Spinal Cord Injury Cure Community Survey - Part II

What’s stopping us? 2018SCICure Community Survey – Part II

Welcome to part II of the 2018SCI Cure Community Survey. In this next post I want to look at how SCI Cure Community members think about involvement in finding a cure for spinal cord injury.

I found some interesting information and also found a few interesting questions that I should have asked. Those I’ll get to in the end, but first, let’ shave a look.

On a scale of 1 to 10, with one being a strong NO and 10 being a strong YES, please rate the following	1-2	3-4	5-6	7-9	9-10	Total of 7 - 10
I would like to be more involved in finding a cure for SCI.	6	2	18			62
I would be willing to regularly volunteer in finding a cure for SCI.	9	6	16	26	32	58
If I liked an organization actively campaign for a cure for SCI, I would gladly donate funds.	7	6	20	22	35	57
If I liked an organization actively campaigning for a cure for SCI, I would participate in that group.	7	2	16	27	37	64
If I liked an organization actively campaign for a cure for SCI, I would pay a monthly subscription/due to that group	14	10	16	24	25	49

And the answer that gave me the most hope:

If you would like more information on how you can get involved in a cure for SCI, please leave your name and email address below.

About half of all respondents left me their email address.

Now, let’s talk about this a little.

First, I have to admit that those who would do a survey like this, are probably the first ones to raise their hands to cure paralysis, but I think we should take heart by this showing and think of ways to turn these online results into real activity.

For the meantime, I have invited those who left their email addresses to a simple web forum so that they can share their ideas for becoming active. I also know that this may not be the best first step as those who raised their hands want someone to tell them how they can be active. I guess I’ll have to try both ways.

So, after doing this survey, what questions do I think I missed.

My doubts about my questions comes from after looking at the answer to the below question.

Currently and/or in the past, do you feel that you have personally been involved with anything that may help lead to a cure for SCI? 44 people out of a total of 103, about 40% answered YES.

I think it can be summed up into one question, and please believe that this is not some kind of accusation and keep following me here.

Let’s re-examine some questions we’ve already looked at. This time, instead of looking at all the respondents, let’s just look at those who are on the positive side, those who picked a 7 to 10 response.

On a scale of 1 to 10, with one being a strong NO and 10 being a strong YES, please rate the following	Total responses	Total of 7 - 10	As a %
I would like to be more involved in finding a cure for SCI.	88	62	70
I would be willing to regularly volunteer in finding a cure for SCI.	89	58	65
If I liked an organization actively campaign for a cure for SCI, I would gladly donate funds.	90	57	63
If I liked an organization actively campaigning for a cure for SCI, I would participate in that group.	89	64	72
If I liked an organization actively campaign for a cure for SCI, I would pay a monthly subscription/due to that group	89	49	55

Therefore, comparing those who’ve done something in the past to help CURE versus those who want to do something to help cure, my questions would be this.

What’s stopping us?

You’ll notice I used “us” and not “you”.

Let me tell you wants stopping me and then you can comment.

Pain. Time. Belief in efficacy. Fear I don’t know enough.

Does that sound like you? Let me know and maybe we can keep each other’s faith and strength high enough to do something about it.

Spinal Cord Injury cure community survey - Part I

Ninety-nine members of the Spinal Cord Injury community took their time to answer this year’s survey. While not a huge number, it is similar in size to 2011, and I always must remind myself that we are not a huge community.

After I finish writing part II, I will make all the data available, but I am going to spend a few minutes looking at what I consider to be the most interesting results. You may see something that I missed, so please feel free to write to me and point it out.

Do you believe that a cure for SCI is necessary so that people living with SCI can have an improved quality of life and not have to suffer secondary complications?
YES	93
NO	3
Undecided	2
	98

People aren’t fooling themselves. Even with all the progress science has made in reducing secondary complications and improving quality of life for those of us in chairs, over 90% of respondents believe that CURE is a necessity to answering these issues.

Spinal cord injury community survey - less than five minutes

Back in 2010, I conducted a survey into the SCI community and the feeling around cure and their own cure activity. Since that time, at lot has changed (a lot more trials), and nothing has changed (there still isn't a cure).

If you have five minutes, it would be great if you could help with this survey.

Why?

• It may get you more involved in a cure for spinal cord injury.
• It may give you some ideas for how to participate.
• You may give others some ideas on how to get more people to participate.

I have been in touch with different groups involved in cure, and they are interested to know your opinions.

At the end of the survey, there is an optional chance to leave your name for more information.

Thanks for taking the time.

Still here in 2018!

I hope that you and your friends and families all had a wonderful new year's holidays.

Getting back to work now and just like you, I'm still trying to catch up. I'm a little late getting back to the site, but it's not forgotten.

Actually, over the holidays, I had a chance to make a few long anticipated changes to the site that you may or may not notice.

• The site is now at www.StemCellsandAtomBombs.org and it's the window to all the language versions.
• The language versions are all at their own subdomains:

Wishing you all a "Cureful" New Year!

As we're about to start 2018, I'd like to send you all a quick message saying thank you for all your support over the years. This blog has had it's ups and downs, mostly based on my health, but I thank the regular readers for your encouragement over the years.

The blog started in 2010 and even though I'm still writing about the search for a cure for paralysis caused by spinal cord injury and I am still hopeful that a cure will be found. Some say that even if a cure can't help them because they've been injured for so long, they hope that it will help others. This is very  noble, but while I want a cure for all, I still have hope that I too will be included in this cure.

We need more info about BBS return and epidural stimulation

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Hello everyone. I've spent the past weeks trying to craft together some questions about BBS (bladder, bowel, sexual function) return to ask to Dr Susan Harkema's team involved in epidural stimulation trials. My time was not only spent writing, but consulting with other activists in the community as I wanted to make sure that my questions were both correct and fair. 

As you may know, the trial, with many sponsors including CDRF (Christopher and Donna Reeve Foundation), and marketed under the BigIdea (which I think is wonderful marketing) has produced two papers and has put out some information about BBS return. 

See the last two posts for more information about the trials and my interest in them.

"An unexpected success story". Really? I'd like more info. PART II

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Just so you know, this post is Part II. If you haven't yet read it, Part I is here.

It took me a little time to get back to Part II as I've been waiting on some information. It hasn't all arrived yet, but I figure I'll get down what information I can now.

Sine it's been a few weeks I'll make a short round up of Part I...

• Epidural stimulation trials on standing and stepping at the University of Louisville, supported by the Christopher & Donna Reeve Foundation (CDRF), receive new press attention after the lead researcher Susan Harkema published a paper with her results.
• But more importantly, already as early as October 2014 (and probably before that too), the CDRF website reported that, "Even more surprisingly, all four participants experienced significant improvements in autonomic functions, including bladder, bowel and sexual function, as well as temperature regulation."

"An unexpected success story". Really? I'd like more info. PART I

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This is a story about BBS (bladder, bowel, and sexual function) return, but you'll have to stay with me a bit to follow.

I was pleased to read the following stories in Newsweek (Paralysed man surprises scientists by standing and moving on his own) and Science Daily (Individual with complete spinal cord injury regains voluntary motor function). Very short summary; extended activity-based training with epidural stimulation resulted in the ability for a man with a complete spinal cord injury to stand and move without stimulation six years post injury. The study was done at the University of Louisville in Kentucky and funded by CDRF (Christopher and Dana Reeve Foundation), and others through their Big Idea project.

Help Wanted! Curing paralysis together

Hello. I'm now currently working on the next blog article, it's about peeing and other things that many of us with a screwed up spinal cord can't do so well.

I've been in touch with some interesting people who are helping me understand some facts for the next article, so please hold on about a week or so.

In the meantime, I'm always looking for help in running this blog, in fact, I'm even considering changing it over to a podcast or even a vlog. 

Private vs Public money in the race to cure paralysis

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click HERE to enlarge

See, I'm back for the second post since my return, and maybe today I'm going to raise some controversy.

Did you have a chance to read the last post and it's link to "Tequila Shots for Cirrhosis Research"?

Before I become controversial, I want to write a disclaimer...

• I appreciate all the private funds that have gone to curing paralysis.
• I appreciate all the private efforts individuals have made to cycle, and wheel, and run, and walk to raise money to cure paralysis.
• I thank you because for now, raising private funds is one way that we can work to cure paralysis.

But, is private charity the best way to fund medical research?

I often link to "Tequila Shots for Cirrhosis Research". Simply put, it's the story of Rick Hansen and his goal to wheel across the world to raise money for SCI research. This was just after Terry Fox and from a young age is what made me conscious of the idea of doing something extraordinary to raise funds from private individuals for medical research. 

Get the shot glasses out...I'm back

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It feels that I have announced my return so many times that people might actually doubt whether I'm really back for good. Well, I guess work will be the only way to prove that, not only to others, but to myself too.

 We all know that paralysis prevents movement, but I think many people in the able bodied community don't know what other things paralysis does. For one, it kills, both literally and figuratively. It kills body as well as soul with it a crushing of hope.

I know; I was a victim of the "other stuff paralysis does", namely bone crunching pain. My life moved from fighting for a cure for paralysis to trying to defend my self full time from the pain it brought. I like to consider myself and strong person and I hate to feel like a victim, but I must bow to it; paralysis made me a victim of its terrifying secondary conditions and blacked out 6 years of my life.  Not to go into great detail on this first post back, I think I have the pain part under control enough to go back to the cure part,  but as a hint, it wasn't mind over matter or positive thinking, it was medical technology (and of course your thoughts and prayers gave me the impetus to keep searching for an exit out of hell).

Spinal Cord Injury Kills

Today I read a short article titled "JT McNamara: Jockey paralysed in 2013 Cheltenham fall dies".

Spinal cord injury kills.

This is something that is often forgotten, and I'm not talking about at the time of injury either. People living with sci have a significantly lower life expectancy. It kills us little by little even if we survive the initial injury, and it kills us in cruel ways. 

We put a lot of effort into pointing out how people with sci are the same as the able bodied, but without understanding how we are TOTALLY DIFFERENT from the able bodied, cure will never be given the priority it needs. 

I'm not saying that we shouldn't have the same rights and opportunities than the able bodied or can't make significant contributions to society while we are disabled, but differences are also important to note so that cure has the urgency it truly deserves. 

Some things to know about those of us living with sci

For every successful businessman or career woman in a chair, there are countless more unemployed. According to a 2002 study, the unemployment rate in America for those with spinal cord injury was 63%.

For every happy person living a carefree life in the chair, there are countless suicides. The rate of suicide in the spinal cord injured community has been evaluated as high as five times greater than those without disability.

For every person living a long life in the chair, there are thousands who die prematurely due to complications stemming from their spinal cord injury. A 2009 study stated that life expectancies, "are still somewhat below life expectancies for those with no spinal cord injury.”

For every person in a wheelchair enjoying greater accessibility in our communities, there are countless numbers of others who are confined to their homes due to poverty, pain, or vent dependence to whom ramps are meaningless.

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.

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.
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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.