31 December 2012

Wishing all of you hope for 2013

The end of another year.

I've now seen part of 2009, and all of 2010, 2011, and all of 2012 as a paraplegic. My paralysis has caused me to have three operations and spend almost one and a half years in hospital.

Everything that has happened to me I later read to be quite rare conditions starting with my initial 'injury', a subdural hematoma in my spinal cord, very, very rare, probably caused by an arteriovenous malformation also rare. I then had an operation for an arachnoid cyst which formed at the initial lesion site, quite rare, and then followed up by syringomyelia which is like a fluid filled tube in the spinal cord which goes upwards, thus causing damage above my injury level. For me this meant a loss of sensation in my back and some pain in my upper right arm.  Syringomyelia, also rare. I've had so many rare things that I sometimes joke to myself that I ought to start buying lottery tickets.

You'd think that by this point in the game I'd start to lose hope in ever walking (and going to the toilet normally and making love - let's not forget these biggies) like before, but I haven't. 

And I tell you that my hope is not based on a simple want or an illusion, but on real scientific facts that someday we will return from paralysis.

It's impossible to name ALL of the big research going on and because I know that many of you have an aversion to reading long scientific papers, I would like to introduce you to hope that you can watch.

In my September and October blogs I introduced you to the Working2Walk conference held in California. This conference introduced some amazing new research into curing paralysis and not only was this information made available to the participants, but it’s also available to all of us on the Unite 2 Fight Paralysis vimeo site.

I urge you all to spend some time watching these videos and learning about the real hope that exists for us. 

And as always, I urge you not to just sit and wait for cure to bite us in our collective rear ends, but to work towards it. If you don't know what to do, a good place to start is with my blog’s CureCaptains or the Cure Warriors run by U2FP. These programmes help you participate in a cure for paralysis.

We also have some work ready to go for January 2013. First we will be meeting with a leadership team from the Rick Hansen Institute/Foundation (RHF/I) to talk about their vision for a cure for paralysis. Many of you supported our actions aimed at RHF/I in the past and it was your emails of support that finally got them to agree to meet with cure activists from across the world to hear our ideas on how they can further a cure for chronic spinal cord injury.

Also, on 15 January, a colleague of mine from the UK and I will talk with the CEO of Christopher and Dana Reeve Foundation to talk about our concerns that they are spending too much time 'celebrating' paralysis, and not putting out enough information out on 'curing' paralysis. 

Both of these meetings have been set up because you all continue to stir hope and support our actions.

I leave you with one final message for next year from a man who is my hero; Tommy Douglas who led the first socialist government in all of North America when he was the premier of Saskatchewan, and is the father of socialized medicine in Canada.

"We should never, never be afraid or ashamed about dreams...Where people have no dreams and no hopes and aspirations, life becomes dull and a meaningless wilderness."

21 December 2012

Working2Walk - the book

Many of you know our friend Kate Willette, who's been writing the Working2Walk live blog for the last five years. She's come up with a way to produce a book about the conference that we'd all like to see in as many hands as possible. The way it works is:
  • She describes the project plan in detail, and the clock starts ticking.
  • She reaches out to everyone who would be interested in the finished product.
  • She asks for people to back that project by pre-ordering a book or two, sharing the idea with their own communities, and kicking in a small amount to pay for the cost of production and shipping.
So far, she's got commitments for more than half the project! There's a time limit, though, and if she doesn't get fully funded by January 6th, there won't be a book!
If you can help, go to Kickstarter now and do it! Then add a note and forward this e-mail to everyone you can think of. We really want this to happen; we really want our story to be out there in print, in hospitals and libraries and exercise facilities and homes.

Many thanks from everyone at Unite 2 Fight Paralysis
This post was reprinted from a 19 December emailing from Unite 2 Fight Paralysis

18 December 2012

You speak to the Rick Hansen Foundation & Institute

First of all, I'd like to thank all our readers out there who stuck with us through all our campaigns to the Rick Hansen Group (RHG: Rick Hansen Foundation and Rick Hansen Institute). All the way from our first campaign in June of 2011, followed by our appeal for direct talks in August 2011 and ending with the last campaign targetting the Interdependence conference in May of this year. We finally will get what we've always asked for, a chance for direct talks with those leading RHG.

After some preliminary discussions and email between me and RHG, it looks like three delegates from our campaigns from Canada, the UK, and Japan will meet leaders of RHG by skype. Our goal, just one thing, to find out about RHG's vision and plans to become leaders for a cure for chronic spinal cord injury (SCI) and how we the paralyzed and our supporters can be involved.

From the very beginning we understood that the voices of ones and twos are easily shunted aside and the more we spoke in unison, the louder our voices grew; from the ninety or so who sent the first protest emails to the last group of 750 who emailed RHG during our INterDEPENDENCE campaign. The paralyzed are standing up and demanding that large foundations show leadership the size of their purses in building collaboration and vision in our war on paralysis.

Thank you. These upcoming talks are your good work and you will be kept abreast of the talks.

Dennis Tesolat
BlackBerry from DOCOMO