Making memories for our young family as we live with Motor Neurone & Fabry's Disease

How do I survive with MND

March 10th, 2017

Survive is probably not the best word to use, more like luck is on my side.  I am fortunate to be declining at a steady rate; unfortunately others have come and gone.

A lot of people say I look well and I guess given the circumstances I do.

It’s really how I manage to keep looking well I wanted to speak about.  I have determination to last as long as I can, I have two gorgeous children I want to see grow up, and I hear a few folk say, not likely.  Well given I have had mnd for 7 ¼ years I think I am plodding on rather well.

I have an amazing wife in Liz who is the back bone behind our family, like I fight against mnd daily, Liz fights for equipment, services and equality for me. Just a few examples are my new computer voice, electric wheelchairs and our van.

But then there is outside support we receive like Dove house, Marie cure nurses for night support so Liz can get a full night’s sleep.

Tom my physio who keeps me moving on a weekly basis including the hydrotherapy pool.

I have a barrage of health professionals doing their best to keep a sinking ship from going under.

All of this you may expect in today’s world, but not everyone in my position gets all this.

There is then the battle of care agencies, again Liz has dealt with this and now we have a team of carers, Thelma, Rosie and Dannica pictured below. We employ all three, they are for most of the time my legs and arms, without them life would be so much different. Liz is more than capable of doing everything but it is massively time consuming and that’s without putting a 3 and a 5 year old into the mix, At least they can feed themselves. Our carers are now part of the family.

Simple scenario is when are out for a while and I need the loo, I need help to toilet so what do you do with two small children?  If we don’t have any one else!

All carers do an amazing job but mine are extra special.  They help to keep me positive and they all have a great sense of humour.  This to me is vital to keeping going. With having carers it does mean that Liz can spend time been a wife and a mother, we said in sickness and in health when we married but I never expected Liz to have to do everything for me.  Indeed no one should have to do that but thankfully there are some nice people who want to do it for a job.

I also visit Beverley leisure centre, where all the staff are great but especially the guys who help me to exercise also pictured below Andy, Paul, James and Danny. In their words, fold me like an envelope, with lots of stretching.  Also it’s great to get out and the banter is even better.

So in a short, the way I survive is simple a lot of help from some very nice people.


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