Just a quicky… A BRILLIANT site!


By far the best MS Society site:  https://beta.mssociety.ca/

Well done Canada!  And thank you.

And while you’re surfing, check out this from a fellow MS bod:  http://djdsouza.wordpress.com/2009/01/12/what-i-do-to-fight-the-effects-of-multiple-sclerosis/


Dolphin Friendly Tuna… Or why Google can be about as useful as a chocolate teapot…


NB:  There useful links at the end of this piece, so if you can’t be bothered reading my thoughtful insights, just skip to the bottom…

There are a few reasons that I started writing this, some of which I haven’t actually got sorted in my head yet, and some are very personal.  But one is because while there is a lot of information about MS out there, some of it can be incredibly baffling, with a lot of scientific terminology, some appears quite contradictory – Benign appears to be a short-lived thing, like the ‘flu’, while Primary Progress can appear very scary, yet they are both MS…  While some is down right dangerous…

Before I was first diagnosed, I had been suffering from double and blurred vision; now I put this down to stress:  I was working 80 hours a week plus in an incredibly high pressure position, in a role that sort of went against everything my career up until then had been about (I was working for the Dark Side in relation to Credit Hire, whereas previously I had been a Jedi working for the insurance companies).  So I did what any normal person would do, when faced with an optical problem and went to the opticians…

My vision was “fine”, but there was “something else”…  I was referred to the eye clinic.

My eyes were “fine”, but there was “something else”…  I was referred to neurology.

There WAS a problem with my brain…  Well, anyone that knows me could have told you that…  I was confronted with a battery of tests:  MRI’s, CT Scans, and worst of all, lumbar punctures.  I was tested for brain cancer, brain tumours, all kinds of horrible, scary stuff, but I deliberately didn’t look on the internet – it was bad enough that I was being tested for all these things.

Then I got a phone call on my mobile – it was a classic Nokia 3210, the Volvo of the mobile world.  I can remember it as clear as if it happened yesterday:  It was gorgeous day, about this time of year and K and I had taken the dog for a walk by the Monument on Caldy Hill and it was Walton Neuro calling:  All the tests had come back, and I had MS.  “Thank God!  Now what’s MS?”

So, I had a diagnosis, but didn’t have a clue what it was – I’d heard of ME, but not MS, and although I had an appointment to go and see a specialist, I decided to do what any normal person would do, and look on the internet.


“MS is a killer…”  “MS sufferers have a life expectancy of 5-10 years…”  “MS is virulent…”  And there was more.

The cr*p that I found.  But these were big, friendly sites that appeared much more accessible than the sites that had scientific and medical stuff on.  (To be fair, the MS Society actually recognised this a couple of years ago and drastically redesigned their site – it’s second to none now: http://www.mssociety.org.uk/)  It scared us sh*tless at the time (the stuff I found on the “big, friendly” sites that is).

The reason that this was brought to mind is that a friend’s sister-in-law has just received a diagnosis, and his wife has been doing everything that I did, because although they know that I have MS, they “didn’t want to intrude – especially with some of the stuff that she’d seen on the internet…”  Eventually however, my friend did ask, as his wife was getting in such a state (her sister lives abroad, and she had that feeling of impotence you get when a loved one’s ill and you are too far away to do anything), so I told them what I know.

There is a reason that I emphasised the “I“:  As I have mentioned before, MS is a very personal thing…  The symptoms all depend on where the scarring takes place on the brain (sclerosis = scars); for instance, just because I get tremors in my arms and legs, or blurred vision, doesn’t mean that someone else will…  I have a progressive, form – that doesn’t mean that my friend’s sister-in-law will have it…

So I have a suggestion to anyone that has recently been diagnosed, or knows someone with MS:

ONLY go on reputable websites…  “How do I know that a site is reputable?”  I’ve posted some below, which may have links to other reputable sites…

DON’T look up symptoms “just in case”…  Speak to your MS nurse, consultant, or local society – in the UK, the number is 0808 800 8000,in the US 1-800-344-4867, in Australia +61 2 8484 1315 (note: This is the NSW main office as each state has its own)

DO seek advice if your body is/isn’t doing something and it doesn’t seem right…  BUT only from one of the people listed above!

And finally, DO NOT use a search engine!!!







http://www.emsp.org/ (links to the various European MS Societies)

Roller coasters


I’ve heard this so many times that it is a cliche:  “Life is a roller coaster, full of ups and downs”…

Well, Tuesday I was up – went to Liverpool with K to get my ticket to see Henry Blofeld on Saturday and also to top up our spices from Mattas, and just for a general nosy.  I felt good.  K was a bit concerned about how much walking I was doing, but I’ve always been like that, even before I was diagnosed:  If you can do it, then do it, if you can’t, then you’ve given it a damn good attempt.

Unfortunately, MS dictates that, to simplify Newton’s law, what goes up MUST come down.

Yesterday morning I went to get out of bed.  I know I wanted my legs to move; I could almost feel them moving.  The problem was, I couldn’t see them moving.

Because they weren’t.  I had reached the bottom of the roller coaster.

I had to ask myself a question that I know will have the worst possible answer one day, and, due to the unpredictability of MS, I don’t know when:  “Is this it?  Is this the day when the wheelchair comes out of the shed for good?”

I try not to think about this.  I’ve got a bike in the shed that I WILL ride again one day.  I will finish doing K’s classic Raleigh Shopper up, get her the basket for the handlebars that she wants, and the two of us will go for a bike ride along the Wirral Way, or along the prom to New Brighton.  This WILL happen; I will get my medication sorted and my MS stabilised to the extent where I can almost go back to “normal”.  But unfortunately, realism has to be looked at as well sometimes.

One day, I’ll either wake up and not be able to get out of bed, or I’ll fall over (again), and not be able to get up.

(Writing this, and reading what I’ve written has led me to a realisation:  I need to listen to people.  K didn’t keep asking me if I was okay, and didn’t keep saying that we have a rest to be patronising, no matter how annoying I may have found it.  She was asking it for the good of HER health.  Because at the end of the day, when the roller coaster comes to an end, it’s HER that will be getting me off the ride and onto the slow ride that is the wheelchair…)

Luckily I’ve got up this morning and although a bit wobbly, I’m fine…

So, what can be learnt about the past couple of days?  I can be a bit of a d*ck?  But then it doesn’t take a genius to work that one out…  No, what I think can be learnt is what we are always told about food and drink:  Moderation.  When I feel good and at the top of the roller coaster, I should stop.  Don’t try to cram everything in.  I should enjoy the view.

Life isn’t a roller coaster at all.  It’s a much more gentle ride – sort of like the cable car at the Great Orme in Llandudno:  Yes, you’re up high, but you’re taking you time and looking out over a fantastic vista.  Yes, you will come back down eventually, but while you’re up there, enjoy the view.

What makes MS fun is its unpredictability…


If you’re one of the kind people that read my post yesterday, you will remember that I was frustrated because my legs felt fine yet I was going to be stuck in as I was waiting for a courier…

Ha.  Ha ha ha.

Before K went out, I went round to get the paper, and apart from being blown to smithereens, made it there and back without incident, and when I got back, I had a brief sit to scan the paper before reading it properly after K had left…

Wellllll…..  K was leaving, so I went to stand up so that I could give her a peck on the cheek goodbye…

Now I want you to imagine that your brain is the master control room, and your nerves are messengers that are a bit dim and get distracted easily…  And your limbs and organs are the intended recipients of any messages that the control room sends…

So I could stand up, the control room sent a message to the legs…  Not a long journey, but the messengers decided that they didn’t really want to go there – they found the arms much more interesting…

I went to stand up.  But the messenger went to my arms, ran back to the control room, back to the arms and back to the control room – repeatedly.  So my arms decided that they wanted go into tremor.  My legs were quite happy not doing a damn thing.  And my hands…  Well, they decided that they were not happy being movable and that my fingers would be much better clenched into a fist that was NOT going to open – and as I had hold of some money that I was going to pass to K, it meant that she needed to use both hands to open it enough to get a pen between my fingers and hand to lever it open so that I could release the money…

Now the beauty of all this is, I never know from one minute to the next if the messengers are going to go their intended destination, stay where they are, or take a side trip…  Or as happens quite often, decide to go back and forth repeatedly – causing tremor.  In theory, the medication is supposed to prevent this, but as I hinted at yesterday, medicating MS is very hit and miss.

The brain is a very complex and wonderful organ, but because it is so complex and wonderful, it is a complete bl**dy nightmare to treat!

I’m going to finish now, so the upshot of the story is this:  It didn’t matter that I had to stay in yesterday to wait for a courier as my MS dictated that I HAD to stay in, but I AM going out today!

What is annoying however, is that the bl**dy courier never s*dding turned up!