Aug 05 2017
10 Comments
Emotions

A Shadow Of My Former Self

mirrorI had an illuminating conversation with a fellow person with MS today and it made me think.

We were talking about what our ‘other’ selves would be doing at this point, without MS in our lives.

Number one on my list is the death of courage.

I was in a beautiful hotel in mid-Wales for a meeting but getting there had been a carefully-crafted expedition. On my own. For someone who has had The Boss pick me up every day for work since January with a cup of coffee and a chocolate croissant,  this was, well, big. Huge.

I drove there for a meeting all on my own, with only my nagging sat-nav and a can of Red Bull for company. I was utterly petrified. To put this in perspective, I used to think nothing of finishing work in Austria and driving to Prague for dinner.

As I wended my way around the winding roads, I reflected upon my Other Life. I would have gone to work, no need for day off to prepare. I’d hop in the car with tousled wet hair fresh from a shower, perhaps wearing a jaunty striped t-shirt with a scarf knotted just so. I would toss a few essentials in a canvas bag and leave.

In my other life, the one that I forked away from back in 2011, I would be a fully-qualified social worker. I would be helping people. I would also have matching cushions and dinner parties with interesting people, where I would serve kitchen suppers involving pomegranate seeds and an Indonesian paste.

My shadow self stalks me. Yet, isn’t that the same for everyone, MS or not? Don’t we all wonder what we could/should/would have done; it’s merely that MS throws this in to sharp relief?

Maybe I should concentrate on that other fork in the road, the one that led me here? Ok, so I may not have matching cushions and a satisfying career, but would I have grown as a person? Probably not.

Without MS, I would not have that job where I could be here every single day that The Teenager got back from school. I would not have been witness to the tiniest moments that are the biggest in a Teenager’s life.

Without MS, I would not have pursued a childhood dream of writing. It seemed silly, something unimportant and indulgent. MS forced my hand.

Without MS, I would not have experienced the fragility of life until I was a lot older, and perhaps it would have been too late? And the regrets would have been more powerful?

Me and my alternate shadow co-exist. We have to. As someone once said to me:

The darker the shadow, the stronger the light shining nearby.

Aug 01 2017
6 Comments
Emotions

Just The One Candle, Ta …

ancientYep, it’s that time of the year again when I’m staring down a Saga Holiday (see the world! make new friends! we have doctors and defibrillators on board!).

Obviously, I’m not quite there yet, but it’s getting ever closer.

However, the issue of my age was put into startling perspective when The Teenager, whilst hanging off the fridge one day, asked me how old I was when I had him.

’26’.

‘Wow! Like, that’s …  like, wow … old, yeah?’.

‘Well, ok, but if you’d behaved yourself and arrived on time, I would have been 25, so ner’.

He was due the day after my birthday but hung around for another week, dozing off every time the midwife wanted a poke around.

‘Hmm, he’s big, isn’t he? You look a little uncomfortable?’

‘Yeah’.

Almost 18 years later, The Teenager was aghast. ‘So, in, like 26 years time, you’ll be, like, 70? If we count your next birthday, which is like, a couple of weeks away? Or 69 if we don’t. To be fair. But, like, wow‘.

When you’re pregnant, they tell you kids will keep you young.

They were wrong.

As The Teenager loves music, I have to play along to ‘Guess The Year’. I’m always a decade or so out. Same for films. And major news stories. Is this what happens in your 40’s?

It’s strange because I seem to exist in a time warp. The Teenager plays almost exactly the same music I did at his age – Oasis, The Verve, The Beatles. He watches the same films. He wears the same clothes as my old boyfriends. And me, apart from the mirrored skirts and stripy tights with Doc Martins.

In fairness, I will grow old disgracefully and fully intend to embrace my hastening years and wear lots of black flowing garments accessorised with large beads and silver bracelets. I envisage giving readings of my eighth bestselling book to hoards of said Teenagers who will be rapt as they listen to me espouse words of wisdom.

In real life? I will no doubt reach 69/70 in the blink of an eye, much like my first 26 years, so I will do my utmost to cram every experience possible into such a slim window.

MS-willing …

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Jul 23 2017
4 Comments
Symptoms and Treatment

Brain Training

brainI recently had a fascinating conversation with Dr. Henry Mahnke, CEO of  Posit Science regarding one of my biggest bugbears, MS cognitive problems. 

Could it be possible to train our brains and reduce cognitive symptoms? Read on …

A recent study showed that a specific kind of computerized brain training could be helpful to MS patients.

Impairment of various cognitive functions is reported to affect up to 70 percent of people with MS.

Deficits in speed of processing are considered a signature cognitive symptom of MS. Currently, there is no generally recommended method of treatment.

The study was conducted by researchers at the NYU Langone Medical Center’s MS Comprehensive Care Unit.

They enrolled 135 patients at Stony Brook Medicine, who were randomly assigned to either a brain-exercise intervention group or a computer-games active comparison group.

Both groups were asked to train an hour a day, five days a week, for 12 weeks (a total of 60 hours). Researchers reported high compliance in both groups (games group averaged 57 hours and brain-training group averaged 38).

Both groups improved on the overall cognitive measure. However, despite training about one-third fewer hours, the brain-training group did significantly better than the games group, with nearly three times the gain. The brain-training group had about a 29 percent gain on the cognitive measure.

In addition to the objective neuropsychological battery, patients were asked, as a secondary measure, to self-assess their experience of improvement in cognition. Nearly 57 percent of the brain-training group reported experiencing improvement, as compared to 31 percent in the games group.

The brain exercises used in the study are part of the commercially-available BrainHQ platform and app.

Unlike traditional strategy-based cognitive remediation, BrainHQ is designed to harness the brain’s plasticity – its ability to change chemically, structurally and functionally in response to sensory and other inputs. Most BrainHQ exercises progressively challenge attention and speed of processing, as foundational building blocks of higher brain function (e,g., memory, planning, reasoning).

In fact, the researchers selected BrainHQ for the study because it emphasizes speed of processing.

An additional purpose of the study was to determine if low-cost, self-administered training can work.

“This trial demonstrates that computer-based cognitive remediation accessed from home can be effective in improving cognitive symptoms for individuals with MS,” said Dr. Leigh Charvet, the study’s lead author.

The study was published in PLOS ONE Neurology. It is believed to be the largest study among MS patients to date, measuring impact of brain training on cognition.

Dr. Henry Mahncke, who leads the BrainHQ team, said these results contribute to plans to bring digital therapies targeting specific indications to market, after obtaining appropriate regulatory approvals.

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Jul 20 2017
8 Comments
Emotions

Stupid Is As Stupid Does …

stupidI adore learning.

I was never a gifted academic at school – good grades coming only after a hard slog – but the desire to learn was always there.

Perhaps it is a longing to discover more of the world than is immediately apparent, to get under its skin?

I’m questioning this as I’ve been encouraged to take a PhD, since completing my Masters. Even writing these words seems embarrassing. My second degree, the one that, pre-MS, was going to spring-board me into a promising career as The Teenager would then be out of child-care, ground to an abrupt halt as soon as the first symptoms appeared. After almost ten years of working in a low-paid, part-time job to be available for him, it was a bitter pill.

A Doctorate is an idle, long-held dream. It was something other people did, the clever ones. Not the ones who turned down a University place at 18 to move to Austria instead. If I’d done the former, I would now be a Russian-German translator, and who knows how my life would have turned out?

To get to the point that I could even think about the next step is nothing short of miraculous, and obviously I have the incredible MS treatments I’ve had to thank for keeping my MS progression at bay. But I would like to think it’s also due in some part to my sheer obstinacy. The days, weeks, months I spent with huge sheets of paper dotted around the house filled with random jottings and essay outlines. The fluttering waves of post-it notes on my desk. My tears when my brain refused to comply.

And yes, I tried to give up, many times. It all seemed impossible. Who was I trying to kid? But where does this obstinacy come from? Well, a very unlikely source.

Years ago, a partner of mine (who will remain anonymous although if he is reading this, he will know exactly who he is), told me over and over again how stupid I was. I had no degree back then, just years of experience working abroad and three languages under my belt. He had a degree and a post-grad qualification.

This became quite an issue, with every argument prefaced with, ‘well, as I have a degree, I feel more qualified to say …’. In frustration I challenged us both to MENSA tests. And what do you know, my score was higher. But in a way, the damage had been done. I believed I was stupid (it had been said often enough). And for years after, that voice followed me. Until MS came along and his voice was drowned out.

MS could have been the final nail in the coffin, and it would at least have been an excellent excuse.

But I have other ideas …

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Jul 19 2017
2 Comments
Symptoms and Treatment

All Clear On The Campath Front

all clearIf you’ve had a relapse, such as my epic one earlier this year, you almost want it to prove itself.

Mind you, that proof would take the form of lesions on the brain, which is definitely not a good thing.

So I was torn when I had my last MRI. Having just re-entered the real world after being locked in an abysmal cycle of worsening symptoms for over five months, I was enjoying my freedom.

The thought of having to factor in another course of Campath in amongst getting The Teenager University-ready was something my brain just couldn’t compute.

On the other hand, if the scan showed up nothing, what on earth was going on? Is this it? Can I expect more of these epic MS smacks-around-the-face? Would this be my life from now on?

Anyway, the excellent news is, my scan is clear, and that is all that matters. No disease progression. No need for further treatment at this stage. My brain is just fine.

After saying, ‘thank you, thank you, OMG, thank you’ over and over again to my MS nurse who imparted this wondrous news, I then asked, ‘erm, so what do I do now?’

Well, nothing. It’s a kind of waiting game. The relapses I’m experiencing are normal for my type of MS. And there you have it, MS in a nutshell. You just don’t know. You’ll never know, from one day to the next, how it’s going to hit you. Every day is a lucky-dip.

Take this week. On Monday, I was awake. Fully awake. No yawns, not much pain, minimal brain fog. Apart from the usual twinges and walking in to walls, I was fine. On Tuesday, the nerves in my legs were on fire. I fell asleep after work and my hands went numb with alarming frequency. I tripped over in the kitchen, scattering chopped rosemary all over the floor (can’t blame the cat this time).

I’m beyond relieved I don’t need treatment this year; every day I wake up and it’s like remembering the glorious news all over again. The absolute relief is immense. Yet the fear hasn’t receded.

But hey, this is life. As The Teenager quoted to me earlier from John Lennon, as we were waiting for him to have his meningitis jab, ‘Everything will be okay in the end. If it’s not okay, it’s not the end’.

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