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

My thoughts

August 26th, 2016

One thing has become blatantly obvious over the last few months and that people say how well I look, so this is the basis of this post and to explain how things are really not that easy at all, probably one of the easiest ways to describe how hard life is living with motor neurone disease and how the ever decreasing strength affects my body, the other night while getting ready for bed and it was a simple task of putting my glasses on to watch telly.

Imagine having to use all your strength to simply unfold your glasses, a task that nearly everybody in the world takes for granted yet it makes me smile because it is something else I can still do.

I now have a carer that comes in for an hour on an evening to help me shower and get ready for bed, this was something I really wasn't looking forward to as I have always tried to keep my modesty but in some ways having a complete stranger help me with personal care has been relatively easy, I actually look forward to getting ready for bed in the main fact that it is hassle free and easy and it takes the pressure of Liz and she can concentrate on reading stories to the girls and putting them to bed.

Transferring is becoming a lot harder and now making toileting one of the hardest things to do. I have just got a convene (tube with a bag ), this makes things so much easier but is hard to get used to as i can’t just do it anywhere lol. It is also very hard for Liz to get used to.

The more time passes the more I come to terms with the illness and what the future holds and believe it or not I have Become unafraid of death and this does not scare me anymore it highlights the fact that the most scariest thing is leaving Lilly, Poppy and Liz behind and this I can never come to terms with.

I look at fellow mnd sufferer Simon Adams who is totally Paralyzed and on a ventilator, yet he goes out and about daily basis and takes lots of amazing photographs and spends time with his young son which all gives me great hope for the future and along with the fact we have discussed tracheotomy’s and the possibility of this in the future.

My voice is now problematic and have been using my eye gaze to get used to it and to be honest I am not doing too bad at it, for those of you following the voice banking story we are hopefully nearly at the end with a group of lads travelling up to Edinburgh to do a full days stint in the voice banking Booth to secure my new synthetic voice. I will bring you news of this as and when it happens but I am almost positive it will make the news and indeed BBC breakfast yet again.

I have just got my electric leg raises for my Wheelchair which will hopefully help with the ever increasing problem of swelling feet, unlike most people who have support stockings to prevent this, I am unable to wear these due to an issue with blood pressure in my legs related to Fabry’s

I consider myself to be still lucky as i am able to prepare birthday cards and gifts for the girls and hundreds of memories. Had i not been ill i may have met my demise on a motorbike this summer and not had chance to prepare anything , maybe a lesson for others here.

On a lighter note, i was recently told by my fabry’s consultant my heart should last another 10 years, i simply laughed.

I still strived to achieve the most I can with the little I have.

Next blog about our escapades in Wales coming soon.

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