#ThinkHand #Chariot-MS

Is being unable to walk so bad? 

Hannah Cockroft, 3x Gold, Team GB Rio 2016

I don't know, is the truthful answer, as I can still walk. A bit.

I've always thought of people as either being able to walk or not i.e be ambulant or wheelchair-bound. In reality, if not born wheelchair-reliant, abrupt transition to using a wheelchair all the time only happens with things like (for example, not exhaustive list) physical injury, stroke or MS relapse. Progressive (worsening over weeks, months, years) MS is by nature a gradual process as nerve axons die and neuronal reserve  (alternative pathways) is lost.

Two years ago I was managing to walk up Glastonbury Tor every weekend. It was getting harder. Then the walk to work with climb up stairs when I arrived became a challenge. Early last year I got caught out at a craft fair, just being on my feet milling around caused me to look round frantically for a seat after 20 minutes.

And now I am a wheelchair user. Sometimes. But not always, or often even, thanks to Charlotte and Harriet. I am grateful for the privilege of gradual easing-in to wheeled travel I view my chair as welcome rest and am always relieved to be able to sit in it. My heart goes out to those who find themselves having to deal with the enormous psychological adjustment needed to be suddenly wheelchair-bound. I will get there too, one day, but I have time to mentally prepare and deal with it.

But what about use of my upper limbs? Now that I feel more strongly about. I do everything with my hands after all and cannot imagine being without them!

Two brilliant initiatives by the team at Barts MS are the Think Hand campaign to raise awareness of this issue and the proposed ChariotMS clinical trial of generic cladribine (that drug again) for people in wheelchairs. Incredibly, to date, people with more advanced MS have always been excluded from drug trials and even when people with progressive (gradually worsening) MS have been included the results never appear great due to the dogma of using walking as the outcome measure.


https://www.youtube.com/watch?v=BrIShODY83g&feature=youtu.be

It's better by bike

Why is it easier to pedal than walk?

We've just enjoyed another trip with our tandem, this time in Fort William in the Highlands of Scotland. Spot Ben Nevis trying to hide behind a cloud ;-)

I can ride our tandem Charlotte with John for about an hour (10 miles or so) before fatigue sets in and nerves fail to get the message through to my muscles. It's a gradual thing, in practice John contributes more and more power and I less. The well-worn tandem insult 'she's not pedaling at the back' is in part true ;-) A welcome rest for photos here (near Port Appin)

Getting off is interesting, John has become adept at leaning round, grabbing my left leg and lifting it over the rear allowing me to disentangle from the tandem and collapse to the ground to recover. Tandem Club friends, family and even complete strangers have stepped in to assist with this many times. If insufficient recovery time available the reverse exercise must be performed to get me back in the saddle again. Recovery time is best spent in cafés :-) or in the Highlands, ferries were a welcome rest too ;-)

My pal Justin in France is the same age as me, has similar MS and yet cycles solo. He's an ace cyclist and regularly does long hilly rides in the Pyrenees. His neuro in France cannot understand how is still able to cycle so well and once commented that if he were unable to cycle he would probably be using a wheelchair to get around! Justin loved the irony of this, as his love of mountain-biking in his younger pre-MS days had on numerous occasions almost put him in a wheelchair. Despite his amazing cycling ability, Justin often relies on fellow cyclists to lift him safely down from his bike to rest before he is able to stand. If cycling alone he has apparantly perfected a technique of falling off into a suitable bush!

This was Justin and me during Justin's fundraising ride from North Wales to the Pyrenees in August 2016. We are demonstrating our n=2 study showing that MS is not linked to genes controlling height.

Stop press - prolonged lymphopaenia post dimethyl fumarate (Tecfidera)

News to me this one! When I presented at hospital in March I was told my  lymphopaenia (0.59) at 14 months post Tecfidera was unrelated to the dmf and to ask my GP to refer me to a haematologist. Which I did.

Learned this week from the Barts blog
http://multiple-sclerosis-research.blogspot.com/2017/07/clinicspeak-casestudy-lymphocyte.html that prolonged lymphopaenia (months/years?) is common and it is possible some people may never return to baseline. Demonstrates the importance of MS specialists keeping in touch with latest research and clinic findings from other centres. Simply following the Barts blog is one easy way to do that for a start.  If I as a mere patient can pick stuff up then anyone can.

Anyway, this requires a spot of replanning. My treatment preference is still off-label cladribine:
http://multiple-sclerosis-research.blogspot.com/2016/01/the-special-one-cladribine-acting-in-cns.html


Neurologists look for a baseline of 0.8 (or 800) depending on which scale* you are using. Indeed, this is the figure stated in the 'Movectro' (old brandname for clad) datasheet. Factor in my lymphocyte profile (lacking CD8 T cells, they keep a look out for viruses and tumour formation) it would be good to get back to my old baseline of about 1.0+.  I think it is a case of being a patient patient. Another year or so shouldn't make much too much difference in the grand scale of things?

Maybe not, but what if investigations show loads of active inflammation and further damage? Especially in brainstem and cervical spine (where I know there are some pretty big lesions already) - fairly critical points I understand.  Our brains are pretty amazing at re-routing around damage just like as seen in people post stroke, but not many rerouting options in spinal cord. So if things are looking nasty there are two possibilities.

Rituximab is a MAb used for rheumatoid arthritis. Would involve hospital infusions every 6 months to a year ongoing.

Autologous Stem cell therapy (AHSCT) is essentially collecting some of my haematopoietic stem cells and putting to one side to use later (Blue Peter style) then zapping my immune system with some pretty serious chemo. They then stick the stem cells back in and wait for them to grow into immune cells.  There is a centre in London currently taking NHS referrals but am pretty sure I would not qualify. But fear not for £££££ there are many centres in such far flung places as Mexico, India, Russia etc offering the same.  Would require some serious research as there are any number of variations in how treatment can be carried out and some of the clinics are probably pretty dodgy 🤪 The other thing to bear in mind is, although apparently safer these days, it's still on the risky side plus it's only gonna stop new damage - many of my nerve cells are already primed to die and this would not be reversed.

H'mmmmmmmm....

*lymphocytes were traditionally measured in number per litre. These are pretty huge so you get numbers like 0.8 x 10~9 (that is meant to show 10 'to the power of' 9). The modern way of measuring is number per microlitre so you get numbers like 800.

Lymphopaenia May 2017

Here for the record is a screenshot of my May 2017 lymphocyte profiling.

The only low subset was CD8 T cells at 0.093

CD8 cells (Cytotoxic T Lymphocytes) target intracellular viruses and carry out tumour surveillance.