By rail and sea to Corsica

There are a lot of advantages in travelling with a wheelchair. For one, people are always super helpful and polite. I definitely see the best side of human nature. As an added bonus, car parking with a blue badge at Castle Cary station is free, furthermore the only wheelchair spaces on the GWR train to Paddington happen to be first class. Complementary coffee and tea are most welcome but what I value most is being able to easily take myself to the loo. No more struggling down a moving train holding John's arm and grasping at seat backs.

Both Paddington and Kings Cross have good lift access to the tube, so not too many problems there (apart from negotiating 'the gap').

This was our first time visit to St Pancras International, the Eurostar London terminal since 2007. Amazing station, a destination in itself. Checked in and went through security, similar to an airport but a lot less stressed, plus you can arrive as late as 45 minutes before departure. Like GWR, wheelchair spaces are Standard Premier (or even first) class and, as we discovered  to our surprise, include a simple two course meal with wine and a decidedly French feel. All served in real china, glasses and metal cutlery - luxury - definitely beats flying!

A little over two hours later we arrived in Paris Gare du Nord. Having read advice from https://www.seat61.com/France.htm we'd bought our tickets for the Paris Metro on the Eurostar and felt confident heading off to find RER-D for Gare de Lyon. Suffice to say, the Metro is a far cry from the tube so far as being accessible. Journey time itself is 7 minutes. Time to find correct platform via a lift (preferably in working order) and find our way out again at the other end - well over an hour! Our train travel guru, the man in seat 61, reckons on 25 minutes, including buying a ticket. Notice he takes a taxi when travelling with family. Next time, so will we.

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Welcome Paris stop over with great views from our hotel! Next morning John took a run alongside the Seine towards Notre Dame. Time for a leisurely breakfast before returning to Gare de Lyon to board the TGV for Nice.

Wheelchair spaces in first class again

This is what the Loire looks like from the passing TGV. Even better are the seemingly stationary cars on the Autoroute, the impression of relative speed is fantastic!

Arrive at Avignon in 2+ hours, after which the TGV slows to a more leisurely pace and takes the next 3+ hours to wind its way along the scenic Cote d'Azur to Nice.

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Second night's stopover in Nice. Lovely hotel, even if slightly dodgy area near the station (aren't they always?). Morning run for John, this time along Nice  seafront. I wish he'd sign up to Strava and record it all....

Another lovely continental breakfast at our hotel before packing and heading down to Port de Nice. Now it's my turn to forget to set Strava but here's a screenshot of our return trip at the end of the holiday.

I confess it's probably 2 miles at most, Strava has a habit of recording further distance when sat down in a café.

The sun shone ever hotter and the cold beer at the harbour restaurant was more than welcome. Ferry borded for the final leg of our journey.

Arrival into Port d'Île Rousse. Our hotel, the wonderful and accessible (unusual in France, rare in Corsica) Santa Maria is a short walk (or roll).

Hotel Santa Maria is back right with balconies all round and most rooms overlooking the sea in one direction or other. The hotel appears to have its own private beach, although in truth,  no beach in Corsica is private. Never the less the little rocky beach behind the hotel (direct access from our room) is quiet and perfect for snorkelling. The sea is flat calm apart from when a ferry docks and a freak wave threatens swimmers close to the rocky shore.

We enjoyed a wonderful holiday in Corsica and really appreciated the overland travel to get there. Watching the scenery and feeling the temperature change from northern European to Mediterranean, we valued the experience of our journey. Flying these days is anything but pleasant.  Cheap, yes. Enjoyable, no. Evironmentally, Eurostar is a massive 90% better than flying  when it comes to carbon emissions (partly due to France's use of nuclear power).

https://www.seat61.com/CO2flights.htm


We've got to stop or hugely reduce our flying. Flying contributes to an estimated 5% of global carbon emissions. Which doesn't sound too bad, until you factor in that 95% of the world's population have never been on an aeroplane.

https://www.flightfree.co.uk/post/the-footprint-of-flying

On a personal level, I've been privileged to benefit from many overseas holidays by plane, from weekends visiting family in Scotland to our recent once in a lifetime trip to Costa Rica. 

Ça suffit, plus jamais*.

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*conflict of interest: John continues to fly G-PCAT. In his defence rarely very far or higher than 2000 feet. I  struggle to climb into the cockpit these days so can be a bit smug and very hypocritical!

Back to Burnham

Street parkrun was cancelled this morning (our first ever cancellation) due to a cycling event starting at Strode College. So off we all went to the seaside.

This was my second attempt at the Burnham course. Runners call it fast and flat (it isn't) provided there's no wind (there was).

This time I knew my place and started right at the back. Great opportunity to wear my new TailRoller high viz designed by a fellow wheeler.

Found it much easier than the first time so was slightly miffed to come in 3 minutes slower in an official time of 1 hour 10 minutes 4 seconds. That's seriously slow! As a comparison, the nearest group  finished 10 minutes or so ahead of me, the course mean average (as at last week) stands at 29:48, John finished in 26:54 and the first six ridiculously speedy runners were all home in sub 19:00.

The route remained as challenging, the surface just as rough, with the same twisty turns, sneaky little climbs and plenty of adverse camber.

My dream is to do sub 50 minutes, my old 10k PB (personal best) time. That will have to wait for another day and a flatter, smoother course.

In the meantime I enjoyed an hour out in the fresh sea air, met lots of lovely people and did every last bit of it all by myself. My only regret was not being able to stop for an ice cream!

Rituximab

In the 13+ years since MS diagnosis I've clocked up a total of 5 years of interferon-beta (Rebif) injections, 4 months of dimethylfumarate (Tecfidera) and, regrettably, 8 years of no treatment at all. The last 3+ years have been the hardest as officially progressing to the SPMS stage seemingly moves you onto the MS treatment scrapheap at most UK centres. Coupled with a legacy of longterm lymphopaenia post interferon and dimethylfumarate, there seemed little chance of anything.

So it goes without saying I am beyond happy and extremely grateful to have at last started on rituximab, one of the most effective (but unlicensed) disease-modifying MS treatments available to date.

This will involve a few hours at the Royal London Hospital in Whitechapel every six months, under the careful supervision of nurse specialist Xia whilst relaxing and chatting with other day patients and the fantastic team of nurses on ward 11D.

On my first visit I met a string of people in for their monthly natalizumab infusions, from a plucky youngster newly diagnosed and quickly started on treatment, to someone there for his 100th dose, 🤔 about 8 years worth. Had to smile and offer congratulations; made me think there should be milestone T-shirts available!

Joking aside it was interesting sharing stories, a good  number of folk seemed to have travelled a reasonable distance with a history of failing to be offered suitable treatment elsewhere. Those fortunate enough to be in the catchment area, particularly the young first-timer in the midst of her A levels, are in the very best place.

As for me, a lot of the damage is done. Rituximab won't do much at this late stage, but something has to be better than nothing. I'm happy and honestly feel there is nothing more that can be done other than continue to eat healthily, keep as fit and active as possible and above all stay positive. Suntan and lipstick should cover the rest.

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Funnily enough, I first came across rituximab (although didn't know it by that name) 30 years ago in 1988, my first year at the Welsh School of Pharmacy in Cardiff. We were learning about an exciting up and coming new type of drug therapy called monoclonal antibodies. What better way to target a recepter (to this day I think of drug receptors as little squares or triangles stuck to a cell surface) than with its cognate antibody. Tag the cell for destruction and let the body's immune system do its job.

One of the first monoclonal antibody (mAb) immunotherapies (derived from mice, no idea how but I remember a diagram of a mouse and a syringe) in development was rituximab targeting the CD20 protein (surface recepter) found on B cells and would be licensed for treating B cell lymphoma in 1997. It was soon discovered (lateral thinking and someone trying it for the first time?) that rituximab was also effective in treating autoimmune diseases and a licence for rheumatoid arthritis duly followed. Not so multiple sclerosis. With the patent due to expire, the drug company (Genentec, now Roche) had a more lucrative idea. Make a few tweeks to develop a humanised younger brother to be named ocrelizumab (mab stands for  monoclonal antibody, the zu indicates humanised). Licensed in the US and Europe in 2018 for RRMS and early or 'active' PPMS and marketed as Ocrevus. Why not for SPMS?  I've no idea. Meanwhile the guardians of the NHS purse strings, NICE, got busy negotiating a discount. Trump hates it, reckons the US pay the price.

In the meantime, across the channel in Sweden they decided they'd had enough of paying huge sums for less effective treatments and set about prescribing rituximab off-label. By now the patent for the original Rituxan brand had expired and a slightly cheaper biosimilar (generic) was available. Pharmaceutical companies, understandably, hate this.

I guess Sweden offered ocrelizumab, when licensed, for people who qualified but carried on offering rituximab for those who didn't. Quite right too. There are still no licensed treatments for SPMS and that someone should be told their MS isn't bad enough for the most effective drugs (ocrelizumab, alemtuzumab, natalizumab, cladribine) is crazy.

There must be thousands of people in the UK alone with SPMS and no treatment. I can name a fair few in my home town. I wish more neurologists would recognise that all MS worth treating and prescribe effective treatments off-label (cladribine, rituximab) for those not ticking arbitrary boxes.

Edinburgh Marathon Festival

A while ago, John's first wife Sue and daughter Louise decided to enter the Edinburgh Half Marathon together. In no time at all John made a swift decision to join them and, with my new lightweight chair on order, assured that the course was 'fast and flat' and not wishing to be left out, I entered too.

Too late we realised we'd double booked ourselves with our dear friends Mike and Debbie's Wedding in Manchester. By luck the wedding was on Saturday and the run on Sunday.  Nothing that organised travel and accommodation arrangements couldn't cope with.

Too late I looked carefully at the course profile. The race starts at the University of Edinburgh, climbing towards the Castle around the Mound, a steep descent turning towards Princes Street followed by an even steeper freefall down the Royal Mile. Edinburgh city centre is more a series of steep climbs and kamikaze downs laced with cobbles than safely fast and flat! If I could make it down to Leith, a level-ish push around to Musselborough should be possible.

Too late I discovered that my grippy Gekko push rims and gloves turn to frictionless slippy smooth surfaces in the pouring rain. I'd never, not once, thought to practice in wet conditions.

Sunday morning came as wet as forecast. It's been a long time since I last huddled under a bin bag listening to race announcements. Slow start somewhere near the back, gradually overtaken by slower and slower runners. Then came my first downhill wasted opportunity whereby I crashed around the Mound, taking out a cone or two as I went. Another wheelchair passed me, using a traverse ski across the slope method (he probably did the equivalent of an extra mile!) rather than my attempt to head straight down the fall. By now terrified, crashed into the pavement down the Royal Mile a few times before being rescued by a kind volunteer from the sweep vehicle. Together we safely made it down to Holyrood Park where I recovered somewhat and pushed as best I could with next to no grip to the 2 mile mark. Caught up with John patiently waiting and we made the sensible decision to retire gracefully. By the time I got home (Holyrood Aparthotel) recorded 3.5 miles in total plus about 0.5 miles to get to the start.

Meanwhile Sue and Louise had previously decided not to run, Sue changing to Saturday's 10k and Louise opting out completely.

Next year, we decided, will be different. The Beveridge family Edinburgh 5k.  Or maybe we'll save our money and do a parkrun together  instead.

Back in the game!

Introducing my latest investment, a lovely new (as yet unnamed) everyday made-to-measure (very small) wheelchair in a brilliant glossy purple complete with bolt-on Freewheel at the front. Seemed like a more sensible choice than a racer.

This machine is lighter than Mac the all-terrain Trekinetic, has a set of sleek Marathon puncture-resistant tyres to match and is equipped with ergonomic super-grippy Gekko handrims. Less rolling resistance for sure, but still hates climbing! Using arms to propel ensures you detect even the smallest of gradients and wheels only ever want to roll downhill! Cambers introduce their own challenge and left arm being much weaker than right confounds this problem.

I've been out for several practice rolls and have become adept at fitting and removing the Freewheel. The Freewheel is essential for anything more challenging than a smooth level  surface, the front castors objecting to bumps and spinning round to downhill akin to taking a supermarket trolley for a walk!

This morning I officially completed my very first wheelchair parkrun with no assistance. My Strava time of 52 minutes is deceptive, some moments must have been too slow to even register as moving! In fact it took over an hour to negotiate twists, turns, camber, rough ground (temporary detour due to contractor's works) and a few sneaky short climbs. All under a beautiful blue sky on one of the busiest and hottest parkrun weekends of the year so far.

Had hoped to finish in under the hour and I really wanted to do 50 minutes, my old pre MS 10k PB. Another time, with bit more handling practice and perhaps a smoother course, maybe I'll get there.

In total this week I've rolled nearly 7 miles. Better than nothing and got to be worth a cake!


#ThinkHand, #loveparkrun

New Home

As you may know, with my mobility worsening, we've been looking for a bungalow. I'm managing just fine at the moment, what's wrong with climbing stairs on your bum and using hands to lift legs behind? I know a stair lift might be theoretically possible in our lovely Victorian house, but really? And a proper wetroom shower with seat would be a dream!

Thing is, there aren't many bungalows around in Street and we're fussy! Most of all, having lived in our quiet home with its South facing garden, a short level(ish) wheel to town, swimming pools (yes, Street boasts two!), theatre, parkrun, Clarks Village (occasionally useful) and a slightly longer wheel to Glastonbury for the hipper alternatives.... location is everything!

We viewed a bungalow in Wells that ticked some of the boxes and John's always had a hankering to move away from Street when he retires in May (gulp, that's only two months away!). But at huge cost, needing a ton of work and still quite a few negatives.

So we got to thinking, there's nothing wrong with where we are that can't be adapted.

Phase 1: relandscaping to raise patio to level threshold, remove steps and provide smooth paved path to back road. Why didn't we do this when we bought the place in 2001? Oh, I was 31 and fully fit, guess steps and gravel weren't an issue back then.

Phase 2: reconfigure ground floor layout at front to extend and convert WC to wet room. Whilst we're at it, may as well remove chimney breast on both floors and gain a bit of space.

Phase 3: here's the magic bit, one of these:

https://www.lifton.co.uk/lifton-duo-home-lift/

If all goes to plan, this nifty little thing should tuck in next to the front door. Future-proofing, my new made-to-measure wheelchair is so small it fits in too. All subject to very careful survey and reconfigured stairs. According to my tape measure and back-of-an-envelope geometry it should just be possible.

Now I've just got to find a good Structural Engineer and someone to draw it up. Better get on with it before May.....

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In case you're wondering about the tortoise photo, it was the result of a spot of out of the (lego) box thinking by a vet in Germany in 2014:

https://metro.co.uk/2014/12/03/tortoise-fitted-with-lego-wheels-after-he-lost-the-use-of-his-legs-4972889/


http://www.reptilesmagazine.com/Turtles-Tortoises/Information-News/Vet-Attaches-Lego-Wheels-Onto-Tortoise-to-Help-it-Walk/

Happy New Year 2019!

This isn't the post I hoped to write. This is, yet again, a failed attempt at finishing a parkrun unassisted. I have, over recent months, built up sufficient strength (in my right arm at least) to push 3 miles at walking pace. Big proviso, smooth ground and reasonably level route essential.  The slightest upward gradient and I'm painfully slow, slightest downhill and I speed ahead. On average, things even out and at least with the climbs  I burn a few calories! The problem comes when descents are too steep and my (usually faithful) all-terrain Trekinetic Mac McLaren requires reining in or spins wildly out of control.  A great waste of all that hard-earned gravitational potential energy. I have also learned the hard way not to touch my too-powerful hub brakes (tailspin risk) but use my gloved hand to pull back on the wheels.

New Year's Day is the only day of the year it is possible to complete two parkruns. So after volunteering as usual in Street, I joined the rest of our team and headed off to nearby Shepton Mallet for parkrun number two. I had understood the course to be suitable for chairs with tar paths and no significant hills. How wrong I was! In the photo I'm pushing slowly up a long gradual climb. The chance to catch up was never possible. Survived most of the first lap (which included pushing up a short steep off-road length and carefully negotiating a congested out-and-back stretch with four lanes of runners) before pulling off across the grass to avoid spinning out of control on a steep downhill and wiping out a whole lot of people! To my credit, I refused help and got round the uphill section unassisted.

Sorry to say this little mouse cried all New Year's Day afternoon and felt rather sad and sorry for herself.

What have I learned?
Research well. Wheelchair racing is a whole different kettle of fish to running. Look for smooth surfaces and pancake flat courses!

New Year's Resolution:
1. Buy or borrow a racing chair and practice regularly.

2. Use this horrible experience to encourage  parkrun to be more wheelchair friendly. It would be fantastic  to see a few chair-friendly events, with experienced volunteers and, maybe,  chairs to borrow.


I did try a Bromakin racing chair last year on the track at Exeter with the wonderful Sonya Ellis of South West Athletics Academy:

On the track, this was like running on Speed! Chair is so light, a quick push sends it whizzing round!* Hoping to be able to meet up with Sonya again in 2019. I've also plucked up the courage to contact the team at Bromakin Wheelchairs in Loughborough and hope to visit soon. Ebay is great, but it kinda needs to be right.

I only want to get round a 5k. Target first attempt 50 minutes, my old 10k PB. Maybe parkruns are too busy for chairs (which is great!) but we're lucky to have our local Yeovilton 5k race series. Yeovilton is a flat single lap course around Yeovilton airbase and, I'm reliably informed, popular with wheelchair athletes.  Got a suspicious feeling they'll be sub 20 ex-military guys, not 30 minute fun runners! I have also entered, along with John and Louise,  this year's Edinburgh Half Marathon. No need to be too impressed, it's generally downhill!

It's a big problem I think, there is no wheelchair equivalent of jogging or fun-running. We either see paralympian or Invictus athletes (typically super-fit spinal injury) or people with MS in electric chairs.

Why is this? Use it or lose it  #ThinkHand








*John had to break into a gentle run to keep up!