March Is Brain Injury Awareness Month
So I’m still going through my contemplative quiet time—yeah, I know, ME quiet? Something must be out of sync in the universe. I have about three volume settings: not-so loud, let-me-make-sure-everybody-noticed-me loud, and yeah-just-try-to-ignore-me-I-dare-you loud. This is particularly true if I’ve got a bee in my bonnet about something—and clearly I’ve got a swarm going about CP, fitness, access to care, etc. Actually, truth be told I’m spending this time using my mad librarian skills to build a bibliography. It’s a list of studies and resources on CP research (particularly CP and exercise), disability and obesity, barriers to fitness/patient treatment compliance, and muscle growth in folks with brain injuries. So I promise I haven’t abandoned this blog or this project. And of course, my personal fitness quest continues, as do the Botox treatments—I feel great for the most part, I’ve got zero acute pain 99% of the time. Some days I feel so grateful it hurts—and I spontaneously burst into tears.
Just wanted to make everyone aware that it’s National Brain Injury Awareness Month and to direct folks to a great resource sponsored by our local PBS station in the DC area, WETA. Check out: http://www.brainline.org . It’s focused mostly on traumatic brain injuries—like the gunshot wound suffered by Rep. Gifford, those suffered by returning by Iraq and Afghanistan vets, or most recently the cumulative injury to the brain resulting from repeated concussions. CP is categorized as a neuro-developmental disorder and not exactly a traumatic brain injury, but many of the struggles/symptoms/effects are the same. So I thought I’d give a shout out to this great site.
Although it’s one of my axes to grind that relatively little research is done on CP specifically, I like to think any work on understanding and repairing brain damage helps us all. Sometimes it makes me a little jealous* to think about the relatively large amount of money spent on other conditions—stroke, Parkinsons, MS, etc—and how relatively quickly drugs and treatments are approved for those populations. And don’t get me started on wonky FDA approval processes–seriously you want to approve Botox for *upper* limbs in stroke patients only?!! Still, you hope that there’s a trickle-down effect and that work on one disorder can lead to treatments for others. I mean, let’s be honest that’s what the pharma companies are hoping!
* So on my walk to and from the grocery store, I reconsidered my original use of the word “angry” here and decided it was poor word choice. Several of the diseases I cite are, in all honesty, much more serious than CP. In fact, they are life-threatening in a way most–but not all–forms of CP are not. So I think it’s an unfair comparison to make. I think also that the anger is directed more at some of the factors that influence how much money is spent on research and drug development for particular conditions: namely the size and strength of the political lobby and the relative profitability of marketing drugs to those populations. These are the things that make me hot under the collar. . .because as far as I can tell, CP has next to no clout in this arena. We don’t have a walk, or a huge fundraising campaign or a ribbon. . .and there are a lot of us! Anyway, that’s really my beef and I wanted to be clear about that.