Myasthenia Gravis Manitoba Inc.Myasthenia Express
Myasthenia Gravis Manitoba Inc.
March 2008 - Vol. 1 No. 25
Verna Kapkey 339 Boyd Ave, Winnipeg, Manitoba Canada R2W 1P1, 1-204 582-5456
Our next meeting will be held on March 20, 2008 at the St. Boniface Hospital in rooms AG 001 & 2 in the basement, south entrance, at 7.00 P.M.
Our last meeting before summer will be held on May 15, 2008. Bring your family and friends and enjoy the evening.
We had our bake sale January 19, 2008 at Garden City Mall and it was very successful and we had a fabulous time.
I would like to thank all the members who baked, worked at the sale and for those who could not attend or bake, thank you for your donations.
Presidents Report by Diane S.Kowaliuk
January 24, 2008 we had our Christmas Party at Club Regent, we started our evening with supper at the La Palmas. After supper some members played the machines and others went to listen to the free band playing. A great time was had by all.
We lost a very significant member to our executive and chapter, George Sinclair. George was very active in our chapter on the phoning committee. We would like to extend our sympathies to his family. We would also like to thank George Sinclair family and friends for their donations made to our chapter in memory of George.
I would like to thank all members for their commitment and support they shared with one another and I would like to thank the executive for their support and commitment to this chapter.
The new year is upon us and I would like to try a new initiative, we ask each member to bring to the meetings a support person for them, which could be their family and/or friend We cannot stress how important that family and friends need to understand what a person with MG is going through.
Myasthenia Gravis and Lifestyle Tips
Do’s and Don’t
The first step to managing your condition is to accept that you have it. From then on you can move forward. An early lesson that all Myasthenic’s should learn is that Myasthenia and emotions are very poor bedfellows. Patients must accept the disease and learn to live with it and at the same time, try to arrange their lives so that they avoid situations leading to distress, anxiety, and emotional crisis, etc. Develop a positive attitude, and remain cheerful.
Do visit your doctor at regular intervals.
Do eat sensibly and drink plenty of water.
Do use any labour saving devices you can get.
Do remain within your capabilities, pace yourself, learn to accept your limitations, and when you’re tired, you must rest.
Remember that symptoms vary in kind and severity from day to day. We are adversely affected by weather changes, and extremes of heat and cold. We can also be adversely affected by extremes of emotions. Ideally, the Myasthenic should live an utterly placid life in a perfect temperature climate, but since this is not always possible, we have to make the best of what life can offer us.
Don’t battle grimly on, determined “not to be a nuisance.” If you can’t manage something, swallow your pride and ask for help.
Don’t rush. If it looks like you will miss the bus, let it go. There will always be another one coming soon.
Don’t try to exercise affected muscles beyond normal usage, because this leads to needless exhaustion.
Don’t take any medication unless you have checked with your doctor first.
Don’t get into highly stressed or emotionally charged situations. Live as placid life as possible.
Don’t have very hot baths. If it is possible, have a shower instead.
Don’t try to eat huge or heavy meals. Little and often is easier and more sensible. Don’t fret if your MG takes a dip. Myasthenic's have their ups and downs like everyone else. Try not to become downcast or depressed.
Myasthenia Gravis and Family and Friends
Understanding your condition by family and friends is very important in the management of Myasthenia Gravis. You may look fine and healthy, but at the same time feeling terrible. Educate those around you by providing literature on the subject. It is wise to take them to your local support group, so that they may understand the illness better.
If your condition is particularly bad and you are often alone, arrange to have your family or friends check with you on a regular basis. There will be times when a helping hand will come in very useful. Learn to accept assistance when offered.
Emergencies
Educate family and friends on difficulties that you may encounter in a crisis. You may want to provide a list of symptoms that might be suffered so that they have a checklist of questions to ask during the crisis. You may have trouble breathing, or unable to swallow, choking, unable to speak, etc. Then develop a system of communication if you are unable to speak. An example could be using a telephone receiver. (1 click for “yes” and 2 clicks for “no”)
Wear a medical alert bracelet detailing your condition and the medications you are taking, and carry an MG information sheet with you in case you suffer a crisis outside your home. This will save doctors valuable time in treating you. Take the information sheet to the hospital with you as hospital staff may not be familiar with MG. Make sure you hand the information sheet to the doctor or nurse looking after you. Provide as much information as possible on what you are experiencing. ( e.g. difficulty swallowing, difficulty breathing, tightness of chest). It is crucial that the symptoms be thoroughly explained to hospital staff.
Medication
You should always check with your doctor before taking any medication that is not related to your MG as certain drugs will make your Myasthenia Gravis worse. Neuromuscular blocking drugs are obviously drugs that myasthenic's should be very cautious of taking.
Support Groups
Support groups are very beneficial in that members will learn that they are not alone in their battle with MG. They also have the opportunity to share their experiences and ask questions. They will make new friends and help others in the process.
Internet Source
WHAT IS A MG SUPPORT GROUP?
IT IS NOT group therapy. There is not psychological jargon or probing into one’s personal life, your participation can be just listening and not talking.
IT IS NOT a cure for MG or some magical experience that enables you or your loved ones to breeze through life with MG.
IT IS NOT a gossip session that talks about who was seen at which doctors office and complain about your doctor.
IT IS NOT when someone goes into remission that they stop attending the meeting because they do not feel sick. It is about attending the meetings to help others have hope and inspiration.
IT IS about sharing helpful hints in dealing with doctors, employers, relatives and household barriers.
IT IS for your spouses, family members and friends to share the trials and tribulations in your day to day living and discuss amongst your support group ways to gather hints on how they deal with these problems.
IT IS about a young married couple who just found out one of them may have MG and they want to know more about the disease in clearer terms and they want and need hope.
IT IS about learning to cope with the tremendous amount of stress put on relationships and families.
IT IS listening to guest speaker’s presentations and participating in the question and answer period to help us cope better.
IT IS about you, me, and others who gather together and become concerned about what is happening in our lives. A sharing of information with the support group, on how to live with MG and being presented with the challenges to keep functioning at the highest level possible.
The name myasthenia gravis comes from the Greek and Latin words meaning “grave muscle weakness.”
One major mystery remains with MG: no one knows yet what sparks the disease or triggers the autoimmune process that causes the body to make the destructive antibodies.
Meeting with Verna Kapkey, Manitoba MG Chapter, and Georgina Wagar-Patterson, MGFA MN State Chapter.
You first contacted me after your husband passed away from complications of Myasthenia Gravis back in the late 80's. I wrote to you, sent you literature, we chatted a few times on the phone too. You expressed that you felt no one knew much about Myasthenia Gravis in your area and if you could in some way help others you wanted to do that in memory of your late husband.
I shared with you that I had been finally been diagnosed with Myasthenia Gravis after many surgical procedures, (perhaps some were not necessary) and I just was getting weaker, then after all I had been through some doctor's thought the symptoms were all in my head. I finally decided to go to the University of MN Hospital for consultation. After many tests and properly diagnosed, treatment for Myasthenia Gravis was started in the early 70's. As I kept getting weaker even after treatment was started, my neurologist suggested I have a "Thymectomy" hoping to have a chance to lessen my symptoms and maybe go into a remission in time. I did have that surgical procedure done,and had complications so was hospitalized many weeks. Since I had gone through a lot before being diagnosed and after, I could relate to your feelings about getting the word out to other patients/family members feeling alone, and needing a group/chapter to contact to learn more about MG and share their feelings.
I told you that once I started to get stronger,my (first) husband Edward Wagar and I decided to attended a MN State Chapter Annual meeting in Rochester, MN in 1983. It was a chance to finally meet other Myasthenics,and just learn how they were living and coping with this serious disease.
After that Annual State Chapter meeting I had sent a letter to the local newspaper to have an article printed for "MG Awareness Month" in MN. In place of them doing that, a reporter called me, asked if she could come to my home, interview me about living with MG since they had never heard of the condition before, they felt it would be nice to do a "personal interest " story on a "Lady Living With A Rare Disease." So, that was done, they put the story in the Sunday issue of the Duluth News- Tribune Paper which goes all over MN and WI. Shortly after that article I got letters and phone calls from other patients and family members wanting to talk, share their feelings and it was so amazing to know others were going through what I was/had as well. We soon felt a need to get together and share and learn from one another. So, that was the "birth" of the NE MN Support Group,the First one going Support Group in MN. (we will be celebrating our "25th" Anniversary this year) We drew patients/families from International Falls to Askov, MN and areas in between, also in WI. We enjoyed each other, had lunch together and in time finally began to ask medical professionals to attend and speak to our group so we could learn more about our disease.
The Northland Chapter of MDA contacted me and soon they would send a Patient Service Coordinator to attend our meetings too. Some of us started to help on the local Telethon, they did clips of our group for many years. We still have a good relationship with them here in the Northland and have over 20 years.
Shortly after I started the group and it was going well, I was asked to become Treasurer for the MGF MN State Chapter, and also join their Board of Director's. I held that position for two years. In 1985 I was elected to serve as Chairperson for the MN State Chapter so took over that Office in January '86. I felt that was a real honor even though it was a volunteer position and a lot of work. I feel I touched many lives during the many years I served in that position. I sent out many packets of literature to patients/ family members/medical professionals. Typed up and Ed helped me send out about 1,200 Newsletters quarterly all over the US as well as to Thirteen Foreign Countries. I had some wonderful friendships develop during the many years I was chairperson. I also helped plan our Annual State Chapter meetings along with our board members, attended several National Meetings which were very interesting and the opportunity to meet other patients from all over the US and Canada.
Knowing you were making arrangements to start a Chapter in Winnipeg. I invited you to attend our MN State Chapter Annual Meeting and Board of Director's Meeting, (held the day before) which was held at The Marriott Hotel in Bloomington, MN in 1990. I thought you may enjoy seeing what we did at our meetings. After the board meeting you and Ed and I went out to dinner, had a nice visit and really got to know one another. You were such a delightful friend.
Then the next morning at our Annual meeting I introduced you to our chapter members. You spoke about getting your Chapter organized, and your mission to help others living with Myasthenia Gravis. Soon your Chapter was started and doing well. Soon you did a fundraiser, I recall you were doing to do a "Cook Book" and asked if our members would like to send in recipes too. Was fun to keep our relationship active and learn from one another. Over the years we were in touch often. Then my husband Edward passed away and for a period of time I didn't do as much at the State Chapter level, mainly kept the NE MN Support Group going. But, we still kept in touch. I recall you and Stan came to visit Ed and me in Duluth in the late 90's before he passed away. It was fun to see you and we had a nice visit. In 2001 I remarried Earling Patterson, he was a member of our NE MN Support Group and also had Myasthenia Gravis. So, we then started to once again attend the MN State Chapter meetings. Soon after we married in 2001 I was again elected to serve as Chairperson for the MN State Chapter. So, I did it for a couple years until our chapter could reorganize and get back on track again.
In February of 2002, Earling and I were delegates to the "50th" Anniversary meetings of the National Foundation held in Las Vegas. We had a nice time, meetings were very informative, met some delightful patients. We also got to meet and visit with Patricia Ellsworth Wilson, whose mother Jane Dewey Ellsworth was instrumental in getting the National Foundation started after Patricia was diagnosed with Myasthenia Gravis as a young girl. We just clicked and we visited with her and her husband Larry several times during those meetings.
The MN State Chapter was going to celebrate it's "30th" Anniversary in September of 2002. After returning from the National Foundation meetings, I got thinking that since we were having a special occasion the same year, maybe our members would enjoy meeting Patricia Wilson and hearing how her mother worked hard to start the National Foundation 50 years before. So, in talking with our board members, I contacted Patricia, asked if they would like to come to MN and if she would like to share her story, they were happy to be invited. Then I contacted Dr. Vanda Lennon, who has been on our MAB from the Mayo Clinic for many years. Asked if she would like to be our Keynote Speaker for the event. She gladly accepted, also recommended, neurologist Dr. Brian Crum become one of our Medical Advisory Board members. So, at that meeting he was accepted. Together they did the Medical Presentation and Question/Answer portion of the program.
The MN State Chapter Meeting was held at the Hampton Inn in Shoreview, MN. I asked if you and Stan would like to come to our special event too. You came, it meant so much to me Verna as our friendship had gone back many years. At our Business meeting that morning you spoke to our group, presented me with a" Certificate of Appreciation" from your Chapter. I felt so honored at the kind words you said, and your presentation. The day was busy, started in the AM with our Business Meeting, Invocation, Brunch, Talk by Patricia Wilson on her Mother starting the National Foundation, Meetings members of the National Foundation Office, our Annual Raffle, Keynote Address by Drs. Lennon and Crum, Silent Auction, was a nice meeting, well attended by about 90 members. We ended with refreshments and goodbyes.
For those of us that stayed over a couple days we had the chance to get together and have lunch/dinner and visit after our meetings. Was fun to have that time to enjoy one another's friendships. Share ideas and it meant so much to me that you and Stan Klos could attend.
Georgina Wagar-Patterson
A special Tribute to Georgina Wager-Patterson of Duluth, Minnesota
It was indeed a gift to have met Georgina at a time in my life when I needed encouragement and understanding. When I made my first trip to attend the Minnesota State Chapter Annual Meeting, I learned the value of sharing knowledge and the closeness of moral support and how much we can learn from one another. Georgina’s involvement with the support group was an indication of how valuable it is to share your feelings and attitude towards illness and stress. Over the years Georgina has shared literature with our chapter and has always helped me with various problems that may come up and has always been there for me as a friend whenever I needed advise or just someone to share a problem with. She has overcome many hills and valley’s in her life and has endured many challenges but she always has hope and continues to share her strength with others. I wish to express my sincere gratitude to Georgina for being my close friend and sharing her moral support for so many years.
Your Canadian friend,
Verna Kapkey, Winnipeg. Manitoba, Canada
Myasthenia Gravis
Manitoba Inc.
Chapter Directors:
Gary Parker
Verna Kapkey
Roger Ross
Resource Person:
Anyone needing social or health care services or any of the wide variety of organizations in our community contact our resource person for information. Doreen Amadatsu at: 888-8628
Our drug alert card has been printed “Drugs that Cause or worsen the symptoms of Myasthenia Gravis.
If you have not received this card contact Verna at 1-204-586-6784
Please note:
This newsletter is intended to provide the reader with general information to be used solely for educational purposes, and that any medical views expressed in this newsletter are those of the individual author and do not reflect any official position of the Myasthenia Gravis Manitoba Inc. Chapter. Always consult your physician or health care professional for medical advice.
Ask your Pharmacist for help in choosing Nonprescription Medication
Your pharmacist can help you decide if it’s safe to treat your symptoms by yourself or if you should see your doctor.
He can help you choose a medication that is best for you.
He can explain how to take the medicine, and for how long, and tell you about the common side effects.
He can inform you about other ways to help you feel better and stay healthy.
He will consider other medicines you take to make sure they don’t interact with each other as well any allergies or other health problems you have.
Ask your pharmacist about the best relief for coughs and colds, fever, allergies, pain, infections, stomach problems and other discomforts.
Read the label carefully and follow the directions. The label tells you what you need to know to use the medication so it works and is safe. Ask if you are not sure.
Know if you should avoid any foods, alcohol or other medications when taking a nonprescription product.
Your pharmacist is your medication expert and can provide advice and information on a wide range of health issues.
Antibiotics
Do talk to your doctor and pharmacist about how to take antibiotics-how often, for how long, with or without food.
Discuss when you should feel better and what side effects may occur.
Do take all of your antibiotics even though you may feel better after a couple of days. If you don’t finish, all the bacteria may not be killed and you may get sick again. The stronger bacteria can survive and become resistant, causing infections that are harder to treat.
Do report any drug allergies you have to your pharmacist or doctor. Also, make sure they know about all the medicines you are taking (prescriptions, nonprescription and herbal products.
Famous Sayings:
To be successful you must accept all challenges that come your way. You can’t just accept the ones you like.