Posted by: mads04 | August 15, 2014

The tears and laughter of MND/ALS

Having a terminal illness with young children is what hurts me more than anything MND can throw at me. I can take being told I’m going to die but I can’t handle telling my kids which is why we’ve never told them the full extent of MND. My little girl is 5 and she was 1 when I was diagnosed so she doesn’t know life without MND. I wish that wasn’t the case and it’s something that breaks my heart, my kids will look back in the future with MND firmly in their minds. I fuckin hate that thought but unfortunately that’s the way it is. My daughter takes it in her stride though, children have amazing abilities to adapt and she’s always willing to help me flushing my peg tube and telling me “It’ll get better your belly Dad won’t it?” I was taking her to bed the other night and she asks me “Dad, why can’t you talk properly?” “I’m tired tonight babes” I replied. “Well you seem to be tired every night dad” nothing like a 5 year old to put you in you’re place.

Were lucky in that the kids school’s have been brilliant with us from the minute we explained our situation to them. They’ve never questioned us when we’ve been away during term time, always seeing the bigger picture which is important to us as a family. The last thing you need is any extra worries or stress because trust me that comes from other people who don’t see the bigger picture.

I had a letter a couple of years ago from the department of works and pensions, obviously not being able to work our lovely government grant me a massive £50 a week to live on (Wow, bet the kids can’t wait for Christmas!!) anyway this letter said I had to go to a back to work interview which involved wether I could go back to work or not! Seriously what fuckin part of terminal illness don’t they get?? As I was sitting in the waiting room looking around thinking what the fuck am I doing here? A woman came in called my name and explained there’d been a mistake and I didn’t have to go through with the interview now! Bearing in mind Jayne had to take a day off work to go with me and they’d just wasted a day of my precious time because some gobshite couldn’t be arsed doing their job properly! MND Problems at its best there!!

Raising awareness for MND/ALS/LouGehrigs disease (Seriously, just give it one name!) is something I have worked tirelessly on these past few years wether it be through football, Boxing, Mixed martial arts, jumping out of planes, running or music but it seems I might have to throw a bucket of ice over my head to join a growing group of people who are doing this as part of the ALS ice bucket challenge which kicked off in America by a man called Peter Frates. It’s taken America by storm and quadrupled donations over there which is fantastic and hopefully brings a cure nearer. I’d like to thank Peter who’s a true ALS/MND Warrior and everyone else who got involved, it really has made a difference. Two of my friends who are relentless in their fundraising and awareness for Mnd have set the same challenge up in the UK.

http://www.justgiving.com/icebucket4mnd

https://www.youtube.com/channel/UCv4r6z5MJ_R0Je9Vzd_YxpA/videos

Here’s a couple of links if you want to get involved. Well done Paula and Richard true campaigners x

A major part of my awareness campaign ends next month with a 100 miles with MND. This has caused arguments, tears, sadness and laughter over the last few years but I’ve loved every minute of it. Arguments with my family (mainly Jayne) about pushing myself when they felt I was doing more damage than good to my body when doing marathons, Tears from sharing moments I never dreamt possible before MND, especially crossing the finish line with Keith and also meeting a true MND Warrior Eric Rivers after the first London marathon and his very special wife Davina and family. Sadness from seeing people with MND who have sadly died during this time (far to many) and laughter from the antics and fun I’ve had whilst putting my body on the line for the cause!! Only last night Willy and Peter were recalling their horrific memories from the Liverpool marathon about being in agony for days after, whilst I was ok. That will always bring a smile to my face!!

There will be about 25 of us who will be doing the English half marathon next month and I’d be grateful to anyone who could supply us with MNDA T shirts. Mostly large because there’s a few salad dodgers in our firm!!

Thanks again for all your support and don’t stop believing!! A cure is out there.

Keep smiling

To be continued….

Mark #100MilesWithMND

P.S. You mightn’t have many triumphs in life, make the most of them….

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Responses

  1. Great photos and encouraging words! As always, thanks Mark for sharing your heart ~ You’re a MND Hero!!!

  2. Great memories there. Love it


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