On cures

There have been some innovative and very high profile developments in the last few months when it comes to treatments for Spinal Cord Injury (SCI). Scientists, researchers, and advocates have demonstrated that creative approaches can lead to exciting and potentially groundbreaking results in treating this oh so complex injury, which no one seems to really, truly understand.

I’m often asked how excited I am about these breakthroughs and what they could mean to my own recovery and although my usual, quick answer is, “Yeah, it’s pretty cool. Lots of interesting things happening these days,” I figured I’d use this blog post to expand and clarify my true feelings.

If you have no idea what I’m talking about, I’ll quickly outline and link to the three major developments that have come out just this year.

1) Epidural Stimulation – By implanting a small device over the protective coating of the spinal cord, and sending varying electrical currents to activate nerve circuits, four initial participants (all having suffered severe SCI’s) were able to achieve some motor control in their lower body as well as regain some other essential bodily functions.

2) Olfactory Stem Cell Implants – Scientists in Poland and the UK removed a man’s olfactory ensheathing cells (specialist cells from his nose that form part of the sense of smell), grew them and then injected them into his spinal cord to repair the damaged nerve fibers. Six months after surgery and with hundreds of hours of exercise and therapy, he slowly regained the ability to walk with braces.

3) Proteoglycan Drug – A neuroscience professor in Ohio developed a drug that releases nerve fibers that have become trapped in scar tissue after a spinal cord injury, thus bridging the damaged cord and restoring some function. The study was conducted on rats but they’re quickly planning on trying it on humans.

Now that we’re all caught up and on the same page, I’ll explain my thoughts on these developments starting with the big positives and reasons I’m excited, but then also sharing why I’m cautious and skeptical.

First of all, I’m thrilled that more people are paying enough attention to this injury to come up with long-term projects to address it. A scientist behind the second story I mentioned above was quoted as saying that this development was “more impressive than man walking on the moon”. I couldn’t agree more.

Secondly, the fact that these three developments all used different methods gets me excited. If they were all stories about stem cells or a medicine of some kind, I would be more skeptical of having all the eggs in one basket. Then, if something negative or ineffective came out about that one approach, the whole thing could come crumbling down. Three different methods means that the damage to the spinal cord is being treated with three individual approaches that each have their advantages and shortcomings, but they’re all leading to results, which is incredible.

On a similar note, the diversity of approaches means that there could be a potential to combine solutions in the future. Maybe with some people the stem cell treatment is less effective but the Proteoglycan drug picks up the slack. Maybe none of the treatments on their own lead to dramatic improvements, but in combination with each other (and whatever new technologies arise) a person can bounce back nearly 100%! How amazing would that be??!

My final reason for excitement is because this topic is, for lack of a better term, sexy. Curing paralysis is a BIG DEAL. Getting people out of wheelchairs and back on their feet is truly earth-shattering. As someone who would give ANYTHING to regain function the way I had it before my injury, I can honestly say that no other medical breakthrough gets me as fired up as this. I’m obviously biased, but I embrace it.

Now for my reasons for caution:

The time frame for any of these treatments to reach the masses is loooong. The first study was conducted on four people. The second, on one. The third was on rats. I know technology moves at a frighteningly and often surprisingly fast pace these days, but even by the most optimistic estimates, these treatments are a few years away from being available to the millions of people worldwide who would benefit from them.

The financial costs, both for developing these treatments and for receiving them in the future, are huge. As I mentioned above, curing paralysis is truly groundbreaking news, but unfortunately, there hasn’t been nearly enough investment in finding ways to do this. The reality is that SCI doesn’t affect as many people as cancer or diabetes or AIDS and while I wish I could say that it’s not a numbers game, everything I’ve read proves that it absolutely is a numbers game. When the Christopher Reeve Center (with millions of dollars of its own, which has been the dominant driving force in treating SCI) has to launch a big PR campaign (see the epidural stimulation link above) to raise funds in order to continue research, it shows just how underfunded and under-recognized treating SCI is.

On top of that, we have to assume that at least initially, any potential cure will likely have a high financial cost to the user, which will automatically limit the ubiquity of the treatment. At least in the US, where medical insurance is always trying to find ways NOT to pay for anything, I’m not hopeful that insurance companies would be on the cutting edge of promoting and paying for a splashy yet expensive cure, even for an issue as sexy and exciting as this one.

I’m not trying to be a Debbie downer about all of this, I truly am thrilled to see what the future holds, but I’m a pragmatist and realist at heart. The future is very exciting, but for someone like me, who suffers through day after day of frustration at not having a fully functional body, I don’t have tons of patience to just look forward to the future. I want to do something now. I don’t plan on sitting around and waiting for someone else to solve my problem and I’m way too Type A and motivated to stand by and accept complacency or the status quo. For that reason, none of these developments changes a thing in my day to day routine. I’m still going to work as hard as I have been to recover through my own hard work and will.

The one thing that all of these scientific developments prove to me more than anything else, is that the existing paradigm and approach for treating SCI is outdated and just plain wrong. These ideas show that the antiquated yet predominant way of thinking, of taking away hope from someone, of telling them they’ll “never do this or that again” has to change. It was only a few years ago when no one in the medical community believed in neuroplasticity, or the ability for the brain or nervous system to repair or change itself. Now people are changing their minds faster than ever and accepting that as arrogant and all-knowing as we human beings think we are, we don’t always know the answers. That way we remain open to solutions as they come, and I’m fully confident that in treating SCI, the solutions will indeed come…

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19 thoughts on “On cures

  1. My son’s neuro-physio three years ago… purportedly a specialist.. hadn’t heard the term neuroplasticity. Nick explained…

    TBI and SCI face similar problems in the area of funding. Widespread illnesses with a universal fear factor….’it could be me’… seem to do better in the race for funding of course and that hampers so much potentially life-changing research.

    Like you I find the advances in medicine and technology hugely exciting for the future, and I have no doubt at all that solutions and cures WILL be found within the lifetime of your generation. Whether they will be readily affordable or available through existing services to all who need them is a different matter.

    But it is today those such as yourself and my son are waking up to face and today you are seeking to live your life. I watch the determination and effort, the courage and gallantry to do it with humour with which you have both taken your progress and recovery into your own hands and know that neither of you are likely to sit back and wait for a nebulous tomorrow.

    1. I can’t believe he hadn’t heard of neuroplasticity! Oh wait….yes I can. Seems too many people are behind the times that way… I completely agree with you that the affordability and availability of solutions will be a challenge when they come out. I also think that sitting back and waiting for anyone else to solve the problems that your son and I have is just a waste of time. Yes the solutions may not out there yet but that doesn’t allow for complacency or acceptance. We must keep working hard… -AB

      1. That is Nick’s view entirely. He is throwing everything he has and is at his recovery, knowing that there are no guarantees but every reason to keep on working, hoping and attempting the impossible.At the worst he may fail to recover his ability to walk. But if he doesn’t try, he WILL fail.

      2. That’s exactly the way I feel. I would never be able to forgive myself if I didn’t try and then looked back and said, “What if I had done things differently? what if I had given it my all?” I’m not one for regrets, hence why I’m trying so hard to recover and giving it my everything. No regrets, ever. -AB

  2. Nice overview here and thank you for sharing your thoughts. I’m also very excited that paralysis and SCI are getting the attention on multiple continents that they are, particularly because they are topics of which I was only vaguely aware a year or so ago – and it turns out that they are very real and evidently widespread issues. For me, these developments are a reminder that my recovery must come from within, and that it is my responsibility to work with my own body to find healing, rather than expecting it to simply appear from some outside force or medical breakthrough…

    1. Yeah who would have thought before our respective accidents that we would be thinking so much about these issues? But that’s the way life is I suppose. Once again, your beliefs and mine are in line, that recovery comes from within. Even if you take advantage of a breakthrough at some point, you still need to be strong enough to make the most of it. There are no overnight cures, that I’m certain. There’s no way that damage to such an integral part of the body can just be reversed quickly and overcome. So the fight continues… -AB

  3. While sounding promising, widespread trials and research are sill in their infancy. One can only hope, whilst continuing on with your own work towards recovery. It helps to look back only 50-60 years and marvel at the progress of medical research though. Scientists ARE making progress. The unimaginable IS becoming Real. I guess like many other subjects, SCI research just needs more funding and THAT is probably the Immediate goal. It’s not about possibilities and overcoming injuries. It about Money and Research.

    I love that quote “Man cannot discover new oceans until he has courage to lose sight of the shore.”

    Perhaps the author should have added………Man should learn to swim or raise funds for a boat (once he has gained that courage).

    1. Hahaha. I love that quote. It describes so much about the medical system and its shortcomings. Many in that community always think that they have their sights on the shore, that what they see is true and accurate and irrefutable but it takes those courageous voices to stand out and say, “hey maybe we’re doing this all wrong, maybe there’s another way.” I too hope that the funding and will to find cures will come. I’m hopeful they will. -AB

  4. Hiya,

    I just recently came across your fascinating journey, which actually brought me to absolute sob mode. It’s because since my SCI – 8 months ago -, I’ve stuck by a single prospect: the mind is the primary healer. Reading your blog just gave me a bit of hope and support on where I stood. I, however, have several questions on things that I could relate to, in terms of recovery. I need them to be answered by someone’s who’s been through the ins and outs of a SCI, not a doctor or specialist.

    Is there an email or something else that I could contact you on,

    That’d be grand,

    Lina – 17 yrs 🙂

  5. Your attitude is one I can understand – those advancements are awesome, but it doesn’t mean you can sit back and wait! 🙂 Sending you good energy as you continue to move forward in your journey – and hopefully as things change, the one change that will be most dominate will be that doctors stop taking away hope!

  6. Hi Arash!
    This is Horacio from Berkeley High. I recently ran into Thiago Venturi and told me about you. I looked for you on Facebook and got to this page.
    I remember us playing soccer in High School, first as teammates, and then as your coach. In all my memories I see you as a warrior on the soccer field. Always trying your hardest and fighting for the team. If anyone has the heart and the will power is you.
    Let’s keep in touch!
    Un abrazo
    Horacio Pastor

    1. Great to hear from you Horacio. Thanks for reaching out and of course I remember our soccer days. Would love to keep in touch and thanks for the positive words. Un abrazo a ti -AB

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