ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Dance for a 'fibro' cure
Thursday 9 June 2011
MANASSA — “There are times I can’t shower just because of the pain of the water. Other times it goes away. There is the constant aching like you have the flu.”
Centauri secretary Terri Jo Rogers of Manassa suffers from the long misunderstood fibromyalgia, a syndrome only recognized by the American Medical Association within the last 15 years.
Her daughter Alisha Smith, originally from Manassa, commutes to help her mom with vacuuming and other chores from Gunnison where she lives with her husband Clint, an electric lineman, and their 2-year old son Ethan.
“You just get it. One day you start hurting or you feel like you have a terrible sunburn and it hurts to be touched. The pain cycles. I feel like I’ve been sunburned, even blistered. Then other days it is just suffering,” said Teri Jo.
“I can tell when she is pain. It is on her face,” Alisha looks caringly at her mother sitting beside her. All of this aching is why Alisha set course for a dancing fundraiser over a year ago.
“Everything is set. But we are hoping to get water donated,” Alisha says. The dance instruction hopes to raise $1,000 for the National Fibromyalgia Association. The water will replenish the dance learners as they expend their energy learning basic dance steps to the ever-popular Hip Hop moves.
“I liked them because their money goes to research first and then they also have a part of their earnings go to help people pay for their medications. Their organization also helps with disabilities of those who are struggling every day because they have fibromyalgia and they can’t afford medications. That’s mainly why I picked them.”
There is no cure yet. This fundraiser hopes to add to the resources for the discovery of a cure.
Alisha is honoring her mother’s struggle with fibromyalgia by offering this dance fundraiser set for June 2nd, 3rd, and 4th at the Historic Opera House in Manassa. Two workshops are scheduled: The first, for beginners, is 6 p.m. to 7 p.m. and the second, for “Dancing with the Stars” want-to-be’s, is 7 p.m. to 8 p.m. These workshops are repeated every night from June 2nd through June 4th.
Those 16 years old and older who come out will be treated to door prizes, dance aerobics, and a lot of laughter and silliness, says Teri Jo. T-shirts run $35 and registration is $25 per person. “Plan on having a really good time!”
Besides Alisha being a dancer who studied at Utah Valley University in Orem, her vision for the event is to bring awareness to the “exhaustion” caused by constant pain of fibromyalgia.
“The moving and exhaustion from dancing will mirror some of the pain that they endure,” she said.
Teri contracted pneumonia about seven years ago; then she developed mononucleosis. Even her legs hurt with Restless Leg Syndrome. After finding some of the 18 trigger points for FM on Teri’s muscle-skeletal areas, her doctor, Brian Jackson, began researching, studying and finding medications to help reduce the pain of fibromyalgia.
“He has been a big help.”
“Those with FM endure restless leg syndrome, irritable bowel syndrome, fibro fog or confusion, fatigue, super insomnia. Plus not all the trigger points have to hurt for it to be fibromyalgia,” Alicia said.
Teri Jo added, “With fibromyalgia, you just suffer; there is no one prescription. Some with this diagnosis sleep with oxygen and that really helps, others find sleeping medications help; the pain relievers like Lyrica or Cymbalta are regulated by your physician.”
Doctors individualize the care and use trial-and-error as to what works for each person. The care plan is not “fits one, fits all.”
“There is a need for research to get answers,” said Alisha.
Yet, when visiting doctors, patients might still hear that it is just in their mind and it doesn’t exist.
Both Teri Jo and Alisha are thankful for Dr. Jackson. “The medical association has finally acknowledged that it is real. Dr. Jackson has done a lot of research . . . Life would be worse without him.”
“It [fibromyalgia] can be brought on by accidents, pregnancies, traumatic experiences in your life. Brian is just great and he gets you to a level that you can function. He works, he studies, and he researches until he gets you to a place that you can function.”
Alisha said that the latest research is around pain medications and developing medications that won’t collapse internal organs.
Alisha also earned a certificate for medical transcription and currently provides online medical transcription to medical institutions in Gunnison.
“We’re hoping that people will come to have a good time. It is not as hard as people think it is going to be. I love dancing. It is so much fun. It is a stress reliever to me. Come have fun. Be there and learn the dance and we’ll all look silly together and have fun together. Most women don’t get out and learn; you might learn a line dance - something like hip hop is fun. . . . Just come with your girlfriends and have fun!”
Alisha commented that the shows “Dancing with the Stars” and “So You Think You Can Dance” get viewers to dance. “I do not do those exercises in gym class nor do I run but I love dancing! I get the exercise I need but without exercise. I love Manassa, the Valley and I love and miss the people; this dance fundraiser will let us have a good time together.”
Alisha studied with Anna Christensen who taught her ballet when she was 4 years old.
Teri Jo also learned Flamenco and ballet from the same teacher.
Both Teri Jo and Alisha were coach and assistant coach for the Centauri dance team. Alisha also learned from Amber Vance: “She is the one who really taught me diversity in dance.”
“We’re open to any donations,” said Alisha who can be contacted at 719-580-3858. For more giving alternatives, e-mail her at email@example.com or log on to our automatic donation www.firstgiving.com - search Alisha’s Dance Away FM and have until August 1st to donate online at the website.
“Come and expect to laugh and have fun and learn a dance. . . All this fun is happening while we’re giving to a worthwhile cause.”
The above originally appeared here.
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