Re: Newspaper interview
Kelly-Thank you! Wonderful story, and I have "voiced my opinion" to the newspaper. Mary
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Way to go Kelly. It was an excellent article and I love your BEBRF sweatshirt.
You done good!Shirley
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Excellent Article! I love your sweatshirt. Thanks for sending.
Debbie in Ontario
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Very well done, Kelly. Thanks for sending it. You are doing a lot for the cause and I look for further happenings from Dallas to get BEB in the "limelight."Sally in North Idaho, wtill wishing for a support group here.
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Kelly Good story thanks for sending it.
Nice to see you
Give your girls a hug.I miss not having any little girls around Colleen in IL
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Kelly,
Way to go. I nice to have a face to put a name with. Take care -
Denise
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"Hats off to you", Kelly. I was so surprised when I got my Sat. morning paper and saw that you even made the front page. Great article! When you told your story - you told our stories, too.You said that it came out in 2 newspapers. What paper carried the other article besides "Plano Star Courier"? Carolyn Smith, Plano, Tx.
Re: Newspaper interview
The Allen American ran it on the front page as well. They didn't have room for the second picture of Cory and I that was in the Plano paper (not on the website). My husband is telling everyone his wife is a "covergirl"! By the way, the next meeting is June 23 (Sun) from 2-4 at Presby Dallas. I had to hurry and reserve the room in a span of a couple of hours to meet the newsletter deadline so I just picked a date and went with it. (The girls and I had been sick for 2 weeks with respiratory infections, Cory got an ear infection, and Morgan ended up with pneumonia) Hope that date works for you.Kelly
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Kelly that was a great interview. Sorry to her your family has been sick, hope everyone recovers quickly. It'll be interesting to see if more blefros come forward to your meetings after the publicity. Let us hear again after your next support group. Good luck & God bless.
Joann in Arkansas
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"Hats off to you", Kelly. I was so surprised when I got my Sat. morning paper and saw that you even made the front page. Great article! When you told your story - you told our stories, too.You said that it came out in 2 newspapers. What paper carried the other article besides "Plano Star Courier"? Carolyn Smith, Plano, Tx.
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You do a great job of educating others KellyThanks!!!!! Catherine
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Great article, Kelly. I forwarded it to my niece, whom I was talking to today. I had her write down the word Dystonia, so she could research it on her computer. She is 39, and is having some problems that the doctor doesn't understand. One of her symptoms is her head jerks to one side sometimes.(Would that be Dystonia or Meige?) She has a lot of pain all over her body. I thought perhaps information on dystonias and beb might give her some insight into what may be wrong. She also has hand tremors, swelling in her foot, cramps in her feet and legs, etc. Is that indicative of any of the disorders of anyone else on the bb?
Evelyn, who is now having twitching in her eye.
Re: Newspaper interview/Evelyn
Your niece's head jerks to one side could be indicative of cervical torticollis - a dystonia, Evelyn. Hope she gets an assessment and help soon. Best wishesJune in Toronto (beb/meige)
Re: Newspaper interview/Evelyn
Thanks, June. She has really been having a rough time. She has been in the hospital seven times recently and is now going to a pain clinic. She has taken several medications for her illnesses, and that makes me wonder if the meds are causing some of her problems. I will pass on what you told me, so she can ask her dpctprs about it. Her regular dr. is stumped, and just shrugs his shoulders. She will see a neurologist next month. They thought maybe she has fibromyalgia or maybe MS.
Evelyn, who just went outside to look at the blooming flowers, and nearly froze...it's cold with some wind.
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Go Kelly! Good Job. Very nice article.
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Kelly - loved the article - congratulations !Lyn
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Great job, Kelly. I got the link through a Dystonia mailout. You are such a pretty young gal as well all decked out with the bebrf sweatshirt - nice to see what you look like. I hope you and the girls are feeling better asap. Best wishesJune in Toronto (beb/meige)
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Kelly, excellent article. Thanks for helping to keep our disorder infront of people so that they will come to be more aware of it....Alan
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Thank you! You have done a good service for us all. I too have written to them thanking them for printing the article and thus informing the public and therefore making them more understanding, and also hopefully increasing awareness so that some other unfortunates can get the diagnosis and support they need. The more of us that write in, even from another country/state the more they will understand that there is a level of need and interest. And perhaps there will be a follow up, or another paper will take up the story.....
Good on yer, Gal!
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Congratulations Kelly!!! That was an excellent article/interview. You look great! It really is nice to put faces to the people that we read every day. It makes it more personal. I also wrote a "letter to the editor" to our newpaper but am not smart enough to link it to the BB so I have sent copy to Shirley and asked her to post for me. So be looking for it!! Joyce in NC who is going to a new doctor today for Botox injections, hope he can help me. He is a neurologist.
Re: Good luck, Joyce
Wishing you success and relief with this new doctor. You've been through too much lately ... it's time for a happy change!Sally in North Idaho who had a three-hour nap after getting up this morning. DST just does not agree with my body; I'd rather hibernate in the winter.
Re: The more of us who write in ...
I think you're right there, Pippa, that the more of us who write in after articles such as the one about Kelly, the more the general public will become aware of our situation and needs. I, too, wrote to the newspaper.Sally in North Idaho where it's chilly and windy today.
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Thank all of you for your kind words and support-I knew I would find it here! Life is funny sometimes. You've always seen yourself heading in one direction - homecoming queen, most beautiful, honor grad, CPA by age 22...and in the blink of an eye it changes. Many years ago I took a spiritual gifts test in Sunday School and the gift of "mercy" was way down on my list. I took that same test a year ago and it was number one. When God closes one door, he opens another - it just took me a while to step thru it.
KellyFor you Dallasites, the next meeting is Sun., June 23 from 2-4 at Presby Dallas. This will be in the newsletter and is on the website. Hope to see all of you there!
Re: Newspaper interview?Kelly
kelly, I got some sort of advertisement up on my screen when I printed your article< is that supposed to happen? I closed it.
Re: Newspaper interview/Kelly
Wonderful kelly! I hope this helps; it seems pretty all inclusive as far as the dystonias also.
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