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

Summer 2019

August 30th, 2019

I deliberated on doing a face book post, then I thought nope, I have a whole summer’s worth of information so blog post it is.

Well what a summer, busy busy, nothing unusual there.  It’s summer holidays and no school, great really what are we going to do with the kids?  I can say now with less than a week to go before school, it has flown by, the girls have really surprised me. So what have we done, dance camp, gymnastics , horse riding x lots, drag racing, going in a cable car, getting wet in Derbyshire, wheelie event, riding in the world’s fastest shed  and that is just the fun stuff.  Unfortunately mnd doesn’t have a summer break, I did tell it to have a break but it didn’t want to know, I just carried on regardless. So we had several medical appointments but the girls were spared and had a few sleep over’s.

I will get the health update out of the way.  Before I do, just now my wife is scaring my night carer with a small house spider, my carer is asking Popcorn the beagle to eat it, this is standard procedure in our house , and Lilly wants a snake!! Anyway on with the show, my health, to someone who sees me a few times a month I have not really progressed, but to my wife and carers the bulbar symptoms are getting worse. My speech is basically, not understandable, Liz can get most things and my carers but that’s it.  I recently had my 3 monthly review and found my lung capacity is 37%, normally this doesn’t worry me but I have started noticing that when doing the test I struggle to get a big suck of air.  This has now prompted me to start and embark on the journey of a tracheotomy, now this was agreed some time ago, so it won’t be too longer road but I have a couple of questions.  I have been having issues with thick secretions and was on a hyper tonic solution but although it worked well for a year it has lost its benefits .  so while I was at my check up I trailed another new nebuliser and all was well so I will keep you posted on its progress. But I must say the smell is horrendous, smells of rotten eggs lol.  Other wise everything is tickity boo.

We have spent most of our weekends at the girls ponies , I amuse myself with challenging terrain in my normal chair because the big one is been made more suitable in the way of support.  I also like watching our nutty beagle running around, she likes to steal the horses carrots. It’s nice to be out and about with mnd, sorry Simon I borrowed your phrase , especially when I don’t have to wear a duvet and gloves.  We managed to get a break away in Derbyshire, Darwin Forest, it is great a bit like Centre Parcs but on a very smaller level, it’s more friendly and dogs can come too.  The girls loved the swimming pool and some of the activities were great like water scooters, which was fun and even better was walking on water, Poppy managed the longest, Liz was by far the funniest.  Although it rained most of the week , we had I think the worst rain storm I have ever seen.  But despite the weather we went up the heights of Abraham, cable car fun reminded me of many skiing holidays , but unbeknown to us my carer Jenny was afraid of heights.  This might have been a good time to tell her there is a foot path, but this was of no use as she told me once in the cable car.  She really didn’t like it, enough to say on the way down she started singing hymns, I thought we were doing a mobile version of songs of praise. Hay sent to add the dog looked like she was passing a stick  as we were in front so had a great view of Popcorn . the girls and Liz went to Speedwell cavern on the way home, I gave it a miss as you have to go in a boat. I did a face book post on Poppy going drag racing and motor bike wheeling, also her ride with Kevin and Ron in the fastest shed.  It is great that one of my girls shows enthusiasm towards my passion, maybe she might be the world’s fastest woman one day.

So all things considered we have had a great summer.  We have lots to look forward to, we have a holiday to Tunisia to look forward to at the end of September, no doubt there will be some antics to report and I do plan to go parasailing, because I don’t think me doing that with a tracheotomy will be too clever.

#fastestelectricwheelchair isn’t far away now , I can smell the burning rubber, watch out for an update really soon.

May the force be with you.

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