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

Is spring here or winter ending

March 19th, 2019


Well it has been 4 months since my last post; a lot of water has gone under the bridge since then. It’s hard to believe we are now in March, roll on spring.

Notably the fastest electric wheelchair world record is still on going and we hope to begin testing soon, this will hopefully coincide with some nice weather.  Regarding this although there has been little news on the project we hope March will see the coming together of all the parts in one place, various people throughout the country have been busy making components to all fit together at Heald in Hornsea. So we should have images and videos to post in the near future.

What have we been up to?

Well since our potholing challenge we have been fairly quiet on the action front, however on a family side of things we have been quite busy.  November saw Liz return to work, this is after 3 years career break, she has returned to her previous role as a children’s social worker, although this time she is in the disability team.  This has proved rather stressful, even for an senior social worker like Liz.  The work load is horrendous for a part time position. This has an effect on the rest of life as many people will know.

Christmas was hoping to offer a short break from it all. err not a chance. We muddled through with a staff member of sick long term; my other staff helped a lot.  We had to deal with some disturbing news that has had a profound effect on us as a family; thankfully we are all ok on a health level. Well I say ok, I still have MND and fabry’s but that is ticking over.  February saw the introduction of night staff, we have only been waiting for 18 months, it is a bit hit and miss while the company recruit but it is better than nothing.

We have a trip to Centre Parcs in Cumbria at the end of March to look forward to. We normally go to the Nottingham one but fancied a change lol.

For those people who haven’t seen my face book post I thought I would tag it on.

I see loads of posts asking for advice related to MND, I read most of them and the advice and I just realised I don't follow any of it. The reason I thought of this was down to the fact I had a video x-ray of my throat, done by the speech and language team. This done to backup what salt thought, that I was aspirating food and drink all the time. I do cough and splutter a fair bit so I had figured they were right but choosing to still eat and drink what I want. Prepared for the usual thickened drink speech lecture, I drank the foul tasting barium pulled the stupid face you pull and drank it. This was repeated with a thicker equally as rank drink and then wait for it, banana and custard. normally I don't like it but this time it was amazing. so the verdict surprisingly was a lot better than expected. small amount of thin liquid leaks into my wind pipe but it corrected it's self and went the right way. so in conclusion I was told to carry on doing what I am doing including eating bacon sandwiches, this is echoed by my ventilation team regarding my breathing and niv, I don't do what they tell me to and I keep doing ok. for any one who has seen total recall when Arnold walks behind the security x ray machine and it shows his skeleton walking along , well that was my head image today , rather cool hey.
I am of the philosophy that it is virtual impossible that a cure will be found in my lifetime, note I left room for error in my prediction. Due to my thinking I wish to enjoy my time left rather than following the invisible handbook for MND. Or I have some incredible luck by been still here. Remember ultimately you know your body and when I believe my body changes I will be ready to respond with the necessary advice.

Well that’s it for now, let the good weather commence and let there be lots of blog posts

2 thoughts on “Is spring here or winter ending”

  1. Heather Hasthorpe says:

    Hi, I was so delighted to see your blog. It’s wonderful!
    I am so pleased you are challenging MND and continuing to make magic memories. My husband was amazed by your determination
    and spirit .Hereally admired you. He would never watch you on tv as his MND was very rapid as he had previously had a Pulmanary embolism an had pan collitus too. However he was aware of all your challenges and pursuits and I think wished he was more able to have a go himself.
    This did not stop him walking with a little support, smiling and finding the funny side of life.

    I am doing a quiz on the radio-tomorrow Lincs FM and IF ( it is a very big if ) I managed to win the money will go to MND research. I am doubtful I will get the first question right !

    A fundraising Race night is on the cards for 4th May . A caribean Cake Bake on 8th August and a Seaside stroll ( to raise awareness) in September. I will be watching out for your next blog and wish you all great memory making time this summer.

  2. Nick Oakes says:

    Great blog Jason and very encouraging – glad you are still so positive xx

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