Is it safe to fly with bulbar onset

[dougieconnor]

My breathing specialist at the clinic I attend told me that if breathing deteriorates I won't be able to fly because of cabin pressure. Has anyone here managed to fly on a plane with this condition. I'm still mobile and don't think my breathing too bad. seemingly I will have to submit to a breathing test before I will be allowed to fly. I'm just looking for advice, I live in the UK. Would oxygen help or be allowed?

 

[Alex123]

My breathing specialist at the clinic I attend told me that if breathing deteriorates I won't be able to fly because of cabin pressure. Has anyone here managed to fly on a plane with this condition. I'm still mobile and don't think my breathing too bad. seemingly I will have to submit to a breathing test before I will be allowed to fly. I'm just looking for advice, I live in the UK. Would oxygen help or be allowed?

It may depend on how bad your breathing is and how long the flight. I also have bulbar onset and in January I flew from Argentina to the USA, which is a long flight.
I didn't have any problems and I was concerned like you.
Oxygen is not a good idea because while you are keeping the oxygen level up, if the volume of air circulating through the lungs is not enough, co2 will accumulate in the blood, which is very dangerous. I think it is possible that the danger of having problems during the flight might be greater when you fall asleep. But that is just my opinion. Let's see what other people say.

 

[lgelb]

Alex is correct.

If you flew and needed to use BiPAP during the flight, which it sounds like you don't have yet(?), you can, as long as you follow the airline's documentation process, which should be on line or you can call. [They may say CPAP instead of BiPAP since the former is more common, but it's the same process.]

The doc is probably aware that O2 levels are less in the cabin in flight than on the ground, and there are some people with lung diseases who would need in-air oxygen as a result, but you're not one of them.

But if you were nearing the time when you needed to start BiPAP, and you hadn't, and you were on a long flight and fell asleep, your oxygen level might dip more than it should, and you might feel uncomfortable.

So best to plan your flight before that day comes, or be settled in with your BiPAP and document the machine so you can use it in-flight.

 

[Atsugi]

Some PALS fly, but if your doctor is concerned, then get a pumonologist's advice first.

I suggest getting to understand the pros and cons of using oxygen. For most non-ALS people, oxygen is a good thing. For PALS, it's a complicated story.

 

[dougieconnor]

Thanks for the advice. I've been cleared to fly in February it's a 4.5 hour flight. I'm hoping to fly in June as well but that's 5 months away so hopefully I won't have deteriorated too much. I'm not getting the headaches when I wake up yet. I will wait till nearer the time to book my June holiday.

 

[CiCi]

The headaches come at the airport, waiting to get through security!
MDH made a 3 hr flight---no problem. He has bulbar onset. CiCi

 

[4tloml]

My husband has bulbar onset and we always fly now with bipap and cough assist. His O2 levels drop whenever he sleeps, so we keep the bipap with us whenever we're away from home for any length of time. His FVC was at 60% a few months ago. We have paperwork printed out indicating both machines are approved for airline travel/use and keep it right with the machines. It can be found online. Since we usually travel on one specific airline, I've made notes in his frequent flyer record of the equipment and any special needs and then I always mention it again to the gate agent.

Enjoy your travels!