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Post by Bekah on Oct 9, 2009 6:05:47 GMT -6
Let me know what you think!  |
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Post by kmac3879 on Oct 9, 2009 17:27:57 GMT -6
Hi Bekah, I don't have dystonia, but my daughter was, Was concerned about the hands and feet freezing, has you doctor checked you for Raynauds syndrome> I have it and my fingers and feet get cold and I lose the blood flow to my digits and it can get scary but easily treated. Make them listen to you! ;D
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Post by hopeful on Oct 10, 2009 16:48:43 GMT -6
I think the magazine is great! I have torsion dystonia and my hands freeze. But my feet are the worst especially my left foot. It's froze and purple most of the time. I have been walking on the side of my left foot for 2 months maybe thats why that one is so bad. Hey any ideas were I can get a shoe with the soul on the side? Will this magazine be published or is it just online? Can't wait to read more. Great Job! Bekah
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Post by mamawolf on Oct 10, 2009 21:57:56 GMT -6
 Great job! I'm new to dystonia (well, to knowing I have it) and really enjoyed the personal aspect to the articles. Also, since sitting for long periods is painful, I appreciated that they were informative and interesting but weren't too long. I'll be back to read future editions, and thank you for your efforts! Oh, and my jaw about hit the desk when I saw the title "why is my hand cold?". For years I've put one hand on each side of my hubby's face and said, why is one of my hands cold and the other warm? Glad to know it's not just me!
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Post by Liz on Oct 14, 2009 15:57:30 GMT -6
Great Job!! Love it. Liz
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Post by Bekah on Oct 16, 2009 12:59:08 GMT -6
YES! I hope DystoLiving will eventually be available through Snail Mail. However, this can only happen through donations or subscriptions. Since we need to keep it free for all Dystoniacs, for the moment it remains online! Hopeful, you might be interested in asking your doctor to refer you to an occupational therapist, who can help you acquire proper equipment-- including custom shoes. Kmac, I actually thought I had Raynauds a few years back, but it looks like I don't. Sometimes symptoms overlap in crazy ways. lol I'm so glad to hear the magazine has a personal feel! That's exactly what we wanted. Take care and be well... Bekah |
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Post by promogurl on Oct 18, 2009 9:03:21 GMT -6
I am so excited about this little magazine! Bekah, you are so awesome for publishing it and making it happen.
kmac3879 Thanks for the heads up about Raynaud's syndrome. I am the author of the 'cold hands and feet' article... and I have not found any answer for that symptom.. I will make sure to ask my neuro about that next visit.
Hope to continue to contribute and see this Dystonia living grow!
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Post by stace on Oct 20, 2009 17:35:07 GMT -6
GREAT JOB!!!
Hello, My name is Stace. I have had cervical and Oromandibular Dystonia for 9 yrs.. I've heard comments from Dr.s, Nurses, assistants, pharmisists and the local public broadcasting station. I used to work in radio. I can still write a PSA that would get attention, but I've been brushed off, lied to, told to wait another year, all I want is to see a replay of "Twisted" and offer a PSA (60 seconds) about dystonia. I get the word out any way I can think of . I don't have to worry about things like "UNDERMEDICATING" on purpose.. the lighting in public places trigger my muscles and off they go, on their own. Wasn't a certain celeb with parkinsons accused of foregoing his meds for a vote of sympathy?.. How dare those folks. I guess I am angry, but I do all I can to get the word out there so I feel that buys me a moment to rant, and the right to make a statement. Am I wrong?.. Thanks.. Stace
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