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

MND Month has been and gone

July 6th, 2020

So mnd awareness month has been and gone, we should reflect on those we have lost, not just to mnd but covid 19, I think we can all unfortunately say we all know someone who has past from either disease. I quite often think when you think about it the 2 diseases have the same goal, however one you actually stand a chance.  Like going to war with a weapon, the other however you go to war with nothing but your mind.

Well I still have my mind, or at least I think I do.  The last few months have been the toughest so far on my mnd journey, it’s shown how good our family have still kept spirits up.  Home schooling has been a challenge but the summer holidays are nearly here.  I have played a very small part in this, my voice is so bad I can’t understand myself, but I have been there for tech support. We took a more life centred approach to schooling with it being more about the things you don’t learn at school.  Luckily Liz was in charge thank God, I could teach them plenty but enough said.  They have learnt about Greek mythology, baking, gardening, growing your own food and much more. most days they a few hours in the pool getting exercise.

My faith in surviving with mnd is still positive, the lack of Physio and gym has not helped, physio has restarted and I can honestly say I was actually glad I didn’t have to go to any appointments. Things have got so bad I got used to not looking in the diary altogether. And worst of all no grocery shopping, it’s something I do with my carers towards running the house.  But today I broke out with rebel carer Thelma, although I don’t think I was spotted lol.

The fastest electric wheelchair has been on hold due to lock down but I hope to test in July.  Sorry there is no more news, we were about to begin testing when lock stopped everything. Although during lock down I have managed to get a new battery for my off-road chair so should be ready in next couple of weeks. So more exciting adventures to come.

So,it has been an exceptional mnd awareness month, I have been in touch with my mp regarding the possibility of access to nurown should it be approved by FDA.  He gave me some glimmers of hope. for those who have recently started on their mnd journey , yes it is one if not the worst disease to have , I was told when I started out, for pain it’s best disease to have , he lied, the physical pain is not to too bad but the mental pain is horrendous. Focus on your goal, don’t ever give us up. people may think this is too direct, the mnda seems to want to shield people from the horrors this disease brings.  I disagree, right from the start I wanted to know what I was looking at.  there are plenty of us cheery patients out there.  you might only have your mind but it is a exceptional piece of equipment if used correctly.

Some of you may remember a while ago I mentioned a friend called Tony, he made me an brilliant mug holder, well as things keep changing with mnd, and my drinking also changed requiring the cup to be nearer to me, so cup holder mk 2 has arrived, it does the job perfectly without being too imposing.

A nice bit of news to end with, our newest member of the house is Bella, although Popcorn is still my favourite.

I hope to bring you more happy news in my next blog, with news on the fastest electric wheelchair, adventures in the 4x4 chair and what the summer has brought.  So stay safe

Thought I'd add these little gems, Liz's new work attire, brings back memories of paint spraying, My new friend after 2 years and my beautiful girls with their Popcorn on Hessel foreshore.

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