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Author Topic: Motor neurone disease  (Read 317 times)

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Varche

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Motor neurone disease
« on: 04 December 2017, 22:56:10 »

Got a couple of experoences with this horrible illness.

The first was my dads neighbours wife got it. I remember looking it up on the internet as my dad asked what the likely outcome was. In the event it was only two years  as she succumbed to I think, a urine infection but that was enough for her husband.

Worse is the sister in laws widowed mother who has had it for years now. I think 8.but it maybe much longer She is/was a lovely woman and I always try to visit on my infrequent trips. The decline has been horrendous in terms of her abilities. She lost her speech at least two years ago. On a good day now her eyes flicker in recognition. Mostly she is asleep or not quite there. All horrbly distressing for family although it has caused a huge rift as family view the need to visit differently.

The care home are doing a wonderful job of keeping her alive. She lost the ability to swallow years ago and has been tube drip fed some brown gunge of marvellous properties. Her skin is in great condition and her hair. Whenever she gets an infection , she receives the right treatment to keep her alive.

There are many aspects that upset me but perhaps the worst is as a former nurse she knew the outcome when initially diagnosed and asked her daughter to speed up the end. She cannot mentally even if she had the means. 

I hope no one on the forum has to go through this themselves or with a family member. If you are or have, you have my deepest sympathy
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Sir Tigger QC

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Re: Motor neurone disease
« Reply #1 on: 04 December 2017, 23:08:37 »

I'll echo Varche's final paragraph. MND is a truly horrible way to go.  :(

A family friend got it a few years ago and lasted 4 years before he succumbed.  It was terrible seeing him slowly but surely losing his functions.  :'(

Some might say is cowardly, but I honestly think I'd take a pill when I started to lose the quality of life.  ::)
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Kevin Wood

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Re: Motor neurone disease
« Reply #2 on: 05 December 2017, 00:21:02 »

Yep, friend of mine passed away from it a year ago. He was still riding around on his pushbike in his eighties and his mind was a sharp as a pin. He used to be an engineer working on electronic countermeasures on the V bombers back in the day and could recall all the details of things he got up to which he probably shouldn't have been sharing with me. Then he got MND, ended up in a home and lost the will to live. His mind was still in great shape but his body couldn't do it justice and it was a horrible slide from a proud, lucid and capable man to, well, just an existence. Mercifully, he'd had a long and happy life behind him and he didn't suffer for long but I really pity those who suffer from earlier in life. :(
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STEMO

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Re: Motor neurone disease
« Reply #3 on: 05 December 2017, 07:15:09 »

This is only my personal view, but I think we should all be slowly stocking up on something that will end our lives quickly and peacefully should the need arise. I know thatís controversial, but I wouldnít want to ruin my nearest and dearestís lives (and my own) by hanging on for years and begging them to do something about it.
It ruins families both emotionally and financially and, I hope, I would have the guts to do it before I became incapable.
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Tilbo

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Re: Motor neurone disease
« Reply #4 on: 05 December 2017, 07:46:56 »

This is only my personal view, but I think we should all be slowly stocking up on something that will end our lives quickly and peacefully should the need arise. I know thatís controversial, but I wouldnít want to ruin my nearest and dearestís lives (and my own) by hanging on for years and begging them to do something about it.
It ruins families both emotionally and financially and, I hope, I would have the guts to do it before I became incapable.






Couldn't agree more Stemo , personally I would hate to end up like some of these poor souls you see or read about.
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Varche

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Re: Motor neurone disease
« Reply #5 on: 05 December 2017, 08:49:17 »

This is only my personal view, but I think we should all be slowly stocking up on something that will end our lives quickly and peacefully should the need arise. I know thatís controversial, but I wouldnít want to ruin my nearest and dearestís lives (and my own) by hanging on for years and begging them to do something about it.
It ruins families both emotionally and financially and, I hope, I would have the guts to do it before I became incapable.

Setting aside just what you would stockpile, I have a suspicion that the timing would be very hard to achieve. Whilst you were able to carry out such an action, it would be human nature not to. Then when you wanted to you wouldn't physically be able to.
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aaronjb

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Re: Motor neurone disease
« Reply #6 on: 05 December 2017, 09:09:27 »

One way ticket to Switzerland for me, should the worst ever happen, for sure.

I watched my mother care for my grandfather through his decline into Parkinsons disease - and he had a good 35 years with it as he was diagnosed in his 50s if memory serves, and lived to 85 with the last 10 years or more with my mother as his primary carer at our home. I certainly don't have her fortitude; I couldn't have done it in her position.
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Keith ABS

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Re: Motor neurone disease
« Reply #7 on: 05 December 2017, 10:30:03 »

 Close friend died from it this year. He had spent five years constantly in and out of "specialists" to find out what the problem was. Once they did diagnose, it had already set into his right arm so he could not use it below the elbow. 5 years they gave him, he lasted three. Still carried on at his body repair shop until the end of May this year. Once closed, he lasted seven weeks. All that he had built up over the years being now gone, we all believe that he gave up. Horrible, horrible disease. I know of three others with it, one many years ago, one other who died this year as well and the other I now have lost any contact with since my mate has gone.

Keith ABS
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Sir Tigger QC

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Re: Motor neurone disease
« Reply #8 on: 05 December 2017, 10:48:11 »

Sorry to hear about your friend Keith, but I think you are wrong to say he 'gave up'

It sounds like he fought a good fight, and I think it's just that he accepted his inevitable fate, which is a situation that many of us will face one day.  Sadly there are some battles that we just can't win.  :(
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STEMO

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Re: Motor neurone disease
« Reply #9 on: 05 December 2017, 10:52:04 »

This is only my personal view, but I think we should all be slowly stocking up on something that will end our lives quickly and peacefully should the need arise. I know thatís controversial, but I wouldnít want to ruin my nearest and dearestís lives (and my own) by hanging on for years and begging them to do something about it.
It ruins families both emotionally and financially and, I hope, I would have the guts to do it before I became incapable.

Setting aside just what you would stockpile, I have a suspicion that the timing would be very hard to achieve. Whilst you were able to carry out such an action, it would be human nature not to. Then when you wanted to you wouldn't physically be able to.
Most people on this forum are well used to keeping things alive long after they should have gone  :)
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Migv6

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Re: Motor neurone disease
« Reply #10 on: 05 December 2017, 11:02:26 »

This is only my personal view, but I think we should all be slowly stocking up on something that will end our lives quickly and peacefully should the need arise. I know thatís controversial, but I wouldnít want to ruin my nearest and dearestís lives (and my own) by hanging on for years and begging them to do something about it.
It ruins families both emotionally and financially and, I hope, I would have the guts to do it before I became incapable.

I also agree with this. I had an aunt in Australia who did it once her cancer got to a certain stage. Her husband was an eminent doctor so she was well aware that she was past the point of no return.
She had a good bottle of wine and a large stash of pills and consumed them while having a bath.
I had always disliked the woman, but I gained a lot of respect for her after that, which has stayed with me.
In fact it inspired me to the point where I plan on a similar course of action once existence becomes pointless for one reason or another.
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Kevin Wood

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Re: Motor neurone disease
« Reply #11 on: 05 December 2017, 11:04:46 »

Most people on this forum are well used to keeping things alive long after they should have gone  :)
Yes, at least you had the courage to do the decent thing and cull the snot green Astra, though. :y
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STEMO

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Re: Motor neurone disease
« Reply #12 on: 05 December 2017, 11:20:47 »

Most people on this forum are well used to keeping things alive long after they should have gone  :)
Yes, at least you had the courage to do the decent thing and cull the snot green Astra, though. :y
It wasnít culled, it was passed on to another person with taste.  :P
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omegod

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Re: Motor neurone disease
« Reply #13 on: 05 December 2017, 11:36:46 »

My Irish relatives say this would be a situation of " I'm off to the shed with my shotgun, I'll see ya later"  :'(
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Re: Motor neurone disease
« Reply #14 on: 05 December 2017, 12:08:15 »

My Irish relatives say this would be a situation of " I'm off to the shed with my shotgun, I'll see ya later"  :'(

Trouble with that is that some poor bugger has to find it and someone else has to clean it up :-X
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Re: Motor neurone disease
« Reply #15 on: 05 December 2017, 19:27:46 »

Is it not time we[as a race]got past the idea that life is sacred,but rather it is the quality of that life which matters?Don't get me wrong I am by no means advocating euthanasia en masse,but I personally wouldn't like to be kept alive beyond when there was no real hope of recovery and I was reliant on drip feeds/machines/whatever to keep me going. 
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Re: Motor neurone disease
« Reply #16 on: 05 December 2017, 19:46:34 »

Hard to disagree with that, but its almost inevitable it would lead to euthanasia en masse.
When legal abortion was introduced in GB  the stated aim was purely to save a small number of women each year from risking their health and lives at back street clinics.
Within approx. a decade abortion numbers ran into six figures and it was just another form of contraception, despite huge advances in all the other forms of contraception.
The road to hell is paved with good intentions.
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Re: Motor neurone disease
« Reply #17 on: 05 December 2017, 20:10:24 »

Is it not time we[as a race]got past the idea that life is sacred,but rather it is the quality of that life which matters?Don't get me wrong I am by no means advocating euthanasia en masse,but I personally wouldn't like to be kept alive beyond when there was no real hope of recovery and I was reliant on drip feeds/machines/whatever to keep me going. 
Is that the same as TBs cull list.  :D On a darker note i,ve told my kids that when they see me going past the point of no return, to please do not do anything to prolong my life further. Just hope the law is changed to save them from litigation. I also agree with Stemo as well, for a change ;D
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Keith ABS

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Re: Motor neurone disease
« Reply #18 on: 06 December 2017, 12:57:09 »

  With my good friend, after closing the workshop, he had nothing to look forward to every day. It was being got up and ready to go to work that kept him going. He told me that himself. With no work shop, he had nothing left. His wife had hit the bottle, again, so it was the carer that did everything for him

Keith ABS
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