Some of you eagle-eyed readers might have noticed that an empty post came out earlier this week. I have a whole load of draft titles, and whilst editing I sneezed heavily and my hand flicked and hit the publish button on an unprepared one! Darn those muscle reflexes! Anyway, you can’t rush an artist! Let’s call it a teaser.

The big news this week is, of course, the UK weather. It’s spring and we now have sun. This to an MND sufferer is like….. Well how can put it? Imagine England winning the World Cup of football! Like that, only a million times better. I must admit, it’s not that hot yet, so it’s more like Great Britain winning the Eurovision Song Contest. For my American readers, the Eurovision Song Contest is a yearly event where all the European countries sing in a show, and one song is named song of the year. It’s a bit of an odd competition because Great Britain has been consistently in the bottom 2 or 3 for the last 15 years. Our songs are no worse than the rest. What does this mean?

I start to write this on Wednesday morning, and my favourite football team, Arsenal, is about to play Barcelona in the second leg of the Champion’s League, 2 nil down and in Barcelona. I am an optimistic guy and always believe the impossible. All they need to do is score 2 goals, and if they did get a 3rd, Barcelona would have to score 2. Yes, I am dreamer, but that’s what you have to do in life. I will update this part of the post later this week. No I’ll update it now, we got destroyed! Damn!

In the UK, we had the Governmental Budget by our Chancellor this week. The economy is faltering. Disability cuts were an important subject causing some complaints. My only comment, is for all disabled people out there, make sure you know what you are fully entitled to. The harsh reality, cutting through the media cloud, is that so much is not actually claimed because of apparent complex processes. For MND sufferers, speak to your MND Association visitor for advice. The MNDA have been excellent since my diagnosis.


Our U.K. Chancellor during the Budget this week

The Lady in red, on the front bench, is the UK’s Home Secretary, Theresa May. For my American friends she is in charge of what you call Homeland Security. For some reason she got more online press this week than George Osborne? What was that you were saying about index linked funds, George?

So the weather is great and just like every morning, I am still jumping (well it is more like controlled falling) out of bed and getting down to those floor exercises. I am still hopeful that I could make the 2020 Olympics in some odd disabled yoga category!

It is very relaxing, and here I am practising Yoga as taught by Ozzy Osborne, “Relaxing with Ozzy, Volume 9”. However, being interrupted by Jean asking about her colour coordination for the day upsets my Karma – Omm!


I was listening to an interview with Sir Ranulph Fiennes, one of the world’s great explorers, aged 72, about his daily routine. It is rather like mine, consisting of 20 minutes of stretches. He commented, that without this he is unable to move properly. He is such a great advert for healthy living as you get older. Progressive diseases cannot be halted by activity, but they are absolutely no respecter of inactivity.

As part of the budget, I agree with the sugar tax as a way of getting money into the tax system. However, I sincerely doubt sugar is the main driver of obesity, and firmly believe lack of exercise is key. Now where is that recipe for Jamie Oliver’s triple sticky honey roast ribs with extra sugar?

Just sitting in my garden office, wow what a day. It makes you feel alive. That move to a hot climate, I must do some more research, it absolutely is not a crazy idea. Anyone who says that hot weather is not good for you is nuts. Have you ever seen a smiling Eskimo?

Our garden has a river at the bottom, with a steep bank and on the other side a vast field. We have discreet dog fencing, but there is one **** local who insists on walking her dogs (off lead) right along the river next to our garden. Our dogs go mad, and I have to be very careful how to control them. One wrong step, and I would be in the river. After some gentle comments regarding said irresponsibility, this week I totally “lost it” with the lady, explaining that with the enormous field can’t she walk them around the other side! I think the sight of a stomping Frankenstein creature shouting slurred objections towards her might have had the desired effect. If not, escalation might be required. I will get Lord Bragg on the case.

I am getting more Worldwide coverage for my blog which is absolutely great. However, some of my readers are definitely spammers. The irony is not lost on me when I receive a comment from a Doctor about a herb that cured his “MND virus”on my post regarding “Snake Oil”.  What utter rubbish people sometimes are taken in by. If I were Prime Minister or President I would lock these creatures up.

I have been out on a few rides on my trike this week. It’s tough going and this darn disease just keeps nagging at me. I am finding it tough on the lungs, and as a result worry if my respiratory muscles are already affected. I hope not, and just put it down to cold air, and lack of true fitness. Although I go to the gym, gym work has never reached the power and exertion requirements of outside against the road and elements in my view. Before starting going to the gym many years ago, I used to consider gym attendees wimps because of this, especially the ones that read books whilst exercising! How can you read a book whilst doing that?!

I have had a recent lung function test and it all appears within acceptable ranges.

Going for trike ride takes a bit of time to get ready, and one thing I forgot to mention was the pathway out of my house. It is a shared alley, and has many drain covers, with one in particular a bit uneven. When assessed for the powered wheelchair, the team commented that it could topple such a chair. Also it has been a bit dodgy with my new trike. A builder friend in the village has recently fixed it for me, carrying out a magnificent job. Strangely enough I found out that his brother also had MND! The more I talk to people, the revelations seem to keep coming. In our village alone that is now 4 people closely linked to MND.

Anyway, the alley is now smooth and allows for rapid exit from our house. A side effect is that our new neighbours can walk to their house in the dark, whilst completely smashed without being tossed into the wall! Thanks Norm very much and for the speed that the job was done by your boys. I am more than pleased.

Until next week readers, enjoy the sun.

I need to FaceTime a friend, but I know he has a cold. I am taking no chances on the call since I read an email from a Dr Frederick Fruitcake about infectious viral transfer by phones!






4 thoughts

  1. In September my pulmonary function tests were 112% of normal. In Feb they were down to 67%. So that answered the question (rather rudely I thought) about respiratory muscle involvement. As you said, winter and inactivity are not kind to the ALS body. That being said, i rode 41 miles last Sunday. So lets put your breathing difficulties down to lack of overall fitness. The cure for which is more riding.


Comments are closed.