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

It’s Time

May 8th, 2018

Finally we have nice weather, or am I dreaming lol.  BBQ’s are here and maybe it’s Pimms o’clock.

I have decided to do a little test, to see if people actually read all my blog post, so keep reading.  Since my last blog believe it or not we haven’t done that much although we have covered some miles.  Last weekend saw our regional mnda conference which wasn’t so regional as it was in Kendal.  The most exciting part for me is the research part, gives an insight into new possibilities. I did however manage to momentarily fall asleep during part of it, it was a long drive.  It’s always great to talk to new people and network lol, apparently that’s what it is called now, I prefer make new friends.  Oh by the way amazing suede and carrot mash. So amongst all this we found out 2 trustees posts have come up, so I have put myself forward.  Originally I had thought that Liz would be great at the role but she suggested me, initially I didn’t like the idea but then after giving the idea more thought it made sense,  raising awareness and having potentially an input into the mnda no matter how minimal could help someone and that’s what it is all about. Who knows I might have a good idea, no comments please. However if you are a member of the mnda and would like to vote for me I would greatly appreciate the tick, on line or on paper.  Speaking of good ideas!

Another mileage hungry journey took Liz and me to Derby, where this picture was taken.

The purpose of this journey was to meet my new friends from Indra, who are they?  Jay and Dean, these two gentlemen are part of a company who have agreed quite excitingly to help me with my latest challenge. Now I haven’t mentioned what the challenge is as yet because I wanted to make sure it wasn’t pie in the sky, simply it is a Guinness world record for the fastest electric wheelchair in the world over a standing mile.  I told them the speed needed and that wasn’t the bit they were interested in; it was the record I wish to set.  Now obviously I don’t really want to say too much about the speed but it’s faster than you’re legally allowed to drive. Why you say?  Why not I say.  Speed is something I have always loved, whether it is 2 wheels or 4, skis or anything else.  This is a chance to be the first at something and be recognised for it, giving the girls even more of an idea as to who their dad really is.

Right back to the normal stuff, bank holiday weekend saw more horse riding and beagle training.  Popcorn is coming along great but she as mad as her owner Poppy.  We took her on her day out to the East riding country fair in Driffield, the weather was great and Popcorn loved it meeting all kinds of other dogs.  We all had a fantastic time and even tried some activities. Needless to say we were all wiped out.

Still we had enough left to go for a picnic down behind our village and have even more fun. Even carers get a free ride!

6 thoughts on “It’s Time”

  1. Helena says:

    Great news! Looks like you are all living life to the full! Looking forward to the next update 😀

  2. theshaneduckson@yahoo,co. says:

    Great to hear your news – keep going!

  3. Pam Tyler says:

    Look forward to reading your blog and hope to meet you at the MNDA AGM in July

  4. Cohl says:

    I guessed your challenge Jason!! But you did mention it to me when we met. Let us know when it is please, you’re amazing! xx

  5. Jonathan Adam says:

    Brilliant. Proud to have you as a friend.

  6. Phil says:

    Great Blog. Keep it going. Keep fighting this horrendous disease.

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