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nora

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Palo Alto, CA
Hi all,

My mom was diagnosed with bulbar onset ALS in August. She has maintained an incredibly positive and strong attitude and while it's hard for all of us, we're making the best of the situation.

Anyway, her birthday is coming up in April and I had an idea for her but wanted some advice. We used to do this thing called the "10K Club" when we were little - she would run a 10K while we rode our bikes and then we'd go out for lunch afterwards. We did it every week, and it was a very fun tradition.

She has lost a lot of mobility in the past few months. She can still walk, but with a cane, so a 10K is obviously out of the question.

What I thought would be a fun birthday present would be some kind of wheelchair/stroller-type thing that I could push while we ran. I just think it would be really nice for her to be able to get outside and enjoy the fresh air.

The trails are dirt in some places, and can be a bit rocky and bumpy. Any ideas on the wheelchair that can a) move fast, and b) handle that kind of terrain? I'm imagining something somewhat like those baby strollers that people push when they run - but a much bigger version. Also, what's the best way to check with our health care to see if any of it is covered?

Anyway thoughts, tips, or ideas are greatly welcomed and appreciated!
 
Hi, Nora-

If your Mom doesn't have weakness in her arms & hands, think about a scooter to use.
You can check with her clinic or ALSA/MDA rep about getting one from the loaner closet. Tell them you are looking for one for unpaved terrain (there are different types of tires for different terrains).
If they don't have one, check about renting one from a medical supply store for the day.

It is very difficult to push someone that distance on that terrain; I wouldn't recommend it if you didn't have to. And, do not buy a wheelchair and put it through your insurance/Medicare. They will only pay for one chair every 5 years; you want to save that for a better power w/c she will need further down the road.

I think your idea sounds great, and I'm sure your Mom will enjoy the thought & the day, and be touched by the sentiment.
And, I think a scooter would work great for this. They can go up to 4-5 miles/hour, they are fun for the user, and the PALS will feel less "handicapped" since they drive it themselves.

The only issue is transporting it. If you have a SUV or access to one, 2 strong guys can lift it & place it in the back. (we did this)
Good luck.
 
My wife has been looking for exactly the same thing. That's a great idea for your mom. I was a runner before and used to love to run on the dirt trails near our house. I really miss it, and she would like to take me out on those trails. It is not super rugged terrain but I think a regular wheelchair would be too bouncy. Online I have found what they call beach wheelchairs which have big tires and can go off road, but they are quite expensive, $1000-2000 and up. Finding a used one would be ideal but no luck yet.
 
if money wasn't an issue , I would get a tankchair. Yes, even PALS need toys, and a reason to get out and play.

Who was it that said "the more complex the mind, the greater the need for play"

Glen
 
Glen-
You must have a very complex mind!
 
Nora, I use a Pride Legend XL for "off-roading". I use it daily for 2+ miles running my dog. It is good for rough ground and has springs that soak up most of the shock. It is pretty good in snow too but is of no use in soft sand. You'd need the beach buggy that Hal describes. I've always been active outdoors and the scooter has really given that back to me. I found this one on Craigslist for $1200. It was brand new but a year old. The original owner was afraid to even try driving it and she can walk! You don't need much arm strength to operate it. I transport it around in a wheelchair ramp van. It goes 6-7 mph which is fast enough. I've attached a couple of pics taken about a month ago (in Arizona, not Newfoundland!). Chewie is normally running ahead but in the picture I had turned around for a photo request and Chewie stayed where he was. We were a couple of miles into the desert at that point and he was definitely not ready to go back to the van yet. Pity you are not nearby as I'd love to loan it to your mom.
 

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Oh what I wouldn't pay to be screaming around the Arizona desert on a sporty wheelchair instead of stuck in Ontario watching the salt wash away down the street and the snow melt :)
 
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That is so very thoughtful of you Nora to do this for your Mom. I too had always been very active throughout my life in sports, camping, hiking and off road ATV riding. Since the onset of PLS I can no longer partake in most . I still do some swimming but getting out of the pool is tough and thats using the stairs. Anyway I still continue to ride my ATV as it has electric start and reverse. I ride it in and out of the Toyhauler and then around camp or long rides! My kids now refer to my atv as the "HondaRound"....lol

Well hope you find just the right vehicle for your Mom. Our prayer for you and your family.
 
10855-wheelchair-albums291-camelchilling-picture2018.html


This was my first sporty wheelchair, codename Camel. It's a Quickie GP, the cheapest and most basic rigid manual on the market. My progression was insidious for a long time, and I used this chair for two years. I learned everything past a basic wheelie in this chair, and eventually moved up to a much more minimalist design. It does terrain well for hobby stuff, I camped and hiked miles in it. If you were going to be living in the woods, knobbier tires would be called for. Back when I needed lots of pushing, it was perfect. It doesn't have all those attachments on it anymore, but I still own them. Pushblax handrims, which I run on my current rig, make self-pushing with bad hands easier. Like all rigids, it folds back down and wheels off instead of laterally, and fits in most trunks. I realize it won't fit your Mom's long term needs, but it is a sturdy workhorse just sitting in my storage unit. If it just gives her one good summer, that would be worth the work of getting it to you. My best memory was sitting in Camel at the top of Mt Whiteface, realizing that there was still so much life possible to experience, just with a whole lot more help. It is yours if you want it.
 
Do take a look at the HIPPOCAMPE wheelchair. BRILLIANT. Wenty up Mt KIlimanjaro è and NOT v expensive and weighs only 14 lbs
 
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