My plane

L'île de Pietra, L'île Rousse, Corsica

September came and went without a moment to pause and pen a few words.

First came 5 minutes of fame via an article I'd written being posted as lead item in the parkrun UK monthly e-newsletter and across social media:

http://blog.parkrun.com/uk/2018/09/11/parkrunning-with-multiple-sclerosis/

Joined the parkrun MS Facebook group and met some super lovely people still running all kinds of distances. No sooner had I finished chatting, tweeting (remember, neurologists tweet, friends facebook) and liked/replied to the last comment then we were off on holiday to Corsica for a whole week. Lucky, lucky us! Absolutely loved every minute! We travelled via Nice then Corsica Ferries to L'île Rousse on the north coast, rolled off the ferry along to the lovely and conveniently located Hôtel Santa Maria.

From our ground floor room terrace 

Having stayed along the coast in Calvi two years ago I remembered Corsica doesn't do accessible not to mention all the beaches there are to visit . So opted to take Mac McLaren the all terrain wheelchair powered by breakfast and cake rather than Sitzkrieg the scooter powered by Lithium ion battery. In preparation, decided some practice was called for so began short trips around Street. I've gained confidence and learned techniques for turning, slowing down and stopping (without throwing Mac into a tailspin). It isn't easy starting over and using arms instead of legs to get around. Managed fine on my own around L'île Rousse in general, although it was good to have John to handle difficult road crossings and kerbs. 

One thing we've learned is that, like an aircraft, only one pilot should be in control at any one time. Years ago, when I first met John as my flying instructor, I learned that the pilot says 'I have control' to take charge or 'you have control' to hand over to his co-pilot. In the US they say 'my plane' and 'your plane'.

So now when I say 'your plane' to handover to John or 'my plane' when he's not to interfere I smile to think how we had no idea all those years ago that we would be saying these words in this context today.

As it happens it's just as well I've become confident with Mac as Street parkrun has become difficult to negotiate with Sitzkrieg due to all the cracks that have opened in the clay from the summer.  I even set Strava every time I take Mac for a push now! It's another exercise opportunity and chance to get an aerobic workout!

Haha, according to this a whole 5k would take 1 hour 20 minutes. Which is why I will never attempt a parkrun on grass!

Hello to Ellie

Overdue update from our tandem world.

So what happened? At the beginning of June we drove down to Devon (fact: when heading west from home it's down and east is up. Why is that?) and collected our new Hase Pino Steps from the lovely Tom Pales aka Tom Freetrike:

https://www.freetrike.co.uk

Tom has an amazing business, combining his professional training as a physiotherapist with his love for the outdoors, especially cycling! Having  previously supplied my beautiful Hase recumbent trike Harriet for me we didn't hesitate to entrust him with ordering and assembling our new tandem.

And wow! What a tandem she is!  Took a bit of getting used to it must be said, especially manoeuvring round corners at slow speed (eg turning round in the road when you realise you've gone the wrong way). We've named her Ellie. She's grey, equipped with an amazing Shimano Steps electric motor and weighs rather a lot. Ellie the Electric Elephant! The recumbent seat is oh so comfortable and the front seat view as we whizz through the countryside is amazing! No more being stuck at the back. John and I are also sitting really close so conversation is easy and he can't pretend not to hear me when I tell him which way to go. The best thing is the motor is always there ready to kick in if we need it. And we do, more and more. It also means we can go faster which can be a lot of fun! Above all it enables us to go on slightly longer and more challenging rides with our tandem friends again.

What happened to Charlotte? I can report she's doing well with our friends Mark and Liz. If you look closely behind Ellie in the photo you might spot an uncharacteristically shy Charlotte lurking at the back.

We'd clocked up 4300 miles with Charlotte, here's to thousands more with Ellie.

Tail'walking' #loveparkrun

We're in Scotland on holiday, staying in Aberdour for the festival and Donkey Brae run. On Saturday we were parkrun tourists and visited the Beveridge Park (named after John's family*) in Kirkcaldy. The course is two laps of the track running around the park and, as I've brought Mac McLaren with me, I (somewhat naively) thought I'd give it a go....

The Beveridge Park, Kirkcaldy 

*Beveridge is a common family name in Fife 

So, at 9.30am** I managed to self-propel for maybe a couple of hundred metres before accepting more than a little bit of welcome help from one of the tailwalkers. We then turned the corner and started the ascent up Mount Beveridge. In theory the descent should have been easy, except that Mac (being a tail-dragger) has a habit of spinning out of control around corners or when attempting to brake. In the end I left steering to my assistant and concentrated on putting power in. John and Ali joined us as we completed the final lap. Fortunately, none of us had barcodes so the near hour it took is lost forever to historical record.

With tailwalker Sandie from Dunfermline 

**parkrun in Scotland starts at 9.30am in order to give everyone chance to recover from the indulgences of the night before.


Haha, next time it'll be a flat course, I'll take an assistant to steer, I'll wear gloves to avoid nasty blisters and just maybe I should one day invest in a real racing chair. Don't get me wrong, I've no desire to go fast, just get round parkrun without having to apologise to the tailwalker. But once completed, another run calls and before I know it I'll be a chair-parkrunner ever searching for my next PB..... #loveparkrun

Volunteering #loveparkrun

Crikey, no posts for over a month! The sun has been shining and we've been as busy as ever getting outside in the fresh air: cycling, swimming and volunteering at our (now 11 week old) Street parkrun.

#parkrun is a weekly 5k timed run, jog or walk around a park or similar public space away from roads. #parkruns take place every* Saturday morning at 9am throughout the year come rain or shine. Friendly, inclusive, everyone welcome and completely free to enter!

Originally started in the UK in 2004
 https://en.wikipedia.org/wiki/Parkrun
parkrun has spread around the world and to date about 4.5 million people have registered with the event.

To enter you register online
https://www.parkrun.org.uk/register/ 
and print off your personal unique barcode. Then simply turn up (don't forget your barcode!) at about 8.45am (in time to listen to the pre-run briefing) on Saturday morning at any parkrun location worldwide. At 9am the run will be started and off you go! As you reach the finish line after 16 minutes* (you're very fast and probably came first!), 26 minutes* (a highly respectable run time), 36 minutes* (running/jogging), 46 minutes* (a good fast walk, or walk/running) or 56 minutes* (walking steadily) your barcode and a team of volunteer timekeepers, barcode scanners record your name and time. In about an hour's time your phone will ping as a link to the results is received. Magic! 

*Note - Street parkrun is flat, others are more challenging so be prepared to add a few minutes for hills.

Well, not quite magic, it's all down to a team of volunteers who turn up every Saturday from about 8am and transform an ordinary park into a 5k course complete with start line, route markers, marshalls and finish funnel. Then there's the results processor to upload the timers and barcode scanners to a nifty bit of online parkrun software.

Street parkrun volunteers 

I'm in there somewhere 

As you probably know, I used to love getting out for a run, carried on (sort of) a few years post MS and badly missed it when I had to stop. I love to encourage others to run and for this reason was keen to get involved early on when I heard that our local Parish Council were hoping to establish a parkrun in Street. More selfishly, my son has also taken up running over the last year or so and if parkrun gets half of my DNA up and running for 9am every Saturday that's great!

Street parkrun

He's in there somewhere

 http://www.parkrun.org.uk/street/news/2018/06/25/street-parkrun-report-8-230618/





*extreme weather conditions (floods, hurricanes and blizzards....) excepted

Farewell Charlotte

Another beautiful Bank Holiday Monday, we are getting a bit too used to all this sunshine! Took Charlotte for a final gentle ride to Wells before she graduates to a more challenging life with our (considerably fitter and more adventurous) tandem friends Mark and Liz.

Bishop's Palace, Wells

with tandem pirates Rex and Hannah 

Meanwhile I am pleased to report that my right leg has returned to (almost) as it was earlier this year. All in all I found this rare relapse (sharp deterioration over days/weeks with some recovery) a remarkably positive experience. For one it made me rethink things and at last give in to the wonders of the electric motor. And I am incredibly grateful to have made such a good recovery.

We are due to collect Charlotte's replacement tomorrow, I will endeavour to post some photos soon.

Edinburgh Marathon revisited

As many of you know Edinburgh Marathon has very special memories for me. 13 years ago I entered John and myself to run to celebrate John's 50th birthday. Little did I know when I ran happily over the finish line in June 2005 that 6 months later I would be diagnosed with MS.

https://annoniemouse1970.blogspot.co.uk/2017/06/2005-in-pre-ms-days.html?m=1

In addition to the 26.2 mile distance Edinburgh holds a concurrent relay race for teams of 4. It's a great idea as the course is flooded with fresh runners every 6.5 miles or so to inspire the tired marathoners on their way.

This year Nazanin Zaghari-Ratcliffe, her husband Richard and family/friends had decided to enter as a team and raise funds for the human rights charities who had supported Nazanin whilst in prison in Iran:

https://www.justgiving.com/crowdfunding/runningfornazanin

Nazanin has been training by running around a courtyard in prison. Sadly, as we know, her release at Christmas didn't happen. Family and friends will run without her. If you can spare a few moments and a token donation to Amnesty Scotland and other charities the message will give support to Nazanin and boost media coverage. Amnesty and the other human rights charities will continue to use their resources to support Nazanin and many others unjustly imprisoned in Iran and worldwide.

This family's living nightmare puts my relatively minor discomfort of living with MS in perspective. Sometimes it does me good to escape my little MS world and think about other problems.

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.

Relapsing Rethinking MS

After all these years it's finally happened and I'm officially self-diagnosing a relapse. Last Monday I was much the same as ever, by the end of the week my bad left leg was my relatively good leg and my good right leg my really bad leg. So now I can barely make it to town with Harriet and a trip out with Charlotte resulted in needing two crutches at home.

It's a case of waiting patiently to see if right leg recovers at all. Unlikely I know, but it is what it is so I just have to adapt. I've been thinking about a little (portable) mobility scooter for a while and finally ordered a Travel Scoot

We've known we need to move to a bungalow for a long time, but I really want to stay in my lovely home whilst Ali is at college just down the road.

It's a minor thing really, but would it have happened if neuro number 3 had been happy to risk my lack of lymphocytes for a shot of cladribine? Probably not. In my (limited) experience patients are less risk averse than neurologists. Caroline Wyatt, in her beautiful piece for the BBC:

Caroline Wyatt article

wrote that she has no regrets at risking all with HSCT treatment if only for knowing it gave her two years of hope.

Moving the goalposts

My neuro has confirmed we need to wait to be sure my lymphocytes are safely over 1.0 before initiating any depleting treatment. No doubt wise, but frustrating never the less.

The good thing is that having waited so long, there may yet be a licensed treatment available and off-label treatment might not be necessary after all. Last April phase 3 trial results were published for siponimod:

http://multiple-sclerosis-research.blogspot.com/2017/04/aan-siponimod-phase-iii-positive-in.html

Siponimod is the me-too, younger brother and imroved version of fingolimod. You may recall I had an aborted attempt at starting fingolimod back in summer 2014:

https://annoniemouse1970.blogspot.co.uk/2017/06/2005-in-pre-ms-days.html

I've never paid that much attention to siponimod, assuming it would also be contra-indicated. But, reading more carefully, this drug is selective for activity in the brain and lymph nodes, leaving heart tissue less affected.

So how do the 'imod' drugs work? They are chemical analogues of an endogenous chemical messenger known as sphingosine-1-phosphate (S1P). S1P binds to protein recepters on various cells including lymph nodes, cardiac myocytes (heart muscle) and cells in the CNS (neurones, astrocytes and oligiodendrocytes). The primary treatment effect of fingolimod in RRMS is to trap lymphocytes in lymph nodes and stop them getting into the CNS. A major side effect is bradycardia (slowing of heartbeat), especially after first dose hence you have to be monitored for the first few hours.

The protein recepters on different types of cell vary slightly and have been identified as 5 distinct types. Of particular relevance:

S1P-1   lymph nodes (and CNS cells)
S1P-3   cardiac myocytes
S1P-5   CNS cells             
                                           (over simplified)

Siponimod was found to be S1P-1 and S1P-5 selective in animal models. As S1P-5 has potential for neuroprotection and remyelination, clinical trials followed for secondary progressive MS in 2016 (BOLD phase 2 small study) and 2017 (EXPAND large phase 3 study).

There are, as yet, no treatments licensed for secondary progressive (later stage) MS so this is long awaited.

A letter to my MP

I am 47 years old and have MS. I retired early at age 45 and my mobility is deteriorating. Yet my worst symptom by far is invisible central neuropathic pain. 

I am therefore very moved to have learned today about a lady called Vicky, the exact same age as me, whose MS has taken a most aggressive course:

http://multiple-sclerosis-research.blogspot.com/2018/02/guest-post-argument-for-legalising.html?m=1

hansard.parliament.uk/Commons/2017-10-10/debates/DD48FD3C-C652-4ABB-BE9E-ADDECA878E27/LegalisationOfCanna

I urge you, please, to attend the house on Friday 23 February when this private members biĺl is read and vote to support. 

I would be happy to meet up with you and try to explain first hand the problem of intractable neuropathic pain if that would help.

With kind regards




Ok, it was an e-mail. Probably stands even less chance of being read, let alone acted upon. But this is such a desperate tale, I urge you to do the same. Private members bills notoriously get nowhere, although this one may have a huge weight of public opinion behind it and fare better.

On the up

For those who didn't know, I went to London last week and had the results from my MRI scan from last September. Scan showed lots of lesions in brain but we don't know how long they've been there. None of the lesions were active at the time of scan. Active means catching lymphocytes in action as they push through the blood brain barrier. I understand this can be picked up for 2 to 4 weeks during a typical relapse. So that's good news on one hand, or bad news from the point of view of ticking boxes to qualify for licensed treatments. Had my previous scan from 5 years ago with me, but apparently that's too long ago to usefully  compare with. Seems they keep on the case with yearly monitoring (at least of brain, spinal cord gets left out) up in the big city, down here life pootles on at a slower pace.....
So I now have a baseline scan for future monitoring. New lesions next time have to be from the last year.

In other news, had some more blood tests and am delighted to report that at last, two years post dimethylfumarate (Tecfidera), my total lymphocytes have leapt to a count of 0.9 good news indeed 😁 now waiting for an update to see if at long last I can start on off-label  cladribine injections.

Happy New Year 2018!

Driving on around Lake Arenal to the west we reached our next stop Monteverde. Couldn't find an accessible trail through any of the reserves but did discover the Original Canopy Tour:

Being high up in the canopy with the birds and views to the Pacific ocean was exhilarating beyond measure.

This was Costa Rica's first zip wire tour of the rainforest canopy established back in 1994. Unlike other tours this one goes tree to tree through the forest so only involves one 15 minute hike to the first tree platform. Me, hike uphill for 15 minutes?!

So I lied and signed the form to say I was physically capable of doing it. Somehow, with John and Ali each side supporting my arms and taking most of my weight and all I had to do was walk my feet over the ground (advantages of me being 5ft tiny, whilst John and Ali are 6ft strong) I got there. Our wonderful guide Pedro decided we should be a private tour (just the three of us) and with no time pressure encouraged us to take frequent breaks. He then positioned us so that Ali always went first:

Ali took to it like a duck to water

and John last:

So cool!

In this way there were always two people to help me on the platform. To be honest I found the zips tough to say the least, my right arm struggling to pull down on the wire to brake:

Not exactly a controlled landing!

This bit was optional, so sat it out on the platform and waited for them all to climb back up via rope ladder 

Keiver always went first and proved a dab hand at filming. 'He's a pro' Pedro assured me. 

He's never dropped a phone, yet....

Keiver, Pedro, me and Ali

It was New Year's Eve.

Fabulous to finish 2017 on top of the world!

Costa Rica pura vida!

We've taken advantage of the Christmas holidays and all meet up with Louise in Costa Rica for two weeks. Fantastic to see the wonderful country we've heard so much about at last. So much wildlife! Spent the first few days near Arenal Volcano (not that the cloud ever cleared to give much of a view). Arenal Observatory Lodge includes some reasonably accessible trails for an all-terrain wheelchair like Mac and someone like myself able to walk short distances (currently up to about 100m or 5 minutes total standing time). As I've said so often before, there is a huge difference between being a wheelchair user and being wheelchair bound.

This was as far as I got while the rest of them legged it down steep and slippy steps to swim in the waterfall far below. I'd have been there in a former life and did consider trying to clamber down....

So if I look wet in the photos I hadn't been swimming it's because it rains (heavily) frequently in between spells of beautiful sunshine. Guess that's why it's called a rainforest.

Arenal Volcano is behind us!