ECV with hand numbness

[acgardne]

My dad has a peripheral nerve disease (CMT) which causes progressive loss of feeling in the extremities. He currently ambulates with braces and a large walker with grips (he is over 6'). For Disney, he would need an ECV so as to not exhaust himself. He has been hesitant to use an ECV because of the decreased sensation in his hands - he is afraid he won't be able to stop in time and hit someone. Does anyone have any experience in this situation? Has limited hand mobility or sensation impacted use of an ECV? His car at home is modified with hand controls that he uses to drive, so he is used to that sort of control, but not an ECV.

 

[GranJan1]

I have CMT also. It’s not too often I hear of someone else who has it or even heard of it. I used a ECV at WDW for years. The 1st one I owned had a lever on the steering bar that was controlled by your thumb. My hand would get very tired & weak. The 2nd one I owned, the level was operated by your fingers which was much less tiring since you used all 4 fingers. After my condition worsened to the point that I needed to use the scooter inside restaurants, shops & restrooms, I started taking my power chair to WDW. A power chair is easier to maneuver than even the smallest ECV. I had already been using one at home after I couldn’t manage a walker any longer so I was experienced with it. After you get comfortable with the joystick control, it is much easier & less tiring. You can grasp the joystick with your whole hand & control movement in all directions very easily. You still need to turn the speed down in crowds or tight spaces. Since the joystick can easily be bumped by you or people around you, it’s a good idea to turn the power off anytime you’re stopped.
The only problem is you can’t find many places to rent power chairs. I have the Golden LiteRider Envy. It breaks down for easier loading...at least my husband has no problem loading it. I wish I had just started out with a power chair instead of an ECV but years ago I don’t think there were any power chairs that were affordable. That’s changed a little.
I hope I’ve helped you. I think anyone who can drive a car should be able to manage an ECV with rest breaks. By the end of the week the thumb control made my whole arm hurt. If I went with the ECV instead of a power chair, I’d make sure it was one with finger controlled lever.

 

[kaytieeldr]

"Braking" an ECV means releasing the control - so more important than sensation in his extremities would be his reaction time.

 

[mamabunny]

I agree with my buddy, @kaytieeldr up north there

If he is used to driving with hand controls, then he should be able to operate an ECV safely.

Have the other members of his travel party create a "bubble" around him (one or two people who walk just ahead of him, and one next to him on the busier side of the path) which will help keep "intrusions" into his driving space minimized. They can help watch out for "bubble breakers", like little ones who dart into traffic, or Instagram Zombies who aren't paying attention while they are walking.

Let us know if Dad needs any more info about using an ECV at WDW; there's a *ton* of good info around here!

 

[Evita_W]

For Power chairs, Gold Mobility rents them (and ECVs) at reasonable rates if you are interested in that route. Additionally if you rent one and find out the other would be better, they will trade it out (assuming the other is available), if the new price is lower, they generally will refund the price, if the new price is higher, they will work it out (for us they didn't charge the extra when we needed to add a few days, which was unexpected, but nice). Not saying exactly how they would handle price differences, just saying what they have done with us. They ultimately want him to have what he will be most comfortable using.

But for ECV, he could try using one at Walmart, Target, etc. they are harder to drive than the ones you would rent, but will give an idea of he could do it.

 

[Bete]

You might want to alternate shows with rides. At the show you get to rest. Same with eating, it provides a rest.

All the ideas above are important, too.

I would go early to the parks; the crowds are less. If you are staying onsite use extra magic mornings, too.

 

[acgardne]

I have CMT also. It’s not too often I hear of someone else who has it or even heard of it. I used a ECV at WDW for years. The 1st one I owned had a lever on the steering bar that was controlled by your thumb. My hand would get very tired & weak. The 2nd one I owned, the level was operated by your fingers which was much less tiring since you used all 4 fingers. After my condition worsened to the point that I needed to use the scooter inside restaurants, shops & restrooms, I started taking my power chair to WDW. A power chair is easier to maneuver than even the smallest ECV. I had already been using one at home after I couldn’t manage a walker any longer so I was experienced with it. After you get comfortable with the joystick control, it is much easier & less tiring. You can grasp the joystick with your whole hand & control movement in all directions very easily. You still need to turn the speed down in crowds or tight spaces. Since the joystick can easily be bumped by you or people around you, it’s a good idea to turn the power off anytime you’re stopped.
The only problem is you can’t find many places to rent power chairs. I have the Golden LiteRider Envy. It breaks down for easier loading...at least my husband has no problem loading it. I wish I had just started out with a power chair instead of an ECV but years ago I don’t think there were any power chairs that were affordable. That’s changed a little.
I hope I’ve helped you. I think anyone who can drive a car should be able to manage an ECV with rest breaks. By the end of the week the thumb control made my whole arm hurt. If I went with the ECV instead of a power chair, I’d make sure it was one with finger controlled lever.

I have CMT as well! Thank you very much for your response. It helps hearing from someone who has been there, and it was nice to not have to explain what CMT is

 

[acgardne]

Thank you for your responses, everyone! This forum has been a goldmine of great information!

 

[SueM in MN]

A power wheelchair can turn sharper and requires little hand motion to move, but is more of a learning curve to figure out how to operate because you are controlling everything with one joystick - speed, direction forward and backward and turning. For that reason, many of the rental companies will only rent power wheelchairs to people who are already experienced (For example, someone who uses one at home, but doesn’t want to travel with it).

 

[tsumgirl]

I experienced symptoms similar to CMT early on in my illness, and just wanted to add that if your renting an ECV, put in a request for a seat that moves forward and backward
Most do have this feature, but I received ECVs where it wasn't working and it made my arms tire easily. This will hopefully help with his comfort level.