View Full Version : MND where did you first here about it.?..

23rd February 2015, 20:43
I have never been able to quite understood why there isn't more time and education spent on MND awareness incorporating schools, company's, meetings, etc just like there is a dementia awareness campaign rolling out for the public to be made more aware. There are Dementia Champions, why can't we have MND champions. I for one would like to make more people aware and would devote so many hours a week to this and I am sure there are many others who would link up.
The first time I became aware of MND I was probably about 15 or 16, it is all rather vague, however I can clearly remember being told ....it eventually means you are locked in your own body but with a very clear mind. That had a profound effect on me and was frightening.
I am sure we were all amazed when the ice bucket challenge came about how many people knew nothing about it and how many still DON'T know that ALS and MND are one of the same.
It is my belief that we need to start with the basics and concentrate on that. By empowering as many volunteers to raise awareness of ALS /MND within schools and working environments. Ok ,over to you now people.

Spring x:

23rd February 2015, 21:10
I'm a dementia friend having received training in the workplace. I don't really know where I first learned of MND but most probably it was hearing about David Niven, although I definitely had no idea what it entailed. The difficulty with MND is the numbers suffering at any one time. Most people could tell you about a relative or friend with dementia but not so many could relate to MND.

Training (even with volunteers) would be costly and I'd be sad to see funding spent on training people who may never meet a person with MND when it could be better spent on the person suffering. It's a difficult one.

23rd February 2015, 21:53
Good point Candle but we did our dementia training en mass which wouldn't cost a lot to do the same for MND. Personally and it is only my belief I think there are many more people suffering from MND than we are lead to believe. I often wonder how many are not diagnosed. X

23rd February 2015, 22:07
You're probably right about the numbers as it takes so long to be diagnosed. I agree training for larger groups would be much more cost effective.

It does feel like you see adverts for so many other conditions and MND is lucky to be mentioned even with all the recent attention. One article even referred to the condition as MS!

23rd February 2015, 22:13
There are just 20 people living with mnd in Norfolk at present and 5000 in the whole country. That is quite a small amount which is why so many people have never heard of it.

23rd February 2015, 22:26
Hi Trevor, my friend from school her hubby has it also a gentleman we know has it, along with my Jim that is three people we KNOW, in a very small county of Cheshire.

23rd February 2015, 22:29
Hi Spring x I remember reading about MND when I was a teenager, although I didn't realise the full extent of how quickly it can affect people, until a few years ago. I was talking to someone who volunteered for the MNDA and was shocked when they explained. Obviously, I didn't realise then what a big part it was destined to play in my life. I think that's a great idea you have and anything to help make life more bearable for people affected by MND has to be good. tc Becky x

25th February 2015, 10:12
My first knowledge was DIY SOS, with Eric Rivers! Such an emotive programme that I still remember saying to Sharyn , how do you cope with that?!
Well we have tried and I still think it as the most evil disease and I wear my MND t shirt with pride at the gym! The trainers have asked for some and people ask questions about the disease and are shocked! It will take time but we are moving forward, our single step on this walk to a cure has begun.
With in a mile radius of us there are/ were 4 people affected with mnd but we never knew.

25th February 2015, 10:37
Due to an interest in Astronomy it was Stephen Hawking for me. The penny didn't drop really until a few years ago though when my Mother got the ALS form of MND in Suffolk.

25th February 2015, 10:44
I've known about the disease since 1970 when my neighbour, who interestingly was the midwife at my birth, developed MND. It never changes it was awful.
Within 3 miles of me there are 6 living with MND and one additional sufferer who has recently died. I am also unsure of the strength of the governments statistics which maybe convienient for them in masking the serious situation or alternatively the statistics are doubtful.

25th February 2015, 11:43
I knew David Niven had it and then Don Revie, the Leeds united and England football manager was diagnosed with it. My Bill was an avid Leeds United fan so we followed his progress - never for one minute thinking this would come to pass! Joycie. Xx

25th February 2015, 12:56
I never heard of mnd ZipÖnever, until I found this site. I heard of ALS, but rarely used here more common is Lou Gehrig disease. If you ask the average person that has not been touched in some way what this illness is all about and itís devastating effects they would have a hard time telling you.

When my dear friend called me saying her local doctor suspected als, I had no idea what it actually was, and had to Google it. MS, Parkinsonís, Alzheimerís these diseases all have a more awareness campaigns then mnd. The IBC was the only public awareness campaign I ever saw for this illness, ever.


25th February 2015, 13:54
During th eight weeks we waited for tests before the diagnosis, we had Googled the symptoms and found MND was a possibility. This ment it was not quite so a shock when we heard the news.

25th February 2015, 14:18
A month before i was dx when a consultant said i had a less than 1% chance of having MND :)

Wise owl
25th February 2015, 14:34
Hi everyone, I 1st knew about m.n.d. When over 24years ago found out about my wife to be 1st husband had passed away from it. We then were involved with local fund raising for the m.n.d.a. Back then my thoughts on m.n.d. We're " wow! What a horrible thing to get" never thinking that all these years later, that I would be diagnosed with the same. My opinion of "it" hasn't changed, but it makes me more determined to help find a cure/help for others in the future.
Now keeping spirits up by keeping an eye on my extended family in the Forum.
It's good to have you all, knowing I'm not on my own.

25th February 2015, 22:18
The first time proper I'd heard of MND was after a couple of months of my partner being tested with nothing positive showing, our GP finally referred to the National Neurological Hospital and the diagnosis was more-or-less instant, I felt glad something had been discovered until I Googled MND and I cried all night .

My first "cultural" reference to a MND like condition would've been watching Star Trek as a kid in the 70's and Captain Pike of the Enterprise - despite it being set way into the future the poor gentleman was lumbered with flashing yes/no lights as his only form of communication


25th February 2015, 23:22
Being a Leeds Utd fan I vaguely remember Don Revie being diagnosed with it in the late 80's I think? I don't think too much was known about the disease at that time? Little did I know it would come to affect my family years later. :(

Regards, Dave..

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