Get ready to crumble! – No tie break required!

Wow, what a week! I have replaced all my body fluid 3 times over! Firstly, and apologies, my rollator review is delayed a few days. Time conspired against me, and as I am only answerable to myself, I was granted permission for the delay! In addition I wanted it to be instructive and didn’t want to rush compilation. However, you get two posts this week. This and a serious one. See the end of this post for details.

Ok, so it’s a mindless stream of thoughts and events this week!

First, last Sunday, our planned BBQ went very well, and I now have a new way of cooking! I do it sitting down! All the preparing, such as carrying plates, food, the table and BBQ etc is all now done by Jean and family.

Fortunately, I had my handy Surviving heatwaves pamphlets by Lord Lee Bragg (available from all good bookstores)

Pamphlet 12.4.5 – BBQing from a seated position

Pamphlet 13.5.6 – First aid for accidents caused by BBQing from a seated position

That day was just the start of a great week of weather.

On Monday, I purchased some music! Yes in this world of streaming, I still tend to buy rather than subscribe. The subscribe to get access to all music still seems an expensive way to buy music, and of course, if you ever stop subscribing, you have no access. I am not tight readers, just fussy!

What was this new music? Lindsey Buckingham and Christine Mcvie’s new album, ie two of Fleetwood Mac. It’s proper music! Darn good. Worth a listen!

In fact, the album reminds me when of one of my infamous business trips. I was in an airport toilet in Nice, France. For some reason, whilst urinating, I was chatting with a colleague about the excellent Fleetwood Mac. I glibly commented that Lindsey Buckingham was (and still is) the main talent in the band. At that very moment the real Mick Fleetwood came out of a toilet cubicle! I kid you not!!! Or for the young amongst you, WTF, and PMSL! I didn’t ask for his autograph, I wasn’t sure he had washed his hands! If you are reading this Mick, I didn’t mean that he was the only talented one! Please forgive me. But kids always wash your hands after visiting the loo.

On Tuesday I had my weekly massage. This week I requested to focus on my lower back. It’s been a bit painful recently. With MND muscles go tight and it was restricting movement. I continue to attack this disease as you should, i.e. with no respect and keep moving.

After my physio I met my new pal Stuart and his good friend Dean for coffee at Goodwood and watched the “wildlife”.  Well that’s not exactly how Dean put it, but you get my drift readers.

But jesting aside we had a great chat, discussing life, everyday stuff and potential future ideas for raising awareness of Motor Neurone Disease.

That evening we took part in the monthly quickly quiz night (5 rounds, 20 teams) at our favourite pub, the Woodmancote. We won 2 rounds! Taking advantage of the weakened “Fishbourne Fryers” team, we didn’t hold back and went in for the kill! We were outright winners. So I am proposing a new team name, No Tie Break Requiredwhat do you yah think? And the winnings? Well it paid for free apple crumble all round!

By Wednesday the temperature had reached The day the earth caught fire temperatures, and we ventured out early for my trike ride. By the time we got back, I was sweating like a P I G! Luckily, I had on a pair of Lord Bragg’s SweatRetain™ shorts, that retain the sweat and with an ingenious soapy mechanism use it to wash the shorts whilst in use. Genius!

I had some maintenance work to do on my trike this week; cable retensioning, oiling and cleaning etc. This is something that would have taken an hour before MND. Now the process needs planning and the assistance of Jean to put the bike in a position to do the work. Here you see an ingenious trike raiser and work area suitable for me.

It took me all afternoon shifting around on the chair with essential breaks for water and ice cream (prescription level dose).

Getting out on my trike has been top of the agenda this week, and I had two encounters with nature! Firstly, a nice Labrador, named Milo, ran up to me and wanted a cuddle and left slobber on my shirt, followed by the owner who said “Sorry you are just at Milo attack height“. Grhhhhh.

Secondly, here I am re-enacting a scene when a sodding bee appeared in my personal trike space (PTS), and remained static as I cycled along, with me desperately swotting!

On Friday I attended a driving assessment. What is this you ask?

On being diagnosed with MND, although I had only minor issues at the time, it was vital to inform the UK DVLA about my condition, and also car insurance companies. With early MND there is no reason why you cannot drive, but you must inform the authorities. For those of you recently diagnosed, please do this. It will be fine, and the insurance companies cannot deny insurance if your doctor indicates that you are fit to drive.

However, they MUST be told. When I did mine, they didn’t bat an eyelid, and just said thank you for telling us, and it is now on your records. I have had no problem getting insurance since.

You will, however, get a limited time licence. Mine. was for 3 years, starting back in October 2014.

Three years have nearly passed, and I have progressed. However, I still drive and it is one of 2 places I feel entirely normal. The other is bed. Yes my muscles are changing, there is stiffness and some pain, and I need assistance walking. Driving is an independence for me that no healthy person could possibly understand. I can drive to my Physio and massage! If I couldn’t do this, how would I get there? It would be a nightmare.

The time will come when this won’t be possible, I know, and of course I was worried about the impending licence renewal. The normal process is that the DVLA contact your doctor/or the patient and ask for the doctor’s advice. Now, after 3 years there is no doubt that they would ask for an assessment.

There are centres all over the country, that carry out an independent check of your fitness to drive. So as I wanted to be prepared ahead of time, I decided to get one completed as it is only a few months away.

So, I arranged an appointment at Wessex DriveAbility and it was really good. The good news is that I was given the all clear, and they would send the report to my Neurologist so he can be prepared for the DVLA enquiry. I would encourage all of you out there still driving with MND to add this to your list of checks to be done ahead of time.

The assessment was in two parts. Part 1 took 40 minutes and was comprised of medical discussion, physical checks, reaction time tests and cognitive tests. Sounds daunting? No not really. The speed reaction test measures how fast you can move your right foot from the accelerator to the brake. Very simple, you press with your right foot a button, a red light comes on, and when it changes to green you release, and place your foot on the brake simulator pedal. My times were all in acceptable range!

The cognitive tests are similar to those I last did when I participated in a research project for MND. One of the segments is saying as many words beginning with a specific letter in 30 seconds. I was given the same letter as then ……….. the letter S! I remembered embarrassing myself, back then, by including Sex and Shag! This time I was more refined!

I do think the speed reaction test should be included in the modern driving test for all.

The second part of the assessment was a 40 minute drive with 2 assessors, one in the back, and one next to you! It all turned out fine and I enjoyed the drive. At the end I indicated that I wanted to come back every 6/12 months if necessary. As I say, events might overtake this, but I felt very assured that I was safe to still drive. In fact I was praised on my use of mirrors! Kids, don’t forget your mirrors. My over-use of mirrors comes from riding a motorbike, which is something I absolutely cannot do anymore, to Jean’s relief.

Until next week readers. But don’t forget this week’s serious post, Chain Reaction.

Finally, here I am on my first outing with SweatRetain™ Self cleaning shorts.

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