Hi readers! To get you in the mood for this week’s jibberish please watch/listen to this amazing version of the Rolling Stones anthem – Jumpin Jack Flash! This cover is 40 years old itself! Groove around the kitchen and then return to this page immediately to enjoy another week of onein300 stumbling and jumbling through life! Or even better, if you have a multi tasking device, play it and read my blog at the same time and imagine you are reading in a rocking Indian restaurant!

Oh yes it’s alright now, in fact it’s a gas…………….

We all can get that “Jeesh thank goodness” feeling now and then. Well it certainly appears to have been my life existence recently!

This time last year we were kindly invited to two of our friends wedding planned for September 2019. We, of course, said yes, but a year is a long time living with MND as we all knew what could happen. Our friends had been ultra-considerate in both planning and helping us for attending even some 12 months ago, and of course the world doesn’t centre around us. As the months ticked down I received photos of stairs, steps etc to discuss how “Could I manage them”, taking into account my disease progression.

As a digression, my readers have probably noticed, that I tend to like to remain blissfully ignorant of change. It’s my way of coping, but also I have the deep seated trait of “not wishing bad”. It can help I am sure. Why look for problems?

Back to the wedding. The groom slowly reassured me that they would carry me if needed! This is a tricky situation. Folks, it takes a while to accept that sort of help if I was to be entirely honest, but I knew it was totally sincere.

Fast forward to September 2019 and the joyous event was only a week away.

All of a sudden I had a bit of a melt down when I noticed the hotel front entrance (from google maps). What I thought was achievable was potentially a cliff face. It was the Sunday before and Jean instantly said:

Right, we are going to the hotel right now!

And off we went to Brighton to see the steps for real…

The North Face of Everest to me!

It was quite a terrifying climb, with no handrails!

I was going to take one of those climbing guns – phadombfff, phaddombff……, anchor, phadomdff, anchor. However, I understand they are not “eco” now so I put it away. But it’s an idea mobility challenged people! Could it be a campaign action stunt where we deliberately vandalise uncooperative establishments with new rope handrails, freely installed!?

Being awfully serious for a moment, even the most simple things can help access. And remember, I was talking about Dishoom in London? Reading their book, “From Bombay with Love”, there is a photo of a rope hanging down in an Iranian cafe in Bombay, purely as an aid for the disabled!

Surely we can learn from this in our so called 21st century buildings!?

It was good to see the hotel, make the finer travel plans, and when we returned for the wonderful day, I gratefully accepted the physical help to gain access, and we had a smashing time.

A Great Cake made of Macaroons

Congratulations to Paul and Nadine.

Weddings, weddings, weddings. So full of the wonderful cross section of human culture. Families, friends, young and old, and memories shared. Everyone was great and the day and night passed without major incident and a thoroughly good time was had by all sending our hosts off forward in married life.

Apologies, however, to the hotel for the small table incident. Jean, assured me that she had been drinking only purified organic mineral water for the last 2 hours just before she kicked our table and cleared the surface of all glasses rather quickly and with stunning efficiency!

After returning from such a wonderful weekend there was a major, well I thought major, issue in our village. There was the shocking news that significant roadworks nearby were going to result in all excess traffic being funnelled through the tiny streets of our village in but a week’s time, for 6 whole weeks! And to add to this, severe parking restrictions were going to be imposed!

Boom! This was outrageous, and our local council had appeared to have sneaked this in without any consultancy with our Parish Council or us! Having nothing better to do, aside struggling around the house, I leapt (crawled) into direct action!

I found all the relevant council contacts, leaders etc and helped the locals with a mini campaign, purely by email and local social media. My blood was boiling.

Who knows what effect we had, but concessions were achieved, the removal of the parking ban and reduced roadworks duration, and the result was an overall feeling of some success. It’s alright now….. Well done to the whole Village.

Anyone thinking I can get a bit stroppy about things can be reassured I don’t get upset that often. However, there was another situation this week which actually needed a stern letter to be composed…


What’s wrong with that? Modern, but yet traditional and polite communications. Today’s MPs (Members of Parliament for my American readers) could learn a lot from such an example of respect and decorum.

Anyway my toast has since been alright, although slightly more tangy and tingly than usual, but generally alright!

However, there was yet a further incident on Wednesday hinting that Jean might have not taken this letter so well!

I rollatored down to the our office where I keep my scooter, parked up, placed stick against wall, and moved towards the vehicle. As I put my hand on the seat top, it suddenly swivelled!! Shock, horror! I managed not to fall, but a screw had come conveniently loose, and spun out!! It was totally alright the night before when I put it away! Suspicious! But it was alright folks!

I made a temporary fix, fortunately having a similar spare bolt from one of Lord Bragg’s Aircraft repair kits (available online). I did, however order a new original part and had secret spy cameras installed!

Last Sunday Jean and I made a quick trip to London for shopping and to see one of my heros, Richard Dawkins, give a talk at the Festival Hall.

We dropped our dogs at our son’s, leaving strict instructions for feeding, watering, music, and what to avoid on TV News! They have been a bit barky recently when they see certain people! I was going to say who, but Jean said it was politically incorrect! Grrhhhh.

After a relatively quick drive, and parking in the disabled spots right outside the South Bank theatre, we enjoyed the afternoon and then returned for the highly civilised Sunday evening talk.

We had great box seats, which are not posh at all readers (same price as those in the pauper’s pit!), but much easier for disabled people. I can report the Festival Hall works well! Mind you, I did have the urge to chuck pork pies at those in the stalls. Is that normal behaviour?

Richard was great as usual, and for those who don’t know of his work, he actually coined the term “Meme” over 40 years ago in relation to both genetics and cultural ideas. He was asked about the term during the discussion, and he was his usual robust self and commented “it’s not entirely what the world thinks of today”.

We did have a major snack issue though! We tried to purchase some Maltesers, my stable theatre snack item, but I was politely informed by the access staff they don’t sell such crunchy stuff for events that involve lectures or interviews!

And finally this week we visited a local comedy club evening, and we were kindly offered a lift so we didn’t have to worry about driving.

I was given the shot gun seat next to Tony who was driving, whilst Jean and the other ladies sat in the rear! During the drive, I was extremely disturbed, almost quivering, to experience some serious back seat driving! I felt so so sorry for Tony who was only doing his best. His face said it all. So much so, that on the return journey I implemented a driver communication relay system, where any instructions had to be sent via myself in shot gun.

Lee, can you tell Tony it’s the next right and he should be in the outside lane?

To which I relayed to Tony in my best MND voice….

Sworn ting. Toe knee, twis wight and woo knead tubee in wonkside twain.

They soon learnt to let Tony just drive us home!

The show was awesome, although Jean running (invading) onto the stage, only just slightly over excited, to receive a prize won in the raffle did bring the predictably and highly comedic comments and banter from the hysterically skilled compere. As they say in internet world, I absolutely PML!

I leave you once more with those eternal Rolling Stones lyrics…

”But it’s alright now….”

STOPPRESS – in relation to my scooter screw problem, I was delightfully surprised to receive a small packet from Germany, containing 4 screws! I didn’t ask them for these, and only sent an email simply asking what the size was! What amazing service!

A big shout out for escooter.de, Travelscoot suppliers to European locations. Certainly going the extra mile.

One thought

  1. Well done Lee – you’ve excelled yourself this week! Your experiences at the wedding made me remember a wedding I went to in Cornwall, when my partner, Terry, was in a wheelchair. The dining room was down about 8 steps and 4 strong men carried the wheelchair down them, much to Terry’s embarrassment! The bathroom was disabled friendly but, as we couldn’t work out how to put the heating on (it was December) neither of us had a shower until I’d summoned up the courage to ask someone how it worked! Terry also fell asleep while driving home on the motorway, which could have been nasty but, in spite of all that, we still had a good time!


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