Aug 042008
 

One of the things most frustrating to me about my lawsuit was being unable to blog about my brain injury. It wasn’t so much not being able to vent as being unable to blog about the discoveries I made that made a huge difference to my functionality and thus to my life. With a broken leg, you can compensate with crutches as your bone(s) heal, and the bones can be directly supported by a cast or pins as they grow back into wholeness. Eventually, the bone regains it strength and can be walked upon again. But there are no crutches for the brain, just compensating strategies that take a small bit of the frustration out of everyday activities. And there are no casts to help the neurons regenerate or pins to grow new neurons, just time and hope that they will do it on their own and give you back all that you’ve lost. Ha!

This medical model was not satisfactory to me, to say the least, and when I did find real treatment, real crutches and casts, real methods to regrow functionality in the brain, I wanted to yell about it from the rooftops. But the lawsuit frowned on such free speech, threatening to use it against me in court if I so dared. And so I kept silent.

As I fretted and established my website, I started to wonder where I would put such information once I was free to do so. Would my personal blog still be a suitable venue? Or would my new website and blog be better? Should I create a brain injury page on my website? I still do not have answers to those questions. I’m still adjusting to the idea of not being watched and having the freedom to write whatever I want wherever I want. But today I heard something on the radio, and I had to write about it.

CFRB briefly interviewed a man hand-cycling across Canada — he’s currently in the Golden Horseshoe on his way east with three other hand-cyclers — to raise awareness of a breakthrough in nerve regeneration, which most people would think of as being useful for spinal cord injuries only. However, he mentioned that it could have ramifications for MS, Alzheimer’s, and brain injuries. The latter perked up my attention. It’s not that I’m not interested in spinal cord research, I am, for anything that can fix neurons in the spinal cord can have ramifications for brains too. But it’s the first time I’ve heard someone mention the brain in the same breath as the spinal cord. People pay more attention to spinal cord injuries than to brain injuries; I suspect because the former are visible and the latter are not, unless the injury is in the moderate to severe category, like for example that boy who had a rock chucked at the car he was riding in and was hit in the head with it. Anyway, the way he spoke about this research sounded like something out of a sci fi novel.

I had to surf to the wheeltowalkcanada.org website to learn what this exciting Canadian research was about, and up popped Patrick McKenna, of Traders and Red Green fame. (Pretty nifty what they can do with videos on websites now.) He said “Hi!’ and then told me that if I wanted to learn more about the research to click on him. So I did. I watched the video and went, “Wow!”

First off, Dad has talked to me often about the wonders of the intestinal tract, how it does more than just digest, giving me the impression that we’re only just learning its power within the body. And then here is Dr. Michel Rathbone of McMaster University talking about using a rat’s instestinal cells (enteric glia) to regrow its spinal cord. Of course, the big thing about that is there would be no tissue rejection. And second, Dr. Rathbone talked about guanosine, inferring it can regrow the insulation so important to neuronal communication. Insulation is what makes neurons communicate quickly and effectively with each other; insulation is the white sheath covering some neurons’ axons; insulation is what gives those neurons the moniker of “white matter.”

Somewhere on television recently, I saw that the reason that MRIs generally do not show evidence of concussions is that they pick up only gray matter, not white matter. When they created new scanning techniques to show white matter, they discovered breakages in the communication networks or white matter sections, proving scientifically that the brain is injured in concussions (that’s code for doctors can see the actual damage as opposed to just the consequences of the damage, which many prefer to dismiss). Seeing that, I went that’s exactly how I feel — it’s like there’s a short circuit that connects briefly then disconnects, just like shorts in electrical wiring or, to put it another way, white matter going offline then briefly flickering to life before going offline again.

And so as I watched the lead researcher Dr. Rathbone talk about using guanosine to regrow the insulation, I thought this is brain injury territory; it’s the first I’ve heard of medicine actually having an actual effect on treating brain injuries instead of simply compensating for them. Exciting stuff.

The men raising awareness and funds for this research state that it will take just 30 cents per Canadian to make it possible for the injured to walk again in 5 years. Five years! This is a charity worth supporting!!!

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  • Amy

    I came across your blog while doing research for our website/blog on TBI and SCI. I wanted to thank you for writing about your TBI, and invite you to check out or website, any comments or suggestions are always appreciated!

  • Amy

    I came across your blog while doing research for our website/blog on TBI and SCI. I wanted to thank you for writing about your TBI, and invite you to check out or website, any comments or suggestions are always appreciated!

  • Shireen

    I’m glad you found this post. My speech therapist used to tell me over and over that I had to tell people I had a TBI so that the general public would become aware, that we needed to be advocates. I found this difficult as some wanted me to shut up about it and, of course, there’s the whole acceptance issue.

    I found the best community support to be on the web, and I like your site’s clean design — makes it much easier to navigate and understand than other sites. I’ll browse through it as I can. Thanks for your comment!

  • Amy

    I agree the internet can be so helpful to connect survivors with resources and other survivors, as well as help increase awareness. Thanks for the feedback on the site!

  • Amy

    I agree the internet can be so helpful to connect survivors with resources and other survivors, as well as help increase awareness. Thanks for the feedback on the site!

  • Thank you so much for your article on our website and our cause. I am always checking the web to see who is noticing. Keep watching. Send me an email and I will keep you informed as to what is happening with Dr. Rathbone’s research. There is hope. The athletes were told that they would not be able to do the Goldenhorseshoe Marathon by various individuals – they’ve done it for 10 years now. They were told that to go across Canada would be too hard on their bodies – they are almost there! So, don’t allow limits others set for you to be your borders – create your own!! Karen Filice, Fundraising Chair, Wheeltowalkcanada

  • Thank you so much for your article on our website and our cause. I am always checking the web to see who is noticing. Keep watching. Send me an email and I will keep you informed as to what is happening with Dr. Rathbone’s research. There is hope. The athletes were told that they would not be able to do the Goldenhorseshoe Marathon by various individuals – they’ve done it for 10 years now. They were told that to go across Canada would be too hard on their bodies – they are almost there! So, don’t allow limits others set for you to be your borders – create your own!! Karen Filice, Fundraising Chair, Wheeltowalkcanada

  • Shireen

    Karen, after being through the medical model of rehabilitation of cognitive deficits, I felt like I was in the dark ages. From the lack of awareness of the risk of closed head injury in a multi-car crash and the need for a quick diagnosis to neurologists who rely on reflexes for evidence of brain injury to rehab that talks about compensating instead of treatment, I found it frustrating and ineffective for long-term prospects. All my therapists were great cheerleaders and got me through those early months and years, but I would have preferred real treatment in lieu of accepting permanent damage. Even now, 8.5 years later I find it difficult to accept and live with. Reading your comment that “there is hope” is very encouraging! In the Olympic vernacular, I could use a coach like you!!! 🙂

    One of my goals is to write on brain injury and the treatment that made a difference in my life.

  • very insurance company, including your own, has trained claims adjustors and a bevy of attorneys to back them up. You’re only entitled to one personal injury settlement at the very end of your claim, meaning, so remember that you have just one chance for justice? If you realize later that you were more injured then what your doctors originally thought, your own insurance company may say, “Too bad, you’re on your own.”
    For nearly two decades, our brain injury law firm has been dedicated to serving people with traumatic brain injury claims in Southern California, especially in San Diego County. Our brain injury lawyers realize how necessary it is to get your insurance claim handled right the first time. We will professionally guide you through the personal injury claims process.

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