Dystonia Living From the Laptop ==================================== Extra! In Response to The Current Situation ==================================== October 22, 2009
Not too long ago a brave young lady invited the local media into her home, telling her story to the world. According to reports, Desiree Jennings was diagnosed with Dystonia by doctors at Johns Hopkins after an illness supposedly triggered by the flu shot. It is reported that she sought the advice of psychologists and other medical professionals before being told that she had Dystonia. (See video below.) Ms. Jennings' revelation has leant publicity to Dystonia, at the same time fanning the flames of fright for those who harbor doubts about mass vaccinations. However, there have also been some rather repugnant responses, a tart variety, from derisive video mixes, to public accusations of insanity. How should the Dystonia community respond to this? How should the individual with Dystonia respond? Unfortunately, those to whom many of us look for guidance, support advocacy and public relations seem to have decided to keep a low profile until this blows over. Perhaps, there was no formal decision to refrain from comment. Honestly, there are many things keeping everyone busy these days. I admit disappointment, but sincerely respect their efforts. Although I am a card-carrying fan of those who avoid gossip and are measured in interaction, it is a wise thing to act while the attention of the world is focused on you. I hope that those of you who have Dystonia see this as an opportunity outright-- not an embarrassment or annoyance. I don't recommend getting involved in the vaccine scare chatter. I wouldn't suggest you deal in the specifics of Ms. Jennings' diagnosis. Nevertheless, let me encourage you. Do Something. Say Something. Dystonia is a beast that must be slain. There will be no lone knight to take it down. We must band together and trudge through swamps, dark forests and up craggy mounts. We must secure the high ground and shine a light on this monster! Let's control this conversation. Take care and be well...
Rebekah Click here to visit the prime time Dystonia resource center.
Dystonia Living From the Laptop
While in the process of gathering articles and information for this first issue of Dystonia Living, I have met some personal challenges related to my Dystonia. As people dealing with this disorder we too often have to face the ignorance of those living with and/or around us -- something as simple as a chore can erupt into a negative situation. Sometimes the problem is much bigger, characterized by poisonous isolation, physical or verbal abuse. In this issue of Dystonia Living, we talk about mental health, exploring helpful tools like service animals. We enjoy a chat with a young Dystonia Advocate, Timothy Gillete Insogna and share the amusing observations of model, mother and Dystoniac, Jennifer McKnight. If you're at all interested in adventure travel or the outdoors, check out Wide World. Use the navigation bar above. So that's it this time. Let us know what you think. ... and when you get a minute, join us in bringing quality content and practical living tips to Dystoniacs world-wide.
Take care and be well...
Rebekah
Click here to visit the prime time Dystonia resource center.
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