Busy Busy Busy
I know I say it a lot but its been another busy month since my last post in fact I’m exhausted at the thought of writing it but here goes…..
Keeping an eye out
So a mate of mine (Squirt) suggested that I might be able to get laser eye surgery via the NHS as I have MND. I asked my consultant who said he’d never heard of it before but he’d ask one of his colleagues and sure enough I have had 2 appointments to discuss and another 2 booked so its looking promising.
I’m not a big fan of needlessly using the NHS’s limited funds but after careful consideration I think I have a genuine need. It can take me 20+ minutes and multiple attempts to put my lenses in – even then it relys on someone opening the pack so I am almost at the stage of knocking them on the head.
I’ve worn glasses since I was 16 but I do like to wear contacts when I go out – its some kind of weird vanity thing. I do struggle to clean my glasses and almost always smudge them when I put them on. Freddie likes to pull them off my face and I do genuinely worry about the safety implications of not being able to pick them up in the night or if they do come off. Lets see what the next consultant says…
I wonder if he’ll be as shocked at the last guy who warned me that i’d need reading glasses later in life to which I replied that it wasn’t really an issue for me !!
As is my way, if I can help I will try. My MND coordinator suggested I get in touch with my local MND Branch and offer my services. Needless to say I now have free reign over the redevelopment of their website. I’ll keep you posted.
I was also asked to appear on TV / Radio discussing the financial impact of MND which shockingly can cost £12,000 per year not including loss of earnings. As a family we declined the appearance as its still a little raw for us to discuss that openly.
Home Sweet Home
Facing the fact that I will be in a wheel chair in the future (hopefully distant but likely sooner than I think) we have taken the plunge and put the house on the market with Cook Residential. We have multiple viewings within the first couple of days and accepted an offer within 5 !!
Our current home just doesn’t have enough downstairs space and we need room to put in a downstairs bedroom and wet-room for when the time comes. We have found somewhere and have put an offer in subject to planning so please keep your fingers crossed that it all goes smoothly.
We may have to set up our own version of DIY SOS as a number of tradesmen have said they would like to help when its needed. We have big plans to make this a happy family home for Freddie to grow up in with an extra bit there in the background when it’s needed.
A Home Away From Home
Many of you will know that Becky works for a hospitality company (Events International) which is where most of my fancy trips come from. Every year she rents a house in Wimbledon while she is working there and since we’ve had Freddie, understandably, she doesn’t want to be away from him for nearly 3 weeks, so for the last 2 years I have spent a week or so at the house, working and looking after Freddie.
This year things are a little trickier as I really struggle to lift Freddie and changing him is very hard (think of changing a nappy with mitts on). Fortunately my lovely God Daughter Abi came with me to help out and keep Freddie entertained while I continued to work. Freddie adores her and that makes finding a baby sitter a whole lot easier !
On a sad note, I returned back to Cheltenham on the Monday to pay my respects to a dear friend, Rod Hands, who passed away after a valiant battle with throat cancer. Never one to miss out on a rugby tour or a stag do – I look forward to seeing him again one day.
An MND Update
I’m frequently asked how its going and if I’m alright, which I don’t mind at all. I’d rather people were upfront with questions rather than tip-toe around the subject. So here’s a brief summary.
- My left hand is very weak with very little grip or strength. I have a support to sleep with and a finger support to keep my index finger straight during the day.
- My right hand is much weaker than it used to be with significant muscle loss so its going the way of the left. I still have reasonable use though and I’m still able to hold and carry light stuff. My writing now looks like a doctors !!
- My left leg has gone a bit weird – I can’t pinpoint it but I don’t walk like I used to and my jogging is all over this place.
- My stamina is right down and I need to sit regularly
- My speech is also starting to change. You might not hear it but I do. I can tell when a word comes out that it doesn’t sound right. So if you start to hear me slurring it may not be because I’m drunk !!
- Waking up is not much fun – Massive cramps in my hands and legs take at least 5 to 10 mins to clear. I’m stiff as a board some mornings (not in a good way either) !
- My shoulder hurt and the pain can be intense if I over-stretch to reach for something.
- Trousers, shorts, shirts and shoes continue to be a pain so you’re likely to see me in shorts and flip-flops until my toes get too cold, and velcro and confortable waistbands will become my new best friends !!
The bucket list took a hit this month…
Glastonbury – Despite some chaos as last minute promised tickets did not appear for a couple of the lads, myself, Gary Wills and Mark Pitman drive the VW Transporter camper down Glastonbury with barely any traffic and certainly no queue. Door to door in 2 hours. Parked up, awning attached and a Thatchers in hand within 45 mins of arrival – Easy, I don’t know what all the fuss is about.
It was an incredible experience and I think its something you need to experience it yourself just to understand the enormity of it all !
- Plus points – Foo Fighters, Biffy Clyro, Killers, Royal Blood, Kaiser Chiefs, Liam Gallagher…..
- Negative points – Toilets !!!
British Grand Prix – I built a website for JDC Promotions, and I’ve know the main man (John Costelloe) since I was 17. He heard about my condition and kindly invited me along to Silverstone as at guest at their hospitality suite. It was a fantastic day and the noise is something you need to experience.
- Plus points – Champagne, Noise, outstanding views and a win for Hamilton
- Negative points – a 5.00am start after a wedding the night before (Congrats Molly & Karen)
The Open Golf – Another cheeky adventure courtesy of Events International While my playing days are coming to an end (gripping the clubs is problematic and lifting my arms/ shoulders is more difficult and my stamina to walk around a full 18 hole course has gone) my enthusiasm for watching sport and drinking beer remains.
- Plus points – Great banter with Firemen all the way, Becky’s MD bought me a cap, watching professionals hit a golf ball is amazing.
- Negative points – another 5.00am start, heavy heavy rain !
Pain In The ALS Golf Day – We’re another month closer and the pressure is mounting up. All the slots are filled and registration forms have been sent out. I’ve met with the MND Fundraiser for the South West to get all my branding sorted and we have a fantastic list of raffle prizes and auction items, thanks to some incredibly generous friends and companies. The golf day will have its own page but in the meantime I’d like to thank the following companies for their amazing support.