OK so I’ve got MS, it sucks but since posting this life has moved on. I am significantly disabled, with a long list of less than pleasant issues associated with my MS, but I can ride a bike, not like I could, but I can ride, both on a mtb, and on the darkside that is the road.

The fitness my cycling gives me is a great help, like the difference between being able to get round a supermarket and having to sit down for 10 minutes in the sweetie aisle before I can walk back to the car… and in terms of self worth its amazing.

On a mtb I’m OK, struggle on steep technical climbs, and downhill I can only cope with a certain level of vibration (and not enough!) before I lose my understanding of where I am in the landscape, but oh how wonderful does it feel in balance! On my feet I’m always in a progressive state of imbalance, but on my bike I just know where I am, awesome.

I want my life to be defined by what I can do, not what I can’t, and to give me a reason, and to prove to myself that I can live with this debilitating sod of a condition this summer I’m going to ride a bike from the Pen-y-Gwryd in my beloved N.Wales to the Pyrenees, along the way raising some cash for the Mstrust and some local French charities.
More than the money I want to inspire people to do cool stuff with their lives, so come and join us for part of the ride, a couple of days through Wales, somewhere in southern England or even the what I hope will be an amazing last 5 days from here in the South of France to the 2000m Col de Pailhers in the Pyrenees, all in the first full week of August.

More info and route stuff on our fb page, please feel free to like and share or email at jusandrhi at gmail or even doate at my justgiving page

There is a very good Facebook page for mtb riders and ms, surprising as it’s got a well known mtb guide involved too…

As you said, it’s what you can do that’s important…

Stoked on MS is what your looking for…

Amazing post, genuinely inspiring stuff. I’ll be following your progress with great interest. More than happy to share on Facebook and I may even be able to join you somewhere as you pass through the south of England. Good luck! 🙂

Chapeau Sir. It’s over six years since I turned a pedal off road. Still get the odd pang but living on the edge of the Lake District will do that. Donation made from a fellow sufferer. Good luck.

Fair play to you, and good luck!

Will donate later. My wife suffers from ms, as does a close friend and it’s a bastard of a condition so cycling full stop is a massive achievement.

Thanks guys, especially Harris for the donation, and hope to meet up with some of you on the road

This thread disappeared almost without trace yesterday, so I’d like to give it a bump. I know that there are some among us who’s lives are affected by MS. Thanks for the comment slowmedown. Stay upright.

Great post! Good idea and worth some cash.

You sir are an inspiration. I’ll be donating and all the best for your ride!

Thanks for the bump Harris. I saw this yesterday, but I was on my phone so resolved to donate when I got back on the computer, then forgot all about it of course. Job done now though. Chapeau slowmedown.

Fair play OP. Donated.

Good luck, is your route down sarf planned yet?

Sorry to hear what life has served you but good luck with the challenges ahead.
You’re a great inspiration.

Anyone got a link to the Facebook page for MTBers with MS that rickmiester mentioned?

Massive, massive thanks to those who have donated,very humbling indeed.

The route is a work in progress, but it is here the South of England is the part of the route that I have the least prior knowledge of, any thoughts would indeed be welcome, I’d like to include some of the South downs way, but don’t know which parts are feasable.

Just want to get started now

Awesome. That’s a big ride in anyone’s book.

Can’t see when you’re planning to do the ride? I’m in Haslemere, on the north edge of the South Downs National Park. I’d love to ride a bit with you and help with the route planning where I can. Are the blue bike icons stopovers that you’re joining up?

And what bike are you riding, how much are you carrying, and what kind of route do you want? – as much as possible off road? Preference for smooth bridleways? – just thinking about you comments on how “feasible” the SDW is.

email in profile if you want. Happy to chat if that’ll be useful too.

exciting! Good luck! 😀

Hi, My name is Cy and I also am a MTBer with MS.

I was diagnosed in 2003, got back on a commuter bike in 2008, a mountain bike in 2009 and have been loving it ever since. I ride a lot and race whenever I can. Did the Tweedlove EWS 2 years ago and doing the mini enduro this weekend!

I know what you mean about the balance thing and you’re bang on the money – being on a bike just kinda feels like you know where you are. It’s the point when no matter how shit I feel, it always makes it feel better.

MS is a sh*t and it can get you from every single way possible when you’re least expecting it.

I tip my hat to you mate as keeping going sometimes is really hard – physically, mentally and emotionally.
I found that riding has helped my condition a lot. The fitter I have gotten the better I feel and now don’t take any meds for it. am actually better off of them – they were causing a lot of other problems.

If I can try and join up with you on a bit of the ride, I’d really like to. Keep us posted on the route and I’ll see what I can do 🙂

Good luck dude!

Ned, click on the icons for details of the individual days, we start on July 2nd, we are doing the ride supported, my wife meeting us at the end of each day with our campervan. I know its cheating! While the ride is mostly on the road we will be using sus trans and voie vert where possible. I hope to have 2 bikes available a road, perhaps cx bike and a late eighties Marin Bear valley, so yes fairly smooth bridleways will (unfortunately) be our limit.

Cy, good luck this weekend! I’m very lucky to live in France, I’ve been here for 12years and am fully in ‘the system’ and so there is no issue with prescriptions. I take Gilenya, a simple pill a day, its a big improvement over anything else I’ve had, gives me much greater stability. Unfortunatly it doesn’t do a great deal for the progessive side, but I haven’t had any significant episodes since starting taking it. I would be very honoured if you were able to join us.

@ Slowmedown. I too take Gilenya. It’s served me well since I started taking it in late 2012. Beats sticking a needle in your leg once a week. No more cycling for me these days other than twenty minutes each morning in the shed tapping it out on a spinning bike. It’s obviously not the same as riding Lakeland passes but it’s still great to be turning the legs.
I’ll be following your progress in July.

@ Cy. Good luck on the Enduro.

@ Slowmedown. I too take Gilenya. It’s served me well since I started taking it in late 2012. Beats sticking a needle in your leg once a week. No more cycling for me these days other than twenty minutes each morning in the shed tapping it out on a spinning bike. It’s obviously not the same as riding Lakeland passes but it’s still great to be turning the legs.
I’ll be following your progress in July.

@ Cy. Good luck on the Enduro.

Double post. Doh!

Thanks dudes 🙂 I’m excited about the race!

Gilenya was the last drug I took actually – about 2 years ago but found it made me really tired that during the day I would need an afternoon nap and on rides I would have to stop and take a break. As well as a bunch of other sucky side affects from taking it. As these things sadly do…
So I stopped. It is meant to be the best one out there and I know that the benefits of it are substantially higher than any of the jab options.
It’s cool to hear that it’s working out for you and also for @ Harris too!

Anyone got a link to the Facebook page for MTBers with MS that rickmiester mentioned?

anyone?

@slow and @cy it is certainly a sh.t disease, a good school friend of mine was diagnosed with it in his teens.

Good luck with the adventures, you are both doing more than me and I’m “fully fit” so chapeau. Donation done @slow and I’ll look at the route, from what you’ve said most (all) of the SDW you could ride, nothing too steep, rough or technical up or down I think

Hi Justin,

My wife works for MSIF, a worldwide network/umbrella organisation for MS charities and research bodies, that works to promote global awareness and coordinate research.

I sent her a link to this thread, and she replied:

You could suggest he writes about his story for world ms day… it fits really well with our theme this year which ‘ms doesn’t stop me….’ he can add it to our map as a world ms day event or use the hastags #wmsd16 #worldmsday and #strongerthanms and we will pick it up automatically on our social media feeds and promote it globally as a result.

Also he can post it on the world ms day facebook and twitter sites and it might help his fundraising. But only if he wants to that is! But as you can see from the thread this kind of story really motivates, inspires and encourages others with MS and spreads awareness and understanding as a result. People power! 🙂

http://worldmsday.org/take-part/

I was going to find a way to mail you directly, but figured cy and others might be interested in world ms day too. Its an inspiring collection of people, stories and messages!

my email’s in profile if you want to chat further.

Ned I’ll be in touch.

Had a bit of a couple of weeks my Mother in law and my amazing Aunt have both passed, so myself and the family have been dashing around feeding Ryanair and Easyjet…

I wrote a little blog thing for the MSTrust if you are interested.

Apologies, I wasn’t trying to be obtuse, I think the FB link to the page I mentioned is here.

https://www.facebook.com/groups/170620306630807/