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!

Sticking at it

I plucked up the courage to go down to my allotment the other day.

The first proper visit of the year is always a bit daunting. I can see the allotment as it’s just behind where I live, so I know that my plot has spent a number of days recently under a foot or so of water. It’s also on very heavy clay-based soil so I know from experience that it’s going to be very hard work digging it all over.

There’s also that hurdle of making passing conversation with the stuck-in-their-ways, Daily-Mail-reading, brexit-voting old men down there, most of whom are at least 20 years my senior (and I’m in my late 40s).

But I was in the mood for some fresh air and I thought I’d better check things over.

The first conversation went something like this, with someone I’ll call ‘Dick’ as he was leaving.

“Ay up Dave, You alright?”

“Not bad Dick, you OK?”

“Aye, not bad. You look a lot better than you did the other day though.”

“Why’s that then?”

“You were just leaving the GP surgery. You looked awful – you were walking with a stick!”

I’d been to pick up a repeat prescription for my restless legs (Rotigotine – been working wonders), and yes – I had walked there and back with a stick, so I guess I must have looked truly terrible… like Frankenstein’s monster or a daylight Nosferatu, no doubt.

Dick’s rather insensitive comment ranks alongside a former manager’s ‘little buggy’ comment and places them firmly on a hit list of people to target on the day I finally crack.

At least he doesn’t know I also piss through a straw, I guess.

I’ve been walking with a stick for a few weeks now, mainly at night after the rest of the family are in bed, just to help get my step-count up and I’ve only been using it for distances of about half a mile or more. The truth is, I need to exercise and I find it impossible to run these days, to the extent that I genuinely worry about traffic and the amount of time I have to cross a road.

I stay seated for a good deal of the day because I work in an office. Also, it’s hard to maintain an active lifestyle when your legs let you down after a couple of miles, so walking with a stick has become a necessity.

And I’m glad of it. Just this last week (apart from one bad day) I hit an average of 10,000 steps a day and the stick has certainly helped me get there.

I see it as the equivalent of holding onto the handrail while walking along the deck of a moving ship. It just provides that little bit of extra balance and reassurance and, perhaps more importantly, tells me I have no excuse not to go out for a walk round the block.

It also sends out a message: ‘I’m not quite as mobile as you, so please make allowances.’

It also says: ‘I’m disabled, so I’m unlikely to be an attacker or an assassin, but if you fancy your chances, I can wield this sturdy weapon, ninja-like to defend myself.’

So it’s very much a psychological support as well as a physical one.

I’ve also been seeing a neurophysiotherapist again (more of that later) and she thinks I’m doing the right thing by setting and hitting step-targets and recognises the stick as an essential tool to achieve them. I’m quite a brisk walker (for the first mile and a half, anyway) so it’s nice to get some fresh air and exercise every day before I hit the sack.

Of course, the combination of fresh air and exercise late in the evening also ensures that I’m pretty much comatose by the time my head hits the pillow – an added bonus for someone who has struggled with insomnia for a lot of their adult life.

So I checked out my allotment plot, retrieved my plastic chairs that had blown off in a winter gale, swept out my greenhouse, emptied some scraps into the compost and checked that my shed hadn’t been flooded (it hadn’t). And all of a sudden, things looked rosier and more managable. Yes, I’ll have to dig it all over, but I’ll take a day off with a flask of hot coffee and my headphones in and I’ll make a start.

I also had a good long chat with the bloke on the next plot to mine who I’m friendly with. He’d fixed my strimmer for me over winter, and I just felt generally more positive by the end of it. He told me that Dick – the gossip – had mentioned the stick, so I explained the situation and he seemed to understand.

I no longer care about how I look, but one reason I had rolled out the stick’s use after dark was that I was a bit self-conscious to start with, like I might be if I’d started wearing glasses perhaps. With the stick helping me build up some stamina and the physio working on my balance and core-strength, my main thoughts for this season are now about what I’m going to grow, rather than what I can manage to do.