Och aye

We headed north over the border last weekend, travelling with Sitzkreig is so easy! Why has it taken me this long to give in to the power of the lithium ion battery? An absolute dream whizzing round smooth level floors at airports (you get VIP fast-track service at airports when you travel with a wheelchair/scooter, my family love flying with me) and rolling out at Edinburgh straight onto the tram. Ok, Edinburgh itself was somewhat more challenging with some steep hills, dodgy pavements, adverse cambers and, on occasion, a strange concept of what constitutes a drop-kerb. I improved with practice and only performed one out-of-control wheelie stunt during a seaside visit to Aberdour across the Forth.

With John's son Joe in Rose Street

End of a sunny afternoon at Aberdour looking south to Edinburgh 

Edinburgh Castle 

The Spinning Blowfish, best busking band ever!
Make sure to catch them outside the National Gallery

Blue skies and sunshine at Greyfriar's Bobby 

Sitzkrieg!

My TravelScoot 'Sitzkreig' has arrived! I can now go into shops and even join a queue without resorting to sitting on the floor. Took it to yoga this morning and, unlike last week when I went with Harriet, managed to join in with some of the class (and not just the lying down bit at the end that I'm always really good at). I can also take Sitzkrieg right to the edge of the swimming pool, no more struggling on crutches all the way back to the changing room.
On the downside, Sitzkrieg progresses at 4mph (6km/h) walking pace which feels frustratingly slow by comparison to cycling.

TravelScoot is designed by a German engineer who needed a scooter small enough to stow into his self-build light aircraft (which immediately sold it to John). So when I said I was looking for a German name my son came up with 'Sitzkrieg' which translates as 'seated warfare'. Apparently the word originally came from the British press at the start of WW2 as a play on Hitler's proclaimed 'Blitzkrieg' (rapid mobilisation of motorised weapons) when not a lot happened and things got off to a slow start (how my son knows all this at age 18 when he didn't even do history at GCSE is beyond me). And, as Ali also pointed out, TravelScoot is motorised and I do sit on it. Besides, we always hear about people bravely fighting their cancer so why are we assumed to merely suffer MS? Seated warfare it is.

Fact: mobility scooters and wheelchairs are male, whilst tandems and trikes are female. Here's a quick recap:

Charlotte - tandem
Harriet - recumbent trike
Mac - all-terrain wheelchair
Norman - normal wheelchair
Sitzkrieg - as above - Sitzi for short  (I  pronounce with English S)

Quite a collection. Sitzkrieg is the first motorised vehicle, but I'm keeping options open with Charlotte and Harriet as electric power-assist is possible for both......

It's a sign...there's only one MS

By coincidence I had an appointment three weeks ago at my local MS clinic. For once, I had a  relapse to report. This was actually great timing, as Dr was able to check leg strength and indeed confirm that my former good right leg was now the weakest. Thus this becomes a clinical  'sign' as opposed to a patient reported 'symptom'.

In my experience, Doctors love signs, they're tangible, definite and often quantifiable. Symptoms tend to be vague and a bit woolly 'patient reports difficulty walking' or 'feels tired'.  Honestly, we do our best to be clear, but sometimes you just want to say 'I feel rubbish!' Anyway, having a clinical relapse recorded on my notes ticks boxes when it comes to qualifying for treatments. Not that it makes any difference right now, the only thing I was offered was a course of steroids, which I refused. I'm told steroids make no difference in the long term and certainly won't help with my mission to improve my lymphocyte count. Talking of which, had another blood test for good meaure.

As you probably know, MS usually starts off with definite discrete attacks termed 'relapses' or times disease is 'active' interspersed with periods of  good health 'remission', so-called 'relapsing-remitting' (RRMS). Some people experience incomplete recovery from relapses 'residual symptoms'a nd many later notice a gradual worsening of their MS but are unable to recognise discrete relapses, so-called 'secondary progressive' (SPMS). Thing is, when you have so many existing symptoms it's kinda hard to pick out discrete relapses from the background norm. For example, all I know for sure is I've had no remission since early 2012 ie that was the last time I was well.

For completeness, I'll mention a third type of MS termed 'primary progressive' where there is never a phase of discrete relapses, just slow deterioration from the start. For reasons unknown, males are more likely to present with this type. Furthermore, men with RRMS experience fewer relapses than women. Aha, hormones you say. And you're probably right, especially when I tell you that women are unlikely to experience relapses during pregnancy.

We also know that slow deterioration (why is it called progression?) takes place from the start, regardless of whether symptoms were noticeable enough to be detected as a relapse. And likewise 'relapses' continue right to the end, regardless of whether they can be detected or not.

So if MS is one disease and both disease processes are there from day 1 to the end why do we insist on these artificial labels? It's all because back in the late 90s, when beta interferons were first being developed, MS had to be sub-divided into different diseases in order for RRMS to qualify as an 'orphan disease' affecting  <200,000 people in the US thus making it worth drug companies investing $$$$ developing $$$$$$ treatments:

https://en.m.wikipedia.org/wiki/Rare_disease

http://multiple-sclerosis-research.blogspot.com/2016/10/clinicspeak-whats-in-name.html?m=1

That was 20 years ago and thanks to that we now have loads of effective treatments for RRMS, or early MS where disease is generally at it's most active and easiest to treat. Which leaves those of us not ticking boxes for RRMS with zilch. MS is no longer considered an orphan disease so perhaps it's time to ditch the artificial labels.