Rob Burrows( Motor Neurone Disease)

[ziggyram59]

Got up at 6.25 this morning and put BBC Breakfast News on and there was a half hour programme about Rob and living with MND it was heart breaking to watch and hard as well, there was one point when one of the doctor's was talking to him about the end and how he felt about it and he just smiled and said he didn't want anyone talking negative like that. You think you have problems in life and feel a bit down then programmes like that show us how lucky we are. I'm not ashamed to say I had tears rolling down my cheeks when his wife/mum/dad were trying to talk about life without him. 

[FlyBritishMidland]

You can’t fail to be moved watching that.  I think the BBC have done a great job following his story since his diagnosis, including Doddie Weir (RIP) and Stephen Darby.  They’ve done several pieces on Rob, his family and in particular the efforts and support of Kevin Sinfield - everyone needs a friend like him.  It’s certainly helped to raise awareness of MND.

[Wolfie]

I wanted to watch that but had to turn it off after 10 minutes.

Too many memories of what it did to my father in law a few years ago. In hindsight, he was "lucky" because we were told he might have 2-3 years to live but then this horrible condition robbed him of his ability to walk, move, speak and then finally breathe within 3 months from diagnosis. The family couldn't make adaptations to the house fast enough for them to be of any use.

This must have done some real good in terms of awareness and fund raising for research, though.

[Malagaram]

There was an article on Derbylive this week showing his wife,Lindsey lifting Rob physically with her arms under his shoulders,that woman is a Saint as are all carers who look after their loved ones,these are the people who need help from Rishi Sunak,not the billions being spent housing illegal immigrants

[ziggyram59]

11 hours ago, Wolfie said:

I wanted to watch that but had to turn it off after 10 minutes.

Too many memories of what it did to my father in law a few years ago. In hindsight, he was "lucky" because we were told he might have 2-3 years to live but then this horrible condition robbed him of his ability to walk, move, speak and then finally breathe within 3 months from diagnosis. The family couldn't make adaptations to the house fast enough for them to be of any use.

This must have done some real good in terms of awareness and fund raising for research, though.

Wolfie I'm really sorry to hear of what happened to your Father In Law. My Uncle had the same condition but died within a year. 

[Ramzabac]

I am the guy organising the DCFC Quiz Night for MND details of which are on the main thread. Likewise the Rob Burrow story has me weeping regularly. MND is a horrible disease for which there is currently no treatment, although more research is now being done thanks to the profile it now has thanks to Rob Burrow, Doddie Weir etc. There is real hope of a treatment by 2030, but the funds need to keep flowing in and in the meantime, people with MND require our support. 

Because there is anecdotal evidence of a greater likelihood of getting MND as an elite sportsperson, this is now being researched. There is a long list going back to Don Revie, our own Rob Hindmarch, latterly Marcus Stewart, Stephen Darby and the Glos rugby player Ed Slater.

Whilst there are only about 5,000 people at any one time  in the UK with MND, this is partly because only 50% of sufferers survive for more than 2 years, many pass within a few months. Only 2% of people have it as a long term condition e.g. Stephen Hawkin. Our guest of honour at the quiz is former Bemrose headteacher Richard Feist who is in this 2% category. He is in a wheelchair, but retains the power of speech.

I got involved as an MND volunteer, because my old schoolmate Martin Kelly from John Port School was diagnosed in 2017.  He battles on with humour and good grace and as our second guest of honour, will watch as much of the quiz as he can by facetime from his home. 

Motor Neurone Disease gradually takes away from you the things that are most important. Since being diagnosed in 2017 he has lost the use of his legs and arms. Martin can no longer speak, struggles to swallow and is fed through a tube directly into his stomach. He communicates through his tablet and the eyegaze system. But he is still the most positive person I know. 

One of the last games he could get to was the Villa play-off final. Most sadly, he won’t be able to take his grandchildren to Derby County matches. In October 2019 I took him to his last game at Pride Park, when we sat in the wheelchair section and two Tom Lawrence goals beat Luton. That game is now elevated above the Real Madrid match as the best Rams home game I have ever been at. 

Finally an update on the quiz; With David Clowes, Charles Hanson and at least 8 ex-players attending we have had great support. I just want to sell the last 4 tables for what will be a great night. Any help is welcome. 

“MND is not incurable, it’s underfunded”- Doddie Weir

[uttoxram75]

My best mate died of MND 18 months ago.

He lasted 6 years from diagnosis to death. His son watched him die slowly from the age of 9. Fuckin miserable.

You can't sugar coat it. Its horrendous, its the cruellest, most horrendous death you could imagine.