Their Story

Thought I would publish Tracy's previous comments in its own blog post for all to read. It gives their account of how this awful disease has effected them:-

As you started all of this to raise awareness I thought I would expand on our experiences to give people a bit of an insight into what living with MND entails. 

Not long before Gareth was diagnosed our family unit was completed and blessed with the arrival of Scarlett in 2009. We were a very active family, Gareth played football, worked hard and every weekend we went out to places as a family enjoying life. Like most people we were grateful that awful things like terminal illnesses were stories from others, we were all fit and healthy. Gareth hardly ever even caught a cold! 

We were a young, very happy family and we thought we had our whole lives together to bring up our children and enjoy our later years together. Having both been divorced and through our share of troubles as individuals, we can both honestly say we had each found our soul mate. 

July 2010 - I'll never forget it because we were out for my 40th birthday and Gareth started slurring his words. Justin - don't know if you remember we were all taking the mickey because Gareth had only had 2 pints!! Mind you he's always been a lightweight.......

Me nagging him to go to the doctor and several very painful tests later, in October 2010 we were given the awful news that he had MND. We suspected before the appointment but were still hopeful that he had had a stroke...imagine that! That's because being diagnosed with MND is one of the worst things you can hear, mainly because no one can give you any hope as there is no cure or effective treatment. 

The best piece of advice we were given at that time by an MND nurse (which I will never forget) is do everything you want to do in life in the next 12 months. 

And that's what we did....travelling around the globe every other month, creating memories for our children and us and doing as much as we could possibly fit in. Looking back I am so glad that we did.

I can't begin to describe everything that has happened to us since then, it would create a book! There's the physical deterioration side that happened much quicker and more aggressively than we could ever have imagined. Within a year Gareth was in a wheelchair, forward another year and he could only move his neck and head.

But there's also the emotional side which I want to share because I feel this is the hardest part to deal with and people cant see it. We have a fantastic team of people advising and caring for Gareth for all of his physical needs but the mental torture he suffers as a result of this disease is impossible to treat.

I've been thinking how to summarise all of this and I thought I'd describe it like this.

From the moment you hear the diagnosis EVERY single day is a day of losses.

I'm sure you can think of the big ones....not seeing your children grow up, get married, go to college, being able to move, to eat, to speak and so on. And they are hard enough to deal with, but there's also the hundreds if not thousands of small ones which crop up continuously and like I said, there's at least one every day. 

Such as....I can't pick up my child anymore, can't comfort my wife when she's upset, can't play football with my son, can't eat at the table with everyone else, can't give my daughter a cuddle, can't scratch my head when it itches, can no longer contribute to a conversation, can't read to my children, go to the toilet without help.......the list is constant and endless. 

So you find yourself in a constant sad, grieving state and although you try and smile, the realisation of the situation, the sadness, the anger, the frustration, the pure injustice of it all never, ever leaves your mind.

And that's where I feel Gareth and I show and find our strength. We don't sit and cry or shout every minute we feel like this, we give each other a knowing look at least once a day and then get on with it the best we can. 

And I've come to the conclusion that quite simply the reason we have the strength to deal with this mental anguish is because of our love for each other. Love isn't all you need but it gives you strength and capabilities you never knew you had.

I'm not looking for sympathy or want to upset people, that's some of our story and I know we're not alone, this disease affects thousands of families every day, all we want to do is help:
- raise awareness....
- to help raise money......
- to fund research.......
- to find a cure.....
- so that other families don't go through this pain.

The reason we have even begun to help raise awareness is because of the amazing friends we have who are prepared to do mad, crazy things like you Justin!! 

To everyone who has supported Justin in any way Thankyou. Please help by sharing our story, talking to people about MND and I hope that one day soon stories like ours will be a thing of the past due to MND. 

Tracy 



Posted by Ghayes to Walking Wales 4 MNDat 21 July 2013 12:35