Posted by: mads04 | December 9, 2014

Rebel without a cure

I’ve never been one for giving up whether it be on the footy pitch or in life and especially now Mnd is involved. If I believe in something I’ll fight for it and some might say I’m a pain in the arse when it comes to Mnd but I only fight for it because some people with Mnd can’t and I hate seeing people in the same situation as me struggling emotionally, physically mentally and financially. There’s people at the Mnd association who definitely think I’m a pain in the arse but I’m not really arsed about it because everything I’ve said in the past I stand by. My mates always give me loads saying I’m a rebel with the association but I just see it as being honest.

Every year the MND ALS people of the world have a meeting (Symposium) to discuss how the years gone in terms of research etc. Its sad to hear that so many trials have failed. The world has lost to many MND warriors this year and that’s a fact. I tweeted last week during the symposium that it all seems to be aimed at medical professionals and not people living with MND using big words and jargon so the MND research page on Twitter tweeted me a blog saying hope this breaks it down a bit better Mark, sound I thought, then I started reading it and realised that whoever tweets for the research team had overdosed on LSD because they were linking front temporal dementia in MND to Palm trees and pyramids!! What the fuck? I thought, is this spaceman who tweeted me this link sittin in his/her office listening to Lucy in the sky with diamonds? In a psychedelic state of mind with flowers in their hair? Confused? You should be because I fuckin was and I’ve had MND for four years now and not once have I thought about pyramids and palm trees when it comes to this fuckin awful illness.

Theres a saying in life that the people who claim to be highly educated have no common sense, well I’ve found that out more than ever during the last four years. I’ve met people with letters after their name (usually D.I.C.K or T.I.T) who might very well know the square route of a circle!, but haven’t got a fuckin clue when it comes to living in the real world. The only square I know by the way is Albert!!

They also sent me a link to say they revealed a snood to help people living with MND keep their neck muscles warm and it is a great idea, My mate Keith has been using a snood for years and I’ve got one built into my coat which I’ve been using for two years. I might look like an absolute bell-end but I’m not trying to be a fashion icon here!!! it’s taken all the clever people till now to figure it out though!

The ice bucket challenge money will go towards MND research but I just hope the powers that be use a bit of common sense. No matter how much dough you might have you cant buy common sense!!

Keep smiling and stay positive

If you fail you learn if you learn you move forward if you move forward you progress! Not all failures are failures!! Enjoy life.

To be continued….

Mark

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Responses

  1. Hello mark , I stumbled upon your blog from a link on Instagram. You explain this horrible condition so well, I am familiar with it having cared for patients with mnd whilst working as a nurse in a hospice in liverpool. I really hope you have managed to enjoy christmas and new year with your family and now I’m about to sign all the petitions you have promoted. I agree with everything you have said. Working in the nhs is constant battle with red tape and beauracrats that makes caring for patients difficult at times as ensuring paperwork is done is prioritised over care. But that’s the stupid society we live in now. Keep up you fight , you’re spirit is inspiring .

  2. Hi Mark
    Your description is so accurate and the battles with bureaucracy are exhausting!

    I have just spent the last four years, filming a patient with MND, and it is a brutal and relentless process. And I think so many people have absolutely no idea what MND involves.

    All the very best
    LIz


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