baglady

We have a close friend who has ALS and it is getting increasingly worse. He is still traveling and has some upcoming trips, four of which I'll be at part of the time - three domestic and one international.

He has a new walker with a seat; a wheelchair; electric cart available for longhauls (Mr. Baglady just got him a cup holder for the walker because he just had his coffee cup in his basket and he was worried it would tip over).

I have plenty of wheelchair experience but none with ALS. Any tips for helping his travel?

Shesells

As someone with more experience of ALS than she cares to have, I would caution against air travel with ALS. As it gets worse, mobility is seriously affected as are the muscles of the mouth. This affects swallowing (including saliva control) and speech.

Tips for comfort, definitely blankets and extra socks for his legs to keep him warm. Depending on his speech, there are aids available to help with that. Obviously checking that the aircraft are disability friendly, a poster on TA recently posted about AA flights not having the promised disability friendly facilities (swivel armrests and accessible restrooms).

Most important thing to remember is to help preserve his dignity. ALS is a disease of the body not the mind.

baglady

Shesells, thank you for your wonderful reply. He really wants to keep traveling so at least for the next three months, he is planning to do that. Your tips were much appreciated.

He is handling it quite well, and has been great about talking about ALS and what he's going through which I think is very important to him.

I know that it is very difficult for him to not do the things that he is used to doing and how hard it's been to have to rely on things like a walker, wheelchair, etc.

Your last sentence is almost poetry and so true.

Thank you for your quick response.

Katja

Given possible rapid progression, especially under the stress of travel, it may be wise to overplan and overprovision, rather than the alternative.

My best wishes to your friend - I hope he enjoys his trips and has the support and equipment to make them worthwhile.

DeafFlyer

I think it's great if he can still travel. Wow! 4 trips with one being international. Probably someone who won't get over stressed by travel. I wish I could give more specific tips. Not knowing much about him or his trips makes it difficult to advise. Any specific questions?

baglady

No real specific questions. I just want to be able to do whatever I can to make these trips as carefree as possible. I'm not sure how the international trip will go and it concerns us, but he is determined to do it. We want to be as helpful as possible and do what we can to make these trips enjoyable and workable. We will really be the only ones there for support - I don't think his wife is joining him for any of the trips and we want to be as prepared as possible for helping him. Thanks all for your tips!

DeafFlyer

Number one concern on an international trip is solving the restroom issue. It is not really feasible tgo try and use the so called "accessible" restrooms on aircraft, unless he can walk to and from it.

Katja

That's not necessarily correct, with sufficient assistance. Any international aircraft should have an onboard wheelchair, which is pretty much the same as an aisle chair (used to board non-ambulatory passengers). Neither an aisle chair or an onboard wheelchair is adequate for advanced positioning needs - if your friend is unable to hold his head or torso up, someone (you, because the FAs are not permitted to do this) will need to help hold him up.

Once at the lavatory, if your friend is unable to transfer from the onboard wheelchair to the toilet seat, you will also have to help with the transfer. There will probably not be grab bars. There may be room for one slim person to stand in the lav to help with the transfer. FAs are not supposed to assist with transfers, although some have helped me.

I've found FAs on international flights to be pretty good about this - an FA will block off the lav ahead of time, and they'll sort of stand around and guard it for you.

Here's a good description from Candy Harrington about what "accessible" means in the air: http://candyharrington.com/clips/poop.php

Then there's the whole other direction. Plan on not using the restroom by using a condom catheter or whatever else your friend's doctor advises.

baglady

Katja, thanks for the excellent advice regarding the lavs. EVA has an excellent "handicapped" lav on their newer planes with grab bars and plenty of space. That isn't the airline he usually takes, but I think because of the accesibility, it may be one of the better choices for his trip to Asia. I hadn't thought of that particular issue, and it's definitely one to consider.

DeafFlyer

Well, I know it's possible, but for someone like me it just isn't practical to go through all of that to go to the restroom. It's still the number one issue in my mind. A person needs to know what they are going to do, and what they are able to do, before actually getting on the aircraft.

kukukajoo

Regarding the restroom and accessibility options, would it be feasable to have a foley catheter in place temporailiy during in flights? They can be easily taught and not difficult to insert, but sterility is important during this insertion to avoid a UTI later on, or also a prophylaxis antibiotic at the same time.

Had a friend who did this and it wirked out great for her.

I think it is wonderful that you are trying to help your friend maintain quality of life! You are blessed friend to have for sure! Many people tend to run the other way when they hear of ALS and other disorders, not knowing what to do or say. You must be an angel!

I too, know more about ALS than I would ever wish anyone to know.

baglady

Our friend will not be going on the overseas trip because the ALS is progressing very quickly. He is making one trip domestically with us but it's only a three hour flight so it will be better.

He is someone that has never had any real hobbies. Now he will be at home all day (going on disability soon) and I am trying to think of some things he can do. His mind is incredibly sharp; it's his body that is being attacked. He has expressed an interest in classical music so I think I will find a good classical music library and perhaps some books on the composers as a start.

Also, we want to be able to go and spend time with him, while also giving his wife a break to go and do something for herself. Would it be okay for us to say "we've booked you a spa appt. and let us have lunch with our friend" - I don't want her to feel we don't want her there but rather want to do something that would be helpful.

Thanks again for all the help with this.

Katja

I'm sorry to hear about your friend's rapid progression.

It might be very nice for your friend's wife to be able to take a break and know that you are with your friend while she is doing something for herself. Being a caregiver (especially if she is the sole caregiver) is very intense and tiring, and she may welcome some time off.

njvj

I don't know if your friend is a movie buff but look at the AFI's 100 best film list and rent some of them from Netflix. Some are great and a good way for a little mental escape. I think that spa idea is nice for his wife. She will need all the breaks that she can get.

All the best,
Joy

baglady

The AFI 100 is a fabulous idea - thank you!

His birthday is coming up - we'll find out if he has Netflix, if not that may be the perfect gift!