(HOVAK is Osagefor forinner inner strength, courage) (HOVAK is Osage strength, courage)

November 2014 Inside this issue:

MG Patient Support Group Meeting Planned Our last Oklahoma MGFA Chapter Patient Support Group meeting of the year will be held on Sunday, November 9th, 2:00 pm in Oklahoma City. Dr. Brent Beson, will be our guest speaker. Dr. Beson is the Medical Director of the Integris MDA Neuromuscular Center. Dr. Beson is a 1999 graduate of the University of Oklahoma Health Sciences Center, College of Medicine. He did his residency at Baylor College of Medicine in Houston, where he was elected Chief Neurology Resident from 2002-2003. He completed a Fellowship in Neuromuscular Disease and Clinical Neurophysiology at Washington University, St Louis. Our Oklahoma City Support Group meetings are held in the Central Oklahoma Cancer Conference Center, at SW 44th St and S Western Avenue, which is next door to Integris Southwest Medical Center. Do not enter the Cancer Conference Center at the front doors, rather enter through the garden area that is next to the right of the front doors. Look for our chapter’s red arrow signs pointing the way to our meetings. If in the event of snow or ice in the Tulsa or Oklahoma City area (i.e. dangerous road conditions) the meeting will be cancelled.

Americans with Disability Act Accommodation and Compliance Series: Employees with Myasthenia Gravis is designed to help employers determine effective accommodations and comply with the Americans with Disabilities Act (ADA). To learn what the ADA say’s about Myasthenia Gravis go to http://askjan.org/ media/MG.html , for MG and the Americans with Disabilities Act; Accommodating Employees with MG. Topics covered are: How prevalent is MG?; What is MG?;What are the symptoms o f MG?; Is MG a disability under the ADA?; Accommodating Employees with MG; Questions to Consider; Accommodation Ideas; Vision Impairment; Speech Impairment; Fine Motor Impairment; Gross Motor Impairment and Situations and Solutions. The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general definition of disability that each person must met. Therefore, some people with MG will have a disability under the ADA and some will not. http://askjan.org/media/MG.html

Those living with MG are invited to submit their personal MG stories about being diagnosed and their journey in living with MG to the Oklahoma Chapter’s HOVAK.

Issue 4

Alternative IG Side Effect Treatments

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AmazonSmile Program 3 Study on MuSK MG Dysphagia: A Swallow- 4 ing Difficulty Genes Underlying Myasthenia Gravis:

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The OKMGF & Community Health Charities Donations, Honorariums and Memorials OKMGF Contact Information

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Mission Statement: The Mission of the Oklahoma Chapter of the Myasthenia Gravis Foundation, Inc. is to provide education and patient services to improve the lives of all people affected by MG and to promote awareness of the disease myasthenia gravis.

Alternative IG Side Effect Treatments by Carla Schick

PATIENTS WHO INFUSE immune globulin ar e all too familiar with the side effects. While side effects ar e not easy to tolerate, most if not all of them can be eased through the use of a few alternative methods. Body Aches, Chills and Fatigue Body aches, chills and fatigue are some of the more common side effects of IG therapy. One option that patients can use to manage post-infusion pain is a transcutaneous electrical nerve stimulation (TENS) unit, which is a small, non-invasive device that is accompanied by several electrode pads that attach to the skin. The battery-operated TENS unit delivers gentle currents of electrotherapy to calm agitated nerves and muscles.¹ For those who suffer from body chills, a pair of therapeutic slippers is a way to keep feet warm before, during and after treatment. The slippers can be placed in the microwave for 30 to 90 seconds to provide warmth to sore, cold feet. Another way to ward off chills is to wear clothing that is especially intended for infusion sessions. Full-length zippers that are sewn into sweaters and pants allow nurses to access patients’ arms and legs, while still leaving them warm and comfortable. And, a body temperature regulating blanket, which utilizes microcapsules to store, absorb and release heat, can help to prevent chills or overheating. After IG treatments, extreme fatigue and/or sore infusion sites can make it challenging to find a comfortable sleeping position. Body support pillows are a helpful, non-medicinal solution. Some modern body pillows are available in a special U-shape that cradles the body from head to toe to provide complete and evenly distributed support. Migraines, Dizziness and Nausea Also common are headaches, migraines and dizziness post-infusion. In many instances, these adverse reactions can be attributed to dehydration. Registered Nurse Jennifer Richlin recommends patients “start drinking water, juice and power drinks the day before an infusion is scheduled [and] stay away from coffee or alcohol as they can dehydrate the body.”² Some patients turn to electrolyte rehydration drinks, which are good to have on hand before, during and after infusions because they provide the body with necessary minerals and salts to function properly. There are also advantages to consuming ginger and peppermint to treat stomach issues. Dr. Barrie R. Cassileth, chief of the Integrative Medicine Service program at Memorial Sloan-Kettering Cancer Center, touts the benefits of gingerroot tea, ginger ale and ginger cookies made from real ginger to calm a queasy stomach. Additionally, peppermint tea is widely used to relieve stomach problems, aid in digestion and relieve nausea.³ Finally, one of the most debilitating and prevalent side effects is migraine. In addition to being properly hydrated, patients can apply a migraine wrap around their head to help soothe discomfort. The wraps usually feature a removable gel pack that can either be heated or cooled to deliver therapeutic relief. Relief Is Possible Although it is not possible to eliminate IG infusion side effects entirely, their intensity can be minimized by incorporating nonmedicinal alternative treatments to pre-and post-infusion treatment routines. References 1. Mayo Clinic. Immune Globulin (Intramuscular Route, Intravenous Route, Subcutaneous Route). Accessed at www.mayoclinic.org/drugssupplements/ immune-globulin-intramuscular-route-intravenousroute- subcutaneous-route/side-effects/ drg-20067720. 2. Richlin, J. IVIG Infusion Guide: Tips to Make Infusion Days Easier. IGLiving, October 2006. Accessed at www.igliving.com/ Assets/IGL/Articles/IGL_2006-10_AR_IVIG-Infusion-Guide-Tips-to-Make-Infusion-Days-Easier.pdf. 3. Cassileth, BR. Complementary and Alternative Cancer Medicine. Journal of Clinical Oncology, Nov. 1999. Accessed at jco.ascopubs.org/content/17/suppl_1/44.short#cited-by. Copyright 2014, IG Living magazine, www.IGLiving.com., http://www.IGLiving.com CARLA SCHICK is a staff writer for IG Living magazine.

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The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.

Amazon Smile Program Do you buy products from Amazon? If so you could help the Oklahoma chapter at the same time by participating in AmazonSmile. What is the AmazonSmile Foundation? The AmazonSmile Foundation is a 501(c)(3) pr ivate foundation cr eated by Amazon to administer the AmazonSmile program. All donation amounts generated by the AmazonSmile program are remitted to the AmazonSmile Foundation. In turn, the AmazonSmile Foundation donates those amounts to the charitable organizations selected by their customers. How does the Oklahoma Myasthenia Gravis Chapter receive donations? Star t your shopping by going to Smile.amazon.com, in space to put what charity, put in Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. (be careful, it is case sensitive). Once you are signed up with AmazonSmile you can do your Amazon.com shopping with them. The AmazonSmile Foundation will donate 0.5% of the purchase price to the customer’s selected charitable organization. Each quarter, the AmazonSmile Foundation will make a donation to our organization by electronic funds transfer. So when you buy from Amazon select the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. to receive 0.5% of your products purchase cost as a donation. It’ll add up and help our chapter!

Oklahoma MG Chapter Now Accepts Credit/Debit Cards You can now make your donations to the Oklahoma MG Chapter with your credit /debit card. It now so easy to give to the Oklahoma MG Chapter, just give us a call at the MG Chapter office at 918-494-4951 to make a donation, honorarium or memorial. Have you paid your dues this year? While we are a non-for-profit organization that does not mean we do not have expenses. We have salaries, phone, internet, printing and mailing expenses. Just like all other businesses we need money to come in so we came pay our expenses. Please help us to continue to be here for you and all the other myasthenics and their families.

Study of MG patients with autoantibodies to muscle-specific tyrosine kinase (MuSK) Summary of Guptill et al. Muscle & Nerve. 2011;44: 36–40 Myasthenia Gravis (MG) patients with autoantibodies to muscle-specific tyrosine kinase (MuSK) have a clinically distinct subset of the disease. In part because the disease is rare, information on the treatment and outcomes in MuSK-MG patients has been limited and conflicting. In a recent paper, Guptill et al. reviewed data on 110 MuSK-MG patients from two clinics, in Italy and the USA, that follow a large number of these patients. Interestingly, the clinical features, response to treatment, and patient outcomes were remarkably similar between the two study sites. Eighty-five percent of patients with MuSK-MG were female and the first symptoms typically occurred between ages 30 and 40. Ocular (drooping eyelids or double vision) and/or bulbar symptoms (such as difficulty swallowing, talking, chewing) were present in most patients early in the disease. Shortly after the onset of symptoms most patients had moderate or severe disease and they often rapidly deteriorated. MG crisis, resulting in the temporary use of a ventilator, occurred in 28% of the patients. More patients responded to plasma exchange than intravenous immunoglobulin (IVIg) during exacerbations. Long-term outcomes were comparable to those of patients with AChR-Ab–positive MG, although MuSK-MG patients often required chronic use of two or more immunosuppressive medications, such as prednisone and azathioprine, to control the disease. The few patients who received rituximab responded very well. The available data was insufficient to determine if thymectomy was beneficial for patients with MuSK-MG.

Please help support your Oklahoma MG Chapter. By paying your dues you will help us to serve the MG patients, their families and health care providers in our state. The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.

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Dysphagia: A Swallowing Difficulty

by Levi Ofoe

Tis the season! The chill from the harmattan at dawn, the jingles of Christmas carols, the aroma from sumptuous spicy foods, laughter of grateful people, the cheers of children and traders at their best commercial skills co-ordinate wonderfully to create a celestial atmosphere for the celebration of a special season. In a few days, family, friends and invited guests would gather in homes, restaurants, chop bars, churches, and other places to celebrate Christmas. Different foods and an assortment of drinks, alcoholic and non-alcoholic, would be served. For many people, the celebration of Christmas brings joy to the world. For others, this is just another occasion to sigh and endure a painful and sometimes embarrassing situation because of difficulty in swallowing their food. Medically, difficulty in swallowing food is termed Dysphagia. This word is derived from the Greek root dys meaning “difficulty” or “disordered”, and phagia meaning “to eat”. Dysphagia is a sensation people feel when they experience difficulty in transporting food from their mouth to stomach. Swallowing is a very complex activity that requires a high degree of coordination of the mouth and throat muscles. To a lot of people, the ability to swallow seems so natural; the process is taken for granted until it is compromised. Swallowing Stages Typically, when we swallow, different muscles are activated in a very orderly sequence for food or liquid to be transported from the mouth to the pharynx and then esophagus, through which it enters the stomach. There are 3 sequential phases of swallowing; (1) Oral, (2) Pharyngeal, and (3) Esophageal. Each phase or stage facilitates a specific function.When we swallow food, it is transported in a smooth, coordinated and efficient process with complex series of voluntary and involuntary neuromuscular contractions through these 3 stages. But when there is any pathologic condition or disease which affects the stages in the swallow process, swallowing becomes difficult. Causes of Dysphagia Difficulty in swallowing or dysphagia, as a symptom of underlying disease, has many causes. These are usually divided into two broad groups. The first is any anatomical abnormalities from the mouth to the esophagus, which tend to physically obstruct the passage of food. The second is any functional abnormality in the organs (mouth to esophagus), the nerves of the brain, throat and esophagus, and the muscles of the throat and esophagus, whose normal function is necessary to coordinate swallowing. There are many different diseases that can impact the efficiency of our swallow pattern. Diseases of the brain can effect the neurological control of the nerves and reflexes involved in swallowing. These include neurological control of the nerves and reflexes involved in swallowing. These included neurological disorders like Stroke, Parkinson’s disease, and Cerebral Palsy. Generally, a significant percentage of patients with stroke have dysphagia, which is most significant risk factor for he development of pneumonia. Diseases and conditions that affect muscle function or connective tissue throughout the body such as Muscular Dystrophy, Myasthenia Gravis, and Scleroderma can also cause dysphagia. Moreover, scar tissue such as inflammation of the esophagus and certain head and neck cancers obstruct the upper digestive tract and esophagus. Acid reflux which is food backing up from the stomach backward toward the mouth can sometimes enter into the airway and compromise it. This is regularly felt as heartburns. Persistent acid reflux can cause inflammation and scarring of our throat and narrow the width of the esophagus. This can also affect our swallowing process. Throat inflammation can also be caused by radiation, medications, or chemical toxins. Additionally, compression of the esophagus from structures outside of the digestive tract, such as tumors of the chest, and congenital anatomical (birth defects) can affect our swallowing pattern. Trauma to the head an chest regions from accidents (including motor accidents) can be another significant cause of swallowing difficulty. What people experience when they have dysphagia The signs and symptoms of dysphagia will generally indicate the cause (e.g., neurologic or non-neurology). While some people have trouble with only solid foods, others have trouble with both liquid and solid foods. Others may also have to chew and rechew for a considerable period of time with difficulty swallowing it. Some people will present with a consistent or intermittent feeling with food being stuck in the throat. This feeling of food getting stuck in the throat may or may not interfere with their breathing. Others may feel severe chest pain which they will locate specifically to their breast bone or starting from their breast bone and spreading to the sides of their ribs. Page 4

The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.

Yet still, others may complain of having to bring portions of food back into their mouth (immediately or some hours later) after they have swallowed in ordered to re-swallow it. Some people with swallowing difficulty also complain of persistent coughing when they drink liquids of particular consistency. Others will have food/liquid enter into their lungs without even showing any outward symptoms/signs. These dysphagia symptoms, while intriguing to others, have a severe impact on the health and quality of life of people with swallowing problems. The incidence of aspiration pneumonia, due to foreign materials (e.g., food and liquid) getting into the lungs, is a frequent possibility to people with swallowing difficulty. When aspiration pneumonia becomes a clear and present danger to some patients, a feeding tube may be recommended. Impact of Dysphagia When people have difficulty swallowing, it affects the type of food they take, the quantity ingested and sometimes the nutritional components of the food they eat. They tend to lose weight which makes them a fertile ground for other opportunistic diseases. It delays the recovery process for any underlying disease. Addition cost from dysphagia is the psycho-social impact to the quality of life of the person and the family. This can also lead to severe depression due to the interruption of patients’ normal ways of life. Dysphagia can ultimately have a devastating consequences including death. Evaluation A team of professionals in swallow evaluation will generally include an Otolaryngologist (ENT), Gastroenterologist, Dentist, Speech Pathologist, Nutritionist, and Radiologist. Other healthcare specialists are consulted when needed. The evaluation involves a complete medical history and physical examination. The evaluation includes questions about the duration, onset, and severity of swallowing symptoms as well as the presence of associated symptoms or chronic medical conditions. Specific diagnostic tests are frequently performed to evaluate the anatomy and physiology from the mouth to the stomach in relation to swallowing. The aim is always to mimic a typical swallowing process in order to diagnose the cause and plan treatment. The evaluation includes questions about the duration, onset, and severity of swallowing symptoms as well as the presence of associated symptoms or chronic medical conditions. Specific diagnostic tests are frequently performed to evaluate the anatomy and physiology from the mouth to the stomach in relation to swallowing. The aim is always to mimic a typical swallowing process in order to diagnose the cause and plan treatment. Swallowing Therapy When the stage(s) of impairment is/are located, treatment protocols are initiated. Swallowing therapy may consist of medical or non-medical methods. The method of treatment is based on the results of the patient’s evaluation. The Otolaryngologist/Gastroenterologist usually provides medical treatments (surgery, prescriptions, etc.) . Non-medical therapies such as swallowing strategies are provided by the Speech Pathologist. In some cases., a combination of both treatments is required. Typically, swallowing therapy is available on a daily basis. Swallow strategies and modification of food consistency with a hierarchical progress in food consistency are planned as part of the therapeutic process. Clinical experience has demonstrated that daily treatment sessions lead to faster progress. In many cases improved swallowing has been noticed within two to four weeks. Many patients recover sufficient swallowing ability to eliminate their reliance on feeding tubes. Hope for people with dysphagia So during this Christmas season, while salivating in the presence of the meals served, and gently rubbing palms together in anticipation of consuming our sumptuous meal, we can also acknowledge that a section of our people have some difficulty swallowing. What we tend to take for granted is a daily struggle for some members of our families, some friends, and some of our invited guests. If we experience difficulty swallowing our solid or liquid food, our healthcare practitioners are always available for a comprehensive evaluation and treatment. So, while we prepare our hearts to make room for a heaven and nature to sing in a coordinated manner, we could make room for others with impairment in their swallow process. For it is in doing thus that we can also share the wonders of His love. Levi Ofoe is a Graduate Student at University of Florida, Speech, Language and Hearing Sciences Department. His clinical interests included Speech Fluency, Voice and Swallowing Disorders. Email: [email protected] This publication is intended to provide the reader with general information to be used solely for educational purposes. As such, it does not address individual patient needs, and should not be used as a basis for decision making concerning diagnosis, care, or treatment of any condition. Instead, such decisions should be based upon the advise of a physician or health care professional who is directly familiar with the patient. The information contained in this publication reflects the views of the authors, but not necessarily those of the Myasthenia Gravis Foundation of America (MGFA) and the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.. Any reference to a particular product, source, or use does not constitute an endorsement. MGFA, its agents, employees, Directors, chapters, its Medical/Scientific Advisory Board, and its Nurses Advisory Board or their members make no warranty concerning the information contained in this publication. They specifically disclaim any warranty of merchantability, fitness for any particular purpose, or reliability regarding the information contained herein, and assume no responsibility for any damage or liability resulting from the use of such information.

The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.

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Genes Underlying Myasthenia: GWAS update by Daniel B. Drachman, MD There is a great deal of evidence that genetic influences predispose individuals to Myasthenia Gravis (MG), and play important roles in its clinical features. To analyze the genes that are related to MG, a Genome Wide Association Study (GWAS) is being conducted with support from MGFA. The ultimate goal of the study is to understand the genetic factors underlying MG and be able to target the relevant genes to provide new and effective treatments for MG. This study involves analysis of a very large number of genes from more than 1,000 MG patients. In collaboration with 14 MG centers throughout North America, we are collecting DNA from saliva samples and clinical information (kept confidential) that includes factors likely related to the individual’s genetic makeup, such as gender, age of onset of MG symptoms, severity, association with other autoimmune diseases, family history of MG or other autoimmune diseases, and response to treatments. The collection of DNA and information began at the end of January 2010. We have obtained more than 500 DNA specimens and related clinical information and have found that about 6 percent of these patients have a family member who is also affected by MG. 26 percent of the patients have additional autoimmune disorders and 30 percent have a family member with an autoimmune disorder. These numbers are far higher than expected for the non-MG population, and support the idea that

genetic factors are involved.

When the DNA and clinical information collection is completed, the material will be analyzed by collaborators at the National Institutes of Health, under the direction of Dr. Bryan Traynor. They will analyze 700,000 genes from each patient’s DNA. The genetic information will be processed by computers, using bioinformatic methods, to determine which genes are associated with MG.

Myasthenia Gravis Foundation of America, Inc., Foundation Focus, Fall 2010

Your Oklahoma MGFA Chapter and the Community Health Charities Did you know that the Oklahoma Chapter of the MGFA is a member of the Community Health Charities organization? Community Health Charities (CHC) is a national health charity organiztion dedicated to preventing, managing, and/or curing chronic health conditions. CHC is a Federation. Feder ations ar e the liaison between a gr oup of char ities and var ious employer groups and offers benefits to both groups of stakeholders. The role of the CHC is to evaluate member charities annually to ensure to both companies and donors that their member charities meet high standards of performance and financial integrity. Besides designating our chapter on the Community Health Charity Designation forms you may also designate our chapter on the United Way Employees Designation forms. Just put in our full name: the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. Please support your Oklahoma MGFA Chapter through your employee payroll designations. We are a small nonprofit and we rely on our Oklahoma MG Chapter members donations and workplace designations.

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The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.

Donations – Honorariums – Memorials The following are the names of those who have paid their Chapter memberships or have made contributions to the Chapter from July 30 — September 17, 2014. In Memory of Pat Renfroe Allen Renfroe

Donations & Dues Stephanie Hunter Dorothy Galyon Patricia Adams Dick Beshear Timothy Hough John Day Anonymous Roger Driggers Leon & Roberta Seaton Harold Cooper Bill & Julia Culbertson David & Brenda Du Bois Wellon B. Poe Hoey Construction Mr. & Mrs. Stephan Kovzan Jackie L. Hill Wanda Morrison Gary Bryan

In Honor of Lori Swift Mark Swift In Honor of Dr. Kay Northcutt Frances Oney

A great way to remember a family member’s or a friend’s birthday, graduation, anniversary, or memory is with a donation to the OKMGF. Our chapter will send an OKMGF birthday, honor or memorial card to let them know that you care.

Thank you so much for remembering the Oklahoma Chapter with your annual dues, your special occasion gifts, honors and memorials. Your donations, small or large are greatly appreciated, and are tax deductible. Without your support we could not continue our work.

Thank you!

May no myasthenic ever feel alone in their disease.

Contact Information OKMGF Board Members Hovak is published quarterly by the Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc., 4606 E 67th St President - Peggy Foust S, Suite 100, Tulsa, OK 74136. Editor : Peggy Foust Vice President/Secretary - Margret Feller Tele #: 918-494-4951 Cory Christofferson, Emerson Pollard, Kathie Slief, email: [email protected] Carolyn Staubach, RN & Rick Weigel webpage: http://myasthenia.org/LivingwithMG/MGFAChapters/ Myasthenia Gravis Foundation of America, Inc. Oklahoma.aspx 355 Lexington Ave, 15th Floor, NY, NY 10017-6603 The OKMGF Chapter office is open: Monday & Friday - 11:00 a.m. - 4:00 p.m., Wednesday 9:00 a.m.- 4:00 p.m.- please know office hours may vary

1-800-541-5454 1-212-297-2156 Monday – Friday 8:00 a.m. – 5:00 p.m. [email protected]; webpage: http:www.myasthenia.org

Office Staff: Peggy Foust, Executive Director & Margret Feller The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc.

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The Oklahoma Chapter of the Myasthenia Gravis Foundation of America, Inc. 4606 E 67th ST S, Suite 100 Tulsa, OK 74136-4950

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