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Thread: MS Awareness: But you look so good!

  1. #1
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    MS Awareness: But you look so good!

    http://www.sun-herald.com/NewsArchiv...y=tp10ew17.htm

    04/04/06


    MS Awareness: But you look so good!


    ENGLEWOOD -- When organizer Jill Lovelace declared, "But you look so good," into the microphone at the Multiple Sclerosis Awareness Fair on Saturday, the crowd groaned.

    Almost every MS patient in the room at the Tringali Center in Englewood has heard the phrase several times. The frustration was palpable, as people declared, "So what am I supposed to look like, purple with three heads?" or "So what, don't you believe that I'm sick?"

    Since MS is often an invisible disability, events like the awareness fair are important to educate people about MS. The principal guest speaker, Teri Callendar, a physician's assistant with Negroski, Stein and Sutherland Neurology Associates of Sarasota, addressed the top 10 MS myths. They were:

    * But you look so good ... you can't have MS.

    Since most of the symptoms of MS are not apparent to the average observer, such as fatigue, depression, nerve pain, muscle spasms, vision problems, numbness and tingling, muscle pain and balance and bladder/bowel problems, MS is almost impossible to detect by simply looking at an MS patient. But because these symptoms are part and parcel of everyday life, the comments make it difficult to respond appropriately.

    * MS researchers aren't making any progress.

    More than $102 million is spent per year just on developing treatments for MS patients, plus additional millions are spent looking for causes and detection techniques. New medications are extremely effective in treating MS symptoms compared to just five years ago.

    * Natural MS treatments are safer than prescriptions.

    All treatments, natural or man-made, are chemicals and have an effect on the body. Some natural treatments can be toxic, as can man-made substances. Since virtually all treatments are processed by the liver, overtaxing the liver can have serious consequences. Either type of treatment should be carefully researched before use. Because MS is caused by an overactive immune system, any substance that "boosts" the immune system will make the symptoms worse. Bottom line: Make sure your doctor knows every substance you are taking or want to take. Take his advice seriously.

    * MS isn't painful.

    MS can be extremely painful. Fifty-five percent of MS patients have clinically significant pain, with almost all having chronic pain. Muscle spasms cause 80 percent of the pain, while the remainder have nerve pain based on where the MS lesions occur on the brain or spinal cord.

    * If you get pregnant, your baby will get MS.

    Wrong. Your child will have the same chance of getting MS as the general population (about 1-3 percent).

    * People with MS shouldn't work.

    At least 30 percent of MS patients work full-time 20 years after diagnosis. It is an independent decision. The Family and Medical Leave Act protects MS patients that need time off for treatment.

    * There is no treatment for MS.

    While there is no cure for MS, there are many treatments for symptoms that make it possible for MS patients to function in an almost normal manner.

    * Everyone with MS ends up in a wheelchair.

    Less than 25 percent of MS patients need a wheelchair, and most of them use a wheelchair to conserve energy as overwhelming fatigue is one of the most common symptoms.

    * MS is contagious.

    Wrong.

    * MS is fatal.

    Wrong. While MS is life-limiting, it is not life-threatening.

    During the conference, Dr. Matthew Debona with Gulf Coast Acupuncture of Englewood spoke about the role of acupuncture in MS treatment. In addition to relaxing the tension in the muscles and relieving spasms, Debona said the number one benefit of acupuncture to MS patients is stress management.

    A tai chi demonstration by Ed Hicks of Wah Lum Kung Fu of North Port involved several patients and caregivers. Tai chi movements proved to be possible for every level of disability, from wheelchairs to walkers to people able to stand. "Very relaxing, I feel alive," said one participant.

    Mike and Betty Donovan and their service dog, Ruba, were a big hit. Ruba was put through her paces learned from training at Canine Companions for Independence.

    Canine Companions provides trained service dogs free of charge to people needing help due to disabilities. A two-week training session with the dog is required of the new owners (again at no charge). The Donovans showed videos of the training program and the facility outside of Orlando. According to Betty Donovan, "Ruba has given me my life back. I couldn't even leave the house before I got her. Now, I couldn't live without her."

    Dave Mowry of Special Touch Massage Therapy provided massage sessions throughout the entire fair. As a means of relaxation and pain relief, it proved extremely popular. Dave provides at-home massage therapy for anyone in an area ranging from Venice to Punta Gorda.

    Jill Lovelace facilitates an MS support group for patients, caregivers, friends and medical professionals the second Saturday of every month at the Tringali Center, Unit 2. The session runs from 11 a.m. to 1 p.m. with lunch provided. She can be contacted by phone at (941) 474-7616 or e-mail at justjills04@verizon.net.

    To learn more about MS, contact:

    * National MS Society, 800-FIGHT MS, nationalmssociety.org.

    * Multiple Sclerosis Association of America, (856) 488-4500, msaa.com.

    * Multiple Sclerosis Foundation, 888-MSFOCUS, msfacts.org.

    By KITTY BLANCO

  2. #2
    The National Multiple Sclerosis Society has free pamphlets, including "But You Look So Good" for patients and family members. They also provide an info packet of brochures for newly diagnosed MSers. Many chapters have lending libraries.

    Good info, Leif. Thanks.

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