06 June 2016

What does BBS return mean? That's the question I'm going to ask!

I know some people are wondering what BBS is.

A new television station? A new pro basketball baseball league?

For many of my friends in the spinal cord injured community, this will be easily understood. It stands for Bowel, Bladder, and Sexual function, but I'm sure that for many who don't know anything about spinal cord injury, even this may not be clearly understood.

It's never really discussed, for what some may consider obvious reasons, but it should be as well understood as the loss of walking or hand function after a spinal cord injury. So a real easy explanation is this: after a spinal cord injury most people lose control of their bowel and bladder and men can no longer get an erection. 

What does it mean to have no control over our bowels and bladders? 

Well, other than the normal terrifying fear of an accident, it means that you don't know when your bladder is full or when you need to move your bowels. Most deal with this through the use of a catheter to empty their bladder (inserting a tube in your penis or urethra to remove the urine ever four hours or so), and a bowel programme (going to the bathroom at a certain time everyday and using either or both digital stimulation and different kinds of medicines).

For the loss of erection part, I think that's quite easy to understand. You simply cannot get an erection naturally either by physical stimulation (reflexogenic) or through fantasy (psychogenic). 

As you can imagine, or know from your own experience, loss of these three functions are a terrible burden on people, including myself, who are already suffering a great deal through the loss of natural movement. In fact, it is often cited by people living with paralysis as the main things they would want back; if there was a choice that is. This is not to say that walking isn't important, and that with neuroregeneration movement, along with BBS would be dealt with naturally, but when viewed as separate issues, BBS rates high.

So it was with great interest that I read an article about a "breakthrough" with transcutaneous electrical stimulation (this is electrical stimulation of the spinal cord by attaching electrodes to a patient's back--as opposed to epidural stimulation which requires surgical implants of electrodes). I put breakthrough in quotations simply because the press often reports on "breakthroughs" that are either not actually recent, or not as remarkable as what is reported.


I do find this article interesting. While the movement part isn't where most of us would like to see it at this point, the article does report, "The other thing to note is that this sort of training yields measurable and important benefits for paralysed patients including improved overall health, mood and bladder and erectile function."

I think this is very important, but the problem I have is that while BBS return is often reported as "measurable" as in this article, or even more "a return of BBS", no one, not even in the scientific papers I have read, states the measurement or what "return" means.

I don't consider this to be the fault of the scientists, who I think have an intellectual understanding of the massive importance of BBS return, but who may not understand the HOPE that is stirred up when these things are reported. Those who I've spoken to come away with any range of definitions from minor to major, to even peeing your name in the snow.

Therefore, I will write to professor Reggie Edgerton from UCLA who ran this study and ask that he share the measurable part of the BBS return with us. I'm not writing him to trap him because I don't believe it's true, I'm writing to him in the hope that we can explain the current state of BBS return using his non-invasive therapy.

My email follows:
____________________________
Dear Professor Reggie Edgerton,
My name is Dennis Tesolat. I live in Osaka, Japan, am a paraplegic from a intradural avm hemorrhage, and I write a blog about paralysis cure. Actually I should restate that last part. I wrote a blog from 2010 to 2015 and took a year off in order to deal with a lot of chronic pain. I’m starting back now, and the first thing that came across my desk was an article from NewsTalk.com from 21 May 2016.

While I understand the “walking part” is still in its infancy (also having read other articles on the work you did with five other patients), I was very interested in what was reported as “measurable” return of bladder and sexual function (I’m also wondering if bowel should be included in this even though it wasn’t in the news report).

We’ve seen the same reports coming from the Reeve Foundation using epidural stimulation, but I find that the problem is that no one is telling us what “return” means. At the best this causes interest confusion, and at the worst, it may foster false hope if not properly reported in the press. And please understand, I’m saying that how things are reported in the press is the problem as you cannot control what the press reports or even understands.

This is why I’m writing to you directly, and also hope to publish your answer (oddly enough I still have a good readership even though I’ve been away a year).

I will ask you some simple questions, and hope that you can answer me in as much detail as you can give. I understand that when trials are being done “half reporting” of findings is not a good idea, but since this is already in the news, I feel that you probably can add much more information than what the press is willing to publish.

So my question is this:
  • ·         What return of BBS was found?
  • ·         How was it measured?
  • ·         What are those scores?


In even simpler terms, people want to know these things…
  • ·         Do the patients know when they need to urinate and or defecate? How strong is the feeling and how accurate?
  • ·         Do they still need to catheter themselves, or use things like digital stimulation for a bowel movement?
  • ·         About sexual function; are drugs needed to achieve an erection; is there feeling in the penis; how about psychogenic erections; can the patient achieve orgasm?


I excuse myself for writing to you completely out of the blue, but do hope that you can help me help my readers understand this especially since the transcutaneous therapy is non invasive and could be a tremendous help to people in regards to the return of bowel, bladder, and sexual function in the very near future.

Thank you for your time in reading my email and I hope to hear back from you.



05 May 2016

Time to get off my butt! Literally, I hope.


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.