It's been over a year since I took some time off to try to get control of my pain as it was getting in the way of any kind of cure work. Well, another operation and three weeks in pain management rehab and I’m back. I haven’t yet beat the pain, but I guess if I don't get off my butt now, I'll never get off my butt in the future. I have the same premise now that I had when I first started and it's that if we, those living with paralysis don't get involved, we'll never cure chronic spinal cord injury.
So, here I go again...
Sadly, after such a long absence, there are now many new people living with paralysis that I haven't yet had the chance to meet, so I feel that I should start with a brief introduction.
My name is Dennis Tesolat and on 12 August 2009 I suffered a spinal subdural hematoma caused by an AVM. An easy explanation (because it’s quite rare); I had a bleed in my spinal cord and the haematoma pressured the cord and left me a paraplegic. I started this blog while I was still in rehab and almost immediately I started meeting many other cure activists from all around the world who I worked with regularly and were an enormous help and encouragement to me.
I never intended to set up my blog as a “Dennis speaks” type thing because who really cares what Dennis says and, "Who in the hell is Dennis to speak anyways?" My goal has always been to involve myself in getting others involved by organising people to improve transparency and information exchange in the cure process and building urgency for cure. These are the areas that I think I can best contribute to.
While I wasn’t always successful in my campaigns, I was able to include people all over the world, and I know from many sources that we did make an impact. Have a look through the blog's archive for some information on the campaigns I was involved in.
As always, I'm relatively hopeful about the advances in some of the science and this is a good summary, but I know that with the voices of those of us living without paralysis, a cure will continue to evade us. Oddly enough, I've never considered the science to be the main obstacle.
So what do I think are the main obstacles?
I think, and I know that many concur, it is a failure of government to not only fund science, but to lead the process. In short, we are missing a road map to cure, and the only group around that can bring all the players and pieces together is government. While governments do provide a lot of the important funding, they have basically outsourced their responsibility to massive foundations, universities, and the private sector which have no accountability to the people living with paralysis. Other smaller groups, with often wonderful intentions, are then left to scramble for the remaining government funds and compete for private donations.
I see a lot more cooperation and collaboration amongst scientists than I did six years ago when I started, but COORDINATION is what will bring cure, and that I believe is the role of government acting on our behalf.
So in concrete terms what role would I like to play? I’m not a scientist, but I think I am good at analysing logistical and economic issues, and bringing people together to affect change. I would like my role to be in investigating what is going on in the world of cure and why it continues to evade us. I want to gather up all our voices in order to get the answers and information we need.
These are the current therapies that I am interested in getting more information on.
- Epidural stimulation and specifically the current trials being run by the Christopher and Dana Reeve Foundation (CDRF). I love the name of this programme, “The Big Idea”, and I love the feeling they are trying to create about their work. This is the passion that I think is often missing from CDRF. While I’m not convinced about epidural stimulation, I am always willing to be convinced. Specifically, I am interested in getting more information in your hands about some of their important claims about bladder, bowel, and sexual function.
- Chondroitinase (aka ch'ase) and the work being done by Spinal Research in the UK and the Jerry Silver lab. Personally, I think that the work around chondroitinase is the best tested and worked with avenue to cure. It’s been played around with for a couple of decades. What we need to know now is what the plan is. Something this important requires more transparency so that we know what WE can do to move things along.
- In 2014 the papers blared with the story of a paralysed Polish man who had a positive outcome after being treated with olfactory ensheathing cells in a research carried out by professor Geoffrey Raisman in the UK. Since this time, we’ve heard very little about what the plans are for the future. 2014 was two years ago and seeing where this exciting research and further clinical trials going is a must for our community.
Also, as before, I want to continue researching how funding works and what we can do to; increase funding, make funding more goal driven, and make sure funding isn’t wasted.
Many years ago in rather nasty attack from Shawn Friedkin, acting a surrogate for the Reeve Foundation, I was told by him that, “quite frankly we don’t need accountants to find cures…we need more scientists and more funding.” Me, I don’t think that just money and more scientists will lead to cure and I wish to explore how we can improve funding for spinal cord injury cure. If funding isn't used wisely, it will be lost.
Most importantly I want to investigate what I consider to be the political solutions to cure and how we can organise ourselves to have the most impact.
I think that the name of my blog, StemCells&AtomBombs sums up my views about this part quite nicely.
If you want to build an atom bomb, or put a man on the moon, government is the only agency with the money and coordinating power to do it. They didn't make the bomb by throwing around money to individual scientists and foundations in the hope that a bomb would be made. No, they centralized both the resources and the science and made it accountable to leadership.
For that we need leadership and that’s where you and me come in. We need to raise our voices to get this leadership. I’ve said it a thousand times; if you don’t have a lot of money, then you need a lot of people, and my goal is to get us together to demand the necessary leadership, and to demand that money and work that is currently being done is accountable to us. Only us, the people that live the nightmare of paralysis can give it the urgency it needs to make cure a priority.
Are there other areas of research that you’d like more information about? Are there other pressing things that you think we need to know? I’m open to any decent project and more collaboration with others.
That's a pretty big list and I what I hope for most is that I don’t fall away again due to pain and that I can be there at the end of the cure finish line with you.