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(Read Simon's story)

Simon with the band Simon Smith at a Passion Spent rehearsal.
(19 October 2006)

Simon Smith was diagnosed with Motor Neurone Disease (MND) – also known as Amyotrophic Lateral Sclerosis (ALS) – in early 2005, but continued to inspire others, with his bizarre mix of realism, determination and humour. His drive to produce something positive from a disease that he knew would eventually kill him inspired one Passion Spent band member, Carrie Martin, to persuade the other members of the band to agree to play a couple of gigs to help Simon to raise as much money as possible for the Motor Nerurone Disease Association.

For those who know very little about MND – and that includes me, the rest of the band, and our friends and families – we've created links to a number of Web resources where information is available, including the Motor Neurone Disease Association's website. Logically enough, these are on our Links page!

I do have a couple of issues with some aspects of the information presented on some of the MND/ALS websites: this stems mainly from inconsistencies in both the detail of information given and in the phraseology used to express the information. Moreover, the documentation can often be bland and sanitized – even patronizing. (For example, the Motor Neurone Disease Association has a downloadable document called Your personal guide to Motor Neurone Disease that advises: "You could see this as an opportunity to make changes for the better – you can develop closer relationships with family and friends, make new friends with others sharing your experiences, learn about computers and how to communicate through the internet, and so on.") This is not to underestimate the scope and quality of the work carried out by these organisations. We each deal with life events in our own unique way, and I'm sure these organisations – including the Motor Neurone Disease Association – with their wealth of expertise and experience, strike the right balance for the majority of people.

The various MND/ALS organisations around the world have their own individual approach to delivering information about the disease, and links to a number of these MND/ALS related websites are also included on our Links page. I found the website of the International Alliance of ALS/MND Associations a very good place to start.

Here, I intended to present a list of instant facts about MND/ALS, but there are a number of contradictions between the information given by the (British) MND Association and the information given by other MND/ALS organizations, such as the ALS Society of Canada. However, they do agree and use the same phraseology on the following two points:

  • MND is not contagious
  • MND cannot be cured

Although one particular statistic from the MND Association's website might be accurate: "50% of those diagnosed with MND die within 14 months", clearly some sufferers live with the disease for far longer. One such example is internationally renowned theoretical physicist Stephen Hawking, who is probably the highest profile MND sufferer on the planet, and who was diagnosed with MND at the age of 21 – he's now (2006) 64 years old. His is, of course, an exceptional case: the statistics show that life expectancy for most people (80%) with MND is just two to five years. However, ALS sufferer Steven Shackel also has an interesting story to tell on his ALS/MND website, so please check that out, along with the others. All the websites linked to from our Links page contain links to other MND/ALS resources, if you feel the need to discover even more information about the disease.

I don't want to make a vain attempt to re-interpret the widely available and varied information on MND/ALS, but I hope reading this page has triggered your curiosity to learn more about the disease. I would encourage anyone who has put up with what I've been saying up to this point to read Simon's description of his personal experience of MND, below, before exploring further: start on our links page and see where those links take you.

Jim Orwin


How did it start?

I was in the last weeks of pre-season, training six days a week. Running and cycling and gym work. It was my final season after twenty years of dedication. I represented Yorkshire and was fortunate to have been paid to play a sport I love. I had a pain in my left shoulder and when I was out and about I kept tripping. When I trained I had trouble catching the ball and coordination in general was worsening. I had an MRI scan on my neck: nothing showed. I was told about motor neurone problems. After five months of tests I was diagnosed with Motor Neurone Disease.

I read the literature and I had a life expectancy of 2>5 years, that was 18 months ago.

I am now unable move my limbs or stand without a lot of help. I need to be washed and fed by someone.

The worst thing is having an itch – next time you have an itch see how long you can leave it?

I have had incredible support from my family and friends: because of this I am humbled.

What next?

Well, as my voice has deteriorated the only movement I have is moving my knees together, and with a button between them and some software I am able to use my computer and send emails, write reports and surf the net.

I am also trialling a system were I enter words to form a sentence, click the button and it speaks for me and remembers the sentence for use again.

Probably the most frustrated I get when people see I'm disabled and talk round me. (They don't realise that MND doesn't affect the mind) I feel like shouting I AM HERE ! if I only could.

As I see life now, I am moving forward. I've done a lot in my life up to now, so why stop.

I assist in rugby Coaching by giving the Coach an outside opinion. It's easy for me as I used to Coach these teams and I'm good friends with the Coaches.


(Sadly, Simon died on 19 April 2007)