Consider e-bikes

If you're too healthy for a wheelchair, but too sick to walk for more than 30-60 minutes without feeling uncomfortable, consider a good e-bike (a pedelec, to be precise). For me it has been lifechanging. I'll write about my experience with an e-bike from a EU perspective. In other countries the regulations might be different.

An e-bike is a bike with motor assistance. The motor turns on as long as you are pedaling and are below 25 km/h. The driver can control the level of motor assistance. On my e-bike with the highest level of assistance, the motor does 77% of all the work. This kind of e-bike doesn't require a driver's license or insurance. The motor assistance matches the pedaling speed. I can accelerate very quickly if I want to, or gently, and maintain low speed.

I live in an area with a lot of hills, and with the highest assistance level I can drive moderately steep uphill roads and still have enough breath to talk comfortably. Due to the motor assistance, I can drive it for 1-2 hours, with a pause or two, and be okay. For some reason riding the bike doesn't trigger PEM in the same way as walking does, I suspect due to the differences in orthostatic stress and cardiovascular demands. I do notice an effect but it's much milder than with walking. The battery lasts a long time.

It's lifechanging because:

• I don't need a car that I can't afford to get to nice places in nature.
• I can do things together with healthy people.
• Many people love riding bikes and I quickly made friends.
• I can drive on roads, then continue on forest/mountain/lakeside trails, and go home without parking or changing vehicle.

There are also compact e-bikes for cities which I have no experience with. I bought an electric mountain bike because of the hills and trails where I live.

There are also e-bikes which have a throttle to control the motor and are basically a moped. These can go much faster, but require a driver's license and insurance (where I live).

A cheap e-bike will probably have a much weaker motor, installed on the rear wheel (instead of centrally, which is better), a smaller battery, and the motor assistance won't feel as smooth and natural. It might use components that don't last as long and could be difficult to find replacements for. If you buy a cheap e-bike, make sure that it's servicable.

There are some negative aspects too. A good e-bike with a central motor is costly. For me the purchase only made sense when I was sure that I would continue using it for years. They can be stolen relatively easily if left unattended in a city. If you are planning to use it in a city, at the minimum, invest in a high-end U-lock and don't leave it where no one is watching, and never for long or in busy places. E-bikes need maintenance more often than motorcyles or cars (but the basic maintenance is easy enough to do by yourself).

If you aren't sure whether an e-bike is right for you, you can rent one, or borrow one from a friend to get a feel for it. At first I was insecure but I quickly became more comfortable and stronger. That helped me understand that it would be something worth spending money on.

If you don't like the idea of keeping your balance on two wheels, there are tricycles.

 

That sounds amazing, I’m so happy for you!

Thanks for this really thorough review of your experience and the considerations involved.

 

I'm glad you can benefit from your e-bikes.

I was intending to get one, with a trailer or similar to take my cat to the vet, for example. But since I worsened a few years ago I don't think I would be safe, especially with the increased traffic.

I'm not even with-it enough to see the road properly when I'm in a car. Maybe I just don't get out enough these days and am therefore too easily distracted by the overwhelming number of things appearing and happening!

Does anyone else get this?

 

I don't like driving in traffic either.

 

I’m extremely lucky to be alive considering how bad I was at crossing the road at one point in my illness, a year or two there and I was walking in front of cars on a regular basis. I shudder to think about it now.

 

Freedom! That's what it represents. I can see an eBike making it a lot easier. On a regular bike, stop/starts take a lot out of you even if you pedal at just 10W. I did that in 2010 and crashed for 2 weeks. Between wheelchair and walking 1hr is a huge swath though. Maintaining balance requires muscles that you haven't used for a while, so I'd be careful.

I'm also less susceptible to PEM when I'm on the road. I think it has to do with brain chemicals than anything else. As usual, no proof.

 

For me, driving triggered PEM, and the more stressful the drive (icy roads at night), the worse the PEM.

I'm hoping that the price of e-bikes will go down at some point. I think demand is high now since it's a new fad, but when the people who want one have one (and plenty sit in a garage never ridden, same as normal bikes), then the price should drop.

 

New fad?

E-bikes have been around at least 20 years.

The price then was stupid and it is still stupid.

E-bikes are only really for ground floor people anyway, as they tend to be heavy, and heavy, stairs, ME, and me, don't mix well.

 

On your point about balance, I haven’t been able to ride a bike since becoming unwell, I couldn’t physically balance and maintain focus to avoid obstacles.

 

They have been around decades but it’s only recently the batteries and stuff have become relatively small and long lasting enough and the choice and price range wide enough for the general population to get keen.

 

I can't balance on a bike either since my ME got worse, but in my case the ability to focus on the road isn't so much to do with balance—it's more about the exertion of pedalling to stay upright. If I'm sitting in a comfortable car seat, I can drive an automatic car as well as anyone (albeit for a very limited time).

I wonder if that's partly why you can't focus on the road, @MeSci? Getting out of the house and into the car has just used up too many resources.

 

E-bikes are expensive and people are rightfully reluctant to buy them when there are uncertainties.

From what I understood, a quality e-bike will last at least 5 years, perhaps up to 10. If in that timeframe you make good use of it, then the price can be justified. For me the purchase was right because I was able to borrow an e-bike for a while to better understand if it would be compatible with my limitations.

Now I have a fun activity I can do once a week or so, share with others, and be genuinely excited about.

I occasionally use it to go to the beach and meet people as well. Maybe some day I will use it for more activities. What limits its use is security because it's a bad idea to leave an expensive bike unattended. I did some research and securing a bike with anything but an U-lock or a very heavy chain is too unsafe. Even these two can be cut with an angle grider in little time and thieves increasingly carry these. The idea behind these heavy locks is to force a thief to use a noisy powered tool if they want to steal the bike, which draws attention and puts them at risk.

 

Like powerchairs, I guess. A really solid, capable new chair is north of £7K, but if it's what you need to be able to get out and do the things you enjoy, it's completely worthwhile.

I only pay about £2K for secondhand ones, which is probably comparable to some e-bikes. It's still a lot of money, but as I can't get out of the house without one, it's worth every penny. Powerchairs are easier to buy secondhand than bikes, as they don't get as much hammer (my last one was 19 years old when I scrapped it and still theoretically repairable).

 

A good ebike is around €2000. The cheapest I would consider buying for my personal use would be a hardtail mountain bike from an established brand costing around €1600. Paying more gets you better batteries, components and some extra features. A good motor with high torque is important for people with chronic illnesses in my opinion, especially if living near hills.

Full-suspension ebikes are much more costly and I don't consider them worth paying for as disabled person with limited income.

If I lived in a city and rode on at worst gravel roads, I would probably spend a bit less. In cities a less powerful motor is probably acceptable. Compared to mountain bikes, a smaller battery should be okay, and the suspension and cassette don't need to be as good.

 

To give you an idea of how powerful and capable an electric mountain bike is: There's an alley that I sometimes go through, with a section with three stairs. The bike can easily climb these stairs.

 

Practical e-bikes, at a price that wasn't just for the ridiculously rich. By "fad" I suppose I meant "being bought by a significant percentage of the population". Suspension for bikes existed for quite a while before the price dropped enough for them to become common.

I haven't yet seen any ads for recumbent e-bikes. I have ridden my regular bike to town twice (63 km+ round trip), the last stretch is torture for my parts in contact with the saddle. A recumbent would be more comfortable. I'm not sure whether recumbents are as safe or convenient for urban riding. My ideal bike would be a recumbent trike (for slippery conditions). Motor assistance would be nice for those long, steep hills, but I wouldn't pay an extra $1k or more for that, and the higher theft risk.

FWIW, I find the handlebar height for typical bikes to be hard on the arms. That position looks great for ads where the rider is trying to conquer a steep hill, but it's awful for long rides. I made a steering shaft extension for my bike, so my torso weight isn't pressing down on my hands, and that is far more comfortable. It looks odd, and mounting is more awkward (less room for knees), but it does keep my arms from getting tired so quickly.