DH with CMT

[three boy mom]

My DH has Charcot Marie Tooth disease (Muscular Atrophy of the extremities). He has a disfiguration of his ankles/feet (mostly his right one which is turned in so far that he walks on the side of it). We have not been to Disney for five years. The last time we visited we only spent 3 days in the parks. It was very hard on him to walk so much. He has voiced his concern because this time we were planning to spend 5 days in the parks with frequent breaks (and afternoon breaks at the resort). We will also be spending one day at a water park. I suggested a wheelchair or ECV but he is really against it. My concern is for him. We have three son's (ages 13, 11, and 7) that will be extremely excited and will want to travel around the parks at a brisk pace. If he insists on walking, do you think a GAC will be beneficial for him at all? Thank you, in advance for any suggestions.

 

[Talking Hands]

Honestly I think an ECV rented offsite would be the best thing for him. I know He may feel embarassed or that he is giving up by using one. Admitting that you are no longer able to walk around the parks like you used to is very difficult to do. With an ECV he will have less pain, less possible damage to his feet, and will not hold anyone up.
I don't know what you would ask for in a GAC. For endurance issues they will usually recommend you rent a wheelchair

 

[Biscuitsmom31]

Hi, my husband had limb girdle muscular dystrophy. He too was always very resistant to using a wheelchair or an ECV. Finally, after several falls and stiches he accepted an electric wheelchair from the MDA. All he talks about now, is how many years he's missed out on doing everything he wanted because of his refusal to use a chair or ECV. He goes circles around me and wears out the whole family but it is so wonderful to see how giddy he is about the simplest things, like going to the mall, the state fair, etc. Obviously, your DH's problems haven't progressed to the point that my DH's have but if he could talk to my husband for 10 minutes...he might realize that his pride isn't worth the physical toll on his body. Why hurt if you don't have to?

 

[Cheshire Figment]

If he insists on walking, do you think a GAC will be beneficial for him at all?

The GAC is intended for people with "inviisble" disabilities. Normally Guest Services will recommend use of either wheelchair or ECV for people with mobility and/or stamina problems.

Please ask your DH the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are travelling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[MulanMom]

My husband has FSH Muscular Dystrophy and I do plan on getting a GAC for him for our next trip in June. He can still walk and it was only on our last trip that he used an ECV. He was so glad he did...he didn't feel as tired or wiped out from walking and felt he could enjoy the parks and our children more. As for the GAC....often my husband will drive the ECV to an attraction but not on/or into one. He wears leg braces that can be hidden under pants or the casual observer might not quite pick up that they are leg braces. He's been having increasing difficulty with maintaining his balance. So on rides requiring transferring from a moving walkway into or out of a ride vehicle, I felt it might be helpful for a CM to know.

 

[SueM in MN]

Agreeing with the others.
One of the reasons that WDW suggests a wheelchair or ECV for "endurance" concerns is that is the best way to deal with them. A GAC won't really help that much for someone with the problems he has.
The distances between things are much larger than the distances spent in lines; having a GAC wouldn't affect the distances between things at all, and in most cases, it doesn't affect the distance you walk in lines - what it may affect is where you wait (some GACs allow for waiting in a quieter area). There is a GAC that allows someone to avoid stairs in attractions that have stairs in the queue, but if he is using an ECV, he will not have to worry about any stairs (and very few attractions have stairs). Most attractions don't have any place to sit while you wait (and the ones that do, having a GAC doesn't guarantee you a spot to sit - the only guarantee is if you bring your seat along with you).

My FIL avoided using an ECV for many years (didn't think his problem was severe enough to warrent one, didn't want people looking at/judging him, etc). Finally 2 years ago, on the last day of our trip, he rented one at Epcot. At the end of the day, he commented that was the first day he had spent at the parks in 15 years that he didn't end up in pain. And, he saw things on that day that he hadn't seen in years, because they were too far for him to walk. He actually said he realized he had been silly and wished he had rented one a long time ago.
One of the ways to think about an ECV that has helped some people is to look at it as a tool to help you conserve energy. Each day, when you get up, you have a certain amount of energy in your "energy bank account." Just like a checking account, the things that you do during the day either add to or subtract from your balance. If you spend too much in one place, you won't have enough for the things you want to do later. And, if you spend way too much, you will be borrowing from tomorrow's budget and will start that day with a deficit. Using an ECV allows you to save some of the energy you would use just getting from place to place and use it later for things that are more fun.

And, finally, here is a link to a thread from a new ECV user, who had avoided using one for a long time and was so happy after using one that he just had to share.

 

[three boy mom]

Thank you, to all of you for your input. I showed my husband the posts here and he is now considering a wheelchair or ECV. Sometimes things have to be heard from someone else to actually be considered (I've learned this after 20 years of marraige).

 

[SueM in MN]

glad to help. hope everything works out well.

 

[MulanMom]

Thank you, to all of you for your input. I showed my husband the posts here and he is now considering a wheelchair or ECV. Sometimes things have to be heard from someone else to actually be considered (I've learned this after 20 years of marraige).

You have that problem too?

I was telling my husband about this thread. If yours needs more of a nudge, let me know. DH offered to get behind a keyboard himself to convince him!

 

[Biscuitsmom31]

You have that problem too?

I was telling my husband about this thread. If yours needs more of a nudge, let me know. DH offered to get behind a keyboard himself to convince him!

My DH offered too! He said that "Jerry's kids" (even the full grown ones) have got to stick together.

 

[three boy mom]

Thank you to both MulanMom and Biscuitsmom31 and your DH's. As we get closer to our trip (end of June) and he starts hinting about "trying" not to use the wheelchair or ECV I will definitely seek out your help.