Cycling with MS

Everyday living
1

Evening All,

Just wanted to get some Feedback & Advice from other Cyclists.
As a regular bike rider, I’m keen to hear from other members on various things, that would help in keeping those peddles turning.

Last year I was able to do Tour climbs in the Pyrenees. One year on, I’m tackling each hill above 3% in 1st gear.
Lucky by some standards, I’ll grant you, but I’m keen to hear what other people are doing in relation to Nutrition & Bike Setup.

I’m still averaging ± 14mph over a 35 mile ride, with the occasional 50 or 60, for good measure.
I have an obvious weakness in both legs now, but it’s my right leg, which is probably 50%, of what it was last year.

I do the usual porridge & bananas beforehand, nuts, energy bars, cake, water during, and a healthy dose of milk when I’m finished. In fact, I’m drinking a lot more of this ‘super food’ now. ± 1.5 litres p/d.

I now have a bottle on the bars, so don’t have to worry about reaching for a drink (balance), and a snack bag on the crossbar, so the need to stop, apart from the obvious comfort breaks, and to swap water bottles, is not a real problem.
I can eat & drink to my hearts content. But, is there more I could be trying ?

Unlike walking, which is a mission in itself. A 30 minute mow of the lawn, and I need a sleep.
I would urge anyone to take up cycling.
Your legs will feel so much better for it !!

Interested in any advice you can give :slight_smile:

Enjoy
Mark :slight_smile:

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live in London and use my bike as my main form of transport. Excellent for exercise, love it - but not sure if i could venture the Pyrenees - full of admiration for you doing it!!!

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I have been a cyclist my whole life but recently (last Autumn) had to give up because I can’t get my feet on the pedals anymore. I’m very sad about this - it was great exercise and meant I could be out and about like anyone else.

My advice for keeping cycling as long as possible is to look at electric bikes. I had two, the first just gave me a bit of extra oomph up hills. I used that for a couple of years until I started to struggle to get started cycling because I couldn’t lift my right foot onto the peddle without using my hand. After that I got a bike that would start using a throttle, I would lift my foot onto the peddle and then be able to cycle myself.

The law on electric bikes is changing so not many companies will be doing the kind which start with a throttle. I know a company that has a very clever bike that will do this and still comply with the law. I can give details if anyone wants to PM me.

Good luck with keeping cycling - hope this post helps you do it.

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Morning Guys,
The Pyrenees was last year, and I’ve already cancelled for this year.
I just don’t see me making that sort of climb anymore.
I’m down to 1st gear on most uphills now, just a year on, so I just take it one month at a time now unfortunately.

Having said that, some of the Tour climbs aren’t as bad as you think. I was suprised.
They are very long, normally in excess of 15kms, but the gradients are / were quite manageable at 5 - 10%.
Nowhere near as bad as you’d imagine :slight_smile:
Is that all in the past for me, who knows ? We’ll see how this year pans out.

At the moment, I am more interested in how others are eating / drinking, and whether there is something different I can try ?
I love the bike, and at the moment, having my right leg, in particular’ clipped in to the pedal, helps enormously.
How long that continues, is anyones guess.
I’m just trying to look at every aspect, as you just can’t give in !

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It’s all about perspective, isn’t it? I am in awe of what you can do now; you, naturally, are mindful if what you cannot do now that you could do last year, although clearly you are a person who tries to accentuate the positive, and good for you.

I am sure we all have our personal examples of something similar - I know I do. I used to be a keen walker - never anything too strenuous, but 8-10 miles a day of gentle hill-walking on a holiday was fine. These days, when I am somewhere beautiful, I am constantly torn between being relieved that I can still do a tiny bit and dismayed that I have lost most of a really good thing in my life. Thank you, Prof MS, provider of lessons in philosophy, without the option.

Happy cycling.

Alison

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Hi Alison

Unfortunately I watched my Dad deteriorate for ± 15 years with MS, so know only too well what may lie in wait.
At 52, there isn’t a moment to lose.
It’s all good stuff.

I try not to get down about struggling with the shopping bags or climbing stairs, so if I can encourage others onto two wheels, that would be fantastic, it really is the way to go, whatever your ability, strength or balance… and that chocolate cake tastes even better.

Best foot (and thats definitely my left) forward :slight_smile:
Enjoy

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Right, in my case. My left needs notice in writing.

A

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I’m relatively newly diagnosed with MS… and I, too, love my cycling. You might be interested in reading some of my blog: About me | Cycling with MS

who knows what life holds eh?

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Morning I love your attitude so healthy thanks for giving me a little boost this morning. I used to love cycling but thats not going to happen anymore sadly but hey i am 65 so have had a fab life.

What i am answering is your question about eating drinking. My regime is simple, no smoking, alcohol, sugar, large amounts of sat fats, processed food, or gluten, no dairy.

I start with protein for breakfast useually oily fish on linseed/flax bread, and berries, and a glass of Almond milk.

I eat my main meal at 2pm and its either fish or chicken, with lots of good veggies, rice, sweet potato mash, or similar.

In the evening i have non dairy fat free yoghurt and fruit, thats all folks lol. I am not so hungry now to be honest being sedentary, but obviously you are still active so would not follow my eating habits, but what i mean is i follow the above and i do feel better as regards to fatigue and spasms etc.

I drink water in between which i find quite refreshing. When i have my bloods taken my GP always comments on how good everything is, so i must be doing something right.

I did buy the book Overcoming MS by Janick its got some good ideas but i did find some of it hard to follow as i dont really cook for myself i rely on others.

I do think diet is important though to maintain a healthy lifestyle with MS. As it has inflammatory issues its good not to eat stuff that stir it up.

I love your positive attitude, and thanks for sharing. Rosie.

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I’m another cycling nut. Did 2,000 miles last year (yes I am geek enough to make a record of each ride) and am hoping to get near it again this year. Having been able to run in a long time or walk much uphill, but cycling works for me. DX 8 years ago but legs have been funny long before.

I dunno how much helps with MS but it’s wonderful from the view of feeling like a fit person as I zoom along as opposed to funny walk .

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Morning People,
Good to see the post is still live.
Things have moved on since last port, but thankfully still enjoying the cycling with a reduced performance.

I have pretty much done the same things as Crazy Chick, including the book by Prof Jelinek.
My diet has changed quite a bit in the last 6 months, although its slipped on my trip to Crete, in the last two weeks.
Oh and yes, we did get stuck with easyJet, just to add to the expense.

Gone is about 80% of my red meat & dairy intake, caffeine and pretty much all the alcohol.
Cheese, suprisingly being the hardest to give up !!
A bit of milk for tea, but it’s Almond & Coconut …
Has it all made a difference ? I would say YES. If nothing else, my weight has gone down, and some lethargy.
I’m only 80kgs, so wasn’t doing too bad anyway, but every little helps.

For the cycling, I’m pretty much on the small ring most of the time, but still getting a 20 - 22 km/h average.
Obviously the hills are the stumpling block, but still coping just, upto about a 12% incline, so I can’t complain too much.
It’s still very odd, when you book onto an HF Walking Holiday, you are the youngest & fittest looking in the group, and you have to say, ‘My fiance will be doing the hikes with you, but I won’t, as I can’t walk that terrain / distance. I’ll be hiring a MTB locally, and going off on my own’. Confused looks :slight_smile:
Worked out well, although Hot Hot Hot & Hilly !!

Do any of you guys live local to Beds / Herts.
I have to ride on my own these days, due to the performance issues, but it does get a bit lonely :slight_smile:
No one rides like someone with MS, so cycling clubs aren’t an option.
My mates are all up in 27 - 30 km/h range.

Should setup our own get togethers. Ideas ?

Speak soon
Mark

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EJ

Just started reading your Blog.
Problem is, it’s too good, and I’ve just realised the cat is eating my muesli mixed with coconut yoghurt.
Who’d have thought ? :slight_smile:

I’ve registered to follow, but if you ever want someone to do a ‘slow crazy ride’, drop me a line.
I’ll drop you a note on the blog

Mark

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Daff,

As I said to someone just a few days back, walking vs cycling for me is a bit like a seal on dry land vs water.

Awkward & Hard Work vs Freedom :slight_smile:

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Another cycling nut of sorts here. Took it up 5 years ago (I was diagnosed 10 years back) after feeling slow and lethargic having had to give up running and ultimate frisbee. Thought “but the pedals will keep my feet roughly where they need to be”.

Feel much better, though I’ve just had my first relapse in a while, and have gone from finding 100kms a day straightforward enough (albeit at a sedate 15-20kph) to finding 10-15 hard work. On the other hand, there was a point a couple of weeks ago when I struggled to walk from my office desk to where my bike was locked up, but could still do the 2-3 miles home without too much trouble.

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I find that cycling is the one thing I can do without any real problems although it is an indoor bike I use.

If I walk round the corner to Tescos for a small amount of shopping it drains me completely and I`m good for nothing. Where as if I go on the bike I can cycle almost flat out all day long and feel good afterwards. WHY?

I have been told that I switch off when cycling and I`m not over thinking like I am when shopping.

Whatever it is, cycling is good exercise for me and while I can I will continue with it.

Image result for cycliing gif

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Pretty much in wheelchair most of the time now.

At one time I was a keen, but not too serious a cyclist. After the MS got a real hold on me, balance issues ruled out proper cycling, so I got a static bike and used to watch the football on the TV as opposed to watching the world go by.

Last year, I struggled to do anything on the bike at all. Earlier this year though, l was able to get back on the bike. Initially I could only do 3 minutes at a time, now I’m up to 7 minutes. Slowly but surely building things up…

derek

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I’m a pretty keen (mountain) biker. A couple of years ago I did something called the transcambrian way. It’s 100 miles offroad across the middle of Wales, it’s meant to be a 3 days ride and we did it in 1. I don’t think I could even do it in 3 anymore! I still ride 3 or 4 times a week but I ride an e-assist bike and I’ve started to not ride days back to back too often. I occasionally ride a normal bike but I’ve not yet hit the point where I can accept that I can’t ride fast so it really frustrates me, both up and downhill. If I push too hard my legs become quite shakey and the power just isnt there anymore. Interesting to read some similar experiences. I’m also following the OMS diet, I figure it can’t hurt…

I have good days and bad days even on the ebike, over the weekend I did a couple of rides where my balance was just a bit off which was annoying but Monday night had a great ride! Compared to some of the stories above I know that I’m lucky that I can get out as much as I do but it doesn’t really help to make me feel any better some days!

I find biking is a lot easier than walking, I guess it’s just lower impact so less strain on the legs.

Took it up 5 years ago (I was diagnosed 10 years back) after feeling slow and lethargic having had to give up running and ultimate frisbee

Snap! Used to really like playing ultimate but it’s tricky when you were a D/long player but lose the ability to run fast!

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Had MS for a while, big decline this year. I ride a recumbent trike. Yeah, I know, not a bike, but it is close. Left leg is very weak, and I worry about getting “lopsided” I guess. I actually do not know if it is time in the saddle or distance that gets me akimbo. I can go 15 miles with not a lot of stops or cruise for 7 and feel completely wiped. I think it is demylenization that gets me. Anything I can do? Besides taking excedrin before every ride? Seriously last year was so much better, but the season is young here.

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I took up cycling after my MS diagnosis to try to keep fit and keep moving.

I have a small electric folding bike, kept to rural paths to start as I fell off a few times, but my balance has improved.

It’s very good for my outlook and just clearing the mind, I can cycle away all my worries.

It was expensive but I think it was a worth while investment, I now have a part time job.

Cycling has helped my energy levels, there are some days I can’t do it, but I get out when I can.

Great now the warm weather is here

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hi I have ppms (2 years dx) and still try and cycle off-road when it’s not raining! I went 2miles at 13kph lastweek but it was very windy so could go quicker and further. The biggest problem was muscle fatigue in my legs and getting off the bike but once on not too bad.