Planes, Trains, Motels and other travel questions

[grandmommyk]

There is going to be a huge surprise birthday party for one of my husband's brother in laws the later part of Oct. It is in Chicago where my husband grew up. All the family will be there, and we really want to go too. The problem is that live in the Houston area. His sisters and brother that lives here are all flying. I don't really see flying as an option for us because of the amount of equipment he needs besides the Power wheelchair. If we did fly we would have to rent a wheelchair accessible van and have it waiting for us at the airport. We would also have to rent the medical equipment that he would need that we couldn't take with on a plane.
The only way I can see us being able to do this is for me to drive us over a period of 2-3 days. There are several problems with this too. The biggest one is that we are both concerned about me being able to stay awake. I am so sleep deprived that I have trouble driving even an hour. I do think that the excitement and adrenaline would help, along with the frequent stops to do tube feedings and help him with a urinal. Also loading and unloading equipment would be a lot more than the 5 lbs that I am supposed to lift. Of course I break that rule everyday but not in the manner I would if I were loading and unloading a lift, battery charger, cases of Ensure, etc to and from our van.
Does anyone have any suggestions? does anyone know how much equipment we could take with on a plane or train? Can a person in a wheelchair even get on a train? Would the VA help at all with this such as having equipment and Ensure there for us? What about hotels and motels? How can I be sure their rooms will actually be large enough? Is there hotels/motels that have better rooms for PALS?
My husband says we just are not going, but will later ask another question about it. I know he wants to go and so do I. Any info or advise would be appreciated.

 

[Al]

Read Mike's travel tips.

Quadbliss.com

AL.

 

[susanf]

Check with AAA too. I believe if your a member they will plan your trip and make sure all the hotels will have handicap access.

 

[cervus]

Airlines will let you take a lot of equipment without charge, if it's medically required, including your power wheelchair. If you have an idea of what airline you would fly, give them a call or ask somebody to call for you. And if the stay in Chicago is just for a couple or more days, get somebody to pick up some Ensure for you there. I'm not sure if your husband can transfer by himself but think about that in hotel rooms. We travelled as a family in January (Bob used a wheelchair) and we were treated with the utmost respect and courtesy by the airlines and really, everybody else. We got to load first, our baggage comes off first and they bring it to you, etc. Might be easier than you think. Good luck!

 

[tmasters]

If you fly into O'Hare you can take the train from the airport to downtown directly. That's what I've done. From there you can go all over the city. The rail and busses are pretty good for wheelchairs. One thing though is that not all the subway stations have elevators. You need to check online to see which ones you can use.

-Tom

 

[grandmommyk]

Thanks for the suggestions. I read Mike's travel tips and will email him a couple of questions. We are not members of AAA but that made me wonder if AARP could give me some pointers. Rick cannot transfer at all, and he is close to 200 lbs. That means we have to bring a lift, a reclining Shower/potty chair, the battery charger for his chair, nebulizer and a few other things where ever we go. Because of the recline feature, the shower chair will not fold up. I can't imagine that we could take all that on a plane but that is one of the questions I will ask Mike.
We went to San Antonio several years ago. My daughter booked our room. The bathroom was large enough we could have used a lift, but it had a tub and no shower. It was supposed to be accessible, but besides the space, wider door and grab bars, it wasn't. My husband could still transfer than, but the toilet was between the sink and wall with no was to get it beside the potty for transfers. I was just wondering if anyone knew a hotel chain that had well designed accessible rooms.

 

[Al]

sorry but Mike hasn't posted or answered my emails for a year or so. Call the local (chicago) ALSA. They might have a loaner lift, commode etc to save you carting yours.

AL.

 

[beckysuenc]

We always stay at the Hampton Inn. Great accomodations but ask in advance about the bathroom. Not all are completely handiicap. Have had problems with the shower not being handicap accessible. All have shower chairs. Sometimes you have to ask for them.
Beckysuenc

 

[rknt50a]

Barbara Brenner's recent posting fits this thread nicely...

Accessibility is In The Eye of the Beholder | Healthy Barbs

 

[John1]

We went to San Antonio several years ago. My daughter booked our room. The bathroom was large enough we could have used a lift, but it had a tub and no shower. It was supposed to be accessible, but besides the space, wider door and grab bars, it wasn't. My husband could still transfer than, but the toilet was between the sink and wall with no was to get it beside the potty for transfers. I was just wondering if anyone knew a hotel chain that had well designed accessible rooms.

"Accessible" rooms vary widely even within a given chain. Generally the more high-end motels have better rooms but most accessible rooms still have baths rather than roll-in showers. I suggest you select a few motel chains that you might want to book with and then contact their head office and ask them which of their hotels in your area have roll-in showers. Let them do the leg work and then when they have done so, call the individual motels and double check that they are in fact roll-in showers. Most desk clerks actually don't know and will have to check the room.

Alternatively, your husband might consider not showering for a few days and just have sponge baths. This would reduce the amount of equipment and motel complications considerably.

 

[mare]

Hi, Grandmom!
As Al said, you can check with the ALSA chapter.
We did a trip last October to Florida; I wrote about it here: Traveling? Other chapters can help! (shoot- don't know how to make it a link. It is a thread I wrote last November; I think in the Tips & tricks forum)

Here is the chapter info (from the ALSA.org site): ALSA- Greater Chicago Chapter;
312-932-0000; info @alsachicago.org

We first called, explained the situation & asked who could help us with equipment.
Be very specific about the equipment you would need. (I would think you would take his chair, the battery charger for it, and the nebulizer in case he needs a treatment in the airport while waiting?) I would think the chapter could help with the rest.
As cervus said, you can pick-up the Ensure in Chicago; or if it is a specific formula, ship it ahead of time to a relative to hold for you.

If they don't have it in their closet, perhaps they could advise you where you could rent the equipment there in Chicago. You could also ask them about recommendations for hotels. They should know which hotels have the best accessible rooms.

I agree, not all rooms in all hotels have the same definition of a wheelchair accessible room! Call & ask to speak to someone who could give you specifics of the room. Best for you to do this since you know his needs & what is required.
Be sure to say it must be a roll-in shower, and if possible, get the dimensions since you need a tilt-in-place shower chair. We have stayed in 4 different places so far, and while the shower was "curb-less" & hubby could use rollator to enter, none would have been easy to use a shower w/c (IMO). It may be that you would have to shower him in 2 sections- sounds silly but would get the job done!

Check that they would remove furniture (they always have a chair or 2, & usually a desk)
to make room for the lift. We have found that while there is room for the PWC, it does get tight; and there is usually only one size for handicap rooms.

We have stayed at Marriott & Hilton chains- the rooms were adequate, he could get his PWC into the bathrooms to pull up to the sink or transfer to the toilet (while there were grabbars, the toilets were never high enough- I always had to help him up), but I could barely fit in the bathroom at the same time. My husband could use a shower bench then & we did not need a lift.

Even though we did not take his PWC on the plane, as cervus said, we also found the airlines to be very helpful & accommodating. They will lift him from his PWC into an "aisle" chair & then lift him into his seat. Your w/c then gets taken to checked baggage compartment. Keep in mind, he will stay in his seat; that will be a long flight to restrict his fluids, so be prepared to use a condom catheter if you don't use them already.

Good luck to you!

 

[kmendsley]

Well I can help with one answer...Ensure is in the Chicago area. I just went this summer on a plane there, and wasn't sure they had any, so I took some with me for check in luggage...well have you ever looked at a 6 pack of ensure through an x-ray machine? It apparently looks like a liquid bomb. :/ My bag was thourougly checked and taken apart b/c of it so I wouldn't recommend packing any of it. Walgreeens and CVS both carry it in Chicago.

 

[grandmommyk]

Thanks again for the replies. We could definitely do sponge bathes. The reason we need the tilt in place shower chair is for the potty. I have no idea if I am doing it wrong or what, but when I try to use the lift his back rounds and I can't get him into a bedside commode with a straight back. I guess this is common because the VA got him the tilting shower chair to help with this.

It is beginning to look like we might be able to stay with family after all but still not sure. I do think we will have to rent a van as his family are all in suburbs.

Thanks for the heads up on the ensure. I was trying to cut cost with that. We get it free from the VA here.

It looks like I have lots of homework to do. Thanks everyone for steering me in the right direction.

 

[fillemvs]

I don't have much advice for you as I'm still in early stage of ALS, but seeing how much you are trying to do for your husband's happiness is very touching. Best of luck to you and have a great trip!

 

[grandmommyk]

Thank you fillemvs. I appreciate the kind words.

Mare,

Thanks for all your help. I will be calling the numbers you agve as soon as I nail down the flight and transportation once we are there.

Which airline did you take? When my mother-in-law flew, the airline had 2 young women to help transfer her. She was using a manual chair but could not help at all with the transfer due to a stroke. My husband weighs close to 200 lbs and can not help at all. There is no way I could even think of transferring him with a lift. My sister-in-law also said that the aisle seat they put her in was very small. That is ok as she is tiny, but she wasn't sure it would work for Rick.

We have only flown once since Rick was diagnosed. It was many years ago. He had a much smaller power chair than. They let him stay in it throughout the flight. So this is something I had not even considered.