Good morning, all! Another week has passed and the great cartoonist, Sheesh Bragg, is back documenting our trip to Brighton.
However, I write this post with very much mixed emotions….
Last Wednesday, my good friend, Jim, sadly passed away. Jim was only diagnosed with MND in May 2016, less than a year ago. This disease progression is typical and although I have seen many people die in the time since I joined the MND club, Jim’s passing has really hit close to home. I was totally honoured to have known Jim, a courteous, thoughtful, polite and inspiring friend. We both had reasons to learn from each other, and we did extensively. Thank you Jim.
I had got to know Jim just 2 months before he was diagnosed. I had phoned Jim because he was responsible for our community website and was very keenly involved in our village life. It was the challenge of controlling car drivers speeding in the village that introduced us. We were both concerned that the new 20mph zone was not quite implemented correctly. I remember my first words to him “Please forgive my voice I have MND, but my brain is all there!“. A little over 3 weeks later, Jim sent me an email saying he had joined the club!
I was shocked, although, based on the 1/400 lifetime risk, not overtly surprised, that our small village of 2000 residents would contain another person currently living with MND.
Jim, I hope you will get my blog wherever you are, and my thoughts are with your family.
“I am now the only guy with MND in the village” – for the time being….
I know Jim would want the world to rock on! In fact we both talked about the subject several times. So let’s get on with a onein400 post!
Jean and I had a weekend away in Brighton, Lord Bragg’s home town. We were joined by friends talking, eating and laughing. Planning, as always, was vital.
Jean dropped our luggage at the hotel, whilst I sat uselessly (guarding) in the car. We then drove around the corner, parked close by, and I walked with my rollator to the hotel.
Brighton is, for those unaware, the only Green Party held parliamentary seat in the UK, and has a unique atmosphere. I do have to say, having visited and worked in many places around the globe, it is one of the best places in the world. Anything goes in Brighton. From the delicately named Revenge night club (apologies to Jean for that incident) to the amazing Brighton Pavilions and seaside atmosphere. There is something for everyone.
Jean and I used to stay up the hill in glorious Kemp town, but now, because of my mobility, we stay right in the heart of the town.
The seaside also brings back memories of Jean’s Uncle Denis. He was a Yorkshire man, straight talking, gentle and completely and utterly unreasonable! We used to visit him and Jean’s Auntie Joan, who was ever so posh. She used to pick the very best places to go, and always liked quality. On one visit we took our son, who was 5 at the time, to the beach at Great Yarmouth.
Joan said, “Let’s get an ice cream”. Whereupon she started to queue in a line with about 10 people.
Uncle Denis quipped, “Ye by heck, why you blooming queuing in that queue for?! There is absolutely no one waiting at the ice cream stall next door”
Joan politely stated, “Denis, this is the finest ice cream, and everyone in town knows it“.
He responded “For jeepers sake, I just don’t get it!“.
Ahh, great memories of the seaside!
Back to our weekend. We met our friends, Paul and Nadine, had a drinkie and then went for a good old shop. Yes, I am slow but I can still move around the streets. I needed some new shirts and decided to drop into Ted Baker in the Laines. Off we went, me with my rollator and my minders!
I must get my minders suitably dressed in all black with garish gold jewellery for future trips!
My rollator goes everywhere, including a clothes shop full of lovely shirts and dresses. What a mess it would be if I grabbed, and ripped some beautiful gown as I was falling into the rails of clothes. Mind you, I was very careful not to run over the long trains of some dresses with my wheels. Reminds me of this great episode from the comedy Father Ted. If you haven’t watched it, this is a scene where the priests end up lost in a department store in the Lingerie department! Chaos ensues!
I managed to get my rollator in the changing room. Items were tried on, chosen and purchased in the blink of an eye! Even at my slow rate, I estimate my items per minute purchased is higher than my lady friends! Know what I mean, guys?
We planned to go to our favourite restaurant, Riddle and Finns. It is always packed, and doesn’t take reservations. You walk in, put your name down and they phone when a table is ready. It is the best restaurant in Brighton, in my view, by a country mile!
When we returned, that night, at the allotted time, the temperature was dropping so I got a bit concerned with my walking. However, Nadine (minder number 2) was sent on ahead and played the disabled card well. We were ushered in, and propped up at the back until our table became free. We then proceeded to eat beautiful food, and were treated amazingly by the staff and our waitress was so attentive! It’s a great place.
We actually bumped into the stern Pamela Bragg in Brighton! She loves Brighton and was there with her new boyfriend…
Pammy is always “bragging” about how lovely and environmentally friendly the town is with lots of cyclists. She can be a bit annoying to say the least.
More from Pammy later in this post!!
On the way out of Brighton on Sunday after a lovely brunch with Paul and Nadine, we passed the now famous wreck of the old West Pier, destroyed by a fire. Lord Bragg reminded me that it was never proved that it was caused by his “flame retardant” throw cushions in the Bragg VIP Lounge on the Pier in 2002.
What a great weekend. You can still do these things with MND. Don’t be afraid, just plan.
On Monday night Jean and I ventured out, after dark, to Worthing! How daring I hear you say! It was the West Sussex South MNDA AGM! As the “faces” of the local branch, we absolutely wanted to go. Still no news about my “legs of the branch” application by the way! Before I continue, I remember once being in Nice, France and visiting a superb Indian restaurant. On their door, they had three branches – Nice, Paris and Worthing!! True story, honest!
Back to the local AGM. It was a great evening, meeting branch volunteers, the committee and also Sally Light, Chief Exec of the MNDA. Thanks for the great discussions Sally regarding the subject of raising awareness of MND.
As the night went on, much talking and mingling was done and slowly it became apparent what an inspiring group of people Jean and I were in the presence of.
A number of the branch have been involved now for over 30 years, often driven by personal involvement with MND. 30 years ago, MND was simply not spoken about, and because of the prognosis, advocating and campaigning was hard. I mean really hard. Today’s media and communications make a lot of things so much easier. Back in the 1980s living with MND was totally isolating. Without the work carried out by the current senior members we wouldn’t be where we are today. Thanks to all of you. I have made some new inspiring friends.
We heard some great reports from current members of their achievements, including the recent Brighton Marathon, Christmas card making etc. The amounts raised are absolutely fabulous. A small raffle on the night alone raised over £100.
On Thursday, I had a planned Dentist visit. I hadn’t been for six months as my last appointment was cancelled. It cannot be said that my dentist is very accessible, i.e. up very steep stairs, wonky floors etc. As I lay in the dentist seat I indicated that I might suddenly cough with my heightened gag reflex. At first, the delightful ultrasonic cleaning tools and floods of water made for a bit of a splutter (sponges and wet suit required). However, Tanya had a brand new toy up her sleeve! A larger, uberpowerful suction gadget. This thing could suck for Britain!! I was able to endure a good 10 minutes of mouth scraping! I made a promise to the hygienist that I would look at acquiring an electric toothbrush (what a fib) before I could be released. Mind you what was there to look forward to, the steep stairs on exit? The Marathon man chair now seemed more enticing!
It’s another bank holiday. Enjoy readers!
Oh and look what happened to poor Pammy. Jeesh those stitches!
Until later this week readers! Now for that BBQ!