One man’s poison is another man’s….

Wow! In the UK it’s been a major political news week. Obviously I have opinions, but I would never dream of making them in a blog. Being that you can get stalked, hunted, abused and dissected for just disagreeing with someone’s Organic Lemon Mousse recipe, I will steer clear.

So I will stick to my mundane life in onein400 land.

Pam Bragg is not sure where she will get her plump cushions from, now that BHS is closing! For my American friends, BHS is a major UK retailer that has just buckled under the changing world of retail. Pam has been trying to use online shopping but has been a nervous wreck since accidentally ordering what she thought was a nice ornament from one web site, and the packaging burst open when being delivered. This would not have been so bad had the parcel not been redirected to her neighbour. Timely warning to those of you ordering certain items! Be in!On Monday Jean got her old Mini out for a drive. There is something about an old British car that you just don’t get with modern cars. Young people today just expect cars to work like an iPhone. Well, Jean’s Monday trip didn’t let us down. As she was washing the windscreen on her return journey, the knob sprung off and the wipers kept going along with the washer fluid!

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We found the parts on the floor, and it was fixed very easily. Such fun that car!

It reminds me of trips with my Dad in his Vauxhall Viva, what a car!  It wasn’t as nice as this one, but it was fun.

Vauxhall HC Viva 1300 GLS Front

By Robotriot (Own work) [GFDL or CC BY-SA 3.0], via Wikimedia Commons

Firstly I remember Dad driving us in the pouring rain, without seat belts, and suddenly one of the wing mirrors ripping off at 60mph and flying into the windscreen. We survived by the sheer fluke that it coincided with a sweep of the wiper! The mirror hit the blade and flew off.

The second story is when Dad traded the Viva in for a new car and agreed a price. By the time it was due to be exchanged, the viva was a pile of metal, and only 2 gears were working, 3rd and reverse! I remember going with him to pick up the new car, and he told me to keep quiet about the state of the trade-in!

On Tuesday I had my regular physio and gained a new item for my daily exercise ritual. This…

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This is a foot roller and not what some of you are thinking! I have noticed slightly odd feeling toes recently, and have been stretching them to help. Liney advised the use of this roller. My daily routine is now getting so long that I only just have time between waking and making lunch! Not even time to watch Loose Women on ITV morning TV! Jeesh, it’s getting bad.

In the news this week, Team GB has displayed their kits for the Rio Olympics.

Tom Daley London (cropped)

Tom Daley in more respectful attire in 2012 – By Jim Thurston (Flickr: Tom Daley) [CC BY-SA 2.0 (http://creativecommons.org/licenses/by-sa/2.0)%5D, via Wikimedia Commons

I am going to order some gear to show my support for the team. I fancy a pair of Tom Daley Swimming Shorts. Now, let’s see what sizes there are…

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Ordered. They were sold out of extra snug.

For lunch on Wednesday, I had a cup of this soup.

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I can tell you now that it contained real asparagus, Humm that odour!

As you can imagine, I keep a close eye on MND/ALS research around the globe. I do have very strong scientific principles which help me filter the good direction news out from the chaff. Unfortunately there is a lot of news that is really not news. In some ways this is indicative of the whole of social media and the way it works.

Social media can be really quite misleading and uninformative. It is rather like loud people in a pub (bar). That is about as political as you will get from me!

For those of you who use twitter, this is very very apparent, where one minute trending shows #globalcrisis and then 2 hours later its #jayZiswicked!

Lord Lee Bragg has given me this handy life tip when he over-heard someone complaining about their job. Sometimes, it takes a straight talking old fart to bring us back to reality.

“Lee, what’s all this talk about work stress? Just ask yourself the question, does your boss have a gun to your head – I don’t mean a metaphorical gun, I mean a real gun. If the answer’s no, then what is the issue? Seriously!”

Lord Lee is so so right. So called modern-day work stress is just a hard-working life, no more and no less. I used to love work stress, it was like a drug. I miss the darting here and there, the ridiculous demands, etc. Stress is what you make of it. For those of you who can still rush around, keep going, it will pay dividends. I thrived on it.

Choices made by our leaders can be very difficult to understand, but they are often right despite the apparent outrage. One recently in the news, here in the UK, is the Meningitis B vaccine and the petition for administering the vaccine to all children up to 11 years old. The information in the media was a bit misleading and always focused on “the government are not funding”. However, here are the brutal facts

Each dose of the vaccine costs £80, and every child needs 3. So a cost of about £240 each.

So even assuming a 90% discount with the manufacturer (highly unlikely with the short world supply, but just to show the lower extent of the cost), this would mean for the extra 7m Children requiring vaccination up to age 11, we are talking just under £200m!, but more realistically £1B! The introduction to the under one year olds is absolutely the right approach, slowly bringing in protection. There are many illnesses where just 1/10th of this funding would lead to extended lifespan. I believe it was the right decision, although not an easy one to hear, if you are affected by the condition.

In my case, even with 2000 guaranteed deaths a year from MND and 1 in 400 of us developing the disease, we are entirely dependent on charity to raise significant research funds. I accept this. In the whole of the ice bucket challenge in 2014, about £7m was raised in the UK. Realistically we need that every year to bring forward the therapy discovery that we need.

Help me raise a few quid by supporting my “One Way or Another we’ll beat MND” night on June 4th. We’ll keep the drum beat rolling. Well Jon the drummer will! It should be fun, and if you are in the area please pop in. We are planning on a small raffle/auction, and there may be some quite interesting items!

Oh, “One man’s poison?” – I am sneaking a serious post in about research and an update next week and I didn’t have a title this week! Just to keep you focused readers!

BANG, I’ve just been brought back to earth with a bump following a phone call saying my powered wheelchair is available for delivery and it is coming this Tuesday. Being prepared.

Same time next week readers!

Oh and what do you think these are?

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Looks like they will be tasty with a nice sour cream and chive dip!

 

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7 Comments

  1. Anna says:

    Hi Lee
    I love your blog, I’ve been reading since my Dad was diagnosed in August last year. My Grandad also had MND. I can’t get Dad to follow you but I have told him about your trike and will suggest he asks his OT for a groovy foot roller.
    Big hugs to you and your family
    Anna x

    Like

    1. onein400 says:

      Hi Anna, thanks. Why can’t your Dad follow me? Can he read email? Tell him it’s a laugh.
      Best wishes
      Lee

      Like

      1. Anna says:

        I will keep trying. I don’t think he’s into getting to know more about other people with MND, we’re a bit glass half empty at the moment which is a bit difficult. I’ll also try my step-mum because I think she’d like it too. Never give up! 🙂 X

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      2. onein400 says:

        Anna, I can understand. The only way to live is for the day. In the time I have been diagnosed I have had 3 friends younger than me die, not of MND but suddenly. None of us know tomorrow. Try and fill that glass!

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