Wednesday, May 13, 2009

Telling others what HD is all about - Awareness

I remember listening to a "how to improve communications" CD, and one of the tricks discussed was to open the brain gates of the listener by placing mental images in their mind, painting the context for the question you want to ask or the point you want to make.

We can be more effective in getting help for ourselves if we first insure that those we are going to approach have a clear and accurate picture of HD. This would seem to be the first step toward improving services for the HD community.

We have many marvelous heroes who have stepped forward to share their HD experiences with their friends and their community and to make clear the devastating impact it has on both the patient and the HD family. This aspect of personal advocacy is more important than you might first believe. It lays the foundation on which other types of advocacy can build.

Also, it’s nice that the entertainment industry finally discovered HD and is starting to write HD into their story lines. Call me a cynic, but this only seems to be mildly useful because it doesn’t paint that accurate mental image of HD that we need – or at least I haven’t yet seen a TV show that provides insight into life with HD. But what it does seem to do is encourage local cable stations to provide opportunities for HD families to discuss their experiences through hosted TV shows. An alternate media opportunity is the collection of personal video clips that HD families have put together and posted on http://www.youtube.com. Search on Huntington disease and you’ll find around 300 clips. Pick a few that tell the story you want to share and forward those to your friends and neighbors. You might even consider putting together your own. Several of those I’ve seen are very impressive and it seems like a good idea to forward a couple to your local radio or TV station when you ask them to add an interview with an HD family to their schedule.

Another media project in development, that if successful, will be a big win for the HD community is a project calling itself the Huntington’s Disease Documentary Project. You can read more about it at the project Web site at http://huntingtonsdiseasedocumentary.com/. It sounds promising and I hope they will share some video clips. So far the video teaser that they have doesn’t work in my version of Internet Explorer, but does load in Firefox – just be patient since it takes awhile to download before it starts. Today I watched an hour long Alzheimer’s documentary on TV that kept me misty eyed for nearly the entire show. It touched me emotionally and now when someone talks to me about Alzheimer’s, snippets of that documentary will flash back and allow that person to reach me at a deeper and more personal level.

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