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Posted

Terrible for him. He's from my area and played for the same club as Mad Erik Meijer started his career with.

Apparently only 5% lives longer then 10 years after the diagnose.

This news overshadows the presentation of his book today.

Posted

I'm asking this genuinely and not trying to be funny - but are there different levels of how it affects sufferers? Does everyone end up in a similar state to Hawking?

 

Poor fella.

Posted

I'm asking this genuinely and not trying to be funny - but are there different levels of how it affects sufferers? Does everyone end up in a similar state to Hawking?

 

Poor fella.

 

I think Hawking is one of the rare examples - I think. The disease can affect sufferers more quickly that others i.e. the rate of decline.

 

Someone my dad knew lasted 17 years whereas my uncle only lasted 2 years.

 

I think the average time span is 2-5yrs if you are looking for a rule of thumb.

Posted

I think Hawking is one of the rare examples - I think. The disease can affect sufferers more quickly that others i.e. the rate of decline.

 

Someone my dad knew lasted 17 years whereas my uncle only lasted 2 years.

 

I think the average time span is 2-5yrs if you are looking for a rule of thumb.

 

What I mean is though, by the end are all sufferers pretty much physically helpless (for want of a better word)?

Posted

What I mean is though, by the end are all sufferers pretty much physically helpless (for want of a better word)?

 

 

Well at the end ... they're dead. It's a f*cking horrible one, motor neurone. Leaves the mind intact and just closes down various physical functions. My best mate's Dad ended up only being able to move his eyes and his eyelids - less than three years after first showing any symptoms at all.

Posted

Well at the end ... they're dead. It's a f*cking horrible one, motor neurone. Leaves the mind intact and just closes down various physical functions. My best mate's Dad ended up only being able to move his eyes and his eyelids - less than three years after first showing any symptoms at all.

 

As you say, it has to be the worse. Similar to that locked-in syndrome. Sounds beyond horrendous.

Posted

Mrs M's aunty was dead 4 months after diagnosis, first signs something wasn't right but undiagnosed was probably 12-15 months prior to that. Never seen someone deteriorate so quickly, utterly heartbreaking. If it was me on the end of a diagnosis I would seriously consider a flight to Geneva before it got too late.

Posted

Mrs M's aunty was dead 4 months after diagnosis, first signs something wasn't right but undiagnosed was probably 12-15 months prior to that. Never seen someone deteriorate so quickly, utterly heartbreaking. If it was me on the end of a diagnosis I would seriously consider a flight to Geneva before it got too late.

 

Without a doubt. The older I get and the more I see of serious illness and the more realistic that option becomes.

Posted

Mrs M's aunty was dead 4 months after diagnosis, first signs something wasn't right but undiagnosed was probably 12-15 months prior to that. Never seen someone deteriorate so quickly, utterly heartbreaking. If it was me on the end of a diagnosis I would seriously consider a flight to Geneva before it got too late.

 

Think I'm with you there.

Posted

I think Hawking is one of the rare examples - I think. The disease can affect sufferers more quickly that others i.e. the rate of decline.

 

 

There are neurologists who think Hawking probably has a different condition given how long he's lived since diagnosis.

 

MND is an awful collection of diseases.

 

Poor guy.

 

 

 

Posted (edited)

Assisted suicide is the way of the future. It's sad that it'll be for economical reasons it'll be sanctioned by the government but it'll be nice to be able to be in control of your dignity when the time comes. The thing is pain management when people are on the way out is kinda the same thing so we should just be more honest and let people have a say in when they decide it's time to call it quits.

My aunt just spent 2 years slowly dying when it was clear to all she was done. It'd be nice to think you could make your peace with whoever you need to, have a party when your well enough and with your dignity intact and memories of you not distorted by the illness and sign off on your own terms.

Edited by Romario
Posted

In theory that sounds great, but I think the reality of it is actually still scary to a lot of people.

 

I know/knew a Dutch guy who fought cancer for years and for a long time appeared to be winning the battle - then one day I got an invitation completely out of the blue to a party at his place, just before Christmas (must have been about 15 years ago now, I guess). I phoned and accepted and said I thought his birthday was in the summer - it turned out the cancer had spread and he was having a real "leaving party". I was really shocked - but the event itself was absolutely brilliant. He had everyone there who he wanted to be there, people came from all over the world - I don't know how many people have had really sick family or friends on the other side of the world but knowing when to go and visit is really difficult (time, expense etc.). This way everyone knew precisely when the right time was to go and see him - he wasn't going to die that day, but equally he wasn't going to make a miraculous recovery and live for another 10 years.

 

From being what was to me a good, if slightly scary, idea, that experience confirmed to me that it really is the way forward.

Posted

Was having this chat in work with a lad who lost his mum to cancer and we both agreed there was a lot to be said for bombing out to a heart attack in your sleep.

Posted

Was having this chat in work with a lad who lost his mum to cancer and we both agreed there was a lot to be said for bombing out to a heart attack in your sleep.

 

With respect, that is a somewhat simplistic viewpoint.

 

I lost my father to a sudden heart attack. The problem with the 'bombing out' idea is that there suddenly a huge gap where a person used to.

 

Now, I'm sure you're seeing from the perspective of the person who dies, nice and quick like, surely better than long and drawn out.

 

But it's the living the suffer most from a death and being denied the opportunity to come to terms with it to some degree before it happens is very hard to deal with.

Posted

There is no right answer - but the suffering caused by MND really is appalling.

That's for the person with the disease and also for everyone around them.

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