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MS WITH ISSUE #4 | 2015 LIVING WELL A PUBLICATION FOR PATIENTS WITH MULTIPLE SCLEROSIS FALL PREVENTION UPCOMING EVENTS OCT 07 Dinner Talk sponsored by Genzyme 6:30PM at Kahill’s Restaurant, South Sioux City - Speaker will be Meghan Kinnetz, NP. Please RSVP by calling 866-703-6293 or email genzymepatientrsvp@ahmdirect.com. 10 MS Support Group Meeting 20 Dinner Talk sponsored by Teva 10 Dinner Talk sponsored by EMD Serono NOV 2015 CNOS Holiday Decoration and Wreath Fundraiser OCT MS 101 Healthcare is a complex world, especially for those who have otherwise been in good health, and MS can be a complicated disease. MS 101, breaks down key concepts in MS care, to help you and your doctor communicate on the same level and improve your care! Cooler weather, children going back to school and falling leaves are part of the Fall season. However, they also herald snow and icy conditions, which may increase the risk of falls. Falls can not only be embarrassing, but in some cases can result in serious injury such as a concussion or broken bone. Many individuals with multiple sclerosis have symptoms such as loss of sensation, weakness, imbalance, spasticity, muscle fatigue and/or vertigo which worsen walking stability. Some medications may help to minimize MS symptoms such as spasticity or pain, which may contribute to falls. Also be aware that dizziness is a common side effect of many commonly used medications. Physical therapy aimed at gait and balance training, and instruction on a safe home exercise program can dramatically improve stability and reduce fall risk. Yoga, Tai MS 101 Chi and many other exercise UPCOMING EVENTS programs can also improve balance. Use of assistive devices RESOURCES (such as a brace, cane or walker) SPOTLIGHT can also help to improve walking. If you have had recent falls or MS TREATMENT AND have a fear of falling, talk to your RESEARCH UPDATES health care provider about ways CNOS CLINIC UPDATES to minimize your fall risk! Q AND A CONTENTS 10AM at CNOS in Dakota Dunes (please use side entrance) - Join us for an informal meeting designed for MS patients and their significant others! Group meets every other month on the second Saturday. Light refreshments provided. No support group in December due to holidays. OCT 4:30PM at Red Steakhouse, One East Main St., Vermillion, SD - Speaker will be Dr. Hartman. NOV 6PM at Bev’s on the River, Sioux City - Speaker will be Dr. Hartman. CNOS, Dakota Dunes Lobby - This annual event helps raise funds for the MS Exercise Program at the Norm Waitt Sr. YMCA. Bidding is open to everyone. APR 2016 Young & Newly Diagnosed (Y&N) MS Educational Event Details TBD - A patient’s first year after a MS diagnosis can be challenging. We welcome these patients to attend this twice yearly meeting. Friends and family are also welcome. Appetizers provided. ONGOING MS Exercise Class Norm Waitt Sr. YMCA in South Sioux City, NE PREVENTION | DIAGNOSIS | TRE ATMENT Bones, Joints, Muscles, N er ves, Brain IMPROVING HEALTH 605.217.2667 cnos.net RESOURCES SPOTLIGHT The International Progressive MS Alliance is a collaborative effort to end progressive MS. It’s priorities include a better understanding of progressive MS, helping to develop and test potential therapies, and to improve symptom management of progressive MS. Learn more about their efforts and research at: progressivemsalliance.org. MS TREATMENT AND RESEARCH UPDATES The brain infection Progressive Multifocal Leukoencephalopathy (PML) caused by the JC Virus has been found in a small number of MS patients treated with Tecfidera who have low numbers of lymphocytes (a type of white blood cell) and in patients on Gilenya. PML is a known possible risk with Tysabri treatment. A recent French study in Progressive MS patients suggests that high-dose supplementation with Biotin (Vitamin B7) may help some progressive MS patients to stabilize or even improve. Reassuringly, no significant side effects have been noted with use of Biotin supplements. Biotin is believed to benefit MS patients by antioxidant effects on the brain. Further research is needed to verify the possible benefit and ideal dose of Biotin. CNOS CLINIC UPDATES THE CNOS CLINIC FAMILY IS EXPANDING! Dr. Hartman will be having a baby in December. Please rest assured that if you have any concerns during her maternity leave, you should call Dr. Hartman’s nurse Becky. Doctors; Andrews, Case, Grudem and He will be available to evaluate any MSrelated or other neurology issues you may have. About 50% of individuals have had exposure to the JC Virus and could be at risk if taking Tysabri, Tecfidera or Gilenya. The overall risk of PML in MS patients on these medications remains low (less than 1:1000 or 0.1%). Talk to your Neurologist about your risk and keep up with recommended laboratory monitoring while on MS medications. Q AND A Question: I am having difficulty affording my MS medications, can you help? Answer: Yes! We can help. Call and talk to your Neurologist’s nurse (605-217-2667). We often have samples to make sure you don’t run out of medications, plus we can trouble shoot insurance issues and get you in touch with financial assistance programs. All of the MS pharmaceutical companies have financial assistance available, and many MS patients do not have any out of pocket expense due to assistance programs. Call us if you are having problems with affording your medication or navigating the complicated insurance and specialty pharmacy maze. We want to help you stay on medication to keep MS under control! STAY CONNECTED To access LIVING WELL WITH MS online or for additional information: “Like” CNOS on Facebook or visit cnos.net PREVENTION | DIAGNOSIS | TRE ATMENT Bones, Joints, Muscles, N er ves, Brain IMPROVING HEALTH 605.217.2667 cnos.net