You only live twice – if you are lucky!

A different post this week, I am writing a section a day! An insight into the strange world of onein400!

Saturday 1st October

Starting today Saturday. Crap weather today. Jeesh does the weather affect my moods and I have had to go for a flu vaccination! This year my local surgery operated a walk in clinic to get through as many patients as possible. I arrived about midday, and the docs had already administered 250 jabs. By the time I staggered in, they were literally throwing them into the victims! I managed to request a sitting position before being impaled! Out of the corner of my eye, I noticed Dr Bragg being escorted out of the building by the police. Apparently there had been an incident when he asked an ample bosomed lady which “one” she wanted it in, left or right? She misheard him and all hell broke loose! I got out of there quick.

Sunday – It was a much nicer day today. Wow, the sun! Had a chilled time and met friends in a local pub. Although my voice is poor, I am determined to have a great time, express opinions and debate. In some ways, because of my slow voice, I have to really emphasise the words and this make me think about things more clearly.

Monday – I went to see my Neurologist today. Jeesh seems like only yesterday I saw him last, but it was 6 months ago!

A neurologist’s waiting room is an interesting area to watch people. Something always happens. In this week’s room, there was a lady who seemed lost, and she may have been waiting a while. She suddenly asked a passing nurse, “Excuse me, am I in the right place for audiology?”, “Pardon?” was the reply. You can’t write this stuff!

Always feels a bit odd, or uneasy, going to my appointment. But it was great, and nothing nasty appears to be happening fast, only slowly! It’s strange how a karma has descended. At the end, he asked me to move to 9 monthly appointments. So either that’s good, or I am going to peg out in about 7 months!

Tuesday – I went out on my trike today, beautiful weather. I still get that amazing high after exercise, even now. This is what really drove me to run, when I was able, and go to the gym. There is a definite pick me up. Those endorphins!

Today was my also my physio appointment. I have a routine! I selected my car music, today it was James Bond tunes. After 21 minutes, running a few cars off the road, and driving off a mountain edge I landed at my physio!

“Afternoon, Bragg, Lord Bragg”

“Hi Lee, Jayne is ready for you, treatment room 4”

“Thank you, Moneypenny”.

“Lee, my name is Claire!”

Actually it’s is not well-known that Lord Lee Bragg did audition in the 60’s for the role of James Bond. We have found an old photo just before a nasty cigarette lighter accident, that caused him to miss his 10am appointment!

Returning from my Mum’s after she had a fall at home, Jean drove back. Jean was in a rush as she was tired. So a couple of the corners were, how can I say, a bit too close to the kerb. However, I made no comment. In fact I have made a resolution to chill and not make such observations. I will save any retorts until after impact! – “Now that may have been a bit too hasty Darling!”

Tuesday was also the premiere of the new Westworld on TV. For those who have not seen the 70’s film, Westworld was a Michael Crichton film about a future vacation land hosted by humanoids. The new JJ Abrams series on HBO (Sky Atlantic) certainly looks like the most promising work he has been associated with since Lost. I actually had a nasty dream that night where my neck was operated on and wires came out! I woke up screaming

“Jean they have put a 3 amp fuse in when I need a 13 amp one!”

I have come to the conclusion today, that the Universe is in exactly the right position. I have a typical daily routine, getting up and having a bath. I can still get into and out of the bath independently, but I have noticed that if the sink was 2.5cm to the left, it might be harder!!

I got some comments re my post last week on turmeric. One was interesting, and I will give my view on it. A question was asked  “It would be interesting to see the incidence of MND in a country with high turmeric usage in cooking”. For example, India.

The simple answer is there does not appear to be any significant difference in the incidence of MND/ALS. There is, however, not a lot of data. So almost certainly not a life changing supplement.

As I wrote in Serendipity or Strategy, analysis of the environment, and different populations is fraught with major difficulty, and is not really the way we should search for a signal of a disease-trigger.

There are so many other factors you have to take out, control or effectively nullify, for true scientific analysis.

As you are aware, I believe genetics is a far bigger player in the disease than we yet know. You are all probably aware of Charles Darwin’s Evolution by Natural selection. There is also some chatter that the modern world seems to have more neurological disease now. I think the only thing we can be really sure of is an aging population will bring with it more degenerative disease.  One really interesting aspect of modern life is the massive mortality reduction of the under 5’s. Until only recently, even in the 1800s, the majority of human deaths occurred in childhood! That is now radically different, with worldwide childhood death figures having plummeted. In the U.K. it is now about 1%, when it was 40% back in Victorian times! There are of course areas around the globe where rates are higher, and India is one of them. The following chart shows this dramatically.

Gene selection is a complex subject, with both negative (natural) and positive selection taking place. So how might this childhood mortality reduction affect the gene pool? Mathematically this change is probably still too young to see any positive or detrimental effect of changed selection, but logic possibly points at some effect. I am going to do some research! But as usual, what are you trying to say Lee? You are jabbering!

Ok, superfood claims of proven turmeric benefits should be taken with a healthy dose of salt!

Wednesday – I was talking about the placebo effect with a friend in our Village who also has MND. We were discussing a particular UK Drug trial. Placebos are vital in measuring the effectiveness of a drug or treatment, enabling unrelated changes to be separated.

What is not well-known is the Negative placebo effect or Nocebo. This strange effect is when those taking placebos experience side effects, ie not beneficial!

At the start of a trial all members are told of known detrimental effects of the active drug. However, both active drug and a proportion of placebo takers leave trials because of such effects! The power of the brain and the unknown systems in our body!

Just to show you how powerful this effect can be, there have been at least a couple of cases during trials, where a case control (ie unknown to him or her) was taking placebos and significant effects happened. Now in one case a patient was trialing new antidepressants, and during the trial took a deliberate overdose of the said pill due to severe depression (ironic I know). Deciding that he actually wanted to live after all , he went to hospital, and started to show really bad symptoms, low blood pressure, heart problems, vomiting etc. He told the doctors what he had taken, whereupon they checked and found that the pills were just a harmless placebo! As soon as he was told, his symptoms started to abate!

Wow! There’s no doubt in my mind that our health can be significantly affected by how we think and perceive. Perhaps we do live twice then!?

Thursday – Today started with Jean somehow wiping her iPhone! She had changed over to fingerprint unlock, and was fumbling to unlock, and somehow entered incorrect pins a number of times after the fingerprint failed. Whatever happened, it was bricked. Anyway, the wonders of Apple iCloud backup resolved it. But that was my first 2 hours of today reserved.

In the evening we went out to a new restaurant in the local town. Of course parking was critical and the old blue badge makes this so easy. Great food and company. We left by the back door, as it had a better step. It’s these little things that we adapt to. With the cold weather coming, relaxing is key to walking with a stick. Things we used to take for granted, like an uneven surface in the dark can be very scary. But I just say to Jean, “Can you hold my hand?” and bingo all is well.

Friday – It’s blog publishing day. So I am tidying up and editing!

Finally. In just over a week I am off to Westminster with others with MND, carers and MNDA representatives to a reception with MPs. Should be an interesting afternoon of raising awareness, discussing challenges and networking with our elected parliamentarians. I must remain calm and NOT punch anyone (only joking!).

Same time next week folks!