Wednesday, September 25, 2019

Help! Wheelchair modifications, anyone?

I know I need to catch up a little--but this first. I've been putting off this request for some time, mostly b/c it "could wait". Now I feel like I'm running out of time.

Elena has a manual wheelchair, an old Quickie. She doesn't use it very often. Typically, we always bring it traveling, or if we know we'll have to walk more than a mile at a time without many breaks.

When we were at the beach last year, I met a very nice couple who I saw going on a ride. A man (Harold) was in a wheelchair, similar to Elena's, putting on an attachment. His wife was on a bike. Then they both took off quickly---I ran them down, begging to ask them about his device. They were so sweet, not only did they tell me about it, we rode back to our beach house so Elena could check it out.

This device is called The Firefly. It attaches to the front of a manual wheelchair, literally in seconds, and the chair operates like a scooter. Harold said it changed his life completely! His weighs 13 pounds, he can pack it as a carry-on on an airplane, he can put it on the chair in 20 seconds, and it can go 25 miles/hr so he can keep up with his wife as she rides her bike!

Firefly (from their website)

I thought about getting one for Elena, but I saw two main issues: she has to operate it independently, and I worry about the top speed being WAY too fast. I am pretty sure in order to get out of the chair, the Firefly has to be removed (untested--definitely true for an adult). I wasn't sure why we would really need one, as Elena doesn't use her chair much, and when she does, she's typically with me.

Elena's in high school. I can appreciate she doesn't want me, or any adult, always pushing her (she doesn't push the chair herself b/c she uses it when she's tired and needs to rest). If E is on a school trip and has the chair, I really don't want another student having to push her--if someone WANTS to, that's fine, but it shouldn't be their JOB. And E is tired of always being "the teen with the grown-up" on a field trip.

I thought maybe we'd try one out next fall. Or sooner, if we knew of a trip that she might go on, where I might possibly not chaperone.

That trip was announced the first month of school. It's in March 2020.

I'm working to see if we can try one out. Has anyone out there used something like this? If so, what did you like? Is there a different model you prefer? Is there one that can "swing out" so getting in and out of the chair is easier? I think this could be the key for Elena to be independent, over long distances, and be able to spend time with peers without a hulking adult presence.  Please comment!


Danielle said...

There's another attachment called a SmartDrive Elena could try. It attaches to the back so it doesn't need to be removed for transfers. It also has a lower top speed, and doesn't require as much coordination in terms of steering. I don't have one on my manual chair, because I have a power chair, so it's redundant. But many people find them very helpful. You can probably try one through a mobility equipment dealer.

I use a FreeWheel to help with terrain when I'm outdoors in my manual chair, but I'm working on long-distance self-propulsion, so that probably is not what Elena needs.

Anonymous said...

My first instinct would be for Elena to get a motorized scooter. I have an EZ rider scooter. You charge the battery before the field trip and it lasts for hours. E can drive it herself. So long as it's not raining or snowing and on somewhat flat ground like pavement or wood in works great. I'm not familiar at all with manual attachments.

Unknown said...

I second the drive mechanism that goes on the back area of wheel chair dont know the name of it though

devansh said...
This comment has been removed by a blog administrator.
TheCzarsOf45 said...

A SmartDrive is something which needs to be trialled first. They tend to be a bit twitchy until you know them well. A 3 wheel scooter for E makes sense for field trips as that's easier for her to handle unless she's got really precision motor skills on her upper body. This is some practical knowledge from a diplegic CP guy who does have somewhat excellent use of his upper body.

Judith said... I read about this on the blog “Musings of a Marian Mom”.

Judith said...

Sorry for the typo, that is "Musings of a Marfan Mom"

Bella Stewart said...

Great share, this guide very helpful and is great for what I am looking, along with this I also referred the top folding wheelchair brand review, it will also help to best buy.

TheCzarsOf45 said...

I just got my PT wheelchair evaluation for a SmartDrive for my TiLite AeroZ Series II manual wheelchair. And will be getting a new Ride Designs cushion and back. And I'd recommend getting her a new TiLite (as their chairs and the SmartDrive are part of Permobil of Sweden and Lebanon, TN). Keep both in the family.

Anonymous said...

Or a handcycle there's uprights like which I own and can remend as I own and use alot or a etrike

Elliot said...

I also vote for the SmartDrive. I have one (and a Tilite Aero Z) and it works really well for the situations you've described (except a beach/in sand). And it's improved since some of the above comments were written. You hook it onto a hitch that's added to the axle of the chair (there's an adaptor thingy if you have a folding chair, since there's no axle tube), turn it on, and go. It's removable for when you don't want and weighs about 13 lbs and is the size of a...loaf of bread? Cat? Basically it's small and (relatively) easy to fit into a car and fit in a small space. Top speed is 5 mph but you can change it in app if you don't want her going that fast (and can change some other things, like how fast it accelerates to top speed). I think the above commentor said it's finicky because it legit was a couple years ago. Mostly people used a wristband to control it, and the wristband and SmartDrive were linked via bluetooth, and they liked to drop the link, leaving you stranded halfway up a hill. But the new one has buttons you can attach to the chair (mine are on the tubes right in front of my seat cushion, by my brakes), and depending on the setting you choose, you hold and they ramp up speed and you let go when you're at the speed you want and then they keep the chair going at that speed til you press again and then they stop; you steer like you would if you were coasting....just using the pushrims (and don't need much pressure either...I have a connective tissue disorder so my joints aren't great, but the amount of pressure needed to steer doesn't bother me at all). The other setting for the buttons you press and the chair goes and then it stops when you let go, which makes it hard to steer... You can also still get the wristband, or a particular Smartwatch that will work via bluetooth (so I can see using the buttons in the latter setting in conjunction with the watch, if you were just going a small straight distance). I have used the watch, which has a much more solid bluetooth connection with the SmartDrive now, but you have to tap it to start and stop, and I have had trouble finding the right sensitivity so it activates and stops when I want it to but not when I accidentally bump the watch or go over a bump in the sidewalk and it thinks I want it to turn on/off... So I have stuck just with the buttons (which are wired and plug into the SmartDrive unit, so no bluetooth issues to worry about). If he's using her chair for distances or when she gets tired, the SmartDrive would work quite well because you don't really have to do any's just touch/tap to go, you steer, and then touch/tap to stop. I push as much as I can, so I can maintain some muscle and strength (and independence), but if I get tired, I switch to using the SmartDrive. There are other power assist options, but most people now lean toward the SmartDrive. I rarely see anyone with the wheels that have built in power assist, for example. Each wheel is kinda heavy so that's not super practical, in my opinion, unless you're using your chair full time and have a wheelchair van, whereas the SmartDrive is lighter, detachable and small, and so it's easy to bring along in the car or wherever so you have it, but can choose not to use it and just use your chair as is, vs having the power assist wheels and having to use them (unless you bring a regular set of wheels along? If it's even possible to easily switch between powered and non-powered wheels?). I know this is an older post, but I'm assuming as your daughter gets older and wants more independence and a way to do stuff even if she is too tired to walk, this is still a relevant topic.