Monday, March 25, 2013

DMD - Cognitive Impact (Pt. II)

Thursday we meet with the intervention team at Matthews Elementary, so this seems like a timely follow up to my previous post skimming over some of the biological aspects of DMD's cognitive impacts with a discussion of observed academic issues and related case studies.

Prior to diving into a discussion of objective observations, though, I wanted to share some of our personal experience.


Friday, March 8, 2013

DMD - Cognitive Impact (Part I)

For the first six or eight weeks after Talen's diagnosis, my need to research the disease was consuming. I still have a 2GB dropbox full of articles I saved for later review, and I've only scratched the surface in porting those articles to the site I started putting together.

I read articles about the current understanding of the disease, and boy, did I read articles about treatment options. In my mind, there was something lurking somewhere in the corner of some forgotten study or trial that held the key to pulling my kid out of this mess (Spoiler: There isn't, or if there is I haven't found it yet).

What I didn't spend a lot of time on initially was the peripheral impact of the disease, which has received less attention in the past than the physical impact of DMD from a research perspective. I had some understanding that the affect existed from skimming through articles, but when I ran into some resistance to the idea that DMD had anything more than a physical effect in a discussion with Talen's school, I knew a more diligent investigation was warranted.