Cycling Problems with MS

[Tonto]

Hi. I have MS and I love to bike. In the summer I’m on my road bike and in the winter I use my cycle trainer, but lately it doesn’t seem quite as easy. I’m interested to hear what problems you have when you ride and how you solve them (or do you just accept it and enjoy being on your bike). Perhaps sharing problem stories and solutions will help others who never thought of that “solution”.

[ElliotB]

I keep cool by wearing a cooling vest when it is warm out. I also invested in an electric assist bike so I could ride reasonable distances and not worry about getting too tired to pedal back.

[1eye]

Hi. Because of what we are finding about vein morphology in MS, you may be able to avoid the fate that befell me. A long time ago I was riding with my long-time cycling partner and had an accident (minor). I was not wearing clip-on cycling shoes; I'd never worn them. But a common thing that happens to clip-on users happened to me. I came to a dead stop, and could not get my legs off the pedals soon enough. I fell right over. I have not been on a two-wheeled bike since.

I feel that my leg weakness had been temporary, and due to sudden heating up when I stopped. Had I known that, I might have continued cycling. I might have just been more careful, especially in these sudden-change conditions. Now, because of Dr. Zamboni's work, I know that my brain circulation will take seconds (I give myself a buffer of 10 seconds) to adjust to a posture change, and probably other large, quick changes, depending on my activity. I am dizzy after I stand up, so I give myself 10 seconds.

Some of my atrophy may be disease-induced. But I am convinced that a lot of it is due to my not challenging myself or using my foot as much. I think my AFO has taken its toll.

Now I cycle on a recumbent tricycle, with sandals that have built-in pedal clips. It is a different exercise because you can't put your weight to work pedaling. In the winter I have to use a trainer too.

I am not dizzy all the time, but I do not want to fall when I get dizzy. You can't fall off a three-wheeler.

For heat, I wear two coolers like neckerchiefs, that are full of beads that absorb water. Then I wear a do-rag soaked in water, under my helmet, or alone.

On a bike, your best friend is whatever wind rushes by, because it evaporates water and cools you. I can go out in the hot sun if I am traveling, and wear my coolers. A variation, if you want, is to wear a shirt soaked in water. I can do about 8k without getting overheated.

[Tonto]

When I’m on my cycle trainer I use a huge fan to keep cool. When I start out it is actually chilly but I soon warm up. If I don’t use it my hands/arms and feet/legs soon go numb. I have never used a cooling vest or anything else when I’m on the road but might give it a try. Are they uncomfortable or heavy? I guess I am just a weight nut and wouldn’t want anything eating into my top speed (as if). I sometimes also have issues with releasing from the clipless pedals, even when I have lots of time and with them at the loosest setting.

[ElliotB]

Are they uncomfortable or heavy?

No. But with regards to the benefits you will receive, they are worth their weight in gold!

[1eye]

When I’m on my cycle trainer I use a huge fan to keep cool. When I start out it is actually chilly but I soon warm up. If I don’t use it my hands/arms and feet/legs soon go numb. I have never used a cooling vest or anything else when I’m on the road but might give it a try. Are they uncomfortable or heavy? I guess I am just a weight nut and wouldn’t want anything eating into my top speed (as if). I sometimes also have issues with releasing from the clipless pedals, even when I have lots of time and with them at the loosest setting.

The clipless pedals are what I couldn't get out of. If I had my life to live over again, which I don't, I would have used a trick many clip-on users like bicycle couriers know: find a stop sign or other hand-hold, and slow down and grab it while your legs (and neck and brain) cool off.

The bandanas and wet headgear weigh less as you go, due to evaporation. The location you wear them (around your neck -- remember jugulars?) is critical: they work, as long as they stay wet, and you keep the air moving over them. I have been out with them on bike rides in the hot sun, where if I'd been without them walking I would have melted and had to have been rescued. Dr. Zamboni knows why. My brain, apparently, does not work well for a few seconds after a sudden change in blood flow or posture.

I have a cooling vest, but it is heavy, and made of paraffin, so that it takes time to change state from frozen to liquid, and stays at a constant temperature during this change. I don't wear it because it might break and leak paraffin, which is extremely dangerous and flammable. I was glad I was not wearing it when I fell into a ravine and hit my helmet on a culvert. You don't want to see the picture. I was trying to change gears uphill, and my chain fell off. My brain failed to change gears as well, and even though my hands were on the brakes, I just rolled backwards off the road. Hmmmm. What's wrong with this picture?

I wonder if the bandanas would work for the girl everyone heard about who melts after she runs?

[Tonto]

A similar thing happened to me on a group ride. I was at the back (as usual), climbing a hill, when the entire group nearly stopped for some reason (the hill wasn’t that steep). I tried to change gears, the chain came off, my foot was stuck in the pedal, and I was going nowhere – except onto my side into the ditch. Lucky for me it was a shallow ditch with grass. And then everyone took off again. Hey, I’m in the ditch back here. Ever since then I leave more space when climbing hills in a group. Even when cycling alone I am more careful about judging when I might have to stop quickly, especially when climbing a hill because it can sneak up on you.

[1eye]

Yeah, slower reaction times and some numbness mean you might learn the hard way what you thought you already knew: how to brake. Keep your fingers near those brake handles, and don't ever forget to use them. Your safety, and your life, depend on it.