Wow, what a busy time the week before last was! It did of course culminate with the Royal Wedding. This very very special edition of onein400 is your historical record of last week and is yours to keep for posterity!

Lord Bragg’s special His and Her Whisky Cup sets with Bragg’s 90% proof Wedding Whisky are still available for those wishing to remember, or potentially forget the event!

Please enjoy this historic and highly significant souvenir edition.

However, that’s enough of that tosh. Let’s see what has happened in the real world during that Royal Wedding week!

For me it was all go, with the very best of British being central to my enjoyment and daily living.

Really, Lee?”

I started off with my weekly massage. I believe this almost keeps my spasticity due MND at bay. I am still managing to avoid taking any anti-spasticity drugs which, to be honest, are chemicals that you ideally don’t need in your body. I really do think we should all consider very carefully about taking particular medications. If these are essential to your situation and proven effective then, of course, that is entirely different.

On Tuesday night I travelled to my very good friends Paul and Nadine’s house. You might remember Paul and Nadine from my trip to Northampton in November 2017 post. If you don’t, you might wish to revisit to enjoy my antics. I got in trouble for auctioning Nadine’s Lingerie on eBay that night!

Well I got most of it back for her from the buyer, so I really don’t know why she is still so upset about it!

The reason for their renewed hospitality was that Paul had offered to accompany me (ie be my day carer) to the UK Houses of Parliament to meet my MP and watch Prime Minister’s Questions Live! Woo hoo. I have always wanted to see PMQs, so I wrote to my MP who kindly arranged it. Coincidently she wanted to meet me as she has a close connection with MND! So what an opportunity!

As we were going to travel by car to central London, I was invited to stay over the night before. Driving is so much easier than getting a train. Arranging for help on a train, and traversing the cavernous step down at Waterloo makes it near impossible for anyone with a disability at my current stage. This is in addition to the crazy crowds. And of course, we can park the car with a blue badge free of charge just south of the river Thames all day!

So after enjoying a wonderful meal, I was again allotted Paul and Nadine’s downstairs bedroom. You know the one where I got into trouble last time? Anyway, it was a hot night and I asked whether the windows could be opened, as they were all strangely shut. Paul kindly obliged and noted that Nadine hates having them open at night because of 🕷 spiders!

I had a great sleep. Nadine, I only saw these two very small spiders enter the room. They might still be there, but they were so tiny.

Morning came, and apart from a few rather deep nasty septic bites, I quickly washed, ate a delicious skinny bagel (thanks, Paul) and we started our adventure to the capital.

We arrived in plenty of time, and grabbed a free parking spot at the National Theatre. As a matter of interest, I was only checking the other day regarding the proposed diesel surcharges that are being placed on cars coming into London in 2019, a so-called Ultra Low Emission Zone (ULEZ). And Bingo! If you have a tax exempt car, due to disability, it can be as polluting as it likes until 2023! Yet another blue badge Brucie Bonus! I am beginning to think this being knackered out is not too bad!

Anyway, back to the parliament visit. Paul unloaded my Travelscoot, and off we sped! Driving a Travelscoot, which is cool looking, is an art. It is a three wheeler and comes with all the inherent potential horrific calamities of such a vehicle. So precision is vitalApart a small topple on an incline with nasty cobbles at the top with a severe adverse camber, I was all hunky dory and proceeded over Westminister Bridge. Interestingly I had a discussion regarding technology and disability/mobility aids this week with a friend. The aids that are in cars now, such as collision detection and self drive, could be and should be part of mobility items. More on this in future research posts.

Once over the bridge, and without any further spills, we proceeded straight through security. It was very quiet as the House was sitting. In all my 55 years I have never visited Parliament. I can highly recommend it. It is superb. We were taken on an accessible route to the central lobby where we registered for PMQs. And then we met my MP who took us to a small lounge frequented by MPs and Lords.

I discussed several items in reference to living with MND, including UK government funding (the lack of it) for research and the absence of respiratory care in our county. This latter point is quite amazing in this day and age. Not only do we have no drugs, but to be assessed for respiratory issues we have to travel to London! The planning of my visit just shows how difficult it is for someone with MND. It was a great meeting and I hope some good things will come of it.

After a very productive hour, we then made our way to the public gallery to watch Theresa May and Jeremy Corbyn joust. In real life the chamber is much much darker and smaller than I imagined. And the historical furniture made for a quite eerie “Game of Thrones” atmosphere. It was far more febrile than on Television.

Talking of Television, after PMQs we returned to the central lobby. The BBC always report live after PMQs from there, and that day was no different. We noticed the reporter and cameraman in a tight corner and assumed we were clearly out of shot. We forgot about wide-angle lenses!

On arriving home that night, I thought I’d check the 1.30pm news on iPlayer and oh my word we were all over it, looking like two idiots wandering around in the background. The video is gone now from iPlayer, but here is a screenshot. Observe the fool on the Travelscoot!


We had just bumped into Lord Bragg, but he was making a very sharp exit as the chamber cleaner was after his blood because she had just used some of Bragg’s Historical Statue Cleaner on one of the priceless statues in the lobby!

I made use of the House’s toilet facilities. Very nice they were too. I can now say I have done a………. this section has been censored by Jean! More on toilets later in this post!

On Saturday, the day of the Royal Wedding, Jean and I set off for the most important event of the weekend in the UK. Yes, the London to Brighton Mini Run! Accompanied by a support car this year, we arrived in good time, all ready for the Sunday drive. After a meal in Crystal Palace, we parked the cars up at the Travelodge and got a good night’s sleep. In the morning, we normally we take the mini and line up with the 2000 other cars. However, this time I stayed in the hotel, whilst Jean and our Son took the car up at 5.30am.

They then returned and we all went up a little later. Through ingenious use of the support car and my travelscoot I managed to reach our mini and was able to participate! Hurrah! We even had time for a bacteria burger and use of one of the portaloos!

After being used for a whole day and night by campers a portaloo is truly a sight to behold! In the 21st century they do hang little tubes of hand cleanser inside in an attempt to make it more pleasant. With my focus being my balance it’s simpler to just wee on my hands (urine is sterile, myth).

Here is an unphotoshopped photo of the “shitter” clean up truck that is always there!

I will be back next Friday with a research opinion post just in time for the yearly awareness month for MND.

I leave you with this beautiful scene of Brighton Beach on Sunday.

I love Brighton. A place where anything goes. You can wear pyjamas or a dress, eat 3 portions of mush (lentils and beans) a day, listen to Ed Sheeran, even Sam Smith and vote green without being called a freak!

Oh, I nearly forgot. You’d better raise a mug of Bragg’s whisky to ‘Arry and Megs!!

Here endeth this special Royal Wedding Edition!

Oh and apologies to Travelodge for the smashed loo seat. You really should invest in soft close seats!

One thought

  1. As I was recently diagnosed MND, I appreciate a nice cheery but informative blog, so I subscribed last week and caught this post! Thanks a lot and good luck……


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