Helpful tips, please!

[Elfstar]

DH has become totally disabled from ALS (Lou Gehrig's disease) since our trip in 2007. His doctor feels that he's in his final six months , so he's asked for a last trip to WDW. We're staying at AKL, splurging on Savannah view (justifiable use of the credit card as far as I'm concerned!). We're going 10/29 for four nights, long enough for some fun, not to much to wear out patient or caregiver.

I need your help to make sure I'm thinking of everything I need to - he's in a Permobile power chair 24/7 with air cushions. He uses portable suction, has a G-tube for feeding. His speech is unintelligble to all but the few of us who are with him all the time. This trip will be just he and I - we've been together for 17 years, and are finally getting married.

I know to look for "family" restrooms as I have to take care of those things for him. I can tube feed him anywhere, and I understand that the first aid stations are a good spot for that. I'm going to research what attractions can accommodate his chair as he cannot transfer out of it for any reason except for bathing. I know I have to carry his DNR order everywhere we go. I'll have a backpack for necessary supplies and rent a locker if necessary. I was an EMT for many years - the patient care is a piece of cake - it's seeing to the fun part and avoiding obstacles I may need help with.

Please offer any hints, tips, advice, whatever - I want this to be the best trip it can be for him. Thanks in advance for any helpful words you have to offer.

 

[Cheshire Figment]

Of course he can go into all shows.

As far as rides where he would not have to transfer I can think of the following off the top of my head:

Toy Story Mania
Journey Into Imagination With Figment
Ellen's Energy Advenure
It's A Small World
Great Movie Ride

 

[CoryDKross]

Hello a few more rides....

Kilamanjaro Safari (AK)
Magic Carpets of Aladdin (MK)
Nemo (EPCOT)
Living the Land (EPCOT)
Jungle Cruise (MK)

I hope this helps, we have only been once (May 2007) and can't wait to return (May 2009)! My brother uses a manual chair is also unable to transfer.

Have fun.

 

[Ms_Butterfly]

I highly recommend the book "PassPorter's Open Mouse" - it is all about doing Disney with disabilities (as well as some more normal circumstances like being pregnant and such). They talk about each ride in it and say whether transferring is required or not. There are also lots of tips for your fiance in it (wheelchair, tube feeding, etc.).

 

[BillSears]

I do have one warning about the Kilamanjaro Safari at Animal Kingdom. It's a very rough ride. I'd be very worried if I couldn't hold on to something while the truck is bouncing around.

Otherwise the rides listed above shouldbe great for him. I hope you both have a wonderful trip.

 

[Forevryoung]

From the communication aspect- the ALS society has loaner high tech communication devices that will enable your fiance to communicate clearly with even people he doesn't know. It might be something to look into to benefit both of you.

PM me for more info.

 

[kaffinito]

Elfstar -

I can't offer you any tips or advice. But I can offer my well wishes for your trip and my congratulations for your wedding.

Karen

 

[ireland_nicole]

You can do the backlot tour at DHS too . Congratulations on your upcoming wedding; and I hope this trip is truly magical for both of you
for your family in this difficult time.
Nicole

 

[syko]

The Winnie the Pooh ride (MK) has a wheelchair honey pot too, so does Buzz Lightyears (MK) and you can take the chair on the boat ride in Mexico too.

 

[Elfstar]

From the communication aspect- the ALS society has loaner high tech communication devices that will enable your fiance to communicate clearly with even people he doesn't know. It might be something to look into to benefit both of you.

PM me for more info.

Thanks, Forevryoung, we do have a Dynavox comm device - which he refuses to use. I don't really know why, because since he's also quite dyslexic, we got the picture/word associated version. We will be taking it, however; perhaps the stimulus of so many people around will create the wish to communicate and then the will.

To all of you, thank you for the well-wishes. This will be a bittersweet trip, knowing it's our last together, but not going once more would leave regrets, which is worse. All he cares about is seeing WDW one more time - he'll be the "boss" this trip as to what we do.

Bill, thanks for the cautions on the safari ride; I agree with you. And since he's had a cervical spine fusion, he's sensitive to jerky motions.

 

[bopper]

There is an ALS Caregiver Support Group that may be helpful...
http://www.alsforums.com/forum/forumdisplay.php?f=7

 

[Elfstar]

Thanks, Bopper, I haven't been on that one before!

PS - We got married yesterday! Next thing to look forward to is our trip 10/29!

 

[mrsksomeday]

Congratulations on the marriage!! Have a great trip.

 

[SueM in MN]

Thanks, Forevryoung, we do have a Dynavox comm device - which he refuses to use. I don't really know why, because since he's also quite dyslexic, we got the picture/word associated version. We will be taking it, however; perhaps the stimulus of so many people around will create the wish to communicate and then the will.

To all of you, thank you for the well-wishes. This will be a bittersweet trip, knowing it's our last together, but not going once more would leave regrets, which is worse. All he cares about is seeing WDW one more time - he'll be the "boss" this trip as to what we do.

Bill, thanks for the cautions on the safari ride; I agree with you. And since he's had a cervical spine fusion, he's sensitive to jerky motions.

There are a couple of links in the disABILITIES FAQs thread that I'd suggest you read. That thread is toward the top of the thread list on this board (there is also a link to the thread in my signature). In post #3 of that thread, there is a link to allearsnet.com's information page about Companion Restrooms.
Also, in post #3 of that thread, there are some links in the alphabetical section about travel with wheelchairs - the trip reports from eternaldisneyfan (she has MD and uses a power wheelchair and also has respiratory and feeding needs) and mrsksomeday (her boyfriend has cerebral palsy and uses a power wheelchair). eternaldisneyfan especially goes into great detail about what was accessible for her wheelchair and what was not - some of the things listed in the park literature as wheelchair accessible will fit a manual wheelchair, but not all power ones. Which ones fit depend on the exact size of the wheelchair and how much clearance it has underneath.

For the Dynavox - my DD had one, but did not like the 'file folder' format that Dynavox uses for organizing the vocabulary. I made a lot of custom pages for her Dynavox. She now has a different device (Prentke Romich) that is organized in a much more language based way and likes that much better.
This thread has some Disney specific communication pages I made for my DD's communication device. There is one page for each park using the 'generic' pictures that are available in her device and another page for each park where I actually found specific icons on the internet to download for each attraction. The finding the pictures part was hard (I would share them if you want them - just PM or email me). The actual programming of each page was easy. I think it only took about 15 minutes for each page.
So, if you (or someone else) has some knowledge about programming pages for the Dynavox, it would be pretty easy to make some specific pages that might let him express things he has no understandable language for.

Congratulations on your marriage. (this is a bride smilie, but I can't find a groom - maybe this will work)

Just thought of something -AKL has some great viewing areas off the lobby. They are covered, so you don't have to worry about sun and they are large so getting around in them with a wheelchair is no problem.

Also, you can store medical supplies at First Aid if you have more than will fit in his backpack.

 

[Elfstar]

Thank you for all your help - especially Sue - the groom smilie was just perfect - even looks a little like him! Your pages look just like his Dynavox screens and programming it is a snap!

I've printed all this off, and we hope to have a great trip. Now if only Tink will give us some pixiedust that will restore him to health.....