and my then wife, as it influenced their lives in a major way.   

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Hugh says you have to “go with the flow” but change care staff if you’re not happy.

Yeah, you’ve not got to be precious about which cupboard the crockery and the cutlery are in. You just got to go with the flow…

Get a good care company, take an active involvement in their selection if you can, and in the recruitment to start with. And if it’s not working out, don’t just put up with it, change it.

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Andrew is a “huge advocate” for TV

Compared to having to live with a mask permanently attached to your face (with its usual skin irritation issues and face disfigurement, and the inability to suction any mucus), I’m huge advocate for a TV.  

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Mark B’s advice is to “live your life”.

It’s not a big deal once you get used to it. Live your life!

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Everyday life with Tracheostomy Ventilation

We spoke to people with MND and their family members about how they experience everyday life with tracheostomy ventilation. Daily routines are variable, but structured...