March 2017 Update – 1 Year In
March 2016 marked the ‘Estimated’ start of my illness – the first time a professional (Chiropractor) noticed weakness in my left arm. Thankfully (touching a lot of wooden stuff) progression has been reasonably slow and in the words of one of my Consultants “you’re not a third of the way through this yet so you’re not in the 3 year bracket”.
I have started this blog (and back dated posts) not only as a sort of therapy (I think I’m a bit depressed) but also I think it will also help others who have been diagnosed to understand what their path through this might be.
Here is a list of things I struggle to do on a daily basis:
Personal
- Contact lenses
- Shaving (squirting gel and the actual process)
- Bum wiping
- Doing up buttons on trousers, shirts
- Cuff-links – no chance!
- Shoes – laces have become a real problem
- Flushing toilet is hard
- Squeezing shampoo (it falls off my left hand)
- Getting anything out of my left pocket – change in particular.
Physiological
- My left hand is week – it scores 4 on my grip strength gadget I bought (right hand 36) My mate Matt can squeeze beyond its measurement capability !
- I’ve started wearing a support to bed because my fingers curl up over night and it can take awhile for them to warm up and become usable in the morning.
- I’ve lost a lot of muscle on my shoulders and struggle to lift my arms over shoulder height. Picking up Freddie requires a lot of effort but its sooo worth it.
- My walking is fine although I’ve lost my balance a couple of times. Having said that I played golf on Sunday and in the evening I was, for want of a better word… Fucked!)
- My neck is constantly painful – it has been for years but the consultant agrees it could be due to muscle wastage. I have a small prolapse in C3/4 so I may be able to get another MRI
- No problems with speech …. although I do get a little tongue tied and a bit more phlemy !
- I’m concerned by a bit of memory loss – Consultant has told me its not related…. but ironically I cant remember exactly what he said lol !!
Professional
- Lack of motivation
- Difficulty typing
- Cant reach Ctrl+Alt+Delete anymore
- Shortcuts like copy and paste are more difficult.
- I’m trying to use a speech recognition software – but it means I can’t have music on !
- I’ve got lots of work on but just cant get into it. My brother is helping but I’m worried about the medium term and how I’m going to have enough money to survive.
Pissed Me Off
Had a visit from an OT
Cutlery, sock putter onner, braces, button hooks – It was like they’d never had an MND patient before – none of their suggestions worked
Positives…
- Becky can sense I’m down and she’s doing her utmost to keep me focused on the good things. She truly is amazing and I’d be lost without her.
- Freddie is almost walking !!
- Plans are in place for a boys trip to Vegas (bucket list) in March 2018 – lots of the boys are keen.
- This blog – I think it’ll help me get a lot of things off my chest and out of my mind.
- I’ve been part of Cheltenham RFC Crowdfunder and we smashed our £55k target raising almost £61k
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