traveling

[sunandsea]

Hi, this is my first posting but I've visited the forums often and found them to be a source of comfort - just knowing there are others who are going through similar trials and challenges. Thank you for being out there. My husband was diagnosed a year and a half ago. Since February, he has been using a wheel chair and unable to stand, other than to assist some with transfers. His upper body strength is quite good and he is on a bipap for a few hours a day/night. Because we are dealing with the ftd piece as well as the als, he has a difficult time expressing himself and has some confusion but he is still able to swallow, eat, and communicate. We would love to take a trip but I don't know how to do it safely. I'm hoping some of you may be able to advise. We use a lift occasionally if he doesn't have the strength to transfer and I can't help him enough. (He is about 160 lbs and I'm about 100.) We don't currently have caregivers because of the cost (I just stopped working to be with him). You can't take the lift with you when traveling so what do you do if traveling alone? I'm wondering how I would help him with bathroom needs as well while on the road. We have a van for transportation but would love to think we can still fly - if I could resolve the bathroom need and transfers from one seat to another. We have family and friends in other states and depression is becoming more of an issue and I know seeing these friends or family would be helpful. Any advice is much appreciated. Thank you!

 

[affected]

I don't have experience with travelling as we never managed that with my husbands rapid progression.

But a lot of the folk here have said how wonderful cruises have been because you have all the equipment and facilities.

Would any of your family/friends be willing to do a cruise with you and your husband? A holiday for all of you as you could get some time off with a bunch of people to help entertaining your husband and you would have everything you need.

 

[tripete]

I have traveled quite a bit and have been asked when ever I fly if I can transfer myself or if I will need help. I would call an airline that you are thinking about using and ask them. I believe most larger hotel chains can also accommodate your needs with the lift. If you can make it work do travel. I believe the stress release of our vacations and the memories and photos will all help my wife for years to come.

 

[Nikki J]

My sister did not want anyone but her husband to do transfers but I have seen airline staff do a full transfer. Call and check with the specific airline of course

If you are traveling in the continental US consider a train as well.

When you get to a destination you should be able to rent a lift or borrow one from the local ALSA or MDA closet.

There are members here who have experience with the issue of hotels.

Strongly consider getting at least one other person to travel with you. Strong and able to transfer would be ideal but just another competent adult. You need help to handle luggage and your PALS. The stress of travel can aggravate the FTD too unfortunately

I am going to move this as most of your issues are ALS more than FTD with this question. Hoping to get you more visibility

 

[Nuts]

Welcome to the active discussion phase of membership here . My husband is in a PWC fulltime and we travel in an accessible Van. The bench seat in the back is in two parts, and I have removed the section behind the driver, extending the raised space that you normally access from the back hatch. We have a portable Hoyer that folds down. I can get it in the back space (accessed through the inside via the ramp, it's a sorter lift to the storage space), a shower chair, and hubby in his power chair into the van for travel. You kind of have to stuff everything else wherever you can. If he can stand to transfer, just go with him into the restroom and use the handicap stall.If there is no family rest room, we generally start with the women's room because of the lack of privacy at urinals in the men's room. I go in first and either determine it's empty or I announce that I I'm bring my husband in in his we. I've never had anyone be anything but gracious. We stopped at a truck stop once and when I asked about a handicap rest room the attendant unlocked an accessible toliet/shower combination that was wonderful. Travel now...it only gets harder!
Becky