31 December 2017

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.

It's great to be back at this and while I'm a little slower than I would like, I think I'm doing some interesting work on epidural stimulation and how it will affect bowel, bladder, and sexual function return. I'm planning on doing more of this work and hope to track all the current epidural stimulation trials in regards to BBS return. My goal, is to get down to the facts of this and to see clearly if it's a type of therapy that the spinal cord injury community should support or not. Many have made up their minds that this therapy is worth pursuing, but so far, I've not seen the facts that make this a worthwhile pursuit. So with an open mind, I will keep looking for more information to give you.

Also, I'd like to put a new community survey out in the new year. I think that it's really worth hearing from all those who make up our community. Sometimes great ideas are spawned when we cooperate and share information and ideas.

I wish you and all of your of families a joyous new year and let's hope that the new year is also filled with cure.

21 December 2017

We need more info about BBS return and epidural stimulation

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.

Below is the question I will be sending to Dr Harkema as I know there is a very big interest in the spinal cord injury community in the trials and especially in the claims of some BBS return. I think hearing directly from the scientist as opposed to the media will give us a better idea about what this trial will mean for us.

09 December 2017

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

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."
  • After this I contacted some folks at the National Institute of Biomedical Imaging and Engineering (NIH) who explained to me that they had put together a consortium back in 2015 of doctors, researchers, scientists with "the therapeutic goal is improving key autonomic functions - bladder, bowel, and sexual - effectively and safely".
  • This got me thinking even more about the return of BBS that was already reported so I contacted the lab in Louisville to see if they would be doing a proper study of BBS from now on. Great news is that BBS will be part of the ongoing study.
First of all, I want to admit that I am cynical about the role of epidural stimulation in regards to any real cure for paralysis. I don't think that the current return of some motor function would do much to really improve quality of life. 

Why? Well, as reported, after many years, I believe it was 2011, one of the subjects is able to stand up. Not step, but stand up. So I just don't see how we can expect wide scale use when six years of locomotor training has to go into it just for the end result to be standing up.


14 November 2017

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

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.