living with mg
Transcription
living with mg
January - March 2013 Myasthenia Gravis Association 1000 John R, Suite 111 Troy, MI 48083 (247) 591-4419 (800) 227-1763 [email protected] www.mgadetroit-easternmi.org IN THIS ISSUE: •Living with MG •News For You & Calendard of Events •MG and Immunosupressants •Support Group Information LIVING WITH MG If you met Leanne Hosking, you’d probably never guess she is battling a neuromuscular disease. She is a lively 32 year old woman who works full-time, exercises daily, and enjoys traveling the world. But this wasn’t the case three years ago when she suffered from severe muscle weakness and fatigue. She couldn’t drive at night and found it difficult to complete everyday tasks like getting dressed and brushing her teeth. She battled double vision and scarily navigated her way through immigration in Germany with one eye covered because she refused to cancel a preplanned European vacation. She was diagnosed with Myasthenia Gravis at the age of 29 after suffering from noticeable muscle weakness in her arms. Shortly after diagnosis, she was referred to have a thymectomy, for which she sought Dr. Mark Orringer, thoracic surgeon at the University of Michigan Health System. Dr. Orringer referred her to neurologist Dr. James Teener for plasma exchange in preparation for the surgical removal of her thymus gland. The actual surgery presented no major problems for her physically, but she still has not achieved remission of symptoms as hoped. She is still under the care of Dr. Teener at U of M with her current course of treatment including two oral medications, CellCept and Mestinon, and biweekly plasmapheresis treatments. Leanne works as a deputy court clerk at the District Court in Harper Woods. Luckily, she has a very supportive team of coworkers that permits her to receive plasmapheresis during work hours at the U of M Hospital in Ann Arbor. On her current treatment plan, Leanne’s strength has stabilized and she has resumed her normal activities. Leanne loves riding her bike and averages about 60 miles a week in the summer. In addition to biking, she plays tennis, dances, and weight trains all to combat her fatigue and prevent muscle atrophy. Since her diagnosis and surgery, she has traveled to Florida, Hawaii, and the Dominican Republic, as she finds the warm weather to be a favorable environment for her physical strength and well-being. Leanne copes with the physical and mental challenges this rare disease presents with the help of her amazing support system of family, friends, and fellow MG patients. NEWS FOR YOU NEW MGA OFFICE Thanks to the suggestion of the Gagnon Family, MGA found new office space in Troy. The Gagnon’s daughter, Debbie, is employed by the landlord, Tony DiMambro, Fleet Enterprise. Debbie suggested that MGA contact Mr. DiMambro and the rest as they say is history. Our office is scaled down, a little crowded, but doing fine. MGA’s part-time accountant, Mary Pat Horton deserves big thanks for helping with this overwhelming move. Also Philip and Karen Brewster for helping with the packing. And, Dick Giba, your hardworking president, spent an entire day helping to purge and pack the office. Come and visit the new office. Call ahead so that we can put on the coffee! HOLIDAY APPEAL – 2012 Thank you for your great support. The Holiday appeal realized approximately a 10% increase in donations over last year. We cannot thank you enough for this great support. This helped MGA pay for our moving expenses as well as some of the office operations – installation of the phone, computers etc. ALL OF YOU ARE the BEST! SOCIAL MEDIA MGA is looking for volunteers to help develop a network of Social Media. We would like to develop Facebook and Twitter accounts to benefit our membership and others. The intent is to get the word out about myasthenia gravis and especially our events. At the present time we are in contact with our members via ‘broadcast emails”, regular mail and the phone. However, it would be very useful if MGA could also develop the “new” social media to maintain contact with our younger members and also newspapers, TV stations, radio stations, etc. If you can help please contact the office – (248) 591-4419 or mgadetroit2@ yahoo.com CHARITY MOTORS - CAR DONATION PROGRAM If you or anyone in your family is in the market for a new vehicle and plan on trading in your current vehicle, 2 please consider donating your “old” vehicle to Charity Motors. Give them MGA’s name, address, phone and we will get the market price proceeds from the sale of your vehicle. You will also get a tax deduction .The phone number for Charity Motors, (313) 255-1000. They are a trustworthy organization. UNITED WAY – WORK PLACE CAMPAIGNS The United Way for Southeastern Michigan will soon begin their campaign to raise funds for their projects/ programs. If your company or agency conducts a work-place campaign for United Way, please designate MGA as a recipient for your donation. United Way will send those designated monies to MGA. Thank you. ART PROGRAM OFFERED MGA has been offered the opportunity to engage in an Art Program for members, their family and friends. Kate Sullivan, an MGA member and wife of Don Sullivan, who has MG. Kate is volunteering her time to meet with those who would be interested in participating in an afternoon or evening of art. The only costs would be your time and materials. The purpose of the program is to provide an opportunity to identify and explore concerns related to living with the diagnosis of MG. Kate is an experienced Art teacher and promises that this program would be time well-spent and fun too! Sign-up today by calling the office (248) 591-4419 or email [email protected]. Time and place will be determined by the number of people signing-up and their geographic location. CONGRATULATIONS NEAL HEPNER! Mr Hepner celebrated his 90th birthday on January 7, 2013. Happy Birthday from all of the MGA family and staff. Mr. Hepner is an engineer by training/schooling. He has served as an expert witness in the investigation of malfunctions in large mechanical products. He used to fly his own airplane across the state to testify at court hearings. He and his wife, Jean have been married for 11 years. Both were widowed and have known each other for over 50 years with Jean Hepner having been a sorority sister of Neal’s first wife. He was diagnosed with MG over 10 year’s ago.Mr. Hepner has two daughters, one is a cardiologist and the other is a business owner in Medina, Ohio. Congratulations, Neal! MGA NEWSLETTER • January - March 2013 NEWS FOR YOU VOLUNTEER HELP NEEDED FOR TWO VERY IMPORTANT EVENTS/FUNDRAISERS THE MGA WALK/RUN AND THE MGA 20TH ANNUAL GOLF CLASSIC. These two events raise most of the funds that we require to maintain our Patient Services program. THE 14th ANNUAL MGA WALK/RUN Saturday, May 4, 2013 Lake St. Clair Metropark in Harrison Township THE MGA 20th ANNUAL GOLF CLASSIC We need help with: - Set up and clean up. - Registration table – includes giving out “bib numbers” and race packets to each participant. - Teams of 2-4 (with signs) to “cheer” the runners along the route. - Hand out the T-shirts to the runners/walkers - Picture taking at the event – MGA will supply the instamatic cameras. - Distribute Food/Fruit donations. **We need golfers! Our goal this year is to have 100** We need volunteers for the day of the event: - Set-up and clean up - Registration table – includes selling raffle tickets - Golf hole spotters- especially at the Hole-InOne Golf hole and the “Cookie Hole”. Also: 1)Gift baskets to be raffled - You can make your own or purchase them ready-made. 2) Prizes to be part of the raffle – such as gift cards from Starbuck’s, grocery stores, theatres, department stores, etc. The more prizes the better. 3)If you have contact with a “special/known celebrity” that would join MGA at our event, that would be great! 4)A major sponsor or two to help underwrite the major expenses of this fun event, ie., t-shirts, golf hats, golf paraphernalia, trophies. Donation of raffle prizes – such as gift cards from various establishments, restaurants, beauty salons, theatre tickets, etc. Call the MGA office (248) 591-4419 or e-mail us at [email protected] and we will provide additional flyers with verification of our 501©3 status for donations. Friday, August 2, 2013 Tanglewood Golf Club in South Lyon Please call the office at (248) 591-4419 or email at [email protected] for more information or with questions. MGA SOSIN EDUCATION SYMPOSIUM – OCTOBER 6, 2013 The Symposium will be held on Sunday, October 6, 2013 at the Inn at St. John’s, Plymouth. It is a served lunch followed by a brief business meeting and presentation by a noted speaker. This year we are very pleased to have as our presenter Dr. Noel Rose. Dr. Rose is the Director of Johns Hopkins Center for Autoimmune Disease Research at Johns Hopkins University in Baltimore, Maryland. His program includes doing research on Myasthenia Gravis. You will not want to miss this presentation. Mark your calendars now. Invitations will be sent in late August. TRIBUTE CARDS for HONORS/ MEMORIALS are AVAILABLE MGA has tribute cards for sale. They are 5 for $25.00. These can used for acknowledging birthdays, anniversaries, special events and memorials. MGA has several members who purchase these regularly. Call or email the office to have some mailed to you. MGA NEWSLETTER • January - March 2013 SOMETHING TO CONSIDER Please consider the Myasthenia Gravis Association when doing your Will. We know that almost everyone has family to consider when doing a Will. However, you may also want to leave something to MGA in perpetuity. This would insure the continuation of MGA’s, services for future persons diagnosed with MG. Also consider pledging a monthly amount to MGA. We have one member who has pledged $100 per month to help with the office lease. Something to consider! 3 CALENDAR OF EVENTS 14th Annual MGA Walk/Run – Saturday, May 4, 2013 Lake St. Clair Metro Park, 31300 Metropolitan Parkway, Harrison Township, MI Time – Registration for all from 8:00 - 8:45 a.m. Start Time – 5K - 9:00 a.m. and 1 Mile Walk/Run - 9:15 a.m. Pre-registration by phone or mail to the MGA office On-line registration at www.singmeup.com/91231 Cost: Pre-registration - $20 Registration on Race Day - $25 Fun-Walk-Run - $15 20th Annual MGA Golf Classic – Friday, August 2, 2013 Tanglewood Golf Club, South Lyon, MI Scramble Play – 18 Holes of Golf - Tee-Off time – 9:00 a.m. Includes – Box lunch & dinner Cost: $125.00 per person Golf Raffle – Prizes include: 1) Delta Airline $800 gift card, 2) Golf and room accommodations at Bay Harbor Inn, Petosky, MI. 3) $500 cash. ****Raffle Tickets are: 3 for $25, 6 for $50, 14 for $100.**** SOSIN EDUCATION SYMPOSIUM – Sunday, October 6, 2013 Program – Dr. Noel Rose, Director, Center for Autoimmune Disease Research, Johns Hopkins University, School of Public Health, Baltimore, Maryland Inn at St. Johns, Plymouth, MI. Cost - $35.00 per person – Plated Lunch at Noon Plan on attending this very exciting program. 4 MGA NEWSLETTER • January - March 2013 MYASTHENIA GRAVIS AND IMMUNOSUPPRESSANTS by Michelle Dulashaw, MGA Medical and Social Support Specialist Myasthenia Gravis (MG) is an autoimmune disease that affects the voluntary muscles in the body. When Mestinon (Pyridostigmine) isn’t enough to help keep the symptoms of MG under control, immunosuppressants are drugs that are commonly prescribed and have shown to be effective. Azathioprine (Imuran) is one of the “longterm” immunosuppressants used to treat MG. Improvement with Imuran is not immediate. It can take three months to a year before a patient may see improvement in muscle strength. Mycophenolate mofetil (CellCept) is the final “long-term” immunosuppressant commonly Immunosuppressants are drugs that suppress prescribed by our doctors at the MG Treatment the immune system. These medicines work Center. It is believed that CellCept may work faster in MG by changing the normal action of the and have fewer side effects than the other drugs immune system and limiting the production in its class (Cyclosporine and Imuran). It still may of antibodies. The antibodies associated with take three to six months to show any improvement MG destroy the receptor sites on the muscles. in strength. When there are fewer antibodies to destroy the receptor sites, muscles are stronger. There are With CellCept and Imuran, you MUST have the lab three immunosuppressants that the doctors in our work ordered by your physician done in the time Myasthenia Gravis Treatment Center prescribe periods that they dictate and take the medicine as prescribed by the physician. The biggest concern frequently. with these meds is to follow the condition of the Prednisone is a man-made medicine that liver, blood and pancreas. resembles the natural corticosteroid produced by the adrenal glands. This medicine also acts as an Immunosuppressant drugs may lower your anti-inflammatory as it does in treatment of other ability to fight infection. It is very important to illnesses. It is not as fast acting as a cholinesterase tell all physicians who have a hand in your care inhibitor such as Mestinon, but it is the fastest what medicines you are on at all times, including acting immunosuppressant. High doses of anything over the counter. Prepare a list of corticosteroids are not meant to be taken long medications to carry with you at all times. Whether term due to the side-effects that can occur with it is a podiatrist (foot doctor) or a dentist, let them long term usage. The idea with using high doses know what you are taking! of these drugs for MG is to get symptoms under control and slowly get a patient off the medicine or on a small and safer dose. It is essential that NOTE: Written with permission from the Western patients taking high doses of prednisone advise Pennsylvania Myasthenia Gravis Association their primary care physicians. Some of the biggest concerns with high dose prednisone are the increase of blood sugar levels & high blood pressure. When patients are unable to wean off prednisone or titrate down to a low dosage, the doctor may consider switching the patient to a “long-term” immunosuppressant. MGA NEWSLETTER • January - March 2013 5 HONORS AND MEMORIALS IN HONOR OF: Jerry and Mike Burt’s_50th Anniversary From: Mary and Roy Dirkes Alana’s Bat Mitzvah - Mr. and Mrs. Norman Ordower’s Granddaughter From: Janet Adelson Jacqueline Walker’s 50th Birthday – May God Bless You! From: Ruby Shaw, John Walker and all your wonderful family and friends. MGA Staff IN MEMORY OF: Toni Patrick Leonard – Mother of Mr. and Mrs. Mickey Patrick From: Steve and Faye Adelson Joseph Goldberg – Father of Howard Goldberg and Family From: Steven, Faye, Sari and Ivan Adelson Carolyn Prouse – Mother of Mrs. Edelstein From: Janet Adelson Scott Goth – Husband of Mrs. Donna Goth From: Steven, Faye, Sari and Ivan Adelson Roland Seffern – Father of Noreen Gasparetto From: Chris and Audra Herman, Judy Karle, and St Lucy’s Parish Council Marta Kilp From: Waldemar and Hedwig Holz, Mark and Denise Mansueto, Kenneth and Therese Wolicki, and Ingrid Zander Sally Kucway From: Julie Ellen Hoyt Edward Barszcz From: Audrey Barszcz and Kathleen Collins Eternal Flame Jean Sosin From: Peggy and Dennis Frank, Leslie and Joel Litoff, LaGrasso Brothers, Inc., Couzens, Lansky, Fealk, Ellis, Roeder & Lazar, P.C., Carol and Chuck Valenti Wyva Van Kirk From: Steve, Faye, Sari and Ivan Adelson Lorraine Hosking – Mother of Mark and Grandmother of Leanne Hosking From: Bruce and Karen Pease REMEMBERING JEAN SOSIN Jean Sosin struggled with myasthenia gravis for over 50 years. She raised a loving family, was a collector of fine glass (which was displayed at the Detroit Institute of Arts), cherished her children and grandchildren, brought volunteers to MGA from outside the usual ranks. She put MGA in touch with those who could help MGA, and help they did. Jean Sosin passed away in December 2012. She leaves a grand legacy as displayed through her family, Neil Sosin, Gayle Rosenberg Justman, Matthew Sosin and all their families. The Sosin Award was established to honor Hilbert Sosin and Jean Sosin. Hilbert predeceased Jean by many years. However, in reviewing the history of MGA his name is prominent in our archives. He served as the accountant/auditor for MGA and supported his wife in her struggles. MGA was fortunate to know them as volunteers and especially good friends. Thank you, Jean and Hilbert. Please continue to watch over MGA from your heavenly home. 6 MGA NEWSLETTER • January - March 2013 HOLIDAY APPEAL DONATIONS David Alexander Donna Anderson Robert Andrews Shirley Anspaugh Mary Lou Behmlander Jack and Frances Betteley Joseph and Nancy Blumenthal Edward Bohde Philip and Karen Brewster Helen and Fred Brown Dr. Martin J. Brown Rose and Walter Burniak Mr. and Mrs. Rick Carra Dolores Cartwright Dennis and Belinda Castagna Carolyn and Charles Caulk Martin and Sally Cayley Kay Connelly and William Chamness Mary and Ted Ciagala Jeanne M. Coddington Victor and Zan Coen Larry Croy Gary D’Alessandro Charles Dalgleish Mary Dirkes Paul Donohue Richard E. Durkin Stanton B. Elias, M.D. Raina M. Ernstoff, M.D. Donald and Janice Ferencz Mary Ellen Flecksteiner Carol E. Flint Richard and Stephanie Giba Garth and Kathy Groman Guilford and Patricia Forbes Otto and Helga Freitag Mary Patricia Garr Bruce and Joanne Godfrey Ruth Granlund Walid Harb, M. D. Sheila and Gary Hatch Dennis and Sally Henry BettyJ. and William D. Hewitt Lorna and Norman Holtzman MGA NEWSLETTER • January - March 2013 David and Marjorie Horton Mary Pat and Greg Horton Mark and Nancy Hosking Michael and Ellen Jaffe Howard and Judy Kander Carl and Marion Knisely Gregory Kremkow Sharon and Dennis Kreza James and Beverly Lavey Earle and Elaine Liss James and Robbin Mazur Gerald and Denise McCarty Janice and Gregory Mendell Mr. and Mrs. William J. Minore Richard L. Morgan Nora Lynn Napolitan Endowment Fund John and Suzanne Nicholson Kate Oberliesen Reedal and LaVonne Ogilvie Robert and Peggy Okray Christina M. Pitcher Raymond and Patricia Reske Diane Robinson Sal and Sue Rocca Lynn and Harvey Rubin Arnold Sameroff Richard and Madalyn Shier Dale and Diane Shomo Abigail Skinner Mr. and Mrs. Raymond Sliva H. Owen and Joan Smith Mr. and Mrs. Ronald A. Smith Sharon and Walter Storrs, III Donald J. Sullivan Mr. and Mrs. William Swartz Mary Boyer Taylor Dr. Stephen and Paula Tepastte Mary Lee Ventzke Roger J. Visocchi Jacqueline, John Walker, Ruby Shaw Robert Weidenbach Robert L. and Patricia A. Williams Beverly and Jeffrey Yachnin 7 MEMBERSHIPS AND DONATIONS DONATIONS OVER $500 Philip and Karen Brewster, Janet Gooding, Edward Kaiser, Donald J Sullivan BENEFACTORS Ronald David, Donald Ferencz, Richard Giba, Jake and Dianne Jacobsen, Matthew Sosin, and Robert Weidenbach CIRCLE OF FRIENDS Dean and Lisa Ackerman, Joseph W. Blumenthal, Mr. and Mrs. Lewis Castagna, Gary D’Alessandro, Otto and Helga Freitag, Dr. and Mrs. Walid Harb, and Miller Vein CONTRIBUTING MEMBERS Carole Arcy, Helen and Fred Brown, Charles F. Caulk, Molly Clinton-Steele, Jeanne Coddington, Mary Dirkes, Janice Friend, Amelia Gralewski, Paul and Barbara Hornkohl, David R. Horton, Gayle Rosenberg Justman, Lynn MacDonald, Gerald McCarty, Reedal and LaVonne Ogilvie, Robert L. Okray, Edward L. Rowden, Jr., Lynn Rubin, H. Owen and Joan Smith, Linda Smith, Ronald and Dorothy Smith and Jeff and Beverly Yachnin Dorothy French, Wanda Gadamoski, Betty and Harvey Golz, Leonora Greenhill, Gina Gregory, Florence B. Halloran, Dennis and Sally Henry, Betty J. Hewitt, Ernie and Shirley Hodas, Leanne Hosking, Mark and Nancy Hosking, Richard Jensen, Cynthia Jones, Judy and Howard Kander, Harold Kluck, Carl Knisely, James and Beverly Lavey, Harry Lewnosky, Earle P. Liss, Mary Marculewicz, James Mazur, Kathy McCurdy, Bernard McDonald, William and Mary Minore, Richard L. Morgan, John and Suzanne Nicholson, Carmen Norkiewicz, Susan Prady, Victor Quigley, Natalie Reddick, Raymond and Patricia Reske, Lois Rice, Diane Robinson, D. Martin Scott, Dale J. Shomo, Raymond and Coralie Sliva, William and Virginia Swartz, Mary Boyer Taylor, Sheryl Thomas, Jacqueline Walker and Ruby Shaw, Mary Ward, Jeannette Williams, Douglas and Joann Yam, and Leona Zyber. OTHER DONATIONS Menchie’s Canton Center – Fundraiser In Memory of Ed Barszcz American Express Charitable Fund MEMBERSHIPS Donna Anderson, Audrey Barszcz, John Becker, Mary Lou Behmlander, George and Barbara Brancato, Dr. Martin Brown, Peggy Bushnell, Rick and Nancy Carra, Richard Caste, Mary and Ted Ciagala, Victor and Zan Coen, Karen Costin, Larry Croy, Charles Dalgleish, Jr., Carol Ann Flint, Reveca Foley, 8 MGA NEWSLETTER • January - March 2013 From Dick Giba, MGA Board President: Some of our dedicated supporters are beginning to send in monthly donations to help level MGA’s monthly budget requirements. We appreciate your contributions and hope that you would consider this approach especially since all donations are tax deductible. ------------------------------------------------------------------------------------------------------------------------------OFFICIAL PLEDGE CARD FORM You are asked to fill out and sign this Pledge Form to officially designate your gift to the The Myasthenia Gravis Association Name________________________________________________________________________ Address______________________________________________________________________ City State Zip_________________________________________________________________ Phone (H) _________________________________ (W) ______________________________ (Cell)__________________________Email__________________________________________ We/I hereby pledge our/my gift of $ ____________________________________ to be paid in installments of $_____________________________ over a period of ____________ years on ______________________ (month/day/year). Credit cards (Visa, MasterCard and Discover) are accepted. We will track donations and send a letter of receipt at the end of each year. Please include credit card # and expiration date. Credit Card # ________________________________________Expiration date: ___________ Signature______________________________________________________________________ Date_______________________ Please sign and complete form and mail to: Myasthenia Gravis Association 1000 John R, Suite 111 Troy, MI 48083 (248) 591-4419 Your continued support is greatly appreciated MGA NEWSLETTER • January - March 2013 9 2012 SOSIN SYMPOSIUM 10 MGA NEWSLETTER • January - March 2013 MYASTHENIA GRAVIS ASSOCIATION Support Group Info • • • Do you need information about MG and its treatment? Would you like to meet with others who are living with MG? Do you have questions and concerns about coping with MG? If you have answered YES to any of the above questions, you may be interested in attending a New Patient Orientation Meeting or a Support Group Meeting. Please call us if you have any questions or suggestions. New Patient Orientation An orientation meeting for patients and family is held in the Troy office. Staff members and other patients will be available to answer questions. Please call ahead to let us know if you are interested. Metro Support Group The Metro group meets the second Monday of the month in Jan., March, May, Sept., and Nov. at 7:00 p.m. The group meets at Amazing Grace Lutheran Church, 29860 Dequindre (north of 12 Mile) in Warren. For more information, please call the MGA office. 2013 Dates: Jan 14 (cancelled), Mar 11, May 13, Sep 9 & Nov 11. Ann Arbor Support Group The Ann Arbor Support Group meets the fourth Thursday of the month in Jan., March, May, July, Sept., at 7:00 p.m. at St. Joseph Mercy Hospital, 5305 Elliott Dr., Ypsilanti, MI 48197 in the Education Center, Classroom 4. From Parking Lot “P”, the entrance is below the # 5305 on the building. Take elevator in the lobby to the second floor. Proceed down the hallway to your left (through double doors). Just before the second double door, turn left into narrow hallway. After passing through first door, Room # 4 is on your right. For more information call the MGA office at 586-755-9100. 2013 Dates: Jan 24, Mar 28 (cancelled), May 23, Jul 25 & Sep 26. Alpena Phone Network The Alpena area has a phone network. You can talk with another person with MG by calling Denise Tibor at 989-471-5364 or E-mail her at [email protected] Private counseling is available at the MGA office in Troy. Call for an appointment. 248-591-4419 OR 800-227-1763 May no Myasthenia Gravis patient ever everfeel feel alone with their disease. MGA NEWSLETTER • January - March 2013 11 MYASTHENIA GRAVIS ASSOCIATION 1000 John R, Suite 111 Troy, MI 48083 Non-Profit Org. U.S. Postage PAID S.C.S., MI Permit No. 87 January - March 2013