Ian Anthony Griffiths's Blog (12)

8 Point Plan to coping with DMD for parents

Everyone knows there's no real guide out there for parents to deal with

DMD. So heres my humble 8 point plan to nudge you in the right

direction. Please read below;

8 point plan to coping with DMD for parents.

1, Despite everything stay as positive as you can but cry when you need too (this goes for your child with DMD too!). Holding it inside

builds tension and can lead to arguments. Let out the bad feelings,

comfort each other and move on without… Continue

Added by Ian Anthony Griffiths on November 16, 2010 at 2:25pm — 10 Comments

My autobiography ready for sale!!!

Hi everyone,

Over the past year I wrote my autobiography called DMD Life art & me and it's now ready for sale!.

Heres my write up of the book;

"IAN has Duchenne Muscular Dystrophy the doctor tells my parents, a severe, fatal muscle-wasting disease that will lead to an early death. This is a chronicle of the first twenty five years of my

life living with DMD read through as my ability to walk…


Added by Ian Anthony Griffiths on October 26, 2010 at 3:30pm — 1 Comment

Lets do some self counsel......

I posted this with a British stance but I think it's relevant over in the states.

Firstly this is for the older guys with DMD a very overlooked group within the health service.

Now I'm not saying lay yourselves to far open as this is a public forum but we can give some outsiders a touch of our own introspection.

I know that a lot of us are in a state of detirmined on the whole positivity, but I want us to peel away the bravado we all set up and… Continue

Added by Ian Anthony Griffiths on October 23, 2010 at 5:29pm — 1 Comment

How to speak with One Voice?

Ok so I had dream about how to speak with one voice..... we don't.... thats right no 'One' person can.

The Duchenne community is too diverse with many boys/girls at different paths and points along our journey.

So I thought lets USE all the different boys/girls to make our One Voice actually work. I got some inspiration from how cancer charities approach fundraising.

So what I thought is to have young boys then the teens then the adults and a girl on an advert saying… Continue

Added by Ian Anthony Griffiths on August 6, 2010 at 10:30am — 12 Comments

I'll tell you what strength is....

For any boys or indeed girls with DMD what to do if some bully or ignorant person says you're 'weak',

You can say I'll tell you what strength is,

Strength is seeing your muscles waste away but still smiling!

Strength is missing out on things everyone else takes for granted but saying hey, whatever!

Strength is out thinking small minded people and coming up with a new way to do something!

Strength is seeing your wheelchair as an extension of your… Continue

Added by Ian Anthony Griffiths on June 21, 2010 at 5:39pm — 9 Comments

Thoughts lately

Lately I keep getting dreams or visions in my mind about holding my own child. Just like any other guy I think about having my own family. I dream of looking into the eyes of a little baby boy who is resting in my arms looking so innocent and looking like me (poor kid lol). Then my mind brings me down to Earth.

I realize I would need a female partner to make that happen. I want to get married before we'd make a family of our own. The problem is that I'm worried it will never happen. I… Continue

Added by Ian Anthony Griffiths on June 14, 2010 at 7:58pm — 1 Comment

On the level, opening up.....

Fed up of people telling me how to feel, how to be positive.

Sometimes I am, hiding my feelings under that thin veneer of a laid back

jokey positive person.

Other times I'm in a depth of darkness, lost and fighting my way out of


How do I really feel, I'm dying to be free of this wretched body,

I wanna do things, play guitars, properly hold someone close, make love to

someone special, go for quiet runs in the park, stand in a tranquil… Continue

Added by Ian Anthony Griffiths on May 26, 2010 at 8:24pm — 7 Comments

From Happiness to Dispair

Well just as I expounded my happiness I had to ruin it.

Sadly I've had to split with Sarah. Too many painful problems and difficulties needed to be overcome and we both decided it wasn't going to work out.

I am doomed with relationships I reckon. DMD often gets in the way. No matter what we say or think it does physically stop us doing stuff. When all you want to do is hug someone you can't, how are you supposed to feel about such things?

I don't get… Continue

Added by Ian Anthony Griffiths on May 22, 2010 at 8:26pm — 3 Comments

I found my Happiness

I found my Happiness....And her name is Sarah.

Well in March something magnificant happened I met this wonderful amazing loving glorious lady on Facebook. We got to know each and now almost seven weeks later are getting on famously. We've met a few times in person and had amazing times and Awesome fun. Playing music and being close. Holding each other for precious moments.

I had thought before that I would die alone never being loved. After many tears and lonely nights and… Continue

Added by Ian Anthony Griffiths on May 13, 2010 at 3:38pm — 15 Comments

Feeling like Cargo?

As a 25 year old with DMD you're going to be moved around a lot. There's a sling on me all day, and I'll need to moved out of bed, wheelchairs and off the toilet, everyday. With all this moving, and being 'plonked' into the chair or whatever, you can feel a bit like cargo, a cardboard box full of spanners. Sometimes arms get grazed, feet get whacked and you can feel less like a person. Don't get me wrong my mum does a supreme job, but sometimes it's a bit of rush for her, having to cook, clean,… Continue

Added by Ian Anthony Griffiths on March 26, 2010 at 2:14pm — 8 Comments

An hard days Night...

Not many know my nightly nightmares with suction but I just wanted to share my experiences to see if anyone can relate or just write it down to get it out of my system.

So every night (barring ten odd days in a year) before bed I and my mother have 1 maybe 1 and a 1/2 hours of chest suctioning before we can even contemplate getting in an actual bed. I don't look forward to it ever because I'm ready for sleeping. So at approx. 1:30am i shut down the comp for bed then i go upstairs in… Continue

Added by Ian Anthony Griffiths on March 18, 2010 at 9:47pm — 7 Comments

It only takes one thing....

Reading through my facebook updates as most of us do usually is a fun process of catching up with friends (most of mine from the Duchenne scene) and putting our ideas up for all to see.

Tonight I was reading through as normal but one sentence really struck me and hit hard. It was mentioning hugs and kissing. Somehow tonight I immediately thought of never having been kissed, I thought this may not happen either as im increasingly stuck at home. It made me feel so awful that I quietly… Continue

Added by Ian Anthony Griffiths on March 15, 2010 at 8:27pm — 2 Comments

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