Tuesday, 17 February 2009

Reading and MS

I used to read a book a week. Every lunchtime, I'd grab some fresh air and sit by the canal with the latest piece of weirdness that I'd picked up at Waterstones. Every evening I'd lounge with my face buried between the pages while my wife sat next to me watching telly.

That all disintegrated five years ago at the same time as my first major MS relapse. I had a stressful time of it, working in a new job that I hated and a newborn baby waiting for me at home. The stress probably triggered the relapse but I didn't really have the time to read anything in the evening, anyway.

These days, I really like the idea of reading but find that I simply can't. My MS makes it difficult to concentrate when I get tired and at the end of a day spent in front of a computer screen, my eyes will jump around. Any attempt to read more than the few pages I read to my daughter before bedtime requires great effort and sends me to sleep and the very prospect of reading makes me feel tired.

I have tended to substitute for it by immersing myself in films instead.

I am wondering if graphic novels might be a way of re-building my reading stamina. If I only have to read dialogue and the odd caption, it may take a lot of the fatigue out of reading and restore the enjoyment of a good book. It is something I intend to explore.

Friday, 13 February 2009


The best analogy of MS I have read in a long time comes from an interview with the graphic artist Johnny Hicklenton. Johnny is the subject of an award winning film "Here's Johnny" which follows his life and increasing disability for seven years after his diagnosis. He likens MS to terrorist activity.

This makes perfect sense to me - each relapse a terrorist attack, each course of steroids the emergency services attempting to mop up the disaster scene and the disease modifying drugs the equivalent to the intelligence services reducing the terrorist activity.

Here's Johnny makes it's network premiere in the UK on Tuesday 17 February on More 4 at 10pm. Johnny has a more progressive form of MS than I currently have, so even though I am greatly looking forward to seeing it, I will be viewing with some trepidation for what might be.

Some relevant links:
Here's Johnny website
Interview in the Daily Telegraph

Thursday, 12 February 2009

Psycho swat team

I caught something on TV the other night about someone who had a minor stroke while on holiday in the UK. As a result, he could no longer read when he woke up. He knew the individual letters on his hotel shampoo bottles, but couldn't string them together into words. Even though they were written in English, he was convinced they were written in a foreign language.

While this in itself is odd, the thing that struck me was that he informed his wife he couldn't read, She didn't believe him and he put it to one side mentally. He then just carried on as normal until later when he had to read something else and it all came back to him.

This reminds me of the time I first noticed my doublevision. I can't put an exact date on when it happened, other than it was March/April 2008 and I was at work when I noticed it. I found it odd and I tried to put it right by trying to un-cross my eyes. When I found that I couldn't, I just carried on doing what I was doing, double-checking it was still there every now and then. I think I thought "It'll go..." until a few days later when it obviously wasn't going to go. Nearly a year later it's still there.

I wonder if the magical brain somehow cushions the shock caused by the injury by despatching some sort of psychological swat team - convincing the mind that the doublevision or inability to read is a normal thing and to carry on as normal. And I wonder if the man with a stroke would have noticed his inability to read if he had been at home instead of on holiday. I wonder if he would have carried on as normal for days, avoiding books or newspapers before it started to bother him.

Tuesday, 3 February 2009

My MS History - Part Five

For the story so far, see Parts One, Two, Three and Four

Between visiting Dr G and Dr Sh, I needed to do my research and also go for a lumbar puncture. I reacted badly to the steroids and as far as I can tell, they didn't do me any good.

After diagnosis, you enter a whole new world. Support networks are everywhere. The MS Society and the MS Trust sent me reams of free information to get my head round. I joined the MS Society and spent an hour talking to the local rep over the phone. The web is awash with discussion forums. I was assigned an MS nurse - H - who was to become my contact with the hospital as well as a source of advice and information. She came to visit me at home. I also had a meeting with one of the Occupational Health Nurses at work and the Disabled Workers' Group in my workplace also corresponded with useful and supportive advice.

With the information at my fingertips I was able to piece together incidents from my past and build up a picture of my MS history. The most interesting find was a diary entry from mid-2004 that documented "everything that has gone wrong with my health since starting work at (my employer)" This modest list was as follows:

  • vertigo. My local practice nurse told me this was some sort of postural hypotension because it occured when bending or lying in certain positions. I had a mental image of my aorta being squeezed, every time it flared up.
  • eye problems. I had flashes and flickering lights in my vision and pain when looking round. I went to my GP, an optician and eventually my local hospital as an out-patient over this and was told that I had symptoms consistent with a detached retina, but apart from that , they were stumped. I can picture the present-day Dave, in a white coat, leaning over the opthalmologist's shoulder: "Hmmmm.... how about optic neuritis??"
  • a four week headache that wouldn't shift with painkillers
  • pins and needles on one side of my head.
So there you had it. I had unwittingly documented my first major relapse.

Evidence of further MS activity crops up in other diaries. My 2007 diary, for instance, documented a nasty spell of vertigo and showed evidence of fatigue where end-of-the-day diary entries spouted random gibberish and spiralled off into unintelligible squiggles.

The lumbar puncture wasn't too bad. The nurse performing the procedure reminded me of someone I knew, so that put me at ease. The local anaesthetic being administered was the most painful bit. I felt the pop of the needle entering my spinal column and I was surprised to see that my cerebro-spinal fluid was completely colourless. Other than that I didn't feel any discomfort. Everything had been explained in great detail. I remarked that I had pulled a muscle round lumbar number 4, six years previously and the nurse commented that it was still rock hard and impossible to get the needle through. She did physio for one of Sheffield's top sports teams, so I guess she knew what she was talking about.

I was one of the 10% of puncturees who had bad headaches for the next few days and on the third day afterwards (my third day in my new job), I vomited.

Seeing Dr Sh was a world of difference from Dr G. He popped in to yet another session of symptom observation with students in tow, listened to his registrar (who amusingly became all flustered) and declared that I had obviously had active Relapsing Remitting MS, that I had probably had a few relapses that year already and that we should put me on some disease modifying drugs as soon as humanly possible.

I had one of those amusing moments like the good vibrations in the MRI. Dr Sh, his registrar (Dr T) and two students wanted to see how my eyes were moving, so while I followed the path of Dr Sh's pen, I was aware of four pairs of eyes leaning forward and concentrating closely on mine.

One of the marvellous things about a neurological diagnosis is that you get to see the MRI of your brain. It is an odd experience and, probably because I was in a vulnerable spot emotionally, quite moving seeing it nestling snug inside the thin skull wall, also... dare I say it as an agnostic... an almost spiritual experience.

part 6 >