Good day, readers! Sorry about my late post. I had gone AWOL! After a quiet week in the UK, we now have a big few days of politics ahead of us. Lord Bragg, as reported in last week’s post, is supposed to be attending the House of Lords, but he has taken some time out for relaxation, and a bit of Jazz! So this post is a bit scatty, rather like me! So gather your children together, share the chicken pox, take cover from storm Doris and enjoy my special midweek half term edition!
Lord Bragg has spent a few nights at Ronnie Bragg’s Jazz Club, mingling with the great and the good, including Sir Mick Bragger of the Bragging Stones, who was last seen running to the toilets after eating one of Lord Bragg’s fiery chicken wraps using that marinade! as promoted last week. You should have seen his lips! One of Bragg’s discreet infrared bathroom security cameras captured Sir Mick!
This incredible story reminds me of another one of my actual true life events during my career! Many years ago I made a short trip to Memphis, Tennessee, on business. I left the UK at about midday, and arrived with my body clock at some time in the very late evening. I was tired, but young, so had agreed to meet my client for a meal with colleagues. By the time we got to the dinner table, I must admit I was really flagging. But hey, it was business! I just had to get on with it. Suddenly, just after my starter, my bottom lip expanded like a hot air balloon! I had no idea why. Was it a cold, the food, tiredness or a vicious American insect bite? I was feeling pretty rough so I whispered to my colleague “I am going to have to retire, I feel and look like s***!” Only to be told, “Lee, we have to stay up, it’s only right!” Needless to say, I stayed and I was all perky the next morning! But just why did my lip explode?! By the way, having been targeted with MND I thought I would now be spared the crabby parts of life, like swollen lips, spots, etc. But now, they still happen!
On this very same journey, like every trip abroad, I planned to go out for a jog in the morning in order to keep fit. I loved running the streets of all the places I visited globally (in fact, I could write a book on my runs!). On this occasion, one of my clients volunteered “I’ll come with you, but we’d best go real early in the morning as it gets seriously hot by 8am here“. So off we went at 6am for a short 45 minute run. It was in a wealthy part of town and I was fascinated by the roads and the extremely grand houses that we ran past. Chatting, as we sprinted through the streets, it became apparent to both of us that we were seriously lost! This was in the days long before smartphones etc. Now the sun was burning down on us in the Memphis heat. To cut a long, and rather distressing, story very short, we finally found our way back to the hotel after an hour and half, bright red and dehydrated just in time for our meeting! Although I cannot exercise in the way I used to, I do still keep an eye on hydration even after limited exercise or physio. Remember readers, keep hydrated!
Now the big news this week. I have been recognised by http://www.stairliftsreviews.co.uk as one of the top 100 disability blogs! Now to be 100% honest, and with all due respect to such publications, 5 years ago I never imagined I would reach this peak of fame! I will state now that I receive no payment from the company, although I am sure Lord Bragg will want to talk to them about his new patented high-speed stairlift technology! It is still in testing and includes airbags! He is looking for testers (dummies). All day attendance required, lunch and sick bags provided!
Being a man of leisure (ish), I do now experience the world differently to several years ago. I have always been a technology person so nothing unsettles me there, but I do admit I have become a Luddite when it comes to so-called “YouTube” celebrities. Last week, whilst watching the BBC news, a person I had never heard of was dropped by Disney for advertising on his YouTube channel in-light of certain videos he had posted!
Anyway, onein400 is the only Internet (stairlift) sensation you need to know about now!
On the health front, I received my regular massage, hydrotherapy and my MND Specialist nurse visited midweek. We discussed the brand new MND Care Centre that has just opened in Sussex (Brighton) by Professor Nigel Leigh. This is the 20th in the country and aims to bring together multi-disciplinary teams for both care and research. However, because of the nature of MND, visiting a physical “Centre” may not be possible, so it is all about how best to work in the region. Jean and I have been invited to the stakeholder meeting as part of a potential steering group. We are both very proud to be involved in this vital centre. I hope we can provide some useful input as time moves forward, and I will report on the developments as and when they happen.
I have been intensely researching data and intriguing observations for my statistics tribute to Hans Rosling as mentioned in last week’s post. It’s taking a little while as I want to get it just right, containing not only a display of colour but interesting facts and talking points. Watch this space!
This week, it appears that Spring has really arrived in the South of England. For me, it is a different world, the outside now seems attractive. Just a few degrees have made all the difference. It hardly seems possible that I used to be at the top of a mountain at this time of year, but this is a key aspect of life, ie constant change, I have been able to get out in the garden and still have enough stability to get back in after spending time outdoors. As someone who has always been adventurous, and enjoyed the world, it’s now rather a hard bit of life with MND. Every trip is planned with military precision, with my mobile phone of course, and parking being as close to the destination as possible. The changing weather whilst I am out can bring some nervousness. I fight these feelings, and I can normally bring myself round. It is doable, and for those of you facing the same predicament as me, please try everything to work around it. I know it’s hard, and as one who used to do many stupid dangerous things, I was surprised to find myself feeling this way.
I was reading an MND Facebook group the other day, which can really offer valuable support to people living with the disease. In reality, although there has been no clinical treatment advance as yet, the Internet and, more importantly, rapid communications have really made a difference to those of us living with MND. I certainly cannot imagine my life now, without technology. I know the wonderlust of when I was incredibly fit and adventurous I would yearn for a disconnected few days. However, I can only say now that being connected is a miracle and an advancement that man has made. Don’t knock it you rapid two legged humans!
Oh, I rather got distracted from the reason why I mentioned the Facebook MND group! It was a gentle question regarding physio and massage. It went something like “In the long run, do fellow MND sufferers feel that physio makes any difference?” Of course, my usual silly approach to life was begging to answer with
“Well in the long run we will all end up 6 foot under!”
However, of course, I answered truthfully. My daily ritual of spending 25 minutes focusing on a series of body stretches, my weekly deep tissue massage, and hydrotherapy really have made a difference. I just cannot think about the actual downhill progression that is happening despite this. So of course it makes a difference. Actually at my last Neurological review with Dr Death, he made a comment, quite brutal for many to hear, that he just cannot abide the unwillingness to attempt basic things. I still have his famous quote resonating in my ear “Some people Lee, fall into a wheelchair, like a duck to water and do it far too early”
I am now nearly 3 years post diagnosis, and 5 years after first symptoms, and this was me last week. Yes on my trike, which I know I mention a lot, but it’s been a real miracle for me. It is now a year old! I almost look normal, apart from now being known as the Nutter from North of the Village Square who rides that crazy contraption that you shouldn’t talk to! Oh, and getting in and out of the trike is rather like the launch of Thunderbird 1!
Please forgive the silly hat. I hope soon this may be sent to the winter cupboard!
Till next week folks!