Motor neurone disease - any experts here?
Discussion
Without going into any great detail, no, not I nor my loved ones are afflicted. But in a way my life has been affected today, when three years worth of planning another new business dissipated into a major partners withdrawal from the company, a good friend too, the second this year to have woeful stories of this dreadful disease which - although not him - has had impact on his life.
Why is it that two folk whose paths affected or crossed mine, were only recently diagnosed, both have been given very little time to live, the hideous onset rapid... Whereas someone like Stephen Hawkings (sp?) has been plodding on for decades with the curse?
I'll do some reading. Meanwhile there is PH to banter.
Has anyone else been affected directly or indirectly?
Is mnd more or less as bad/same as ms?
Life can certainly be cruel to some.
'there but for the grace of god go i' as some folk say - there isn't much worse out there, is there?
Why is it that two folk whose paths affected or crossed mine, were only recently diagnosed, both have been given very little time to live, the hideous onset rapid... Whereas someone like Stephen Hawkings (sp?) has been plodding on for decades with the curse?
I'll do some reading. Meanwhile there is PH to banter.
Has anyone else been affected directly or indirectly?
Is mnd more or less as bad/same as ms?
Life can certainly be cruel to some.
'there but for the grace of god go i' as some folk say - there isn't much worse out there, is there?
I used to be a Regional Care Advisor for the MND Association. Part of the job was to educate GP's etc as most would only see two or three people with MND in their whole career. Truly awful condition with average 18 months prognosis after onset. Lot of people eventually die through pneumonia after aspirating due to swallow problems rather than choking as such. Lots of info at mnd association website and have a look at this http://www.telegraph.co.uk/health/healthnews/59078...
db said:
a family friend suffered this. mercifully (?) quite rapidly. it's truly awful. i believe what kills them is the loss of muscle control in the throat. they cant swallow and literally drown in their own saliva. horrendous lung infections, not nice.
sorry to hear about this
Fortunately, it's not my friend, although just as unfortunately it is his mother.sorry to hear about this
Apparently the odds of becoming afflicted with the disease are one in fifty thousand - I posted a 'what are the odds' type thread a while back as both of his parents were diagnosed with it
I found the YouTube video to glockos story/post, the advert that is banned in the UK (if you didn't read the thread) http://www.youtube.com/watch?v=-PjKeN12Pls&fea...
It's pretty shocking to say the least.
Professor Hawking has ALS or some variant thereof - essentially, slow-motion MND.
If people with MND are willing/able to use a ventilator when it becomes necessary (initially/mostly biPAP by mask rather than a tube-in-the-throat job) they can sometimes live for a long time with good support, using eye-controlled computers to drive a powerchair, access the internet, use a speech synthesiser etc. It's not easy and many prefer the quicker exit that comes with not using breathing support - but the consequence of that is essentially death by slow suffocation. Personally I think I'd take the ventilator and computer and take my chances.
The majority of people who get MND are over 65, my dear friend Barbara who I met while I was stuck in the same nursing home as her was 73 when she got it. She was refused surgery for a feeding tube or to help her breathe as she might then 'live for a long time on a ventilator' - the surgeon's exact words - that would have been fine with Barbara, she knew what that would mean and was prepared to take it head-on. Younger folk have a much better chance of being able to take the ventilation route (at home if preferred) than elderly.
If people with MND are willing/able to use a ventilator when it becomes necessary (initially/mostly biPAP by mask rather than a tube-in-the-throat job) they can sometimes live for a long time with good support, using eye-controlled computers to drive a powerchair, access the internet, use a speech synthesiser etc. It's not easy and many prefer the quicker exit that comes with not using breathing support - but the consequence of that is essentially death by slow suffocation. Personally I think I'd take the ventilator and computer and take my chances.
The majority of people who get MND are over 65, my dear friend Barbara who I met while I was stuck in the same nursing home as her was 73 when she got it. She was refused surgery for a feeding tube or to help her breathe as she might then 'live for a long time on a ventilator' - the surgeon's exact words - that would have been fine with Barbara, she knew what that would mean and was prepared to take it head-on. Younger folk have a much better chance of being able to take the ventilation route (at home if preferred) than elderly.
BlackVanDyke said:
Professor Hawking has ALS or some variant thereof - essentially, slow-motion MND.
If people with MND are willing/able to use a ventilator when it becomes necessary (initially/mostly biPAP by mask rather than a tube-in-the-throat job) they can sometimes live for a long time with good support, using eye-controlled computers to drive a powerchair, access the internet, use a speech synthesiser etc. It's not easy and many prefer the quicker exit that comes with not using breathing support - but the consequence of that is essentially death by slow suffocation. Personally I think I'd take the ventilator and computer and take my chances.
The majority of people who get MND are over 65, my dear friend Barbara who I met while I was stuck in the same nursing home as her was 73 when she got it. She was refused surgery for a feeding tube or to help her breathe as she might then 'live for a long time on a ventilator' - the surgeon's exact words - that would have been fine with Barbara, she knew what that would mean and was prepared to take it head-on. Younger folk have a much better chance of being able to take the ventilation route (at home if preferred) than elderly.
Hawking's ASL would - in my mind - be the worse scenario. I would rather get it over and done with, than hang on for years. It depends on the person, Id imagine. Perhaps your friend had come to terms with being paralysed and wanted to live, whereas my mind would go apeshít trapped inside a lifeless body. If people with MND are willing/able to use a ventilator when it becomes necessary (initially/mostly biPAP by mask rather than a tube-in-the-throat job) they can sometimes live for a long time with good support, using eye-controlled computers to drive a powerchair, access the internet, use a speech synthesiser etc. It's not easy and many prefer the quicker exit that comes with not using breathing support - but the consequence of that is essentially death by slow suffocation. Personally I think I'd take the ventilator and computer and take my chances.
The majority of people who get MND are over 65, my dear friend Barbara who I met while I was stuck in the same nursing home as her was 73 when she got it. She was refused surgery for a feeding tube or to help her breathe as she might then 'live for a long time on a ventilator' - the surgeon's exact words - that would have been fine with Barbara, she knew what that would mean and was prepared to take it head-on. Younger folk have a much better chance of being able to take the ventilation route (at home if preferred) than elderly.
Another friends friend has MND. A family friend had MS. Someone else I know has just been diagnosed with MS (three people in a year, the diseases all seem the same).
Did some reading today, and the problem (if you'll permit the sentiment) seems simple to fix, in that it seems to be a problem with cells misbehaving in one way or another. I'd be extreemly surprised if a cure had not been found through genetics etc in years to come.
MND is a wickedly cruel disease; imagine your physical functions progressively shutting down, robbing you of mobility, bodily function and dignity and, all the while, knowing perfectly well what is happening. Imagine not being able to wash yourself, feed yourself, dress yourself or even attend to your own lavatorial needs. Imagine knowing that you will - sooner or later - die a horrible & lingering death.
My Godfather died from familial MND at the age of 46. His father and uncle both died of it in their early 50s. One of his two daughters died of it at 42 and his second daughter is now in the late stages of the illness at 45.
I've watched all of them go through it and - believe you me - you wouldnt wish it on your worst enemy.
If it were me it'd be a one way ticket to Switzerland as soon as I'd got my affairs in order after diagnosis
My Godfather died from familial MND at the age of 46. His father and uncle both died of it in their early 50s. One of his two daughters died of it at 42 and his second daughter is now in the late stages of the illness at 45.
I've watched all of them go through it and - believe you me - you wouldnt wish it on your worst enemy.
If it were me it'd be a one way ticket to Switzerland as soon as I'd got my affairs in order after diagnosis
Sheets Tabuer said:
Mobsta said:
I'd be extreemly surprised if a cure had not been found through genetics etc in years to come.
I'm sure there will be, how far in the future is uncertain.The main problem is funding
Id not heard my mate cry (or try not to cry) until this week. What an absolute f
ker of a disease (its his mum).Perhaps this era of digitally recorded history will remind some folk in the future, through videos and documentation, just how devastating a crippling disease can be, as I do envisage a world where affliction of this magnitude and nature is a rarity. Bit beyond us lot though.
Im no biologist/scientist, but how exactly would geneticists of the future solve problems? I got the impression we would be engineered before birth (in a good way) with defective gene and DNA trails eliminated, before conception. With hiccups Id imagine. But I also got the impression hearing this and that, that 'defective humans' could, further down the line, might be re-engineered, post diagnosis.
Another question... A PHer, a prolific poster amongst us (Not CW7, he deserves MND) told of his son's muscle wasting disease, a life changing and sad turn of events... I forget whose life changed, though
Wasn't you, was it fella?
CW7 - I take that back. You are evil, which makes you good.
ClaphamGT3 said:
If it were me it'd be a one way ticket to Switzerland as soon as I'd got my affairs in order after diagnosis
You and me both. I'll go in your suitcase - split the difference on hookers and coke when we get there.timster said:
Watched my best mates' mother suffer from it.Two years from diagnosis to death,she was 60 years old.Devastating diesase
I felt terrible enough hearing about your dad dying. Im just a big girls blouse when it comes to hearing about 'afflictions' - Some folk are afraid of fires, claustrophobia, bloomin' spiders, water, car crashes or falling. In my book, MNS, ALS, MS...If time is money, irrespective of the fact that too much money is used to fund chariries and keep them going, even so... every penny helps. Helps humanity crawl inch by inch towards the discovery which already exists, but has not yet been found.
I do not believe in a world in which humanity will feel 'We're finally there!' - There will always be an aspirational concept of positivity to marvel at, an almost unimaginable possibility of hope and something greater than that which we have now. Understanding and being able to remedy our own existence should be (and is, I think) quite high on that list, although somewhat "unimaginable" at present when it comes to genetics/dna/disease remedy
My M-I-L had MS and lived a fair few years with it; at the same time as that started (more or less as far as I can remember because it was over 30 years ago now) F-I-L was diagnosed with MND & he only lasted about 3 years at most (dying in 1978 in his later fifties) with "cause of death pneumonia" - much as described above. It sounds as if with the passing of 30 years or more not too much has changed in survival rate & time. Very sorry to hear about your situation.
Mobsta said:
Im no biologist/scientist, but how exactly would geneticists of the future solve problems? I got the impression we would be engineered before birth (in a good way) with defective gene and DNA trails eliminated, before conception. With hiccups Id imagine. But I also got the impression hearing this and that, that 'defective humans' could, further down the line, might be re-engineered, post diagnosis.
Not entirely sure of MND but I know in DMD they are working on patches for DNA, a lot of what causes it is a missing piece of DNA, my son has been on the clinical trials register for over six years however we've not had a call (he has a duplication in his DNA) so it is still a long way down the road.Mobsta said:
Another question... A PHer, a prolific poster amongst us (Not CW7, he deserves MND) told of his son's muscle wasting disease, a life changing and sad turn of events... I forget whose life changed, though
Wasn't you, was it fella?
Indeed it is, my son has a Duchenne muscular dystrophy.Wasn't you, was it fella?
stty disease - it killed my uncle when in his early fifties, and a good friend two years ago - he was in his thirties. It has always struck me as an incredibly unfair way to go, in that while your body wastes away, your brain is unaffected. Roll on a cure, but I fear it is a long way away.
Good luck to your friend, but I would be heading to Switzerland, before I couldn't.
tty disease - it killed my uncle when in his early fifties, and a good friend two years ago - he was in his thirties. It has always struck me as an incredibly unfair way to go, in that while your body wastes away, your brain is unaffected. Roll on a cure, but I fear it is a long way away.Good luck to your friend, but I would be heading to Switzerland, before I couldn't.
ClaphamGT3 said:
MND is a wickedly cruel disease; imagine your physical functions progressively shutting down, robbing you of mobility, bodily function and dignity and, all the while, knowing perfectly well what is happening. Imagine not being able to wash yourself, feed yourself, dress yourself or even attend to your own lavatorial needs. Imagine knowing that you will - sooner or later - die a horrible & lingering death.
My Godfather died from familial MND at the age of 46. His father and uncle both died of it in their early 50s. One of his two daughters died of it at 42 and his second daughter is now in the late stages of the illness at 45.
I've watched all of them go through it and - believe you me - you wouldnt wish it on your worst enemy.
If it were me it'd be a one way ticket to Switzerland as soon as I'd got my affairs in order after diagnosis
Familial MND? sMy Godfather died from familial MND at the age of 46. His father and uncle both died of it in their early 50s. One of his two daughters died of it at 42 and his second daughter is now in the late stages of the illness at 45.
I've watched all of them go through it and - believe you me - you wouldnt wish it on your worst enemy.
If it were me it'd be a one way ticket to Switzerland as soon as I'd got my affairs in order after diagnosis
t that's a real bd, hadn't heard of that. Really really sorry to hear it, hope to g*d you/your kids haven't got it.That said I live with a full set of the things you describe above, also getting worse over time and with an inevitable end (at an as yet undetermined point in the future) - it's not exactly a picnic all day every day but I do feel that I have, and can continue to have, a perfectly good quality of life, which is to say that I am comfortable, safe, not left to loneliness or boredom, can find things that interest me and keep my mind busy... the next big thing I'm fearing is the loss of is my ability to drive but with modern technology that's actually going to be a VERY long way off, I trialled an electronic steering system a few months ago that can be operated with a fingertip (Spacedrive system) - it was completely amazing and I'll be applying for funding when I get my arse in gear. Pun unintended.
People often mix up functional loss - impairment, that is - and quality of life. You can have massive/total impairment - think Prof. Hawking - and fantastic quality of life, or minimal/no impairment and a terrible quality of life. They're not tied together the way a lot of healthy, non-disabled people believe them to be. People fear functional loss mistakenly, I think, in the most part - what you really ought to be scared of are the avoidable things - s
t care, isolation, boredom, decisions being made against your wishes. If at some point in my future I need to add technology-assisted breathing to the (to varying degrees) technology-assisted eating, moving, pissing and communicating it won't be the tragedy that most people would assume.
The bugger with MND is that if you're unlucky it progresses so fast that you never have time to adjust to one new problem or need before the next comes along - I think that's the source of a lot of the distress, rather than just the simple fact of the worsening disability. It's the reason why (for example) guys with DMD like Sheets' lad tend to be active and well-adjusted and lead no less happy and fulfilled lives than anybody else - it changes much more slowly, so you have plenty of time to get on with living your life inbetween dealing with new issues as they arise.
Got a mate around my age (26) with a variant of it who uses a ventilator by mask at night now, and for rests during the day, has gone to Glastonbury every year for the past 10, works, drives a nice van (much nicer than mine!), has loving partner, gets more sex in a month than I have in a year etc etc...
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