This week is going to be one of those times when I have to put on 'the brave face' and do what I "should" do. (NOT my favorite thing)
When I found out that Josh has Ds, I had no idea what that meant. At 20 years old, I had never heard of it. I had a lot to learn. One of the scariest things that I've had to wrap my head around was the link between Alzheimer's and Down syndrome.
"Of course!" I said. Not only am I convinced that Gail has the desire and drive to do major things that will help lots of people and therefore I jump at the opportunity to be involved; I also know that this is a fear I need to face because it won't just go away if I ignore it (yep, that's my usual MO).
So this post is for any other parent/caregiver who shares my fears and need for information. There will be lots of opportunities to listen, talk, and ask the questions we need to ask this week, with some really interesting experts on the subject.
The week starts off with a 2-hour conversation with a leading researcher in the field. Dr. Huntington Potter is Professor of Neurology and Director of Alzheimer’s Disease Research in the Department of Neurology and the Linda Crnic Center for Down Syndrome at the University of Colorado, Denver. If you're like me and have questions about the link, or the lack of research funding, or anything else on this topic, this is a great opportunity. He'll be live from 11am-1pm tomorrow. You can call in, post comments/questions on the site, or send them to me. The broadcast will also be recorded in case you can't listen live. Visit Gail's Blog Talk Radio site for access to this rare and important opportunity.
Tuesday at 1pm the conversation continues with an hour of 'chatting' on Twitter. Guests scheduled to appear include Michelle Sie Whitten, the Co-Founder and Executive Director of the Global Down Syndrome Foundation, and Dr. Dennis McGuire from the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago. The GDSF recently announced a grant with which Dr. McGuire will "help establish a world-class medical care and research center for adults with Down syndrome under the umbrella of the Linda Crnic Institute for Down Syndrome" in Denver. Search for and use the hashtag #CPHC to be part of the conversation.
Wednesday between 10am and 12pm (ET) Gail will get to talk to a different kind of 'expert.' Someone who is going through the experience we all fear right now. Patty McFeeley is the eldest sister and caregiver for Gretchen Josephson who not only happens to be the author of "Bus Girl," but also has Ds and was diagnosed in December of 2009 with moderate to severe dementia. Patty will talk about life with her sister, before and after that diagnosis.
And Thursday between 12 and 2pm (ET) Gail will talk to Banker White, the director of a powerful documentary about the "changes Alzheimer's disease brings."
As you can see, Gail (as usual) is really coming at this from a variety of perspectives and providing a wealth of information and plenty of opportunities for me to "face my fear." As I prepare, emotionally and specifically, to participate in all the events planned, I hope to hear from some of my other cyber-friends that I've met by sharing my stories about Josh. I'll be writing about and sharing my experiences with the material, and I hope some of the other parents I've met will too. We're all looking down a similar road when it comes to this important issue, and we can support each other along the way.