#MOTOR Nuerone Disease

[theleaderdotinfo-blog]

SPORTSTALK - Footballers continue to be affected by MOTOR Nuerone Disease has been published at http://www.theleader.info/2019/04/07/footballers-affected-by-motor-nuerone-disease/

New Post has been published on http://www.theleader.info/2019/04/07/footballers-affected-by-motor-nuerone-disease/

SPORTSTALK - Footballers continue to be affected by MOTOR Nuerone Disease

MOTOR Nuerone Disease victim Mel Holden died in 1981 aged 26 - leaving a wife and young family behind. Former Preston North End, Sunderland, Blackpool and Netherlands club PEC Zwolle striker Holden would have celebrated his 64th birthday in August. Holden, who died in 1981, made over 150 career appearances and is one of many people who have lost a young life to MND - an incurable disease. Holden was forced to retire in 1979 while in the Netherlands, having played just 10 games for PEC Zwolle. Two years later, Holden who lived in Penwortham, Preston, my birth City, was dead. Almost four decades since Holden's passing footballer Fernando Ricksen, 42, is in St Andrews Hospice in Airdrie, Scotland, six years after being diagnosed with MND. Former Rangers star Ricksen, who has a property near Valencia, uses a voice-counter to speak. Ricksen, diagnosed in 2013, was told he had 18 months to live. Brave Ricksen continues to fight the disease, and is actively raising awareness about the illness: "I just keep going,” said Ricksen, who has a six year old daughter, Isabella. Ricksen’s second wife, Russian born Veronika, and Isabella, visit him frequently from their Spanish family home, where she had been caring for him. Having washed, dressed and fed him, she is no longer able to provide round-the-clock medical attention, that is now undertaken at St Andrew’s Hospice. Ricksen will spend the remainder of his life there. Isabella, Fernando and Veronika depart in tears - when his wife and daughter return home to Spain after visits. Another footballer diagnosed with MND was Bolton defender Stephen Darby - aged just 29. He announced his retirement in 2018. Former Liverpool prodigy Darby, married to Manchester City defender and England Ladies football team captain Steph Houghton, is receiving support from the Players Football Association (PFA). “I have seen first hand how difficult it has been for Stephen, Steph and his family - but he has conducted himself with a tremendous amount of dignity and bravery. “Stephen has been a credit to his profession. Myself and the PFA will continue to support Stephen in his battle ahead against motor neurone disease," said Matthew Buck from the PFA. Returning to Holden, who played under former England and Manchester United star Sir Bobby Charlton at Preston in the seventies. Deepdale teammate Mike Elwiss told a story of dressing up - as ice cream men - during a team talk! Elwiss recalled when Bobby Charlton arranged a special coaching film, and all the players had to attend. Elwiss and Mel Holden donned white coats, held torches and had an ice cream box each. As the coaching film played in the dark - Elwiss flicked a light switch - and he and Holden announced: 'Choc-ices, crisps, pop-corn, lemonade'. Elwiss, Holden and the players howled with laughter. Charlton was lying on the floor in fits of laughter. A light hearted indelible everlasting memory, taken from a tragic story in the life of MND victim Mel Holden.

[concerningwolves]

What’s your take on writing societies that are incredibly technologically advanced to the point where logically you’d think people with physical disabilities wouldn’t really exist because they can be “fixed” with technology? I remember you said not to write disabled characters that are going to be “fixed”, so how would you reconcile this with a society like that (such as in the story I’m writing)? Love your writing by the way!!

Does Technological Advancement Cancel Out Disabilities?

Advance warning - I have no wish to be harsh, and a lot of this isn’t directed at you personally, Nonny! I do however have many thoughts on this matter, and some of them are anger-based. This is a deeply personal subject.

First off, there is no reason why someone with a disability would be “fixed” if they chose not to. I would like to make it clear that chronic illnesses, terminal illnesses and any conditions that can shorten or drastically alter quality of life are not a part of this issue. Deaf, Blind, Mute, autistic, ADHD and all other neurodivergent people are a whole other group of communities, and should be seen as that rather than “people with disabilities”.

In our world now, there isn’t really any problem with people living with any of the above. I mean, can’t hear? Okay… Sign language, subtitles, maybe speech therapy, a great community. Deafness doesn’t actually destroy someone’s life in the same way as, say, motor nuerone disease. For so many people with these disabilities, they’ve had them since birth and do not know any other way of living - nor do they want to. So then, what would be the point in a super advanced society where technology can do its bit to help, if needed?

Secondly, the suggestion that disabled people become “illogical” or “pointless” in a super technologically advanced world is just… I don’t have the words for how that makes me feel. We’re here, living our lives, learning what we learn and riding out the curveballs life throws us. That won’t change, and never will do. You may as well say that “typical” people become pointless because they could just be replaced by robots.

People are people. I say this so much, and will keep on saying it until everyone realises exactly what that means. In this case - everyone is a valuable member of society. You know that thing they like to teach you in schools, how the world would be boring if we were all the same? It’s so fucking true. If you fix everything and remove all problems, all disabilities, all illnesses, then what would be left for remind us of our humanity? Compassion is an inherent human trait, and we’ve been honing it for literal millenea. Ancient civilizations cared for their disabled people despite living in far more dangerous conditions than we have today. Without it, we’re not “animals” - we’re monsters, like Trump and Stalin and Hitler.

A disability is so much more than what it disables. The lessons that we learn living with a disability are incredible, and the network of people that get involved - doctors, social workers, social justice workers etc - and the lives we touch in return… no technology can replace that. A different way of life leads to new ways of thinking, learning and sharing, and these can be so valuable to society as a whole. Do you know how many actors are autistic? Way more than you think, and it makes them brilliant at their craft. Braille was invented by Louis Braille who was blinded, and not only is it used by the blind community but it also plays a vital role in transferring messages through complex computer systems and sharing code. “Fixing” people will break society. That’ll be it. A huge pool of alternative thinkers, do-ers and inventors will be lost.

Take the idea that an advancement in society = the fixing of things that don’t need to be fixedand throw into the furnace. Kill it. It’s an ableist stance that makes my throat curl in on itself in hatred and anger. Follow what actual people from the disabled communities say, and ignore all the suggestions that technology will make everything perfect. Stamp on the idea of perfect. Tear it to bits. Tune out the abled people trying to have their say in a song that isn’t theirs. Think outside of their boxes.

You can do a lot better than that.

[amaluelmwood]

My Poppa is dying. MND will do that to a person. Part of me is like: sad, tired, stressed, sad, low, SAD, sad, tired, sad Part of me is like: my Poppa is bad ass, he keeps telling jokes that make the carers wonder if they can respond in kind or if they'd get fired for doing so, and he has no shame anymore, like none, at all, he doesn't care, he made my mom and aunt take him to the booze aisle the other day to buy Drambuie and told me 'if I'm going out, I'm going out with a bang, after I have a last drink and last fart, put a lighter to it and WOOMF' Part of me is like: emotional shut down, nope, not doing it, no emotions And part of me is like: he's never going to read my book, there's so much stuff he has left to do, what the fuck, why the fuck did this rare-ass non-inheritable random fucking illness have to strike HIM The doctor used the phrase 'end of life care' and all I've been able to think since is 'wtf' and I'm trying to be helpful, but I don't think I'm doing very well, which just ends up making me feel stupid and guilty, especially because what the hell, mom and my aunt absolutely feel worse, not to mention Poppa must feel even worse than that Which brings me right back to the no emotions, nope, not doing them part