I will take a chance, and have a go!

Ok, it’s another of my mystical titles. A few weaving themes this week, with the aim to educate, inform and entertain!

Several comments were made about last week’s post. One of my loyal readers said that I am talking about my trike a lot! Man of course, it’s like a new world to me. So for that cheeky remark there will be a bit more today! I will also have a cycling analogy every week from now on! Another reader also told to me focus on the road and not the “blonde’s bum”. It’s another side effect of MND, don’t you know? ……ogling ! Pammy got some mentions, and I think we all know a Pam. Ironically, I am actually talking to two Pams in real life this very week. Coincidence or what!

So where did this week’s title come from? I was thinking about a major UK corporate client (who will remain unnamed) I visited once with a colleague, and then being taken to the luxurious lunch time dining facilities in their London office. Their lucky employees had free lunch as part of their contract and to say it was glorious was an understatement. In fact, they even had a vegetarian section, with a dedicated chef, proudly standing behind his serving booth.

My colleague was, how can I put it, “blunt and straight talking”. He walked up to the Vegetarian stall and asked about the dish of the day. The chef gave an eloquent explanation of the ensemble, whereupon my colleague said (in a geezer accent) – “go on then mate, I’ll risk it!”. Such an embarrassment.

Then that also reminded me of the time I went on business to Florida with a colleague, who had not been to the USA before. Unfortunately it was at a time when several Brits had been murdered in the state on the highways, so he was a bit nervous.

When we arrived in Florida, it was hot as always, and we were in our UK clothes, jeans and jumpers. We picked up the rental car and I said to my mate, “try to NOT look like a tourist”. I was driving, and started to alter the driver’s seat position, and suddenly couldn’t work out how to make the final adjustment. I told my mate to jump out and ask the rental car attendant how to do it. As he walked towards him, I noticed that he had rolled his jeans up to his knees, and also, put a hankie on his head because of the heat! Terry, if you are reading this remember!! Such an embarrassment!

So what has happened this week in onein400 land?

On Saturday I met up with one of my cycling compatriots, John, who I cycled to France with over 35 years ago! It was like yesterday. Remember my Milkfloat crash? We recounted the accidents (mine was only one of several, apparently) and there was a whole lot more that I forgot that showed how young and completely naïve we were. John has dug some photos out including my hand being repaired, and see how we placed this tent in a dip, at the bottom of a gulley!

It rained that night! After the flood cleanup we settled down to a relaxing few days. The place we camped was in the middle of nowhere, down a lane, turn left, right, left and right again. IT WAS REMOTE, GET MY DRIFT! Well even so, one night we were suddenly joined by this German man and 2 girls who decided to have dinner with us. We agreed, and he proceeded to chuck his enormous hunting knife into the ground repeatedly around the camp fire during the meal. We all slept with one French boule tightly held in our hands that night for protection, desperately not wanting to be part of a sub-titled documentary!

Back to this week, and another highlight was meeting with a work colleague, who has a band, to discuss a benefit gig for MND/ALS. More to follow if all goes to plan.

Oh, and on Tuesday, I was using this device, a Dyson Animal cordless vacuum. A cordless vacuum is a safety device for me, no cable to fall over!

I noticed although it was sucking the rotating, sweeping bit at the bottom was not working. I took the bottom part off to check fluff build up, as that is what normally causes this. It is a well designed device, and has been very reliable.

Anyway, I checked the bottom part, and yes found fluff and removed it. I then put it back on, the power was working, but still no rotating! Damm. I started thinking where is the receipt! We have had the item for over a year, and I never buy those 5 year warranties! As an aside, those warranties are NEVER worth their price for household appliances. However, I was starting to think we might have a lemon device and perhaps for the first time we might have to pay!
Not wishing to be beaten, I had a go at fixing. The process was simple, no tools, and logic said check the power flow from the main unit to the power head, hoping that the motor in the head had not blown. Here was my process…

1 – I checked the connection – marked A in the photos – All good

2 – I checked the connection – marked B – All good

3 – I took the fluff container off – marked C – All good

I then realised, how does the power flow from this bit from the main unit? A quick check showed that the conducting plates were thin and wrapped around the container to two little pads D. These then engaged when the fluff collector was reconnected. So I peered into the area E where the plates touch, and bingo! There was a chunk of fluff on one of the internal plates. I blew it off, reconnected and it was all working again! Hurrah.

So Mr Dyson, a small flaw, not quite perfect design, but pretty good.

Ok Lee, why the hell did you tell us about your Mrs Mop story? Well 2 points really…

1) Have a go at anything, and sometimes the fix is easy. Also my policy of never buying 5 year warranties for household items still holds good. The only warranties worth buying are those for high value items that have a high potential of failure.

But secondly, the fault is actually a good analogy for MND symptoms and the search for a cause/therapy challenge. Really Lee?! Oh yes!

If you are smart and wish to read my ramblings, please read on, else Sun readers please jump to the end and the bit about the banana.

*** start of tedious bit with technical language, but contains important science

With the vacuum, it was pretty simple to trace the problem from the blades (human equivalent – foot) up the pipe (nerves) and to the power (brain) to find the issue, and treat it by cleaning the terminals (nerve junctions). This is analogous to what is called a “disease model” in disease understanding. When you hear this term, what is actually being discussed is the process (steps) that cause a disease. We had a cause, which was the lack of electricity (analogous to a disease pathology), a symptom (the lack of the rotating blades) and also we had the failing process (model). We had both the model and the pathology. It was simply a matter of finding the fault in the model, and the pathology was removed.

With MND, in summary, the state of understanding as of 2016, is that we can see the symptoms and we have some suspected pathology, the build up of certain protein clumps in motor neurones. However, we don’t have the model that leads to this suspected pathology. This is key, because until you have the two, treatments are hard to design/search for. Also, we don’t actually know this pathology actually causes the symptoms. When you only have a suspected pathology, it might be simply a side effect and not the causation. In our vacuum, we also detected the fluff blocking the pipe right at the start. However, the fluff was only a side effect. It had built up, and perhaps lack of suction had made it worse. However, once the fluff was removed, the device still did not work. The reality with MND is that we have detected suspected pathologies, but not yet traced a disease model that leads to this.

Why have you gone to this long explanation of disease models? Well, it’s just to show the crucial work that is needed to trace the disease model. The pathology could be the protein accumulations and we could design a therapy to stop these occurring. However, it might be a side effect, we just don’t know yet.

The purpose of my ramblings is to exercise caution when media stories break, claims that sometimes appear in the news, and why we must let scientists do the hard work. It is not simple, and funding is desperately short.

Also, just ask yourself questions when diet supplement companies sell their products on so called disease prevention etc. Most are so weak on science, as I have said before in an earlier post, you might as well drink pig’s urine. This is true for many health claims across a lot of diseases.

Just to put funding for MND into perspective, the Ice Bucket challenge raised about £7M in the UK in 2014 by the only MND charity, the MNDA, of which a good proportion went to research. However, in the same period over £500M was spent on Cancer research in the UK from just one UK cancer Charity! So please keep encouraging friends to do stupid things for the MNDA.

The good news is that we are getting closer, and we probably have the secret available in the massive amount of research papers and ongoing genetic studies. The big challenge is analysis of the data which is vast. This is really exciting.

* end of tedious bit!

I have now setup a “just giving” MNDA donation page, “One Way or Another” to collect any donations that I may be lucky enough to receive for MND. If you feel like donating, it will be much appreciated. I will in return continue to write my nonsense blog, and also seek out ventures to raise awareness and donations. Watch this space!

That’s it for this week

Oh and one last thing, for the cyclists amongst you, “where exactly do I store this banana for my ride?”

Next week’s title “Keeping close to the line”.