E-biking and MS

[elizilla]

I was a hardcore bicyclist in my 20s, and a hardcore motorcyclist in my 30s. But in my 40s I started to have weird issues. First the peculiar awkwardness, then the numb feet, and then poor heat/cold tolerance and then the weakness and fatigue. I felt like a raging hypochondriac for years before I finally got a diagnosis of MS.
Anyways, e-bikes (or variations thereof) have been great for me. First I had a Prodeco Stride, but it was hard to lift my left foot onto the pedal, due to peripheral neuropathy. Next I had the Razor Ecosmart Metro, which has a wide skateboard deck instead of pedals. Unlike some other MS sufferers my balance is decent enough, and it was easier to get my foot up onto that deck, so it worked pretty well for several years. Then, due to increasing fatigue and weakness I decided I wanted three wheels, so now I have a Liberty Trike, which is also working out great.

The e-bikes have been the best thing I have found, for maintaining my quality of life despite MS. I find them more helpful than any of the medical treatments I have had. Without them I would be a shut-in. Also I was always a gearhead and e-bikes provide an outlet for that. I used to farkle* my motorcycles and now I farkle my e-bikes. I suppose I will always be looking at what comes out, and getting new ones now and then, to play with new technology and enjoy another round of farkling.

*Farkling is when you install all kinds of mods/accessories to your bike. I don't know who coined the term but this is the word they use for it in all the motorcycle forums I have belonged to over the years.

 

[LimboJim]

Your story inspires me - ride on, right on!

I'm 55 and not very athletic, but started riding bikes in my adolescence, and have been mountain biking recreationally since 1991. Unfortunately, I'm also an insect magnet and have battled bug-borne illnesses a few times too many this past decade. Thanks to aging and Lyme Disease (at least twice), I only rode my old Stumpjumper a handful of times after turning 50, and never on the hilly trails I once enjoyed.

I got my first ebike in 2015. It got me cycling again, but I'm not too fond of road riding. Pedelec MTBs have since been my saving grace, and I farkle them like crazy now, too

 

[ebikemom]

elizilla, thank you for sharing your story here! Ebiking is all about quality of life and increasing transportation and recreational freedom for all of us, and your story that shows how different kinds of ebikes have helped you to continue to cycle as well as to slow the progression of MS, is amazing.

Your post will attract more stories! And, I have a colleague with MS with whom I will share your story.

And, golly, I learned a new word! "Farkle!!!"

 

[Drahuber]

I love the word farkle!
All my life I've been a keen cycler so when I became disabled with a chronic pain syndrome in my right knee 8 years ago, my whole life changed dramatically. It has been severe, so have lost job and many other things. Ebikes have really helped me, I'd almost say they saved my life! For the first few years I could peddle a standard ebike, however my leg has got weaker and weaker, so 2 main issues have come up.
Firstly, hills and torque. My left leg is almost useless now and so a lot of hills are not possible with most ebikes. I needed a lot of torque, easy gear changing and a throttle. High torque usually means midrive motor, so usually no throttle. Only bike I found was the Evelo delta. A hill climbing monster! A 750 w bfang mid drive motor, 48 v battery, devinci variable transmission gears and a throttle. This bike goes up most hills with throttle only if you need it. So for people with disabilities, this is good to know.
Problem is the limit for motors in Canada is 500w. This I assume was put into place to limit speed, but now with speed limiters on, this no longer applies. The 750w makes all the difference for a disabled person getting up hills with minimal or no peddling. I wrote the various authorities here in Canada , making this point about torque without more speed, but they would not make an exception.
So seeing that this bike was the only one of its type that I needed to keep me riding, I found a way to bring it here.
It really is fantastic and has kept me riding.
The second issue that I have not solved, is how to cycle with one leg. I have a loose open cage on my good side and then put a peg on the horizontal back tube to rest my foot on, but this makes me unbalanced. Just letting my leg dangle puts me at risk of my foot hitting the ground. I need to be able somehow to disengage the crank on my bad side but don't know if this is possible.
Does anyone have an idea for me?
Thanks, I look forward to replies and I hope my suggestion on a bike to get up hills for disabled people line me is helpful.

 

[PDXzap]

@Drahuber
Which side is your "good side"?

What I'm thinking of is removing the crank arm on the bad side and replacing it with a "peg" that's sized appropriately on which you could attach a pedal. The "peg" would be more along the lines of something like this pedal extender:

Bicycle Pedal Extenders +20mm Spacers (Steel) - Asia Booth

Bicycle Pedal Extenders +20mm Spacers (Steel) Designed to move the foot out and away from the crank arm to provide more foot clearance, Pedal Spacers…

www.asiabooth.com

I would think a competent machine shop could easily fabricate such a piece fairly inexpensively.

 

[Drahuber]

Thanks PDXzap. I didn't know such things existed . My bad leg is my left one. Is this kind of modification easily reversed if my leg improved or I went to sell the bike ?

 

[PDXzap]

I didn't know such things existed

I don't know that it actually exists, I didn't do an exhaustive search. If you need a clearer description of what I'm thinking of I would probably have to draw a picture of the part.

 

[Sierratim]

Farkling. I like it!

I, too, have an auto-immune disease, Myastenia Gravis, diagnosed 25 years ago. My docs tell me to keep active. At 70 YO cycling is just what the doctors ordered, literally.

I wish you the best with the journey you are on with your challenge.

 

[Drahuber]

thanks , Sierratim . Yes ebikes make such a difference to the disabled life. I do wonder if there should be a separate thread for this topic .

 

[Keith Johnston]

Hi. I'm a new member here and like many, was an avid cyclist for years until my MS progressed and made traditional road cycling untenable. Hello ebike. My splurge is a new Trek Verve+3 ebike, a step-through. I love it and it works great (better than my body....). Two challenges:

1. I find that I really need a throttle to help me start off from a dead-stop--I didn't think I did initially, but reality always rears its ugly head and disagrees with me...This is a huge issue for me, especially in the summer when the heat exacerbates all my symptoms. I've been told that Trek does not have throttles on any of its ebikes, and the only way to add one (if possible, at all), would be through a warranty-negating hack of the Bosch drive-train and controller. So, two questions within this: is it even possible to add a throttle to this bike? And if so, how?

And if not, I'll have to modify my physical workouts to facilitate pushing off from a stop. Or, sell my beloved Trek and find an alternative bike (or e-trike) with a throttle.

2. Like others, my feet commonly slip around or fall off the pedals. I can't do cages or clips b/c of leg weakness and inability to quickly remove my foot from a cage/clip. Any other ideas? 3D printer pedal mods??

Any or all thoughts would be most welcome. Thanks so much!

Keith

 

[Saratoga Dave]

I replied to your specific throttle question on your other thread, but now I see the e trike reference above. Should you discover now or in the future that you can’t continue with the Trek, these might not be a bad alternative.

There’s a trike specific shop in a town not far from us along the Erie Canal route that apparently does a pretty good business with regular and e trikes. I see these things all the time out along the Mohawk, and I’ve stopped and chatted with a couple people from time to time about their e trikes. They love them. An age or medical related story seems common, but not always apparently. You can get some pretty extreme e trikes out there, it turns out! I’ve seen some pretty cool stuff out there.

A doctor friend recently bought a non electric trike as he is recovering from very significant cancer surgery. He didn’t trust his balance at this point, and is very happy he had that option to keep riding.

 

[Keith Johnston]

I replied to your specific throttle question on your other thread, but now I see the e trike reference above. Should you discover now or in the future that you can’t continue with the Trek, these might not be a bad alternative.

There’s a trike specific shop in a town not far from us along the Erie Canal route that apparently does a pretty good business with regular and e trikes. I see these things all the time out along the Mohawk, and I’ve stopped and chatted with a couple people from time to time about their e trikes. They love them. An age or medical related story seems common, but not always apparently. You can get some pretty extreme e trikes out there, it turns out! I’ve seen some pretty cool stuff out there.

A doctor friend recently bought a non electric trike as he is recovering from very significant cancer surgery. He didn’t trust his balance at this point, and is very happy he had that option to keep riding.

Thanks for the reply. Yes, electric recumbant or trikes are possible, but a last resort if all else fails....I really appreciate it.
KJ

 

[Keith Johnston]

An update. Again, I have MS that is progressing. I decided to get a recumbant etrike w/a Bafang motor, which is torque-based system for pedal assist, plus throttle. I just ordered a Sun EcoTad with the e-drive from Utah Trikes. My desire to keep pedaling on a balanced platform won out over my false pride of thinking an upright bike is a long-term solution. Going to a trike is a huge concession in my mind b/c I never want to give an inch as a fight my MS, but I'd rather ride than not....

So now, I must sell my brand new, beautiful and beloved Trek Verve+3 ebike. Large frame. I bought it in April for $3100 plus one full checkup and overhaul for $100 in the future. I'm not looking to recoup 100% of my new retail outlay, but a high % of it and am open to offers if anyone knows somebody interested (BTW, I'm in Madison, Wisconsin).

 

[Sierratim]

An update. Again, I have MS that is progressing. I decided to get a recumbant etrike w/a Bafang motor, which is torque-based system for pedal assist, plus throttle. I just ordered a Sun EcoTad with the e-drive from Utah Trikes. My desire to keep pedaling on a balanced platform won out over my false pride of thinking an upright bike is a long-term solution. Going to a trike is a huge concession in my mind b/c I never want to give an inch as a fight my MS, but I'd rather ride than not....

So now, I must sell my brand new, beautiful and beloved Trek Verve+3 ebike. Large frame. I bought it in April for $3100 plus one full checkup and overhaul for $100 in the future. I'm not looking to recoup 100% of my new retail outlay, but a high % of it and am open to offers if anyone knows somebody interested (BTW, I'm in Madison, Wisconsin).
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