Rob Burrow: My Year With MND - BBC Two

[Music] [Music] this is gorgeous though who needs gran canary the number of people opposition parents and that they always used to say oh he's good he's that rob but he's never gonna make it because he's not big enough they just knew that if he got the ball and they set off running they weren't going to catch it [Applause] rob just always treated me like a princess and knew there was anybody that i was going to spend the rest of my time with it was going to be wrong i'm very lucky to be involved in a you know a special group of players around the career and you know this is the fairytale ending the challenge that's been laid down now he will take it head on and fight it and attack it like he has his or ruby career i'm still transitioning from not being diagnosed to finding out and coming to terms with a disease where there's no cure you know i have too many reasons to live i'm not giving in till my last breath [Applause] [Music] seventeen glorious seasons with leeds rhinos and rob burrow the smallest man on the pitch became a giant of the game two years into a retirement that promised sunny holidays and more time with the family he was diagnosed with motor neurone disease there is no treatment there is no cure rob decided to use his rugby fame to show everyone what life is like with mnd then rob and his family had to cope with a global pandemic so i've not left my house over till wait now and i mean when my family give me chance to smell some coins i'm with them [Music] rob and lindsay childhood sweethearts had been together for 20 years almost [Music] i was a bit shy at first so i stood him up the first time so we never actually went on the date the first time you stood him up yeah then we got in touch through again through mutual friends and we went to the pictures and and that was it really and that was age 15 and you know we've been together ever since [Music] was that our player of the year dinner rob got up to present the academy player of the year award and straight away and i knew someone wasn't right what can i say which probably hadn't already been said about him um a real competitor um doesn't like losing will win at any cost his family has noticed that he was slowing his speech and and i didn't really think that much of it at the time i'm not sure whether it was me or kev that got to him i said you don't seem like you will and he said oh no no i'm okay i said you're not you know you're not doing something you're not i no no i'm okay i'm okay i've got an appointment with the doctor i knew rob had this specialist appointment i think the concern for all of us was you know rob played the game like he did but man he took quite a few head injuries and that certainly it's something that played in my mind we need to get this checked it got to about half past seven and i've not earned from rob dropped him a text and then received the bombshell back so um they just um said um it's not good news um sorry to tell you that sorry and then you ask the question of how long and you're told you know a year to two years you know one of the first things that rob said to me was so good it was me and not the kids and you know that's what he was bothered about [Music] at the moment the challenges are communicating is the biggest is effort for me to you know just hold the conversation mindful our sound to play the sport that we have we've had to be brave but you spend a little bit of time around lindsay you know what brave is she's effectively his carer now rob's going to get to a stage where he's probably not going to be able to walk he's not going to be able to talk um you know just to have his independence taken away from him that's when a friendship started robert had been 12 i'd have been 14 and he's a good good mate montenum disease i perhaps didn't realize some of the facts how quickly it can grab older people um sort of the process that they go through is really really sad so sorry [Music] when rob was diagnosed we was you know we were told well that's basically it we'll refer you to the mnd team and it's all about palliative care now you know there's there is no treatment there is no cure you know this has never been about rob this is about raising awareness for other people that have this you know horrible horrible disease [Music] now there are quite a few newspapers talking about this this morning about the england and leeds rhinos rugby league player rob burrow he has revealed that he has motor neuron disease he's been speaking about the shock of this diagnosis and of course the inspiration he's been taking from you know i'm really positive and intended to be throughout the journey must be tough on you i'm your wife though yeah it is that's the emotional side um you know i suppose you have good days bad days but um yeah to be in that room when he was clearly choked upset as you'd expect a couple of deep breaths um yeah um that i'm found come on jackson let's go we got two diamond milks we don't know an awful lot about motor neurons disease and what we do know isn't good and are worried for him i worried for lindsay knew we had knew he had you know two daughters young jackson you know a young family you start to think about what the future holds foreign [Music] covid restrictions stopped rob coming to hospital this was his first visit for months you're losing your ability to speak to swallow to move to breathe and then you know you're trapped in this body it is it is very cruel and you're totally aware of what's happening to you it's heartbreaking i view it as a privilege and an honor how many jobs are there in which strangers will welcome you into their lives when they are at the most vulnerable and fragile underfeeding tube is that something that you said yeah why do you say that i think rob sees it as a way of giving in and then i think also rob won't you know he'll fight this disease for us for as long as he can and i think he doesn't want anything medical you know the less intervention the better and i think he sees it as a sign of weakness and a sign of giving into to mnd as things progress or ask things deteriorate you know you would like to be cared for at home this is am i right in my understanding yeah telling somebody that they have a life limiting condition is difficult and on top of it when you say that you do not have a cure i think that is that is really tough so you know i mean when i tell them um i have symptom control medications i have some quality of life supportive measures you know uh to offer but not be not having that cure not being able to take away the disease is difficult it is very tough if you'd like to have a drink and if it's all right with you could i possibly just have a little feel of your throat muscles okay all right because it's that muscle movement that protects your airway when you're swallowing because if not things could go onto your chest rather than down your food bag so we've got some nice movement there it's it's all quite brisk [Music] patients would come to this clinic would see myself a neurologist would see a specialist nurse would get some breathing tests done would see occupational therapists physiotherapists a wheelchair therapist a speech and language therapist a dietitian and a palliative care consultant so so there are quite a few people who will actually provide input but the beauty of this is that then the patients don't have to make multiple visits to the hospitals and on one day we can all put our heads together and create a care plan for the patient i think a one-stop shop is quite a nice description for it we'll switch on this side okay that's the on button so give us give it a try and the good thing about that is you just need a tiny space to move around in it the conversations are are difficult they're difficult for patients they're difficult for families and they're difficult for the medical and nursing and other other professionals who are involved in caring for these patients any other house has moved yeah i think just wanting to do things with the kids and you know the realization that you know you can't go and kick a ball with jackson or you can you know change jackson's nappy or yeah things like that that that's the hard part for us i think and he's always been such a hands-on dad you know he's done things with the kids it was taken into play groups and things and and that's tough for you isn't it i think yeah yeah um seeing him today was um was difficult because yes he has he has lost a lot of weight and his speech does appear to have deteriorated a bit but as always his spirit is great plans for a dream family holiday in florida were abandoned still time together anywhere is precious look at that boy he's so good isn't he great the movie permanently moment [Music] the training that he's had at all levels but particularly at professional level the train a lot more on the psychological parts of the game and i think that prepared him um but how anybody can prepare for something like mnd i don't think anybody knows i couldn't watch rugby no after i mean i i've always loved rugby but then when i i did i i i blamed it is it all the knocks he's had because the retinas five to ten percent it can be inherited so you're looking back over your family as anybody ever on both sides and uh no no and then you go through is it is it rugby is it our fault that it played [Music] we've been proud of everything that allah's family's done but what rob's achieved um but i've never felt as proud as i don't know [Applause] jeff isn't alone teammates opponents and stars of other sports have rallied to fundraise in the hope the disease can be cured nagging at the back of everyone's mind sport does seem to be particularly affected by mnd inspirational world cup captain eust van der vest hazen a superstar of the game died from mnd in 2017 he was 45. 15 years ago fernando rixon was a hero for rangers fans he was 43 when he died and still the toll grows scottish international doddy weir was diagnosed in 2017 ever since he has continued the fight against mnd in 2018 footballer stephen darby was diagnosed together with rob they are now a team facing an opponent they cannot outrun when i saw rob's diagnosis i was devastated for him but i was angry as well because i knew the processes and that you would have to go through rob would have questions for the doctors but i knew at the same time they wouldn't have any answers for them or they say no treatments or no cure i've seen all of you show tremendous grit and determination on the pitch do you think that is something that is helping you now it's about like a game in some sort of way we're here to try and beat m and d and the only we're going to win is for our collective effort with the boys here and the charities and fundraisers let's work together and and fun because us being involved in teamwork understand it the bigger the team the better the result rob i know one of the things that you want to do is you want your children to remember how you speak you don't you think you know when your voice is gone you've taken practical steps about that haven't you yeah um a service offered by the mda association is voice banking obviously the early effect of me is my voice and the muscles around the throat um so i'm pretty keen to recall my voice um unfortunately there i can't really speak this is nothing like my voice was but hopefully through lots of interviews and audio you know i can tell the kids off and still do that you know and tell them i love them you know rob this is your chance any voice accent you want this is your time to be scholarships gentlemen thank you very much indeed thank you thank you do you want a drink now come on [Music] doddy said it i think it resonated with robin it stuck with him for guys like you and i rob we've got this rugby family this support network but what about the porstman what about the bricklayer what about the guy who works in a factory five days a week i think for the pair of them to be able to raise awareness raise much needed funds get support for people who are who don't have that network they do [Music] there was a group of us that took on the three peaks and which is three big hills mountains whatever you want to call them big things yeah why are you doing this tonight um [Music] whenever you're around rob there's fun there's laughter uh there's jokes usually at my expense or some other some other big blow up because what what he lacked in size he he more than made up for in his wit and his sharpness it's important people know that he's fun to be around there were people doing fundraising left right and center just to see it all was uh amazing so many people wanted to help so many people just wanted to show their support so i thought right well i don't want to miss an opportunity of keeping that counter ticking over so that there was still some funds coming in and yeah i give it a bastion and did another marathon for him yes high five well we were determined to do it in under 10 hours so we were sort of struggling towards the last bit so we were sort of you know 20 minutes off and we're like right we're going to have to run this now to finish under 10 hours so we ran the last last quarter of a mile and and just as i came as we were coming down the hill there was i saw macy and mayor and and so it was great to see them and then just obviously seeing rob there and you know it was just such an emotional time i think for both of us [Laughter] how proud [Music] it makes you reflect on your own career and the injuries you sustain and it's something i think about but very quickly answer um would i change anything no do i enjoy seeing people who i love and i care about suffer in this way i i hate it i hate seeing rob suffer everybody does look at the head injuries that we get now the concussions you know is a question that needs to be asked is there a link between sport and mnd we don't know is there a link between certain supplements or certain foods you know why do some professional sports people get it and others don't we don't have an answer to that as yet there's been some really high profile cases now it would be avid accord and i understand why the question is paused and why it's asked but um that's why we need so much research enters the field five minutes to go i wouldn't let this put people off sport you know there are many youngsters who would be wanting to make careers in uh in sport and who are involved with sport and i think that that should continue we watched it on the tv it gave me ghosts from goosebumps you know watching it right from the start rob's ambition has been to support other people like him with mnd so how's mnd affected you uh well i was i was diagnosed with a form of m d called progressive muscular atrophy in 2018. let yourself you must sit there and think what the hell have i done to deserve this it was so inspiring is seeing how you go about life in such a positive manner creating such great memories for your kids you know it's it's great to see right i'll let you clack on all right then yeah awesome thing take care [Music] is this where it all started it is yeah you know from being on this pitch and then ending up in wembley is remarkable i hope other parents go through a similar journey that we've gone through but not when it got to the diagnosis you remember the field you remember rob when he were a little lad sidestepping here literally here and going over um we remember it like it was yesterday you know and um it brings back a lot of memories rob's granddad bob was his number one fan he he wants his granddad bob mentioned if it's possible he wouldn't miss a match woody jeff he'd be here in all weathers uh stood there cheering him on and and he was so proud do you ever look back and think the punishing the the brutality of the game did that ever affect him you just have to put it down to being bad luck you know people there's women that's never played sport that's got it there's men that's never played the sport we'll find a cure and i want rob to be there finding it [Music] we wouldn't want people to to have any doubts about playing any sports rugby league union or football they're socializing that's just as important as it's an important part of life you know if you don't if you don't have teammates it can get lonely it's a motor neuron disease family they've got to be strong we've got to get the message out and get the government and everybody to just pay more attention to this most wonderful son have a great birthday love mama and dad that grandma and grandfather there is hope there's rail up and when he got diagnosed somebody we read somewhere that the reckon 2020 is going to be a breakthrough year [Applause] [Music] hello come on fella you got your phone with you yes yeah good lad i can't wait to hear this over the last 12 months you have raised awareness you have raised funds i hope you feel immensely proud of everything you've done so far [Music] i'm very grateful for the awareness that bbc breakfasts are given to mnd [Music] it's been an absolute privilege to spend time with you and the family and everybody connected with you you are very much living with mnd i am determined to be this disease and it starts with have a strong mindset you certainly have that rob you are an inspiration to us all i think we all want to say to you how proud we are to be involved with you and the family and how grateful we are to get to spend this time with you we love working with you and we love coming here and spending time with you so thank you very very very much from the bottom of my heart [Music] this is the best card that this is the best card it's got these pictures on it's got some money inside it [Music] foreign [Music] you

Channel: ALS Liga - Ligue SLA

Views: 33,617

Rating: 4.9376621 out of 5

Keywords: ALS, amyotrofe lateraal sclerose, amyotrophic lateral sclerosis, SLA, MND, Motor Neuron Disease, Lou Gehrig's disease, ALS Liga, onderzoek, research, Health (Industry), Television, Amyotrophe, Lateraal, Sclerose, Sclerosis, Awareness, lateral, Amyotrofe, Amyotrophic, België, Belgium, TV, Rob Burrow, BBC, rugby

Id: y-y014GAhKo

Length: 29min 15sec (1755 seconds)

Published: Wed Oct 28 2020