Opinions wanted: bring 2 wheelchairs or 1?

[SueM in MN]

DD's new power wheelchair arrived and she wants to bring it to Florida.
We never brought her old one for several reasons; one was we were afraid of damage on the plane. Another (probably the biggest reason) was that she becomes tired after a full day and needs one of us to drive it (plus she almost always has at least one seizure while in Florida, which means one of us needs to drive it).
The new power wheelchair has an attendant control, which is a small joystick attached to the back of the wheelchair. It is assigned one of the programs on her controller, so if the wheelchair is in that program, only the attendant joystick can control it.

If we do bring her power chair, the thing we are undecided about is whether to also bring her manual wheelchair. The power and manual chairs can both use the same seating system, so we would have an extra wheelchair frame and wheels. If we don't bring the manual one, we are concerned about what we will do if anything happens to her power wheelchair. She is an unusual size and any of the rental companies are not likely to have a wheelchair that would fit her.

What to do??

 

[Michigan]

Tough decision Sue. With the new one she would have more freedom but we had a chair damaged by the airlines and that’s why I drive everywhere now. Another issue is does she sometimes just hit the joystick when she is just sitting still? Megan has a friend that gets excited sometimes when he is just sitting still and hits the joystick not meaning to and that would be a problem in line. Then with the power chair you would have to transfer her to ride everything and I’m sure that’s a pain.

Good luck with your decision

Cindy

 

[dclfun]

Sue- what does your daughter think about it? Would she enjoy the freedom and ability to drive her own chair? I don't think I could tolerate having to be pushed but then if she's used to it at Disney maybe it works fine for her. I agree....tough decision. I've flown now several times with my power chair and so far on two different airlines, not even a scratch...---Kathy

 

[Andrew Bichard]

My own experience:

At home, I use a manual chair most of the time in the house, only changing to my powerchair when I need to go out.

When I come to WDW, I bring only my powerchair.

When I came home from my last trip (almost one month at WDW), I found it difficult to push myself up to sitting, to get out of bed, and difficult to make various transfers in and out of my wheelchair. I even bought a set of dumbells to excercise my arms and regain some strength.

Then it came to me what had happened. In my month at WDW using only my powerchair, I had lost some of the muscle tone in my upper body and arms because I hadn't been propelling myself around in my manual chair.

Next trip, I have to either bring my manual and use it around the resort on non park days or make a daily visit to the resort fitness center.

Andrew

 

[GroovyWheeler]

Hi Sue; It might be easier for you, if she was allowed to bring her power chair, and someone in your family can take over with the driving, when she gets tired. The hardest thing about bringing a power chair (if you're staying off-site) is finding accessible transportation for the power chair. I know this, because my best friend took both of her wheelchairs (a power and a manual) to Disney World, but they had a hard time with the paratransit service down there.

I've been thinking about taking a rented folding power chair to Disney World next time we go in January of next year, but when I talked with my mom about it, she didn't like the idea. It's mostly because she's suffering from health problems herself, and didn't want to have to lift a heavy folding power chair into the back of a rental car (too hard on her back). So now, I'm considering bringing my walker, and renting an ECV there. That is, if I decide to not take my manual wheelchair again.

Samantha

 

[SueM in MN]

Thanks for all the advice. To answer a few of the questions:

chair damaged by the airlines and that’s why I drive everywhere now.

When the chair was delivered, we had the guy give us instructions on how to prepare it for travel. We'd remove the seat and back (don't want the gel seat punctured). We can actually remove the joystick with a quick release screw on connector for the cable and taking off the part of the armrest the joystick is attached to.

Another issue is does she sometimes just hit the joystick when she is just sitting still?

If she's sitting still, with her hands away from the joystick, we won't have a problem. If she's driving and gets too excited, then she extends her whole body, including the arm on the joystick - which means she pushes the joystick forward. We have a cople of ways to deal with that on the new chair that we didn't on her old power chair; one of the most useful will be the attendant joystick. If the program for that is the active program, then her joystick won't do anything.

Then with the power chair you would have to transfer her to ride everything and I’m sure that’s a pain.

That's one of the reasons we are thinking to take both chairs. Her new power chair is no bigger in any direction than her manual chair though, so it still might fit in some of the wheelchair cars. The limiting thing might be that it's very low clearance underneath.

Sue- what does your daughter think about it? Would she enjoy the freedom and ability to drive her own chair? I don't think I could tolerate having to be pushed but then if she's used to it at Disney maybe it works fine for her.

She wants to take the new wheelchair and would LOVE the freedom.
When we are not on vacation, our general rule is that the manual chair is for inside and the power chair is the one that goes places. So she is used to driving it when we go out.
She hasn't brought a power chair to WDW though and is used to being pushed there. She does propel her manual chair some on most of our WDW trips, but doesn't have the stamina to push it that long by herself.

At home, I use a manual chair most of the time in the house, only changing to my powerchair when I need to go out.

When we are not on vacation, our general rule is that the manual chair is for inside and the power chair is the one that goes places. So she is used to driving it when we go out.
I do think you are right about loosing strength. Plus, if we have her manual chair too, it woudl be easier for her to drive that inside.

It might be easier for you, if she was allowed to bring her power chair, and someone in your family can take over with the driving, when she gets tired.

That would be easier than pushing her all the time (that does get tiring). I'm pretty good at driving her old power wheelchair using the joystick, but no one else in the family is. They thought they could use the attendant control though (a new feature on the new chair)

The hardest thing about bringing a power chair (if you're staying off-site) is finding accessible transportation for the power chair. I know this, because my best friend took both of her wheelchairs (a power and a manual) to Disney World, but they had a hard time with the paratransit service down there.

We're lucky that we are staying onsite.
We already rented a regular van. If we bring the power chair, she and I (and maybe her sister) will take Disney Magical Express to the resort. DH will take the rental van and some of our bags (plus the manual wheelchair if we bring that). We usually take the Disney buses most of the time, so that won't be a problem.

Again, thanks again for the advice. I'll report what we did and how it went after we go.

 

[BCV23]

Good luck, Sue. I have no advice for you but think I would be tempted to bring both more for the fatigue issue than the airline.That is unless your daughter's seating system would fit in a smaller standard wheelchair with the sling bottom. I do think the WDW resorts would work to transfer that style to your resort if none were available at yours.

We're in the process of starting research for a new power chair for our DD. What did you pick?

And most of all, have a great trip!

 

[SueM in MN]

Good luck, Sue. I have no advice for you but think I would be tempted to bring both more for the fatigue issue than the airline.That is unless your daughter's seating system would fit in a smaller standard wheelchair with the sling bottom. I do think the WDW resorts would work to transfer that style to your resort if none were available at yours.

We're in the process of starting research for a new power chair for our DD. What did you pick?

And most of all, have a great trip!

We're leaning now toward not taking the power chair and only taking the manual one.
The new power chair she got is an Invacare TDX3 and it's a midwheel chair. Her old one is an Invacare Arrow, which is rear wheel drive. We had pretty good luck with the Invacare Arrow. It had both motors replaced about 2 years ago (that's her fault though; she pushes and pulls on the joystick at the same time). Other than that, it held up pretty well and got some rough treatment because of her spasticity. It was almost 7 yrs old, which is fairly old for a power wheelchair.

The new midwheel turns very easily which has pluses and minuses. She can turn more easily when she wants to and also when she doesn't want to. It's a little more tricky to keep it going straight. Since she has 2 modes at WDW - either ragdoll, where she would not be able to drive at all OR hyper-excited-arm-extended (which might make her kind of dangerous in a new chair).

We're very conflicted and she's undecided too. At first she wanted to take it, but I think she's a bit afraid of the new chair now that she's used it a few days.

Also, her seating is a Jay gel cushion that needs a firm wheelchair seat and a Jay back that needs specific brackets on the uprights of the wheelchair to hold it up. Her manual and power wheelchairs have the exact same seating system, so if we did bring both chairs, we'd only need one seating system. So, you had a good suggestion, but it won't work for her.

 

[shermomof5]

Hi Sue
We are going in October and are having the same discussion between myself and DH. My 12 year old son just received a new TDX Storm with a Power Standing Option(He can drive while upright). It is also a midwheel drive. Last April we went to DL and took both chairs(we drove). We never used the manual chair. My son is an OK driver but not great. In DL we had a young girl - 13-14 run in front of him at a Bug's Life(we were in the Wheelchar Lineup) and he hurt her quite badly by running over her leg. In the midst of the crowds we would often drive the power chair and still would accidentally catch people's ankles who would walk in front of us. We felt bad and are constantly watching him with little kids. So, the new chair is bigger and heavier and he is able to manage it a little better and DH only wants to take it to WDW in October. I just returned from a CP conference in Orlando last night without my family. We had tried to go to the Park to get a Shopping Pass to take a look at some stores. After the tram, lineups and the monorail, the only thing that ran through my head was how was my son or us be able to manipulate the crowds. I think on quieter days the power chair might work, but I think we have to have the manual there. We are flying from Western Canada, but I think it might save us should we need it. We will be renting an accessible van and I have 4 other kids. Because of our large family and the fact that we are staying for 17 days, we are not staying on site. I hope to figure out the chairs before we go. Thanks, S

 

[Cheshire Figment]

Hi Shermonof5 and to disABILTIES!

Right now Sue and her family are at WDW, so she will not be able to respond to you for about a week; I'm sure she will report on what was finally done and what happened after she gets back.

You mention you are flying from Western Canada. A lot may depend on if you are able to have a non-stop flight. This will mean that the chair(s) will only have to be handled twice in each direction.

 

[shovan]

Sue, hope you & your family are having a great time!!! Waiting to hear all about your trip!

 

[SueM in MN]

We are at OKW right now, in the middle of our trip and I have internet for the next day (about 20 hours).
Thanks for everyone's advice. We decided to leave the power wheelchair home and are here with only the manual chair. I'm really glad we only brought the manual chair. DD is a good driver of her OLD chair, but the new power one is an unknown to all of us. She has ADD and would have had a bit of a problem driving even her old one here. Plus, she went into full meltdown mode when we got off the plane and she discovered that the backpack she thought was on the wheelchair was not there. I was REALLY glad at that point that she didn't have the power chair.
I'll put in a full report after we get back.

 

[BCV23]

Sue, I'm so glad that you're happy with your decision. Sorry to hear about the meltdown but I hope the rest of your trip is smooth and full of magic.

Thanks for the response about the Invacare. Our daughter's first power chair will be 7 years old this August and she needs a new one, too. We have an appointment with a seating specialist after she finishes the semester and we make a WDW trip.

Plenty of pixie dust for your vacation!