MND – the cruel killer

by admin on February 24, 2006

in General

Stuart Bruce gave me a hat tip for the NetDisaster thing so I hopped over to see what he’s up to. On his site I found a link to MND – Motor Neurone Disease Association’s site or rather that of Jon’s Journey. Why am I talking about this on a site like this? It’s a terrible illness that affects around 5,000 people in the UK each year. It has no cure and is absolutely relentless. It’s frequently mis-diagnosed as a British GP is unlikely to see more than one case throughout their practicing career. If they see one at all.

Professor Stephen Hawking is a sufferer and the longest known survivor at 35 years. Life expectancy once you have it is between 2 and 10 years. Essentially the body stops functioning though the mind and senses remain intact. It usually kills through an infection or the inability of the chest muscles to continue supporting breathing. In other words you suffocate. It affects more men than women. It is a dreadful way to die.

It’s killed some very well know people – actor David Niven, football coach Don Revie and my mother. Mum died the morning of my partner’s birthday – February 23rd, 2004. The last time I saw her was the end of January, 2004. She could not move, speak or look after herself in any way and required 24 hour care. She survived 3 months from the time when it was finally diagnosed. We still miss her. And that’s why there’s a clickable logo on this site.

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Ric February 25, 2006 at 4:19 am

Dennis – good call on the MNDA/John's Journey. It is a vey cruel disease, that also took my father-in-law. The ten months from diagnosis to death were painful in the extreme, and devastated my wife, who was very close to her Dad – my sympathies to you and your family. Be assured we support the Australian version of this charity (MNDAA)

Dennis Howlett February 25, 2006 at 4:34 am

Hey Ric – I didn't know – my heart bleeds for you. Let's do this elsewhere.

Heather February 25, 2006 at 9:04 am

This was a nice but sad post Dennis – but these things do aflict people and some diseases or conditions although 'known' about generally – people don't really want to see it – its something that happens to other people.

No one wants to be overwhelmed with charity cases but I think that blogging offers a way of supporting causes (often personal to the blogger) in a subtle way and little posts every so often like this add weight to it.

We support Unique and the PBC foundation ourselves – similarly because we have been affected as a family.

Charities need a bit of a boost sometimes.

Sorry to hear about your Mum – no one wants to see a loved one suffer – and to feel so helpless, well its not nice.


Dennis Howlett February 25, 2006 at 2:05 pm

Spot on Heather – I remember climbing the steepest learning curve of my life with that one. Complete helplessness has a wonderful way of putting things into perspective. Especially in a world where I think we sometimes delude ourselves into believing everything can be controlled.

Robert Coutts March 19, 2006 at 10:18 am

Hi there.

I am 64 this coming friday, 24th, and on the 15th Dec 2005 was diagnosed with MND. I live in NZ and my wife and I are being very positive and taking each day as it comes.
As we own and operate a Gourmet Burger shop with the help of one of our sons and because my ballance is no longer good I am going to retire on my birthday. I was given 2 1/2 years to live but hey, it might be a lot longer than that.

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