Ps, I’m going to borrow your superannuationary,I think it’s very cool.
My Dad had a Minolta SLR but I can’t remember which one. He was a bit of a hill walker and used to lug the camera plus a couple of lenses up the Lake District hills and Scottish Munros. Think he did his last Munro on his 75th (or possibly even 80th) birthday but by then had given up on carrying the extra weight of an SLR and Lenses ( add on water and food for the day and the weight soon mounts up).
I miss going to watch football and rugby, all the shouting, cheering, singing, expletives!
How do you manage to maintain the energy to walk your dog? After 20 metres, the dog would have to walk itself, if it was me.
I think if I returned to my workplace choir, I’d feel I could jump straight back in work mode there. I suppose if I did that though, I’d only be coasting:skateboard: along and end up again more off-sick (hospital appointments and admissions) than working.
JP
I’ve got a wheelchair with a motorised front wheel. It goes 20km/h. The dog has never seen me walk more than 50m but he loves chasing me in my chair.
I only walk using a rollator now. I still walk when I’m dreaming.
Do you do any exercise to keep yourself walking? I’m rubbish at doing exercises.
I’ve been to see my local football team and they such disabled people front row. People are generally very helpful. Especially airports, not that I’ve been to one for a while.
I do single step-ups at home for my morning cardio exercise, used to do a 100 and be knackered for the rest of the day but now only 50, less is more is sensible.
My football club puts wheelchair users up back row and rugby club puts them up in the gods (you take the lift up there [not compatible with fire safety order:fire: imo]), the view is quite good though. 
I’ve not been away on holiday in years tbf, tbh if I can’t get there under under my own steam🚂 like my footy/rugby then I’d rather not go imho, I probably wouldn’t enjoy the experience.
JP
That sounds crazy, sticking you up in the gods. For all kind of reasons.
I don’t know if my last message was posted, I was saying that I ‘walk’ my dog with my powered wheelchair/trike. It goes very fast - 20km/h. I find it fun.
I haven’t been abroad for some years, I’m more inclined to go on a long train journey across Europe I think.
I’m you bother seeing a neurologist/do you have a good one? There’s not a lot they can do, but they get very well paid for it.
I’m thinking your reply was intended for @muchthesamemuchness ?
You’re absolutely right! Sorry about that. I hope your weekends going well.
I’ve had multiple sclerosis more than half my life and two of my neurologists have already retired, that’s how long I’ve had this wretched disease.
I’m going to be seeing my current neurologist more just for check-ups, now I’ve elected to come off DMTs for good probably, in terms of treatment that is what they offer but it’s the pharmaceuticals who are handsomely paid, DMDs are really a boon for them.
Have you been in dmds for a while? I’m taking Siponimod for spms, been on it for 3 months. I’m sure my neurologist gets a good cut from it.
This guy sound’s interesting:
I reckon that might be 5 years away.
He seems to confirm that long term dmds have little effect on disability levels over time. It does seem weird to knock the immune system out.
It probably fair to say that pharma-funded conferences to which neurologists are invited are more likely to be in Bali than in Bootle (with apologies to friends from Bootle) but I don’t believe that doctors over here paid to prescribe this over that by the drug manufacturers. Happy to have my illusions shattered if anyone knows better.
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I’ve been on different DMDs for 15 years now, the theory is plausible but it’s given me more problems than just the multiple sclerosis; ITP blood disorder, Graves’ disease and an immune system knocked for 
is just too much.
DMTs probably do have some effect, but as MS is a degenerative disease with no cure yet, it doesn’t surprise me disability will get worse over time.
That’s an interesting video:arrow_up:
I know having RRMS, that’s what it’s like having steroids to help ease the occasional heavy relapse, the holy trinity 3 doses over 3 days then you’re back up and running.
I can usually ride:carousel_horse: out a light relapse/flare-up, but not when it completely floors me.
JP
I’m pretty sure you are right and that any Dr prescribing one drug of any sort for any disease because he had received payment from the manufacturer would face being struck off.
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Just jumping in on the chat. I’ve been on Avonex for about 18 years. Not had any problems with it - except for feeling rubbish for 1-2 days after injecting.
I’ve not had any new lesions in my brain and no new symptoms. Bit by bit however, old symptoms are getting worse. Coincidentally I was talking with my MS Nurse about all this a few weeks back and in particular about lesions and worsening symptoms. Interestingly, although the term ‘secondary progressive’ wasn’t used she did say that my symptoms- disability will slowly get worse. She also made a point about continuing with the Avonex because even though I haven’t had any new lesions, they can develop at any time for years and years after diagnosis ( Like all DMTs, Avonex reduces the number of new lesions-relapses and I most definitely don’t want any new lesions- symptoms so I’m most definitely going to continue with Avonex or maybe a more effective one).
I will also be hoping and praying to the Universe that someone finds a way of putting out the smouldering around existing old lesions. Plus of course , that sometime not far away, we get remyelination treatments
I’m a little puzzled by your comment about DMTs not making any difference to progression of disability? My perhaps optimistic view and understanding is that relapses and associated new lesions are potentially going to affect I.e begin to destroy new parts of my brain which of course means that what ever functions that part controls are going to be ‘disabled’.
In my case it’s my right leg and to a lesser extent right arm that are affected. Damage to the parts of my brain or spinal chord that control my left side would be a total nightmare 
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That makes sense if you’ve been on dmds for so long. They probably did their job in the early days but it sounds like the time to stop. And you’ve probably got to know yourself and this ridiculous disease pretty well?!
I don’t know how long I’ll continue with mine, but it won’t take much to make me stop.
It’s a freakin’ boring subject to have to talk about, but it’s kinda good as well to talk to someone who gets it. This rain doesn’t help, we’ve had it for weeks in stroud. I miss Spain!
DMDs have kept me on my feet for the past 25 years. I do not think that I would be on my feet without them: my MS was aggressive from the start and things were going downhill fast. My personal experience is that they can make a life-changing difference. I cannot speak to the technical literature.
Tbh I had more MS relapses/flare-ups being on DMDs than not being on any whatsoever. Yeah you’re right, it’s time for me to stop being a guinea-pig, for those medicines now. 
Oh mate, you sure are missing all that vitamin D by swapping España 
for Blighty 
. 
I’m happy DMDs worked well for you, @alison100
Idk but I’m not sure how much of an effect they had on me, there has to be alternative treatments for MS other than DMTs, maybe I’ll go back to Bowen technique which worked well for me 20+ years ago and this dude too apparently. 
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Even stroud has sun today!
The dmds seem to be working for me at the moment, no flare ups.
But I don’t know how I feel about knocking out the immune system long term. But I’m off for a blood test to see how they’re affecting me.
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Which one are you on, Tom?
Knocking out the immune system was the last straw for me.
A bit macabre sorry, you won’t die of MS, you’ll die of something else; maybe natural causes, I had my covid + flu jabs this morning. 
Yes, it is a sunshine vitamin day today, hooray!
