Today, it was having two great guests from the Global Down Syndrome Foundation talk to thousands of people about the link between Alzheimer's Disease and Down syndrome.
It was also a head spinning, fast paced, information packed hour!
Definitely not easy to keep up with for anyone who doesn't use Twitter on a regular basis (and still somewhat daunting for those of us who use it occasionally).
The good news is that there are tools - and people like me who love to crunch data - that can make it easy to catch up on what happened - after the dust settles.
Today's BIG THANKS goes to Dr. Dennis McGuire and Michelle Sie Whitten from GDSF! This week's topic on the link between Alzheimer's Disease and Down syndrome is something that is very important to me and I'm grateful to have access to such experts!
Michelle Sie Whitten is part of the family who established the GDSF and the Crnic Institute. She is also the mother of a ten year old who has Down syndrome.
- Up to 50% of people who have Down syndrome will get early onset Alzheimer's (late 30's/ 40's)
- 2/3 of people who have Down syndrome and experience a loss of function do not have Alzheimer's but rather a reversible condition treatable by addressing things like sleep apnea and lifestyle stressors
- IQ level does not seem to have any impact on whether or not a person who has Ds will develop Alzheimer's
- When looking for "indicators" of early onset Alheimer's, short-term memory changes can be important but you still have to rule out other issues
- GDSF has put together a very helpful map of medical centers that specialize in the treatment of patients who have Down syndrome!
Be Still My Advocate's Heart
And SO MUCH More!
For those who want to catch up on all the action, I put together a modified transcript that shows each Tweet in the conversation and is in a form that's easier to follow (hopefully). I tried to link each question with the string of responses it got. It's a twelve page document - so be warned - but well worth the read.
Today's chat had 1,935,967 impressions in an hour!
That's a huge number of times that #CHPC was sent across the Twittersphere and a huge audience for our cause, and it's only Tuesday!
The conversation continues tomorrow at 10:00 am with an interview you won't want to miss! Patty McFeeley, will be Gail's guest on BlogTalk Radio . She is the sister of Gretchen Josephson, who is the 59 year-old author of "Bus Girl", and an adult who happens to have dual diagnoses of Down syndrome, and Alzheimer's Disease.
You can also catch up on all the events, follow-up discussions, and resources at the Down Syndrome community page on Demand Design.
It's been a great week so far and I'm looking forward to the rest!