January - March 2013 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 1000 John R, Suite 111 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 • Living with MG 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 • News For You & treatment including two oral medications, CellCept and Mestinon, and biweekly Calendard of Events 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 • Support Group 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.
please consider donating your "old" vehicle to Charity Thanks to the suggestion of the Motors. Give them MGA's name, address, phone and
Gagnon Family, MGA found new office we will get the market price proceeds from the sale
space in Troy. The Gagnon's daughter, of your vehicle. You will also get a tax deduction .The
Debbie, is employed by the landlord, phone number for Charity Motors, (313) 255-1000.
Tony DiMambro, Fleet Enterprise. They are a trustworthy organization.
Debbie suggested that MGA contact UNITED WAY – WORK PLACE CAMPAIGNS
Mr. DiMambro and the rest as they The United Way for Southeastern Michigan will soon say is history. Our office is scaled begin their campaign to raise funds for their projects/ down, a little crowded, but doing fine. MGA's part-time programs. If your company or agency conducts a accountant, Mary Pat Horton deserves big thanks for work-place campaign for United Way, please designate helping with this overwhelming move. Also Philip and MGA as a recipient for your donation. United Way will Karen Brewster for helping with the packing. And, Dick send those designated monies to MGA. Thank you.
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 ART PROGRAM OFFERED
MGA has been offered the opportunity to engage in an Art Program for members, their family and friends. Kate HOLIDAY APPEAL – 2012
Sullivan, an MGA member and wife of Don Sullivan, who has MG. Kate is volunteering her time to meet with Thank you for your great support. The Holiday appeal those who would be interested in participating in an realized approximately a 10% increase in donations afternoon or evening of art. The only costs would be over last year. We cannot thank you enough for this your time and materials. The purpose of the program great support. This helped MGA pay for our moving is to provide an opportunity to identify and explore expenses as well as some of the office operations – concerns related to living with the diagnosis of MG. installation of the phone, computers etc. ALL OF YOU 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 SOCIAL MEDIA
email [email protected]. Time and place will MGA is looking for volunteers to help develop a network be determined by the number of people signing-up
of Social Media. We would like to develop Facebook and their geographic location.
and Twitter accounts to benefit our membership
and others. The intent is to get the word out about CONGRATULATIONS NEAL HEPNER!
myasthenia gravis and especially our events. At the Mr Hepner celebrated his 90th birthday on January 7, present time we are in contact with our members 2013. Happy Birthday from all of the MGA family and via ‘broadcast emails", regular mail and the phone. staff. Mr. Hepner is an engineer by training/schooling. However, it would be very useful if MGA could also He has served as an expert witness in the investigation develop the "new" social media to maintain contact of malfunctions in large mechanical products. He used with our younger members and also newspapers, TV to fly his own airplane across the state to testify at court stations, radio stations, etc. If you can help please hearings. He and his wife, Jean have been married for contact the office – (248) 591-4419 or mgadetroit2@ 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 CHARITY MOTORS - CAR DONATION PROGRAM MG over 10 year's ago.Mr. Hepner has two daughters,
If you or anyone in your family is in the market for a one is a cardiologist and the other is a business owner
new vehicle and plan on trading in your current vehicle, in Medina, Ohio. Congratulations, Neal!
These two events raise most of the funds that we require to maintain our Patient Services program.
Saturday, May 4, 2013 Friday, August 2, 2013 Lake St. Clair Metropark in Harrison Township Tanglewood Golf Club in South Lyon We need help with: **We need golfers! Our goal this year is to have 100** - Set up and clean up. We need volunteers for the day of the event: - Registration table – includes giving out "bib - Set-up and clean up numbers" and race packets to each participant.
- Registration table – includes selling raffle tickets - Teams of 2-4 (with signs) to "cheer" the runners - Golf hole spotters- especially at the Hole-In- along the route.
One Golf hole and the "Cookie Hole".
- Hand out the T-shirts to the runners/walkers - Picture taking at the event – MGA will supply 1) Gift baskets to be raffled - You can make your the instamatic cameras.
own or purchase them ready-made.
- Distribute Food/Fruit donations.
2) Prizes to be part of the raffle – such as gift cards from Starbuck's, grocery stores, theatres, Donation of raffle prizes – such as gift cards from department stores, etc. The more prizes the better. various establishments, restaurants, beauty salons, 3) If you have contact with a "special/known theatre tickets, etc. Call the MGA office (248) 591-4419 celebrity" that would join MGA at our event, or e-mail us at [email protected] and we will that would be great! provide additional flyers with verification of our 5013 4) A major sponsor or two to help underwrite the status for donations.
major expenses of this fun event, ie., t-shirts, golf hats, golf paraphernalia, trophies. Please call the office at (248) 591-4419 or email at [email protected] for more information or with questions.
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 Please consider the Myasthenia Gravis by a brief business meeting and presentation by a noted Association when doing your Will. We
speaker. This year we are very pleased to have as our know that almost everyone has family presenter Dr. Noel Rose. Dr. Rose is the Director of Johns to consider when doing a Will. However, Hopkins Center for Autoimmune Disease Research at Johns you may also want to leave something Hopkins University in Baltimore, Maryland. His program to MGA in perpetuity. This would insure includes doing research on Myasthenia Gravis. You will not the continuation of MGA's, services for want to miss this presentation. Mark your calendars now. future persons diagnosed with MG. Also Invitations will be sent in late August.
consider pledging a monthly amount to MGA. We have one member who has TRIBUTE CARDS for HONORS/ MEMORIALS are
pledged $100 per month to help with the office lease. Something to consider! 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 CALENDAR OF EVENTS 14th Annual MGA Walk/Run – Saturday, May 4, 2013
Lake St. Clair Metro Park, 31300 Metropolitan Parkway, Harrison Township, MITime – 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 officeOn-line registration at 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, MIScramble 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, MarylandInn at St. Johns, Plymouth, MI. Cost - $35.00 per person – Plated Lunch at NoonPlan on attending this very exciting program. MGA NEWSLETTER • January - March 2013 MYASTHENIA GRAVIS AND IMMUNOSUPPRESSANTS by Michelle Dulashaw, MGA Medical and Social Support Specialist Myasthenia Gravis (MG) is an autoimmune Azathioprine (Imuran) is one of the "long-disease that affects the voluntary muscles in term" immunosuppressants used to treat MG. the body. When Mestinon (Pyridostigmine) isn't Improvement with Imuran is not immediate. It can enough to help keep the symptoms of MG under take three months to a year before a patient may control, immunosuppressants are drugs that are see improvement in muscle strength. commonly prescribed and have shown to be effective. 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 frequently. prescribed by the physician. The biggest concern 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 Associationtheir 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


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.


Toni Patrick Leonard – Mother of Mr. and Mrs.
From: Audrey Barszcz and Kathleen Collins From: Steve and Faye Adelson Joseph Goldberg – Father of Howard
Goldberg and Family

Carolyn Prouse – Mother of Mrs. Edelstein
From: Steven, Faye, Sari and Ivan Adelson From: Janet Adelson Scott Goth – Husband of Mrs. Donna Goth
Roland Seffern – Father of Noreen Gasparetto
From: Steven, Faye, Sari and Ivan Adelson From: Chris and Audra Herman, Judy Karle, and St Lucy's Parish Council Marta Kilp
From: Waldemar and Hedwig Jean Sosin
Holz, Mark and Denise Mansueto, From: Peggy and Dennis Frank, Leslie and Kenneth and Therese Wolicki, and Joel Litoff, LaGrasso Brothers, Inc., Couzens, Lansky, Fealk, Ellis, Roeder & Lazar, P.C., Carol and Chuck Valenti Sally Kucway
From: Julie Ellen Hoyt 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.
MGA NEWSLETTER • January - March 2013 HOLIDAY APPEAL DONATIONS David and Marjorie Horton Mary Pat and Greg Horton Mark and Nancy Hosking Michael and Ellen Jaffe Mary Lou Behmlander Howard and Judy Kander Jack and Frances Betteley Carl and Marion Knisely Joseph and Nancy Blumenthal Sharon and Dennis Kreza Philip and Karen Brewster James and Beverly Lavey Helen and Fred Brown Earle and Elaine Liss Dr. Martin J. Brown James and Robbin Mazur Rose and Walter Burniak Gerald and Denise McCarty Mr. and Mrs. Rick Carra Janice and Gregory Mendell Dolores Cartwright Mr. and Mrs. William J. Minore Dennis and Belinda Castagna Richard L. Morgan Carolyn and Charles Caulk Nora Lynn Napolitan Endowment Fund Martin and Sally Cayley John and Suzanne Nicholson Kay Connelly and William Chamness Mary and Ted Ciagala Reedal and LaVonne Ogilvie Jeanne M. Coddington Robert and Peggy Okray Victor and Zan Coen Christina M. Pitcher Raymond and Patricia Reske Gary D'Alessandro Charles Dalgleish Sal and Sue Rocca Lynn and Harvey Rubin Richard E. Durkin Richard and Madalyn Shier Stanton B. Elias, M.D.
Dale and Diane Shomo Raina M. Ernstoff, M.D.
Donald and Janice Ferencz Mr. and Mrs. Raymond Sliva Mary Ellen Flecksteiner H. Owen and Joan Smith Mr. and Mrs. Ronald A. Smith Richard and Stephanie Giba Sharon and Walter Storrs, III Garth and Kathy Groman Donald J. Sullivan Guilford and Patricia Forbes Mr. and Mrs. William Swartz Otto and Helga Freitag Mary Boyer Taylor Mary Patricia Garr Dr. Stephen and Paula Tepastte Bruce and Joanne Godfrey Roger J. Visocchi Walid Harb, M. D.
Jacqueline, John Walker, Ruby Shaw Sheila and Gary Hatch Robert Weidenbach Dennis and Sally Henry Robert L. and Patricia A. Williams BettyJ. and William D. Hewitt Beverly and Jeffrey Yachnin Lorna and Norman Holtzman MGA NEWSLETTER • January - March 2013 MEMBERSHIPS AND DONATIONS DONATIONS OVER $500
Dorothy French, Wanda Gadamoski, Philip and Karen Brewster, Betty and Harvey Golz, Leonora Greenhill, Janet Gooding, Edward Kaiser, Gina Gregory, Florence B. Halloran, Donald J Sullivan Dennis and Sally Henry, Betty J. Hewitt, Ernie and Shirley Hodas, Leanne Hosking, Mark and Nancy Hosking, Richard Jensen, Ronald David, Donald Ferencz, Cynthia Jones, Judy and Howard Kander, Richard Giba, Jake and Dianne Jacobsen, Harold Kluck, Carl Knisely, James and Matthew Sosin, and Robert Weidenbach Beverly Lavey, Harry Lewnosky, Earle P. Liss, Mary Marculewicz, James Mazur, CIRCLE OF FRIENDS
Kathy McCurdy, Bernard McDonald, Dean and Lisa Ackerman, William and Mary Minore, Richard L. Morgan, Joseph W. Blumenthal, John and Suzanne Nicholson, Mr. and Mrs. Lewis Castagna, Carmen Norkiewicz, Susan Prady, Gary D'Alessandro, Otto and Helga Freitag, Victor Quigley, Natalie Reddick, Dr. and Mrs. Walid Harb, and Miller Vein Raymond and Patricia Reske, Lois Rice, Diane Robinson, D. Martin Scott, Dale J. Shomo, Raymond and Coralie Sliva, Carole Arcy, Helen and Fred Brown, William and Virginia Swartz, Mary Boyer Taylor, Charles F. Caulk, Molly Clinton-Steele, Sheryl Thomas, Jacqueline Walker and Jeanne Coddington, Mary Dirkes, Ruby Shaw, Mary Ward, Jeannette Williams, Janice Friend, Amelia Gralewski, Douglas and Joann Yam, and Leona Zyber.
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., Menchie's Canton Center – Fundraiser In Lynn Rubin, H. Owen and Joan Smith, Memory of Ed Barszcz Linda Smith, Ronald and Dorothy Smith and American Express Charitable Fund Jeff and Beverly Yachnin 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,
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.

You are asked to fill out and sign this Pledge Form to officially designate your gift to the The Myasthenia Gravis Association 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: _ Please sign and complete form and mail to: Myasthenia Gravis Association

1000 John R, Suite 111
Troy, MI 48083
Your continued support is greatly appreciated
MGA NEWSLETTER • January - March 2013

• 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
eel alone with their disease.
MGA NEWSLETTER • January - March 2013 MYASTHENIA GRAVIS ASSOCIATION 1000 John R, Suite 111 Non-Profit Org.
January - March 2013


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General guidelines for agitated patients in palliative care

Symptom Management Pocket Guides: DELIRIUM DYSPNEA NAUSEA & VOMITING PAIN LOSS OF APPETITE BOWEL CARE ORAL CARE August 2010/July 2012 Table of Contents ESAS…………………………….………….97 Click on hyperlink to go to specific symptom. Delirium Considerations ……………………….…… 1 Assessment ………………………………… 2 Diagnosis ……………………………………. 3 Non-Pharmacological treatment 3 Pharmacological treatment …….… 5 Mild Delirium………………………….…. 6 Moderate Delirium………………….… 6 Severe Delirium ……………………….… 7 Adverse Effects …………………………. 7 Selected References …………………. 9