A.J. Walker

Multiple Sclerosis etc

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Card Carrying

Last weekend I requested a card from the MS Society which I can use to show people if required that I suffer from MS. That followed the legs fatigue issue the other week. Thought it may come in handy when I am events and need to sit down—or an emergency toilet visit. It came in good time along with a booklet on fatigue. You can print one out from the website but I thought a plastic card would be much better in the long term.

The other reason for getting it is for using the train—especially at this time of the year when they have lots of staff stopping pissed people getting on train platforms. Having an explanation for wobbly legs which isn’t alcohol related could be most useful in December.

Hopefully I won’t need to pull out the card too often, but it’s nice to have one to hand.

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Link to MS Society
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Readily Foldable

Went to the Casino gig on Friday, which was wonderful, but it was marred for me and—hopefully—only me by my damn legs. I stood at the front leaning against the rail for over two hours through the Heavy North and Casino sets and didn’t realise until I went to leave that my legs had suffered from all the standing. My legs just folded under me and I could not get to a fully upright position. Thankfully a couple of local gig buddies recognised an issue and a member of staff came over to get me to an external lift rather than having to negotiate the stairs. I am grateful for the assistance of the 02 staff in doing that (and my buddies for alerting them)—it helped enormously.

Rather than struggle to walk to Queen Square for a bus I opted to get an Uber. A nice guy, Mansoor from Stockport, picked me up and delivered me safely home. Just sitting in the taxi had helped and I was soon going up and down the stairs at home with no issues at all. In summary I know my limits now and will no longer stand for a couple of hours without breaking it up with some seated breaks (even if that is just on the floor). It has happened to me before a couple of times—and they were also at gigs. MS sufferers quite famously do struggle with fatigue, most notably in the legs—and boy is it scary and frustrating that you can’t even stand up and feel you are going to fold onto the floor.

Funnily enough I've another new thing I get now; it's an itch near my right elbow. It's a phantom from nerves either in my head or body and it is well weird not being able to scratch an itch.
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Second Physio Visit

A couple of months or so since my first physio appointment it was time for my second earlier today. It went well. I mean my knees—especially my left one—are a little sore and stiff of course but the physio visit itself was fine.

Turns out my left knee is a bit more mobile than it was and on the measurements both knees could move to a degree classed as normal for people even without osteoarthritis. So maybe the physio I have been doing has actually been doing some good. Who’d have thunk it!?
I’ve been doing the physio a bit ad hoc though, so hopefully if I can arrange myself so that I can do it regularly three times a week or so, rather than ad hoc it’d be even better.

Last time I went to physio it so happened that my movement was better than normal (of course), and today was a little better than normal too. But in the week following my last visit I had a ‘
trick knee’ episode for the first—and so far only—time. That is when the knee out of nowhere just suddenly fails to do its job and I went sprawling. I was fine straight afterwards and it hasn’t happened—or felt like happening—again. It was disconcerting at the time and for a couple of weeks I suffered from a little paranoia that it would reoccur.

The physio said, ‘Yeah, that can happen.’ But there’s nought to do about it, ultimately ‘It is what it is’ I guess.

I told him that I am aware that sometimes when my knee is a bit more sore or stiff than usual I find myself almost tiptoeing on the left leg—that is, not fully straightening it out to avoid the pain. It’s not THAT painful but I guess it is an automatic thing to try and avoid even a little, when you can. But I said I was also conscious that by not walking properly with that leg (fully extending it) then I was weakening the leg by not ‘exercising’ it properly. And that I was fighting the urge to do it when I could.

Anyway, in summary everything I have been doing (or think about doing) is pretty much there and he said that I didn’t need to come to another appointment quite so soon, if I didn’t want to. I was in agreement and said maybe three or even six months (I could always contact them in the meantime if something changes). He wasn’t sure an appointment six months away was possible ‘but give it a go.’ In the end I’ve got one arranged for three months hence. It wont be with the same physio unfortunately (they work on rotation) but I need to continue with the physio (more regularly) and go out on my bike another once or twice a week too. Should be able to do that.
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More Knees Things

Been having problems with my knees for over a year now. I didn’t realise it was that long until I noticed when I had the X-ray done on my left knee (May last year—where does the time go when it’s not around here?). In January I had a week when I needed a walking stick—which thankfully so far has not reoccured. And on Friday I had my first "musculoskeletal" appointment at Fazakerley Hospital: I think this is basically a physio but with a more complicated spelling.

It was a good appointment—if taking about having osteoarthritis is ever a good thing. He showed the X-ray of my knee and pointed out the smaller gap between the bones. Ho hum. He showed me a few exercises to do to build strength in the legs. There is a slight weakness in my left leg but after walking funny for a year that would seem inevitable. But doing these exercises—with one of those resistance band thingymewhatsits—three or four days a week should help the upper leg strength and hips a fair bit and help in reducing the weakness and the pain in the knee joints.

He said a couple of things which helped: I’m apparently “high functioning”. Or perhaps I misheard and I’m just functioning and he thought I was a bit high at the time. He also said my weight was fine and I didn’t need to lose any. Huzzah—he’s on my Christmas card list! I guess lugging casks of beer around has helped on some of the fitness side. It was good that all we talked about was exercises and there was no need to talk in any seriousness about the dreaded knee replacement options. All good.

Trying to show me a page on the computer with the exercises on he found that the pages were “
still” not accessible as someone in accounts hasn’t paid for the software/website. So he ended up trying to write them down (not ideal, sometimes a picture really is worth a thousand words). I should be able to remember them and I guess I’ll be able to find a webpage showing these same exercises too.

He didn’t notice my posterior dislocated shoulder and was quite surprised at that. He gave me a good exercise to help with that in addition to the ones for the legs. I’ve got a second appointment in six weeks or so, let’s see if I can keep up with the exercises. In the meantime if you see me crouching or slightly bent of legs in a shop, at a bar or a bus stop be assured I am just exercising—probably.
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