Tag Archives: multiple sclerosis

The Teenager Is Off To University!

awesomeNever have I been more proud of The Teenager than I am today.

He got his exam results and has secured his place at University.

When MS first raised its ugly head, he had just started out on his high school journey. When I think back to what he had to endure, I could cry.

He witnessed my first proper relapse in all its frightening, bewildering intensity. He saw me lying on the sofa, hour after hour, unable to carry out the most basic tasks. He asked around his friends for lifts to rugby, to football. My friend went in my place to Parent’s Evening.

He knew about the vicious bullying I was experiencing in work, culminating in my dismissal for MS. He heard about the legal proceedings, in amongst worsening relapses. And all the while he was trying to forge his own identity as a Teenager. A hefty burden at the best of times.

It’s always been just me and him, since he was a baby, and I’ve always tried to be independent, fearless and positive. MS changed all that. We both took a huge dip. It knocked us sideways. It took a while (years), but we got through it and we came out stronger.

Regular readers will know him really well – you’ll have heard about our fair share of ups and downs, run-ins and tantrums. I hope you’ve seen though, as I have, how he has grown in to quite an incredible young adult.

I know most parents boast, but if there’s ever a blog post for me to do that, it’s this one. He’s a totally amazing individual, with a real sense of who he is. He’s considerate yet determined. All fears I had that he would internalise the emotions he was experiencing with the MS have been laid to rest. I can only watch in wonder at how he goes out and grabs the world with both hands.

We had many quick text and phone chats this morning about his impending move to Bristol (according to The Teenager, ‘far enough away to be an adult, close enough to be handy’). I’ve been issued strict instructions for Drop-Off Day:

‘Mum, right, you can take me there with all my stuff and help sort my room out. You’ll make it nice?’

‘Of course, dear.’

‘Then I’ll have to say goodbye. You won’t cry, will you?’

‘If I do, I’ll do it in the car, don’t worry’.

‘Good. ‘Cause then I have to go to the kitchen and meet everyone else’.

‘I know. Do you think you’ll need an egg timer?’

‘Muuuuuuuum?! I’ve got a list of stuff to get, like don’t worry’.

‘Ok. How many shower gels do you reckon you’ll need?’

‘Muuuuuuuuuum’.

Today is beautiful – we made it. He made it. And in a way, The Teenager had a far bigger mountain to climb than me. I’d lived my life before MS came. He had it flung at him far too young. But he took it, dealt with it and succeeded despite it.

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The One Where I (Might) Dress Up As A Christmas Tree …

treeHere’s the thing.

I really, really want to fund-raise for MS.

But I don’t want to skydive, fire-walk, be silent for a day, climb a mountain or zip-wire. I’m not brave enough (or quiet enough).

So instead, I’ve decided to dress up as a wobbly Christmas tree and record a song.

My partner-in-crime is Dan, a fellow MS Society Council member. Every time we get together, we rework Christmas lyrics into songs about MS as, handily, the letters M and S both appear in ‘Christmas’. Bear with.

All we have to work out is where to record the song, who can record us for a short accompanying video and how we can unleash this on the public.

The filming part should be easy – I’ll be a Christmas tree and Dan can be a reindeer and we can lob snowballs and tinsel at each other (from the comfort of chairs, natch). Or we can be really cheesy and wear matching knitted Christmas sweaters and sit by a roaring log fire, toasting marshmallows and drinking eggnog. Sort of Val Doonican-esque.

And now it’s over to you guys. What do you think? Should I embarrass myself (and The Teenager) for life?

Can we raise vital funds and still keep our dignity intact?

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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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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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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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