Me and MND
Like anybody that is diagnosed with this disease it is the day that is etched in your memory forever. There always appears to be a common theme among fellow sufferers on how that day progresses.
It was a day like any other day, we had two small preschoolers and my wife Zara was six months pregnant with our third. I had been having problems with my right hand for over a year and with my last visit to the specialist who diagnosed it as writer's cramp! (Although I am left-handed!). Enough was enough and my hand was not getting any better and cramping almost daily, so I asked my Doctor to send me to a Neurologist. Zara was very nervous and I said to her there was nothing to be nervous about ... nothing could have been further from the truth!
After being with the neurologist for only about 20 minutes and having a series of reflex tests he asked us to sit down and just came out with the diagnosis. Although they can never be sure and you were sent to hospital for further tests which are there just to eliminate all other possibilities. I remember quite clearly walking out of the room in the state of complete shock. But the one thing we said to each other was let's attack this head-on accept it for what it is and be pro-active. That is what we have done ever since.
The question you always ask is what is MND also known as Amyotrophic lateral sclerosis (ALS)? http://en.wikipedia.org/wiki/Motor_neurone_disease
After telling my parents the news and having a good cry that night I went to about looking into as much research as I can find in working out is there a strategy to either fight or at least try to slow down the progression so I can spend as much time as I can with my family doing the things that a father should do.
I am just a normal guy with a very normal family that due to our unusual circumstances is now on a very special journey. As some close friends had said to me-‘……in our religion you are very privileged as you now know what you're going to die from and possibly when………’ a little harsh I realise, but at the end of the day we could also be hit by a bus tomorrow!
Once I came to terms with my situation the research began ...
Some of the areas I feel are important to slow this progression down which have helped me:
- It is a mind game ... be positive be strong. If you think you're going to fall over, odds are you will!
- You will have bad days or bad moments-accept them and know that it will pass
- Change your diet-among other things I have had fresh vegetable/fruit juice every day!
- Look into alternative therapies-experiment
- Look into supplements to help support your body to fight this condition.-find a good naturopath and work with them to develop a regime suited to you
- Reduce stress -at least try to
- Enjoy your days for what they are, focus on what you can do not what you have lost
- If possible keep doing what you normally do every day until the you can no longer do it!
- Try to keep one step ahead of your progression ... accept that things will change and be realistic.
- Don't forget your partner/wife/husband they have a lot to cope with-try to understand their situation as well. It's not just the emotional rollercoaster but also the physical demands as you progress.
Please have a look at the MND links page for some inspirational people and ideas that I truly recommend with other definitions and further information. At the time of writing this page I am now two years on from my diagnosis and my power wheelchair is only being used in the weekends, so I can go to the park with my children.
I will update my news and photos area as much as possible to help understand my thoughts and feelings through the different stages of this disease.