2016 worsening MS

 Happy New Year! 

It's a family tradition that whenever we're visiting the coast we should take a dip in the sea. Daughter Louise has to push this to extremes so here we are at Nairn, Scotland after our New Year's Day swim. To say the water in the Moray Firth is cold is an understatement 😜😉

Back home neuro appointment 12 Jan.  As haven't had MRI for over 4 years asked if I could have one with Gd to see if evidence of MS being active.  'I don't need MRI to tell me that' he replied  'I can tell by looking at you it will be'. 'But I can't give you Campath (alemtuzumab) with your lymphocyte counts'. Fair point I thought.  No effective (but safe enough) treatment available so what's the point? We agreed there had been no evidence of 'relapses' (from my point of view it's more a case of no evidence of 'remissions') for 4 years and MS now progressive (ie worsening). Oh, I might be better using a stick? Yeah, I suppose so...

So took the rest of the year off, no Dr appointments, not one blood test, but plenty of holidays 🙂 and retired from work in April. I would like to say forgot all about my MS, but kinda tricky with searing pain across my right shoulder 24/7 and mobility that seemed to be worsening by the month....

Summer 2016

In the sea at Vazon Bay, Guernsey

With the amazing Justin, his daughter Siobhan and friend Martin who cycled all the way from Pen Y Gwryd in North Wales to the Pyrenees in southern France. Justin is originally from North Wales but now lives in southern France. Justin (far right) and I are the same age and both have secondary progressive MS. Justin's walking is nearly as bad as mine, but he's an awesome cyclist! I'm a far cry from awesome but can tandem with John balancing for us both. We joined the team for their leg across Hampshire. In total over £5k was raised for the MS Trust.

Another family tradition is that whenever possible the car is left at home for holidays. Castle Cary is our nearest train station (14 miles) so we often start start holidays here with laden panniers.

Bath, Newcastle (Tandem Club Rally), Guernsey (holiday favourite), Alistair 17th birthday and me with Elseph (white) and Elstar (brown) visiting our friends at Apple Vale Alpacas in Somerset. 

Enough photos, how's the MS?

Really struggling with the mobility to be honest. The stick that I started the year with for a bit of reassurance is increasingly needed for support. I frequently walk too far and get stuck, especially heading into town and trying to return with shopping. Still love tandeming, but need a good rest afterwards! Once made the mistake of dragging myself upstairs and getting into the bath. Had to call for help to be pulled out again! I'm learning to be more careful and know my limitations. Takes a bit of getting used to.

Charlotte (the tandem) is great, but is reliant on John being available to take me out. I seem to be losing independence 🙁. The solution is more wheels! Meet Harriet:-

Harriet is a Hase recumbent trike and she is very, very cool! She has a big shopping bag on the back and I can do exciting things, like buy a loaf of bread, go to the hairdresser's and even get as far as the supermarket, all on my own! Independent or what? Haven't yet tried taking her into a shop (she's a bit wider than a wheelchair) and I do have a problem if I've pedalled any distance that I need 15 mins to rest before I can walk much at all. Fortunately local supermarket has courtesy mobility scooters to hand to save the day! Harriet and I are in front of (or part of) the colourful gable end artwork known as the 'Glastonbury Mural' in the photo above.

And what about if cannot take Charlotte or Harriet? By the end of the year had added Mac McLaren to the fleet:-

Mac is more a Formula 1 all-terrain tail dragger (two large all-terrain wheels at front, small wheel behind) than wheelchair. He's made of carbon fibre, even cooler than Harriet and gets loads of compliments. Mac is good for walks and trips out where I'd need to be on my feet for more than 10 minutes. I'm not yet very good at pushing him off-road but gliding around a shop / airport etc on a nice smooth surface is a dream. Here we all are at the Longleat Festival of Light, it was our company Christmas outing.


New year's resolution: get some MS treatment sorted, lymphocytes must have recovered by now?