Gloves off

Well, I knew I’d be tempting fate to say that I was feeling fitter and more mobile. It seems that the old MonSter has found a chink in the armour and has left its footprint behind in the form of a few new spots on the MRI.

My neurologist has decided to advise exactly what I wanted him to do which is to nuke the f**ker.

Even though they’re four or five small lesions, he’s decided that because I reported an increase in disability (decreased mobility) at our online meeting last autumn, we should take no prisoners.

He basically handed me a menu and asked what I’d like to try.

So, after a weekend reading the excellent info on the MS Trust website, I ended up talking to one of my MS nurses, about my choice. After about 15 minutes of life-affirming chit chat about music, life, Gideon Coe’s radio show, vinyl collecting and so on, my wife decided it was time to roll her eyes and tap her watch and we addressed the matter at hand.

So, in summary, it’s ocrelizumab that I’m going to go with, aka Ocrevus.

I’m choosing it because it’s one of the most highly effective DMDs available to someone with relapsing remitting MS and although it has its side effects – I’ll be compromising my immune system somewhat – that list is relatively short compared to the other main candidate Alemtuzumab. It’s the usual trick of deciding what’s effective and balancing the advantages against the disadvantages and the likelihoods against the will-never-happens and ocrelizumab tends to float to the surface more often.

There are a few bits and bobs to go through first. My neurologist needs to apply for funding and I need to provide some blood so they can do the usual liver and white cell measurements plus a few new ones such as a thyroid test and then it’s just a matter of getting booked in for the infusions. I’ve had my Covid jabs as well, so that’s a major hurdle over with.

Initially it’s a case of having the meds dripped into my vein over the course of a day and then returning for another session a week later. After this I need topping up every six months or so. And that’s it! No setting reminders on my phone; no room taken up in the fridge by boxes of needles; no worrying about packing for holidays. I’ll just turn up at the hospital on time and have a sit down for a few hours twice a year while I get pumped full of B-cell killing nastiness and Bob’s your uncle. I can even legitimately take it easy for a couple of days afterwards as the initial side-effects apparently take a while to wear off.

So, the potential side effects for me range from the less serious infusion reactions (the team at the hospital can slow down or stop the infusion if they feel it necessary) to the more serious ones involved with what will, after all, be a weakened immune system. I’ll be more prone to infections, particularly of the respiratory tract, for instance, so I’ll have to watch out for any persistent coughs, breathing difficulties and so on.

There’s also a minutely small chance of getting Progressive Multifocal Leukoencephalopathy (PML), a rare brain infection that the MS Trust reassuringly tells me usually leads to death or severe disability. I’ll know what to look out for though. I’ll be looking out for brain-related wrongness, or in other words, symptoms that sound like MS. Nice and easy.

So, there we have it. It’s been a while since I last had my defences breached so I feel reassured that we’re responding quite aggressively, and I also feel reassured that we’re not looking at Secondary Progressive MS which is what I had feared. To find out that there’s new activity on your scan, despite your best efforts at keeping the MonSter at bay, can be so deflating, but a plan of action does give a real confidence boost… Bring it on!

“It’s a miracle!”

I don’t want to tempt fate and I don’t want to count chickens before they’ve hatched or any of that but…

…It seems I can walk again.

Now, this doesn’t mean I’ve been to see some Jim Jones style preacher, and it also doesn’t mean I’ve quaffed some magical elixir derived from a temple in a South American rainforest either.

What I mean is, I can now walk a bit further than I could.

I often go out for a walk before breakfast on weekdays (weekends are for ‘lie-ins’ *). Until last week, I’d tell anyone who asked, that I wasn’t able to walk more than a mile or so before my legs would turn into some sort of high-density jelly; my feet dragging on the ground; getting tangled with my walking stick etc.

Over the last week, I’ve been able to walk (fanfare)… three miles!

Not quite as exciting as an Indiana Jones adventure, but massively exciting for me. I live on the edge of town, so I can now access some countryside, and I’m also achieving my rather modest daily step target of 6,000 steps by 8am.

I’m currently leaving the house at six, wrapped up warm as the sky becomes lighter. I’ll find a footpath across some fields behind my daughters’ secondary school and head off on some farm tracks, the early morning air filled with the sound of woodpigeons and blackbirds, and the gentle rumble of traffic in a town waking up just a few fields away.

It takes me an hour and a half to do three miles, which isn’t that fast compared to the way I used to be, but I’ve been following my physio’s advice by planning a route that takes in as many rest stops as I can find. These rest stops include benches, low walls and grassy hummocks to plonk myself down on, and fence posts to lean against.

I’ll get back home, just as the local dog-walkers are emerging from their front doors. I’ll make a nice pot of tea and pop a couple of slices of toast on while the rest of the house is waking up.

Crucially, I have enough strength and energy to stand and walk within the safe confines of my kitchen whereas before I’d still be lying in a quivering heap on the floor of my porch, struggling to prise the shoes off my feet.

I’m not one hundred per cent certain where this sudden capability has come from. I’ve been worried about my mobility getting worse, and I suspected Secondary Progressive MS might be on the cards, but I had a full brain and spinal MRI the other week and I haven’t heard back from my neurologist yet.

I’ve decided this must be a good sign.

I’m hoping this is just the remission after a relapse. One of those stealth relapses you don’t notice have happened until it’s too late. There will also be an element of my neuro-physio’s advice echoing round my head as I walk.

I’ve always been into walking as my favourite physical activity. Even when I lived in the East End of London I used to knock up a good eight miles some days, while working for Hackney Council, striding between offices and along the canal towpath that used to skirt where I worked.

So I’m not mincing my words when I say that not being able to get out for a good walk has been really distressing over the last couple of years. I’m tentatively hoping I can reassemble the broken shards of this relapse – if that’s what it was – and build on what I can do now. I find I’m now spending slow moments in my working day, planning small extensions to my current route on Google Maps.

You don’t really appreciate what you’ve lost until you lose it, so while the rest of the country is getting their jabs and anticipating the end of the COVID lockdown (I’ve had mine, by the way), I’m struggling to feel anything about it. Instead, I have something precious and delicate; something that could be snapped away from me in an instant; something that seems to be showing some signs of life again, and that’s all I can focus on right now.

* weekends = 7am