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.
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)
The ALS/MND links below featured to coincide with the charity gigs Passion Spent played for Simon Smith, to raise awareness of ALS/MND and to raise funds for the Motor Neurone Diseases Association. They will remain for the foreseeable future.
International Alliance of ALS/MND Associations on the Internet
What is ALS/MND – from the International Alliance of ALS/MND Associations on the Internet
Motor Neurone Disease Association
What is MND – from the Motor Neurone Disease Association.
The ALS Society of Canada
10 Facts about ALS – from the ALS Society of Canada (archived resource at archive.org)
Stephen Hawking: Disability – where the legendary theoretical physicist responds to the ‘often asked’ question: “How do you feel about having ALS” (archived resource at archive.org)
Steven Shackel’s ALS/MND Website– explore the site for information and links to other resources – (archived resource at archive.org).
The Importance of Mental Attitude – from Steven Shackel’s ALS/MND Website – (archived resource at archive.org).