Tuesday, 8 January 2019

World Domination; Not as easy as you'd think!

You’d think it would be easy wouldn’t you? I mean World Domination can’t be that hard? Especially as I’m limiting myself to the world of Classic Trials. I did decide that traditional Bond Villain style, total World Domination involving stolen nuclear submarines, laser firing satellites or deadly killer viruses might actually be quite tricky to pull off, so I decided to be selective….

So I get my entry in for the Clee Hill Trial on 20th January, acknowledgement email received and my name appeared on the entry list online, all well and good! Still only eight of us in my class, so that’s only seven people to beat (or at the very least I’m assured of eighth place if I manage to wobble all the way round) and as it seems I have been appointed official guide for the five other Hertfordshire TRF members who have entered, on the basis I actually know how to read a road book! I’m sure if necessary I could lose them somewhere in the wilds of Shropshire!

Then the bombshell, It seems my tyres are not allowed!

Some background is required; when KTM designed the Freeride, which is after all an Enduro/Trial Bike hybrid, they worked in conjunction with Maxxis tyres to produce a tyre specifically for the bike, the Trialmaxx. Now to me I just assumed this was a trials tyre, they certainly look like trials tyres and as I haven’t owned a bike with trials tyres since 1989, why would I think any different?


Maxxis Trialmaxx

Back then It was a Yamaha XT250 I owned that was shod with Taiwanese made Cheng Shin Trials Tyres, which despite the dodgy reputation of Chinese tyres back then (has that changed?) were actually really good tyres for trail riding and of course dirt cheap. And the funniest thing is Cheng Shin Tyres (CST) are still producing tyres today in Taiwan under the brand name of…..

Yes you guessed it…. Maxxis!

Anyway it turns out the Maxxis Trialmaxx is not “just a trials tyre” and in fact is also an enduro/trials hybrid. Mainly down to the fact that the tread blocks are spaced further apart than a “proper trials tyre” the specifications for which are laid down in the ACU regulations and this gives it a performance advantage, especially when muddy. If you look at the two photos above and below, you'll also see that the Maxxis has more prominent side blocks, that would offer better grip in mud. I had sniffed out a rumour that whilst this was a potential problem, everyone seemed to think it would be OK and most events allowed them to be used.

And then on the 3rd January I spot that the new Motorcycle Coordinator for the Association of Classic Trials Clubs  (ACTC) has clarified the regulations and absolutely, definitely declared the Trialmaxx as non-compliant. 

The advice being that anyone who presents with these tyres (or other non compliant tyre like an enduro or motocross tyre) at scrutineering (machine safety check) should be moved into “Class X” which basically means you are allowed to ride the event but don’t get scored and therefore don’t appear in the results… not exactly in line with the World domination plan.

It seems that the weapon of choice for classic trials or LDTs is the Pirelli MT43, itself not a traditional trials tyre, which to be honest are far too soft for long distance events involving lots of road work, the Pirelli has a harder rubber compound but importantly the block spacing and tread depth all still comply with the ACU regulations.


Pirelli MT43

But before admitting defeat and shelling out for new tyres, I contacted the Clerk of the Course for the Clee Hill Trial to clarify things, as the supplementary regulations seemed to imply some differences from ACTC regulations. It turns out I could turn up with the Trialmaxx’s and as a beginner I would most probably be allowed to ride but if my fellow competitors objected I would be moved into Class X. Not very satisfactory to turn up on the day before knowing my fate, so I decided to bite the bullet and change tyres.

I had also read that you only need a rear trials tyre so I asked this question too? The result is I have been allowed to stick with the front Trialmaxx as a compromise if I fit a “proper” trials tyre on the rear, so that has a least saved me £42, the cost of a front MT43.

So a Pirelli MT43 has been duly ordered; watch this space, World Domination is back on track....

So how is the Myasthenia coping with all this stress? Funnily enough apart from the ever present fatigue, which in itself has improved since my angioplasty, other symptoms seem to be pretty much under control at present. I just wish the same could be said for the side effects I get from the drugs... no fun at all!


Sunday, 30 December 2018

Plans for World Domination...

So as things continue to improve health wise, I'm adjusting to my "new normality" and in discovering what I can achieve, thoughts naturally turn to motorcycle competition but what to do? 

Obviously we are not yet in the rally season, the first UK event traditionally being the Brechfa Rally in March. But am I yet up to the rigours of a two day rally or is there an alternative?

So I thought of competing in a Long Distance Trial or LDT, for the uninitiated these are essentially long trail rides on public rights of way following a “route card” which is generally another name for a road book. During the course of the route a number of “observed sections” are included, essential tests of skills over natural terrain. So all the essential ingredients are there; motorbikes, navigation by road book and trail riding but at a much slower pace than a rally and only one day’s duration, what’s not to like?

I had always wanted to compete in one of the Motor Cycling Club’s three Classic Trials, The Exeter, The Lands End or the Edinburgh. These all started in the first years of the 20thCentury in the early days of motorcycling and were originally dubbed “Reliability Trials” as simply completing the events was a real achievement for those early machines. The first of these the “Edinburgh” originally ran from London to Edinburgh, to be completed in under 24 hours, no mean feat in 1904! 


Still referred to as Classic Trials, not because they are for “classic bikes” although many do compete in them but because of the “classic” nature of the events. As the Exeter takes place next weekend, the Lands End, that takes place at Easter in the South West seemed a good target (The Edinburgh that actually takes place in the Peak District these days is in October). So the Land’s End duly went on the sixty by sixty list.

But of course that means nothing “do-able” on the calendar until April but then I spotted the Clee Hill Trial was running again on the 20thJanuary after a break last year. Another Classic Trial that runs in Shropshire, starting from Ludlow. Looks perfect!


So a bit of online research into the event and I conclude:

Whilst the KTM 1090 Adventure R is a candidate for the MCC events as after all they cover several hundred miles, it seems something smaller is desirable for this event which is only 90 miles long. Indeed, my only experience of a Long Distance Trial was doing the Whitley 100 back in 2012, with my friend Michael Messervey on which we foolishly decided our KTM 990 Adventures were suitable bikes…. they weren’t!


To use my rally bike, I would have to change the tyres (only trials tyres permitted), put it back on the road as it’s currently on a SORN, technically speaking the advertising on the fairing would have to be removed or taped over as it’s not permitted under the regulations (but I’m not sure how serious they are about that) and to be honest the rally fairing is likely to be a hindrance on the observed sections, so that rules it out.

So I request was duly submitted to Grainne to borrow “Kevin” as she calls her KTM Freeride 250F, for the day! The perfect bike for this type of event, part trail bike, part trials bike. And she said yes!


So all that remains is to prep Kevin for my extra height and weight, I was able to do this successfully when I borrowed it for a day surveying in the Peak District and requires sliding the forks down through the yokes to the standard height, winding a goodly proportion of preload onto the rear shock and adding ten clicks on both rebound and compression damping settings both front and rear. I will also consider fitting the slightly longer side stand we have too as it is a bit precarious in that set up otherwise (see picture above for evidence). 

Fitting my road book holder will be easy as I’ve already adapted it to mount to the handlebar via a Ram Mount as used on the 1090R when planning Adventure Cannonball Club road book routes.



On the day itself, the event starts from the Squirrel Pub at Ludlow, right next to the Travelodge on the A49. I've stayed there before when working on mountain bike races at Ludlow so finding it is no problem! I did consider booking in there but at £93 for the night it was a bit steep but as it’s only a two hour drive from Milton Keynes, I’ve decided to drive up first thing on the Sunday morning.

So far there’s only six bikes entered in the B2 class (Solo motorcycles over 225cc and up to 450cc) myself included, so unless I do something really stupid like get disqualified, I’m guaranteed at least sixth place in class, world domination of classic trials here we come!

Or of course I could slap some trials tyres on the Rally bike, tax it, strip off the navigation tower and fairing and replace the standard headlight and then truly dominate by doing even better as there's only one bike entered in the C class (Solo Motorcycles over 450cc) 

But on reading the rules I spotted that if there's less than three in a class, they will be combined with another class. So most probably not worth the effort.

It's a tricky business this World Domination lark!

Monday, 24 December 2018

Bikes, Blood and Myasthenia

Life with Myasthenia Gravis continues and as I recover after my heart attack things definitely seem to be improving.

I'm guessing this has a lot to do with the fact that i'd obviously been suffering from the blocked artery for some time even though I didn't know it and that in itself must have exacerbated my myasthenia symptoms. Since having the stent fitted the (admittedly slow) improvement has been noticeable.

I still have good and bad days but the bad days seem to be fewer and those symptoms I do still get seem to be lessened and less frequent so all good. It is also likely my medication is starting to settle things down too.

Having received my new licence back from the DVLA and taken my bike out and coped OK, I thought I needed to book some duties with SERV OBN Blood Bikes as an experiment to see if I could survive a duty or two and still contribute as a rider member.


Ruby

My first thought was to book some day time only duties but in the event I had to work with what was available on the rota, so booked for last Friday night into Saturday morning and the Saturday day time duty (21st and 22nd December).

So having had Yamaha FJR1300 fleet bike "Ruby" delivered on the Thursday, seven o'clock came around on Friday evening and I clocked in by text but the phone didn't ring. Come eleven o'clock and I'm thinking of going to bed as I might get a call in the early hours but in the event I was still awake when the inevitable call came just after midnight. I had been preparing for this by continuing to take pyridostigmine into the evening. This is the drug I take to improve neuromuscular function and is required every four hours, with a very noticeable effect as it runs down.  My last dose is usually around six or seven o'clock as I don't normally need it through the night but this evening I continued and took some around 11.30. this was fortuitous as it takes 20-30 minutes to kick in so was working well as I set off.

The run was for a blood sample for cross-matching from Northampton General Hospital to the Blood Transfusion Service in Birmingham. A long run so my controller asked if I needed to rendevous with Warwickshire and Solihull Blood Bikes (WSBB) at Junction 2 of the M6 so they could complete the run. I decided that given my circumstances, this would be a good idea and asked if this could be requested but said I'd be happy to run all the way to Birmingham if I had to.

I set off under cloudy skies and it was relatively warm and dry but sadly that lasted all of five minutes! I was rolling down the slip road onto the A5 north bound, when the monsoon started!!!

The rain was of truly biblical proportions, I genuinely considered stopping under one of the bridges, visibility was so bad. The only positive was my waterproofs are excellent and my heated jacket and Ruby's heated grips were doing their jobs. So I persevered and by the time I reached the Old Stratford Roundabout and turned onto the A508, the rain had stopped. I had to contend with wet roads and lots of standing water and the occasional shower for the rest of the night but thankfully it was never as bad again.

Arriving at Northampton General, I collected the sample and got the news I could hand over to WSSB at the Tesco Extra just off Junction 2 of the M6 near Coventry.

Setting off up the M1 and M6, I just set the FJR on cruise control, turned on my heated jacket and the grips back on and settled into the ride. I find riding through the night quite enjoyable and this was no different, near deserted roads are a refreshing change in this day and age. I eventually rolled into the car park at Tescos around 2.00am and handed over to Chris, who was waiting in WSBBs marked car... no roughing it on a bike for him!


02:00 am just outside Coventry

A trip into a strangely deserted Tescos to use the toilet and to grab a snack and drink to keep my energy levels up,  I checked in with Malcolm, my controller who confirmed there was nothing else for me and then set off on the long journey south and home. Arriving just before 03:30 I again checked in with Malcolm and in the absence of any more jobs climbed into bed for some much needed sleep, safe in the knowledge I was unlikely to be called again for a few hours as our procedures do require a minimum rest period after a late night run.

My day time controller, Paul checked in with me around ten o'clock but had no jobs at that time and it continued that way through the day until after lunch...

Around two o'clock I was notified by Paul of a non urgent transfer of platelets from the Blood Bank at the John Radcliffe Hospital in Oxford up to Kettering General Hospital that would be ready for collection at five o'clock. Now the only issue was the fact that this is a four hour round trip so there was no way I'd be finished when my duty ended at 7.00. I was due to be handing the bike straight over to Robert, the next rider on the rota, so made arrangements to ride straight to his house from Kettering and he could then give me a lift home as this would only take about 20 minutes. Ian the controller for Saturday night was appraised of the plan and all was set in motion.

At four o'clock I left home for a leisurely ride to  Oxford, collected the platelets at 4:50 and then headed off for the 90 minute ride to Kettering. Thankfully traffic was light and the roads now dry so I was able to reach Kettering in only 70 minutes. The only negative part of the ride was the blind Audi driver who decided to pull straight out in front of me at a roundabout on the A43 at Brackley and then when he realised his mistake, did exactly the wrong thing and stopped in the middle of the roundabout! Luckily I had seen him approaching the roundabout too fast to stop easily so predicted what he was about to do and was already braking to a stop as he pulled in front of me, so no real drama! But I'm still not sure how he could miss a bike that is lit up brighter than the average Christmas tree!


The view he would have seen!

Even in daylight it's hard to miss

After the drop off, it was a swift ride back to Robert's house, dropped off the bike and jumped in his car and I was back home at eight o'clock, only an hour after I was due to be off shift so no real problem.

So how did I stand up to this? It's fair to say Sunday was a bit of a wash out, feeling very fatigued and my neck muscles especially were very sore. Knowing this to be a potential problem as I hadn't worn a crash helmet for any length of time since August and myasthenia tending to affect my neck muscles in particular, on Friday night I had worn my BMW GS Carbon helmet as it only weighs 1200 grammes. However having a peak, it isn't very compatible with the screen on the FJR causing a lot of buffeting and noise. 


BMW GS Carbon

So on Saturday I swapped to my Schuberth E1, this also has a peak but it can be removed in seconds and is a lot quieter on the FJR as a result. The downside is it weighs 1750 grammes and you can certainly feel the difference and no doubt a major contributor to the sore neck muscles. 
Schuberth E1

So it seems I can successfully survive a blood bike duty (or two) but for future duties, I think I'll try and stick to day time shifts on weekends or bank holidays and this will also give me a suitable rest period in between rather than doing consecutive duties. And I'll stick to my carbon fibre crash helmet and put up with the noise!

Onwards and upwards as they say, so on Monday by now feeling a bit better I rode my KTM 1090 Adventure R to work for the first time since August, no drama although the forecast was for a dry, warm day with temperatures around 6 to 7 degrees. No such luck as the warmest I saw it on the way in was 2 degrees, as always I was grateful for heated grips and my heated jacket!







Thursday, 13 December 2018

Tempus fugit

Yep, Time flies...

It seems this being off sick thing is getting to be rather busy!


Doctor's appointments, Consultant's appointments, blood tests, cardiac rehab, medicines reviews and still sorting out insurance from the car crash, it seems that any thought I had that i'd have plenty of time to keep the blog updated was misplaced but I finally got here.


So dear reader, last time I blogged I was still inmate of Milton Keynes Hospital, so what's been going on?


You will recall I had returned from the John Radcliffe Hospital having had my angioplasty but there were still concerns. In order to detect heart attacks they test for a protein in the blood called Troponin that put simply is an indicator of damage to the heart muscle. This was the blood test they did on the Wednesday evening to confirm I'd had the heart attack and produced a level of 2.9; a normal level being below 0.4.


What was causing concern on my return to MK on the Thursday night was the latest blood test showed a troponin level of 38.0!!! 


ECGs were also still flagging concerns so I spent Thursday night into Friday morning on a cardiac monitor, having more blood tests, regular observations through the night, yet more ECGs and was visited by the duty SHO. She in turn got in touch with the Cardiologists at John Radcliffe for advice. 

By morning my troponin level had dropped to 19.0, still stupidly high but going in the right direction, the message from the JR was along the lines of "of course his levels are sky high, we've been poking around in his heart" but by Friday daytime all was settling down nicely, I saw the consultant Cardiologist and in the afternoon went for an echocardiogram.


This showed no permanent damage to my heart  although did show something called Hibernating Myocardium, damage that should hopefully recover in time. The next day I was deemed well enough to go home and signed off work for a month, which is where you find me now. 


In this time I have had my not inconsiderable number of medications sorted out as there were concerns that one of my heart medicines, a Beta Blocker was counter indicated for myasthenia but upon seeing my Neurologist, she confirmed that in the "Top Trumps" of medical conditions, the Heart always trumps Myasthenia, so it was OK to go ahead and take it. So I was now on ten different medicines and that meant I was taking twenty seven tablets a day!


One bit of good news was my Neurologist also agreed to start reducing the amount of steroids I have to take month by month, so from the first December I was only on twenty five tablets a day!

However a bit of a blip last week had me back at hospital with chest pains after my blood pressure went sky high and so I'm back on my original medication (a calcium channel blocker) as well as my new one (an ACE Inhibitor) and it seems to be doing the trick. But yes that means I'm back to 11 different medications and 27 tablets a day!

I've also had an assessment for cardiac rehabilitation and they seem pleased although the combination of Ischaemic Heart Disease (to get all technical on you) and Myasthenia Gravis does seem to fascinate the medical profession and i'm seen as a bit of an "experiment" or rather the "I've never dealt with these two things together before so we're going to have to make it up as we go along" approach. The price of a rare condition I guess? Anyway the assessment went well, they are pleased with my progress and I'm back next month to meet an Exercise Specialist.

I finally got the van back from the repairers so that's all nice and shiny again!

I also got a decision from the DVLA and have had to surrender my driving licence for a "medical review licence" which does what it says on the tin... it lasts three years and is renewable after a medical review. This does seem to be the standard approach to anyone with Myasthenia if they don't actual suspend your licence so it's what I was expecting.




The only downside is I loose my "grandfather rights" to categories C1 and D1 (3,500kg to 7,500kg vehicles). That's because they are now considered Large Goods Vehicles (LGV), I'm a bit miffed about that as I do on occasion use that entitlement. I am allowed to reapply (without a test thankfully) but will have to provide both a Doctor's and an Ophthalmologist's report; no doubt at considerable cost!

On slightly better news SERV Blood Bikes have confirmed that their insurers have no problems with my new medical status, so I can continue riding with them when I'm up to it, although at the moment volunteering in one of the groups three 4x4s seems the more attractive option.



I did get out on the bike for the first time since my heart attack yesterday, only a short 20 mile run over to Brackley as SERV were doing a collection at Tescos there, so I popped over to offer my support. Only half an hour each way was no problem although I was very grateful for my heated jacket and hand grips.

Friday, 16 November 2018

Just when you think things couldn't get any worse.....

They bloody well do!

Well we’re do I start? What a whirlwind the last few days have been! You may have noticed I’ve been a little quiet on social media for a couple of days. On Tuesday I had to travel up to Birmingham for a training course, not too taxing in itself but the journey home on a very overcrowded train was very taxing! I felt shattered by the evening, definitely not a myasthenia friendly experience!


Not to worry as I now work from home every Wednesday, so chance for a lie in and no commute to worry about, which would give me a chance to recuperate.


No such luck as it turns out!


At about 10.45 on Wednesday morning I suddenly got a crushing pain in my right shoulder, spreading to my chest and arm and I was struggling to breathe.


Having only renewed my First Aid at Work Certificate last month on the excellent course run via the TRF, I went through the heart attack check list: but no, pain on the wrong side for a heart attack, not feeling clammy or sweating. So what was it? My obvious thought was “is this what a myasthenic crisis feels like?” That's when you lose the ability to breathe for yourself.


Pain had hit about 15 out of 10 by this point, based on 0 being no pain and 10 being the worst pain you have ever experienced; yes far worse than anything I’ve ever experienced (and believe me I have found some very inventive ways of causing myself pain over the years) so I grab the phone and dial 999


In short order an Ambulance crew arrived and after checks, ECG etc I was blue lighted into Milton Keynes Hospital.


And then the saga started, several hours of trying to get the pain under control saw me going through oral paracetamol, codeine, IV paracetamol, Oramorph and finally IV Morphine before we got it to a just about bearable level around a five!


To be honest they seemed to be clutching at straws and dismissed it being myasthenia. Although saw no need to check with my Neurologist at Oxford. At one point suggesting it could be a musculoskeletal issue (which I could assure them it was not), eventually deciding after chest X-ray and a CT scan, it was possibly a blood clot and mild chest infection, so after prescribing Dalteparin injections to thin the blood and getting very confused over what antibiotics I could have, (many are counterindicted for myasthenia and I'm allergic to penicillin for good measure) they eventually were ready to discharge me at 6.30 in the evening.


We queried whether they were going to do an ECG as they kept mentioning it throughout the day but not actually doing one despite this being a standard protocol for a patient presenting with chest pain.


So eventually I get the ECG and clearly something is not right. So they want to compare it with the one done by the Ambulance crew in the morning but of course by now it cannot be found!


So they decided on another blood test.


The upshot was at 11.00 that night I was eventually told  that I’d had a “mild” heart attack!!!


So I was admitted and eventually in a bed by 01.30.


Thursday morning I awoke again in considerable pain and after some more IV Paracetamol I was told I’d be having an Angiogram and a short while later then  told it would take place at the JR Hospital at Oxford. They’re our Centre of Excellence for Cardiac Care (as well as myasthenia coincidently) 15 minutes later an ambulance crew arrives and at 09.00  I’m being driven to Oxford on blues and twos with a flying stop at the end of our road to pick up Grainne on the way. (Nice one guys!).


By 11.00 I’m in for the Angiogram, they discover a partial occlusion of the right cardiac artery, have performed an Angioplasty and inserted a stent.



Not a great look is it?

By 2.00 I’m completely pain free, I can’t believe the difference.

Unfortunately we then had a nine hour wait for patient transport back to MK, no blue lights this time. Luckily this allowed me to get some much needed sleep in the afternoon.


We were eventually picked up shortly after 11.00 pm the crew (who had only just come on duty so not their fault) and were on the way back, getting back to the Cardiology Ward at MK, at around half past midnight for more obs, another ECG (I’d had about 10 that day by now) and eventually turning in around 02.00


So was the heart attack linked to my Myasthenia? Is it due to meds or was it a complete coincidence due to a known family history of heart problems? To be honest I’m fairly certain it’s the latter.


Today I have seen a consultant cardiologist had more tests, had an echocardiogram that showed minimal heart damage (some good news at last) but an ECG that was still elevated so unfortunately I'm still incarcerated on the Cardiology Ward! More blood tests in the morning and maybe I can go home later tomorrow?


Never rains but it pours eh?


And can I make it quite clear, neither contracting Myasthenia Gravis or having a heart attack were on my Sixty by Sixty list!

Monday, 15 October 2018

Life with Myasthenia


OK so if you've read my last post, can I just point out that contracting Myasthenia Gravis (MG) was not one of my 60 by 60!

This blog started as a way of promoting my efforts at XC Motorcycle Rally Racing but has obviously changed with last month's news. And if you haven't read it already you can do so here: http://www.nomadracing.co.uk/2018/09/myasthenia-gravis.html 

So it's now morphed into my life with MG and how if at all possible I can keep biking, let alone racing!

But first what news on the MG front?

Well dear readers you will recall that I had just been admitted to MK Hospital for treatment, this was in line with the recommendations of the British Association of Neurologists for those with acute bulbar symptoms (the bulbar muscles include the mouth, throat, voice box, tongue and neck) and due to the risk when medication first starts of going into complete respiratory failure (basically the MG affects the chest muscles, making it impossible to breath without mechanical ventilation) yeah heavy stuff!

Just to bring home the point, I was transferred that first night to the chest ward, where I learnt there was another patient with MG who had just spent six days in the ITU due to just such a myasthenic crisis (as it's known). Strange to think that for such a rare condition we both ended up there together at the same time.

The good news was that I didn't have any such problems and reacted well to the medications. Although I still have the acute fatigue, the eye has been fine and my speech and swallowing have returned to near normal on most days. I got my neuro appointment that had originally been scheduled for October 29th on my first full day in hospital and they in turn referred me to the John Radcliffe Hospital at Oxford, a National Centre of Excellence for MG, so all good. Even better news was that after my CT Scan I was allowed home after only five days of incarceration.

After a couple more days at home I was able to return to work, again relying on a colleague for lifts, although this had the disadvantage of having to work a full day despite being signed off for a phased return to work over the month.

Well that all changed the next day when I was offered a cancellation at Oxford for the day after that, only one week after leaving hospital!

So as I write I've had an EMG test where electrical pulses are sent through your muscles to look for typical signs of MG (there were). Later that day I got to see Dr Leite the consultant neurologist, first step was my blood tests, which can (but not always) be the definitive diagnosis of MG. She explained to me that an antibody count of more than five is considered a positive result.... My count was five hundred and forty, I'd say that's definitive!!!

So that's it, Myasthenia Gravis it most certainly is! Funnily enough this was quite a relief as at least you know exactly where you stand. Worst case scenario I guess would have been a negative test (this happens in about 15% of cases) and there still being doubt.

So following that appointment my meds have been revised slightly, although still taking 19 or 20 separate pills each day and still on a high dose of steroids (70mg of Prednisalone). I'm being referred to the surgical team at Oxford for consideration to have my Thymus gland removed (which can improve the condition in some cases) and have been asked to participate in a research study into MG. 

But the best news was being told I can drive again on the basis that I have never had double vision (a common symptom of MG) and the ptosis (drooping) of my eyelid seems almost completely controlled by the meds. So as long as I manage my fatigue, basically by keeping my driving to short stints with frequent rests I'm good to go. I have now submitted my notification to the DVLA and i'm optimistic as they will rely on Dr Leite's report and she was insistent it be recorded clearly in my notes that she considers me fit to drive.

Since then living with the myasthenia is definitely a mixed bag. I could describe a typical day but to be honest there is no such thing. A good day is when I wake up feeling normal and then start to gradually fatigue through the day, this relates very much to the particular medication I take to improve neuromuscular function, Mestinon (Pyridostigmine), it last about four hours and I can definitely feel it wearing off. Equally It starts to act again in as little as 20 minutes, a clearly noticeable effect.

At first after starting the meds in hospital, all of my ocular and bulbar symptoms disappeared, generalised fatigue being all that remained. This gave me hope that I could completely control these symptoms with medication but this is not quite the case. Since then I have learnt there are days when any or all of the above can return without warning. The ptosis of my eyelid has only come back fully once but I often get a "flickering" sensation in my left eyelid that can be a bit disconcerting, sometimes my close vision becomes blurred so working at the computer is a strain but this is quite infrequent so far.

The bulbar muscles that control speech, swallowing etc are also occasionally affected and on one day in particular I had the "full set" (see below). More often I'll experience just one or two, often a tightening of the throat or tingling/numbness of the lips. On other occasions it will be a difficulty in chewing and swallowing or choking (which is quite scary) and regurgitating food up my nose (which is especially nasty) and other times a particularly intense weakness of the neck muscles. Thankfully i've only had slight speech difficulties on one occasion.

As a result of my ongoing fatigue I have yet to return to motorcycling full time but small steps as they say and recently I had good reason to try pushing my boundaries...

Obviously a fair few of my 60 by 60 list are based around motorbikes and so may need some revision but the most pressing was the fact I had booked to go on the Ride To The Wall (RTTW), the annual act of remembrance for bikers with eleven separate ride-ins to the Armed Forces Memorial at the National Memorial Arboretum near Burton on Trent. So given my good news on the Wednesday I had to consider if I could make the ride on the Saturday. I decided compromise was the order of the day and Grainne lent me "Bertie" her BMW G310R on the basis it was much lighter, smaller and therefore easier to manage than my KTM 1090 Adventure R.


A good job too as the weather turned out to be abysmal. First task was getting to my allotted start point at Northampton Services on the M1. Only 30 minutes from home, I duly set off into the monsoon and had a decent rest stop at the village of Roade on the A508 as I stopped after 20 minutes for fuel and lunch supplies, as well as the near compulsory pee stop, an effect I understand of taking the high dose of steroids.



Another short and truly dreadful hop, one junction up the M1 from J15 to J15A in truly appalling spray followed before taking shelter with the wall to wall bikers in the services. A coffee and pee later and we set off.

Once again the rain and spray was really bad and maintaining position in the convoy was tricky at times. I got as far as Corley Services on the M6 before my bladder called a halt so had to peel off of the group for a stop. After a suitable rest I exited the services and by now my group had long gone so I continued onwards trying desperately to remember the way to the NMA! I knew I had to use the M6 Toll (free to bikes on the way to the Wall) and luckily as I rode up it another ride joined the motorway from my left, so I just tucked in about a dozen bikes from the front. Appropriately I seemed to have found a slot in among a group from  the  BMW Club.

I continued through the driving rain to the Arboretum and we were marshaled round to our parking spot. It was just after 10.30 as we were obviously among the first to arrive. Strangely I then spotted my original group from Northampton arriving after us, so not sure how I managed that? The service of remembrance takes place at 2:15 so I had plenty of time to look round, seeking out memorials with a personal connection and bumping into several fellow blood bikers. It seems that wearing your blood bike jacket is a done thing, something I was unaware of.



The service was incredibly moving and a very humbling experience. And as an added bonus the rain had stopped.

The Ride to the Wall is the major contributor to the upkeep of the NMA with £780,000 having been donated over the previous ten years. It was an added bonus to know I had made a contribution to this amazing place, the donation for this year will be handed over a next year's Armed Forces Day on 29th June 2019.

My first visit over but I suspect not my last, I took a long careful ride back via back roads to Tamworth, then home on the A5. A much drier affair than the ride up although I was very grateful for my Keiss heated jacket. I was conscious that I should incorporate some rests stops but was also keen to get back before dark and before it got too cold. So I went for slow and steady all the way back.

So how did the myasthenia affect me? I did have a bit of trouble with swallowing and choking during the day and had to take frequent rests but thankfully the NMA has plenty of memorial benches that I was able to take advantage of.

As a result of my effort Sunday was spent largely in bed with no really bad after effects other that my fatigue levels were somewhat elevated. 

Monday was a different matter entirely, it was a surprise to have all my original symptoms return;  ptosis of the eyelid, swallowing and speaking difficulties, the first time since starting medication. Again a day in bed was required and work was impossible although by Tuesday I was back to my (new) normal self.

So that's two off the list. You'll see that the list is now colour coded; red for those still to be done and/or arranged, amber for those booked, paid for or scheduled and green for those completed.

And if you can't see the list, it's because you're viewing the mobile version of the blog; scroll to the bottom, click on "view web version" and the list will miraculously appear to the right.
And I had thought of another one: 

No 48: Create my own Gin at a Gin Workshop.

Grainne and I have had this idea for a while, so only proper it goes on the list and that way we'll actually get round to doing it (hopefully).

Then on Friday another perfect opportunity for the list presented itself, Grainne saw a facebook post from friend offering two tickets to see Michael McIntyre at the O2 Arena "tomorrow". All well and good.... until later that day she spotted it had been posted on the Thursday so the gig was that night!

Definitely not the thing to do with myasthenia, rush home from work, quick change and jump in a cab to the station. Grainne suggested we drive but I'd heard on the radio the M1 was blocked by an accident at Hemel Hempstead so not an option. We got on a train (thankfully a direct, fast train) with only a couple of minutes to spare and after Euston had the delight of the tube on Friday evening's rush hour.

Then join the hordes at the O2, meet up with Heidi and her son Lewis grab some extortionately priced food and extortionately priced drinks then settle down for a truly hilarious evening



Then it was repeat the journey home, this time with the added buggeration of a stopping train all the way to Milton Keynes not getting home until 01:30 none of which helped by the fact I had my last Mestinon around 6.00pm and forgot to take more with me. Luckily I seemed to get through the evening OK and after a decent lie in on the Saturday seemed to have survived!

So No. 49 See Michael McIntyre live at the O2 duly added and immediately ticked off the list.

Saturday, 22 September 2018

Myasthenia Gravis

I’m betting you’ve never heard of it? Which is not surprising as it is officially a “rare disease”, affecting only 15 people in 100,000 in the UK every year.

Funnily enough I first heard about it back in the 1980s even though I didn’t know much about it but not so funny is the fact that I contracted it myself a few weeks ago.

Yes shit happens!

Myasthenia gravis (MG) is an autoimmune condition. The antibodies your body produces that normally fight infections end up attacking the communications system between your brain and your muscle movements. This results in muscle weakness, muscle fatigue and generally making you feel weak. 

It predominantly affects the face and neck causing issues with the eyes, chewing and swallowing and speech, causing slurring and making it difficult to understand the sufferer, all of which I currently have. There is no cure although it can be largely controlled with medication in most people and there are a number of different treatments available.

So why I am going public? Well it’s not for sympathy or because I’m feeling sorry for myself but certainly in the short term if you bump into me or call me you may well wonder if I’ve just knocked back a couple of bottles of Gin! Yes, my speech can get that bad, even Grainne struggles to understand me at times and she’s used to my inane ramblings.

And to be honest I have nothing to hide, I’ll end up telling most of you in person at some time and this saves me a whole lot of (potentially slurred) explanation 

Often the first signs of myasthenia are with the eyes, these include droopy eyelids (known as ptosis) which was the first sign in me although it has only affected one eye. I have problems eating and as mentioned with my speech. I’m also suffering weakness of the neck muscles and general fatigue. I start off OK in the morning but progressively tire throughout the day as the other symptoms worsen too.

Having noticed the first symptoms just over three weeks ago, I went to my GP who first checked I wasn’t having a stroke, which of course I wasn’t but was then unable to explain my symptoms and put it down to a viral infection. 

Four days later I was feeling so unwell I went to the Urgent Care Centre at Milton Keynes Hospital. After doing the usual checks for a stroke again, the GP I saw there was equally mystified and called in a colleague. She also had no idea so a call was made to the main hospital. The first Doctor spoke to a ITU consultant who told them to send me straight over to him where he was currently working at the AECU (Ambulatory Emergency Care Unit).

A load of tests followed, including an ECG and loads of blood being taken and the Consultant then tried a test by putting ice on my eye, which in 15 minutes had reversed the ptosis (sadly only temporarily) so he pronounced that he thought it was Myasthenia (cue getting the phone out and googling it)! 

I then got sent for a Chest X Ray as there is an even rarer form of Myasthenia, Lambert-Eaton Myasthenic Syndrome that can be caused by Lung Cancer but thankfully my X Ray came up clear.

I was told in no uncertain terms I could not drive and sent home to await an appointment with the Neurology Consultant. The ITU Consultant spoke with him the next day and he too was “99% certain it was Myasthenia Gravis”. The blood test will hopefully give a definitive diagnosis but so far it seemed pretty certain.

A CT scan of the Thymus Gland in my chest was also booked as this is suspected to be the possible source of the antibodies and can become enlarged or have benign tumours in Myasthenia and may have to be removed.

So what followed was two weeks of buggeration, trying to get to work in Northampton, relying on Grainne and a colleague for lifts and working at home. I also got my neurology appointment but not until the 29th October…. Another six weeks without being able to drive or ride my bikes!!! 

Unfortunately, this also coincided with a daily worsening of my symptoms.

So yesterday we emailed the ITU Consultant I first saw to ask if the blood test results were back and express my concerns about my symptoms. He phoned us almost immediately and told me to get back to the hospital and pack an overnight bag…. Oh heck!

So upshot is I got to see the Neuro Consultant yesterday, although the blood tests are still not back (this is normal it seems) he diagnosed Myasthenia Gravis on the basis of my “text book symptoms”. So I have started my drug regime already but this means having to stay in hospital for seven days to be monitored as they adjust the dosage to find the right one for me. This is due to the risk of my symptoms suddenly worsening before getting better.

So here I am in Milton Keynes Hospital, not actually feeling ill, as Myasthenia symptoms do improve with rest and I’m getting plenty of that and already bored (the Neuro Consultant did warn me), which has trigged my decision to put pen to paper (OK, I know it’s really just rearranging some electrons or something). 

So in summary the bad news: 

As I’ve said there is no cure and although some people do recover fully or go into remission this is very rare.

In the worst cases it can affect the chest muscles and impact on breathing causing respiratory crisis and requiring hospitalisation and going on a ventilator (yikes)! Thankfully that is also extremely rare.

The drugs do of course have side effects, immunosuppressants do increase your risk getting other infections for instance. That’s without the stomach cramps, muscle twitching, diarrhoea, feeling sick, weight gain and mood swings that can potentially result.

It’s a notifiable condition to the DVLA so potentially you may have to surrender your driving licence. Definitely not good news to a petrol head like me! Hopefully this won’t be the case as my eyes have not been greatly affected, I haven’t had double vision for instance which is a common symptom.

The good news:

As I’ve said it is controllable with drugs and this is true for 90% of people with MG

I get Free prescriptions! (I am learning to accept any silver lining however small)

I may even qualify for a blue parking badge (as long as I can drive)!

Well you’ve got to look on the bright side!