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Monday 24 July 2017

#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




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