Posted by: mads04 | October 16, 2014

Dealing with it…

When your diagnosed with MND after going through every test possible to rule everything else out, you’re told to try and take it easy andget as much rest as you can. Yeh right!! Anyone with young kids will tell you rest is a four letter word when your trying to raise a young family!! Rest works for some and with MND being a muscle wasting illness, rest is a fair point. Sometimes by the time your diagnosed it’s taken that long you’ve already started to waste away, so you’re weaker than you were before. This is why we definatley need a quicker diagnosis. It’s just another headache that goes hand in hand with MND. First you have to deal with becoming terminally ill then there’s an introduction to a specialist Dr, MND nurses, Physio, occupational therapist, speech therapist, dietician and a financial expert.

Everyone of these people are there to help you and I’m lucky that I have good people around me, apart from the finance fella who was about as useful as a concrete bouncy castle!!

You’re head is up your arse and that’s putting it kindly. Then you have to deal with telling people, which was the toughest part for me. I’ve always taken things in my stride when something’s bad has happened in my life. I’ve lost me Mum and Dad and I lost one of me best mates, Sway, in a car crash we were both in when we were 18 and it hurt like fuck, I’d grew up with him all me life and it was a terrible time, I just remember the hurt it caused me but more than that the hurt his lovely family were going through, that was the worst part. Especially now I have kids of my own, I couldn’t think of anything worse than losing a child. That incident made me grow up quick, when you’re 18 you’re still a kid basically and every time I’ve had a bad time in my life I always think of Sway and it helps me get through it. RIP Sway always in my thoughts mate!

People react differently to bad situations and I’m not saying I dealt with it better than the next person, fuckin ell an hour after I was diagnosed I was running round the park with my 2 sons with a million and one thoughts racing through my head. If I wouldn’t have dived into raising awareness for this disease I probably wouldn’t be here now but I believe that dealing with MND through keeping myself busy and excercising has helped me cope with having a terminal illness. I work hard when I’m in the swimming pool stretching my body under water an ill be honest there the toughest work outs I’ve ever done but I know they’re doing me good mentally as well as physically. I tried yoga yesterday and today my legs feel stronger than they have for a long time. I wasn’t able to do all the poses but I did what I could and definitely feel better for it. It was hot yoga which is even better for someone with MND. The cold never bothered me before MND but now it scares the shit out of me because the less muscle you have the less natural insulation you have, plus you have to wrap up warm in the winter for fear of a chest infection which for someone with MND is a certain killer.

Dealing with MND is more than a 9-5 job, it’s every minute every hour of every fuckin day. I even dream sometimes that I haven’t got MND then wake up with an itchy nose and realise I can’t fuckin scratch it! People often tell me how inspiring and strong I am. I always tell them the same thing “I’m only as strong as the people around me and I’m just an ordinary lad try’n to survive an extraordinary illness.

Thanks for your constant support I really do appreciate it. Shit happens in life, it’s how we deal with it that defines us.

Keep smiling and enjoy life, we only get one shot at it.

To be continued….



  1. Hi Mark thinking of you mate, keep strong, from O’D (premier security) x

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