A bit chilly this week. I really don’t like it. Hoping that this is the last cold week in the UK and we see a sudden march (pardon the pun) into summer! Actually, it’s now Thursday and it’s a beautiful day in the South of England.


The week in review.

Jean and I went out for that Valentine’s Day dinner, and after all the fuss last week about the menu, they had changed it! I think they got scared and didn’t want a scene, i.e. A massacre! I have a reputation now.

My trike has now arrived at the dealer, Saddle Safari, and is being assembled from, as they put it, a giant box of bits. Absolutely no time like the present. Must keep moving. I have no idea how I am going to get on with it, how long I can ride for etc. But that has always been my motto in life. i.e go for it. Suck it and see (apparently this is a saying that we Brits and our Australian compatriots use. Not so sure about my American friends?) Anyway, picking it up on Sunday.

I mentioned that I might talk about an average day in my current life. Well, it starts every morning with a very slow delivery of a cup of tea (Buck your ideas up Jean) and then a hot bath. Baths are King to me, showers are but a poor substitute. Of course each to their own. it’s a matter of personal choice.

However, a shower holds now an element of risk for me, with the verticality and slippy stuff like soap. I have often wondered how soap is allowed in showers?! More later in this post on showers and their dangers to society.

I then do a whole series of stretches and floor exercises. These involve sitting cross-legged, a various range of movement exercises, core strength (that’s pelvic floor to you, ladies). Finally, I get to my feet. This is one of my disease progression self measures: how well I can get to my feet. I typically hold on to something and pull myself up. However, as part of the exercise I do a back walk on to my feet, and then try to use no hands.

Then it’s getting dressed. Yes readers, that was naked floor exercises! Jean is always dismayed, as we have a cream coloured carpet in the bedroom. Apparently, it’s not hygienic and all that (so fussy).

Most of getting dressed is ok. The only current issue is putting shoes on. In fact shoe wear is now a highly focused task. I also now prefer good walking shoes to any type of shoe, although I did acquire a couple of pairs of new shoes this week to try and restore some fashion sense.

Ok, on with choices.

* Warning extreme serious section coming, don’t expect a barrel of laughs.

Last week there was an amazing documentary on BBC2, here in the UK, about Simon Binner, who had very aggressive MND and decided to go to Switzerland to end his life. I won’t use words like suicide, because it wasn’t that. That’s just emotive. I support choice, and we don’t have that yet in the UK. We have discrimination. It’s rather like being gay in the 1950s. I respect anyone’s choice, but I don’t respect anyone who seeks to deny choice. I can’t. Put simply it’s a personal choice, like choosing a bath or a shower. For me, it’s a bath as aforementioned.

Some of the press comments and follow up on social media chatter has so annoyed me that I REALLY NEED TO CALM down. Breathe….

Right, to temper my temper, I have decided to write an “MND choices” page on my blog. It won’t be part of my weekly blog, but you can read it if you like. However, I warn you, it will be straight talking.

* end of extreme serious section

Ooh, Jeesh, my readers didn’t expect to read that in my blog. So sorry, but sometimes a stand has to be made.

In my view, it is just a matter of time before our inhuman laws are changed.

Just as a rather interesting piece of history, lets look at the rights of women in voting.

In the UK, the fairer sex gained election voting rights in 1918 after an incredible campaign, in which true sacrifice was made for the cause. In the USA it was 1920, and then only for white Women. It took another 45 years for all women in the USA to receive the right!

You may be shocked that NO women could vote at all in Switzerland until 1971! Yes, 1971! Change happens, but it takes time. Just to put 1971 into perspective, the great songs of the time included “Maggie May” by Rod Stewart! What will the next 50 years bring?

I was at the gym on Tuesday, before my physio, and yes they are still there, those pesky January gymsters! Getting me annoyed again now. Calm down, Lee! I need a plan to lure and eradicate them (ponder ponder).

I have actually made one change this week, and it’s regarding my shower routine after gym. My walk from the shower cubicle back to the lockers is treacherous, and I have been lucky a few times. Slope, wet floor, naked, and with a towel barely attached, it started to worry me last week. Not wishing for my fellow locker room buddies to experience my meat and two veg approaching them at a rapid pace in an uncontrolled fall, I decided to see if there were any disabled facilities, and bingo, I found a shower room with changing facilities for one. Perfect. Adaptation complete.

Anyway I did the gym, waved goodbye to the gymsters, muttering under my breath “be off with you to Starbucks”.

Finally this week, I wanted to introduce you to a fellow MND sufferer, Keith Smith, otherwise known as #thebigredkeith on Twitter. Unfortunately, Keith is a Man United fan, but despite this he is a true inspiration. Keith, sorry, I am an Arsenal fan of 45 years. I have kept this from you in our online friendship, so sorry!

Keith is recording a regular proper VLOG on living with MND, and it’s called “Keeping up with Keith”. A superb title, as I really think it highlights that one can live with this pain in the arse disease, and still have a new lease of life. Please take a view of his latest VLOG. I am looking forward to how Keith evolves the blog. Some of his comments in this episode really do reflect your emotions as you live day to day. Rock on, Keith. Let’s hope Rooney is fit for Euro 2016!

Oh, and for the gymsters……I have a plan

6 thoughts

  1. pretty sure you’ve seen this but here’s my GoPro video footage from the trike. I couldn’t use the helmet mount because my neck muscles aren’t strong enough.

    And…..like you I’m a country bagger and the latest blog post got me Slovakia and Tobago. Not that I’m competitive or anything.


  2. Lee I expect to see the new vehicle festoon with GoPros, I see a whole new adventure beginning that could have its own vlog/tv channel.


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