Traveling with ALS family member

[ttran]

Hi all! I'm Gia -- new here!

My dad was recently diagnosed with ALS earlier this year. So far, he's having difficulty with both arms mobility and a bit of swallowing difficulty at this moment (we will be doing a feeding tube sometime in the fall).

We planned a trip to take him back to his homeland (Vietnam) next month to visit (it'll probably be his last major trip out of the country). I was wondering if anyone has had experiences traveling with ALS or with ALS family member to a country that's really hot and humid. I talked to our doctor/neurologist and they said while heat could make one tired, it shouldn't be something that stops us from traveling. They said the key major thing is making sure we're not over exhausting him on major long walks/going out for too long/etc. I'm also taking precaution in terms of making sure there rest days, have a room/hotel with A/C, making sure my dad stays hydrated, safe transportation, submitting medical assistance forms to the airlines, etc.

A part of me is worried that traveling with extreme heat would impact his breathing capacity in the long run or weakened him further with this disease.

 

[Nikki J]

It sounds like you are making very good plans and should be well worth the effort for your dad and for you. Thank you for really thinking this through.

I looked up weather in August for Viet Nam. It doesn’t look much different than Virginia ? Except maybe wetter? I think he should be fine with attention to hydration and rest and air conditioning at least in his room. Are there going to be long periods outside? Is that the concern? Hydration ,sun protection and I have seen a sort of personal fan that drapes around the neck

Have a great trip

 

[lgelb]

I'm sorry to hear about your dad.

You've covered a lot of ground with your preparations. One thing to consider would be to bring large bore bendy straws or a small light juice cup (there is one with ledges for the fingers) so he does not have to lift /hold drinkware.

You can also carry a collapsible silicon cup and fruit/veg juice concentrate for mixing with water on the fly in small enough vials that TSA allows them (not sure about Vietnam Customs, though)-- they're on Amazon, and/or keep his straws with you and buy cold single-serving juice bottles as accessible.

The idea is that he can get cold hydration with electrolytes in frequent installments.

In case his arms worsen while you are away, I would also bring an oyster fork and small spoon if these are not freely available where you are traveling.

Just in case, I'd also scope out where you could buy a rollator where you are going if his legs weaken or if he feels tired generally during the trip. I would bring documentation of his diagnosis and chart notes in case he needs care while traveling, and use the terminal shuttles in airports, etc.