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Not sure this will get any traction but thought it could be interesting/informational and help with awareness. Posted in bike forum to try get a more riding slant to it but i will try answer anything.
I'm a mountain biker who was diagnosed with multiple sclerosis in 2012. Ask me anything.
I've a friend with MS who's recently started using a Moli suit and is seeing some improvements to his quality of life.
Is it something you're aware of?
I guess how badly the MS has impacted you might affect whether you're looking at treatments like that, but it would have been interesting to know whether it would have delayed (prevented!?) the severity of his symptoms if he'd had access to it earlier.
What type do you have?
What types are there?
How do each of the different types present?
Hey chvck, fellow mountain biking MSer here. Diagnosed in 2012 as well. How is the MS impacting your riding these days? I'm still riding but rides are short and e-assited and starting off can be a wobbly affair (with too many comedy falls), I can ride better than I can walk though and often use a wheelchair to get about. Been experimenting with handbikes and recumbant trikes but still prefer two wheels.
If anyone is heading to the Dukes Weekender cheer me on as I will be doing it on a handbike this year 🙂
I’ve a friend with MS who’s recently started using a Moli suit and is seeing some improvements to his quality of life.
Is it something you’re aware of?
Never heard of that before, looks interesting. Do you know the specific symptoms that he's using it to aid with? It looks like it's designed to help with spasticity which is something that I do get a bit but don't *think* it's a big issue for me.
What type do you have?
Relapsing remitting. I was activity free (no new lesions) for a couple of years but this year's yearly scan has put me back into highly active category - awaiting new medication.
What types are there?
I *think* there are 3:
- Relapsing remitting - you get "replapses" where a visible symptom will happen (like losing the abilty to lift one of your feet) but the symptom will recover to some extent after some time. However, there can also on-going underlying activity which isn't visible.
- Secondary progressive - this is what relapsing remitting can evolve into. At this point disability just steadily worsens and symptoms do not recover.
- Primary progressive - I don't know a lot about this type. My understanding is that it's similar to secondary progressive but without the relapsing remitting phase coming first.
How do each of the different types present?
As far as I'm aware symptoms can be the same across the types. The main differences being that 2 and 3 does not have any recovery of symptoms when they occur, things just get worse. The actual symptoms themselves vary from person to person and can range from things like sensory issues to loss of use of motor control, as well as cognitive decline (which tbh probably scares me more). If it involves nerves then it seems that MS can screw with it.
Andy McKenna has a very good FB group for riders with MS...
Stoked on MS
How is the MS impacting your riding these days? I’m still riding but rides are short and e-assited and starting off can be a wobbly affair (with too many comedy falls), I can ride better than I can walk though and often use a wheelchair to get about. Been experimenting with handbikes and recumbant trikes but still prefer two wheels.
Good to hear that you are still getting out however you can. My riding is also better than my walking. I still ride a normal bike but do also have an e-bike. I'm riding the e-bike more now because it hurts way less. Riding the normal bike really hurts on climbs but I like hills and am stubborn so I ride both bikes the same way, featuring lots of hills... I'm also pretty wobbly, especially in the heat. Even on the ebike the heat can turn me into a wobbly mess, which is super fun when riding steep scary stuff... I also fall off (usually going upill) a lot, and ride clipped in so I'm well practised at falling down the sides of hills.
If anyone is heading to the Dukes Weekender cheer me on as I will be doing it on a handbike this year
There's a group local to me - https://empoweredpeople.co.uk/ who have a variety of modified bikes and bike trains, who do quite big rides together. I keep meaning to get involved in some form but haven't quite managed to yet.
Was also going to ask if you were linked in with Andy McKenna, he’s a top guy, I have known him for years
Was also going to ask if you were linked in with Andy McKenna, he’s a top guy, I have known him for years
I've watched some of his videos, and follow on instagram, but never met (or interacted at all with) him. I see quite a few of the issues I have in his videos too.
Noted for later.
+1 for trying a Mollii suit. My son has CP and started using one last year. In the initial assessment they noted his symptoms and tailored the electrodes where they thought the best impact would be.
It didn’t have a major effect on his leg & arm control but his speech really improved so at a follow up session they tweaked it to concentrate on that aspect.
Had a staff member diagnosed with MS - she did oxygen therapy (?). Basically sat in a vessel with higher oxygen content and possibly higher pressure. She rated it.
It didn’t have a major effect on his leg & arm control but his speech really improved so at a follow up session they tweaked it to concentrate on that aspect.
That's really interesting that his speech improved, I wonder how that works.
When will the weather improve?
At some point in the future.
Anyone taking my medicine? (kesimpta). If so, I hope it keeps you riding.
This is my friend's blog about his experiences with his Mollii suit.
I'm not 100% familiar with what he's going through but it def seems spasticity related.
https://rorymarriott.com/molliisuit/
He is very active in parkrun circles and I've seen him gradually go from organiser, marshall and runner, to just organiser, walker and marshall, to wheel chair attendee to struggling to attend at all.
The vids in the blog show the differences in his ability, doing various tasks, before and after using the suit.
Anyone taking my medicine? (kesimpta). If so, I hope it keeps you riding.
I've been approved, just waiting on all the various stages of paperwork. Hopefully actually start end of August.
This is my friend’s blog about his experiences with his Mollii suit.
Thanks for sharing, will take a look.
Hi @chvck I work for a charity that helps disabled people get into the outdoors; we have a load of hand cycles, recumbent pedal cycles etc and we focus on off-road activities if it ever sounds of interest. We operate out of Leeds Urban Bike Park if that's anywhere near you. We are on Facebook (Experience Community) - I believe there will be an article in the mag soon about our Dirty Reiver trip.
Hi @chvck I work for a charity that helps disabled people get into the outdoors; we have a load of hand cycles, recumbent pedal cycles etc and we focus on off-road activities if it ever sounds of interest. We operate out of Leeds Urban Bike Park if that’s anywhere near you. We are on Facebook (Experience Community) – I believe there will be an article in the mag soon about our Dirty Reiver trip.
Funnily enough, my wife who has MS was at LUBP for a session with who I assume was you guys a few weeks back - said her previous riding experience actually helped her!
MS is shit - Jo was diagnosed about 12 years ago following a miscarriage which left her left leg feeling numb. Various tests etc and the diagnosis of RR MS was given to her over the phone whilst she was at work, between teaching lessons... nice! The RR diagnosis was soon changed to PP after the initial ups and downs just became downs. She now can't walk without a stick and even with a stick struggles to go further than a few hundred metres at snails pace so a scooter or wheelchair is normally used when we're out and about.
Anyone taking my medicine? (kesimpta). If so, I hope it keeps you riding.
Just thought I'd drop in an update for @TiRed - I've done 4 injections now, with my fifth next week. The first one was pretty rough but others have been fine. As a medication it's not as low effort as Mavenclad but certainly less effort than others I've been on (betaferon and tecfidera). MRI scans will tell us how well it's working... Think I have one in a few months time.
Would you rather fight one bear-sized duck or ten duck-sized bears?
Would you rather fight one bear-sized duck or ten duck-sized bears?
I rather not, no.
@chvck - I must admit that the majority of my knowledge on MS comes from the West Wing and President Jeb Bartlett. How accurate was the portrayal if you've seen it?
I must admit that the majority of my knowledge on MS comes from the West Wing and President Jeb Bartlett. How accurate was the portrayal if you’ve seen it?
I've not seen it so can't really comment. I did just see that the president of the MS society thought that they did a good job so you'd hope it's fairly accurate for RRMS, that said it affects everyone differently and one person's experience may not mirror another's.
Did you get in touch with Empowered People? I used to live near the guy who set it up and group rides were great. We went to the Isle of Man a few years ago. It was glorious. It also turned me into a passionate advocate for accessible cycling infrastructure. So many people can ride more easily than they can walk (not just MS) and cycleways should be properly joined up and lovely to trike, bike and wheel (I’ve not succeeded yet but I keep trying).
My brother has been on Briumvi for the past few years after taking part in the trial.
Taking the infusion is no fun, but it's certainly helped keep him from declining at the rate he was previously.
It's helped keep him riding, even if it means ebikes only, but his passion is motorcycles which he can still enjoy.
Just thought I’d drop in an update for @TiRed – I’ve done 4 injections now, with my fifth next week. The first one was pretty rough but others have been fine
Thanks for the update. I hope it has the desired effect and your MRI shows no new lesions. I spent two years arguing why we should test this drug via self-injection and eventually got my way. Briumvi works the same way, as does Ocrevus, but the difference is in the dose, frequency of dosing and need for an IV infusion.
Did you get in touch with Empowered People?
I live very close to, and occasionally ride with, one of the main guys. I've never actually got involved though, always on my todo list.
What do you make of the OMS Programme?<br />
https://overcomingms.org//p >
Followed it strictly for 6 months and it didn't do a lot for me other than make life more difficult. I still loosely follow some bits of it, and I think that a healthy diet and exercise is pretty beneficial to anyone really.
Briumvi works the same way, as does Ocrevus, but the difference is in the dose, frequency of dosing and need for an IV infusion.
I was given the choice of Ocrevus or Kesimpta and I chose Kesimpta because I wouldn't need to keep going into hospital for an IV - so thanks for pushing for that 🙂