Tag Archives: multiple sclerosis

Aug 07 2017
6 Comments
Media

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?

Tagged , , ,
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.

Tagged , , , ,
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 …

Tagged , , , , ,
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’.

Tagged , , , ,
Jul 14 2017
10 Comments
Work and Studying

What A Week

graduationIt was my graduation on Monday.

I had booked my cap and gown, RSVP’d and panicked for months about walking across a stage in front of hundreds of people.

Conundrum – should I look at my feet when I walked or look straight ahead and hope for the best?

MS foot-drop is sneaky.

I got there early, accompanied by my best friend and boss (an honorary title) and we picked up programmes to flick through while we waited. I found my name (Masters Distinction!) then idly looked at the Awards pages. Erm, my name was there – it’s quite unusual, so it stood out – and I was there, with the MA Humanities Award for academic excellence.

Well. I beamed from ear to ear. I showed the boss, who looked as surprised as I did, given he’d seen me weeping over endless essays, surrounded by books and empty coffee cups on a regular basis. Or more often than not, on the sofa, poleaxed by fatigue. I felt a huge sense of … achievement. And something more than that – the feeling that I had put MS in a box, that I had done it despite everything it had chucked at me.

All too soon it was time to fetch my gown. My cap was too small (big head?) and I faffed around with grips to keep it in place. Then suddenly I was in the hall, and then walking in a snake-line towards the stage. Whoah. I duly handed in the slip of paper I’d been given to the booming announcer and there you go, I was walking – slowly, carefully – across the stage. I shook someone’s hand, grabbed my certificate and then the nearest banister.

It was a brilliant ceremony, despite my fears. And the week just got better. On Wednesday, I found out my dissertation story had been long-listed for an award, and I’m keeping everything crossed for the short-list. Not only that, The Teenager wangled free tickets to the Coldplay concert (I don’t know how he does it; inherited charm?).

Sadly though, it’s back to earth with a thud. My days are once again filled with concrete, roof joists and leaking buckets. From the lofty heights of academia to underground sewage pipes, the life of a building project manager is rarely exciting. But in the back of my mind, I’m replaying the moment I discovered my name in the Awards pages …

P.s. Don’t panic – I haven’t suddenly had a baby. The photo is of me and the boss with my friend’s son #cute

Tagged , , ,
← Older posts
Newer posts →