You might think everyone associated with Parent Project MD in any way would be a parent. But I'm not, I'm a sibling, or a former sibling, since my brother Alan died of complications to DMD (pneumonia) about 45 years ago.
I'm interested in how the possibility of 'passing on' DMD affects us women who are, or could be, carriers of MD or similarly inherited disorders, and supporting that community.
Something else I'd love to contribute to is a much wider awareness of Cough Assist (MIE, mechanical insufflation/exsufflation). Pneumonia takes so many lives when it could be prevented in a lot of cases by using Cough Assist.
I have a doctoral degree in experimental psychology and did a two-year post-doc fellowship with the VA's Health Services R&D. That focused on implementing medical practices known to be effective, but not widely adopted. (See www.implementationscience.com which is the online, open access journal for researchers in that field.)
At present I teach psychology online for UNLV and keep working on getting my past resarch projects written up and submitted fo publication.
I'd enjoy hearing from anyone with similar interests as those mentioned above.
About my family:
My mom is now 89 (b. 1920) and I have the privilege of caring for her in our home. We are a happy troupe of 3 1/2: me, Michael my husband, Mom, and Davis the dog (an irrepresible Shih Tzu, my athletic "circus dog").
I figure Mom deserves all the spoiling I can offer, having cared for Alan so well.
Update: Mom passed away July 17, 2010 at 5:07 pm, here at home.
Name(s) of child(ren)/individual(s) with Duchenne:
Hi Jane Im so pleased you have my book and happy to be a member of the PPMD community. My husband Larry and I have established "The Fund For Pete's Sake" which funds research for PPMD. You might want to visit my web site and click on my blog "Survivor Mom". We have a lot in common, being veterans of this nasty war. I,d especially like it if you had any suggestions to offer to parents and friends of boys with DMD who suffer, as Pete did, from Social Isolation. Those responses will be the subject of my next blog. ANyhow, good to be in touch.