Myasthenia Express

Myasthenia Gravis Manitoba Inc.

October 2010 - Vol. 1 No.29

 

Presidents Report

By Diane S. Kowaliuk

Our next meeting will be on November 18, 2010, starting at 7:00 pm sharp.

At this meeting we will hold our annual elections.  Remember our chapter cannot function with only a few people doing all the work.  If we all participate a little bit, it is not as taxing for just a few members.  I ask the members for your support and assistance on these vacant positions.

After elections, we will be having Frances Irving – Tai Chi Instructor to show us exercises that a Myasthenia Gravis patient can do to maintain the flexibility of your muscles. Assisting Frances will be Mary Ross. After the demonstration we will be having an open discussion, especially for our new members to ask questions accordingly.

Membership renewals fees are due in November. Please see the back page of this newsletter for more information.

At our September 17, 2010 meeting we celebrated our 10th year anniversary as an independent charitable organization “Myasthenia Gravis Manitoba Inc.” We celebrated by ordering in pizza and had an open discussion on the trials and tribulations we currently are facing.

January 2011 we call upon our members for support and assistance for our bake sale which will be held at the later part of January 2011.

Once confirmed, the exact date will be posted on our website http://mginc.mb.ca. Due to the bake sale in January we will not be holding our regular meeting at St. Boniface Hospital. The Social Committee will be advising us where our Christmas gathering will be taking place in January 2011 and it will be posted on the website as well.

The executive would like to thank all the members for the wonderful support and assistance you provided us in 2010. Great job!

I would like to thank the executive for all their support and assistance they provided the Chapter thru the year. I would like to give each and everyone of you a big hug and a pat on the back!

Diane S. Kowaliuk

 

Code word: Mountain Goat

I am often asked how I have maintained such a positive attitude through my illness and remission. Truly, one of the keys has to be my warped sense of humour and ability to laugh at my shortcomings…at 5’2” there are a whole lot of “shortcomings” jokes to be had. I definitely went through the shock, depression and grieving process that anyone with a chronic illness will experience, but I do credit my ability to find the silver lining in a storm cloud the size of Texas for the absolute completeness of my remission. Throughout my sixteen years with MG, I have had more than a few laughs. One of my favorites has to be from June 2003.

I was enroute to a corporate retreat with colleagues from across Canada in the picturesque Jasper National Park. One of my colleagues, her new born son and her nanny accompanied me in the rental car from Edmonton to Jasper. I sat in the front passenger seat, my co-worker drove and the baby and nanny rode in the back seat. Along the way, my co-worker asked me how I was feeling with respect to my MG symptoms. The nanny had no idea about my health issues so she piped up and asked what the MG stood for. As I turned around in my seat to start my usual condensed explanation of MG, I was distracted by some wildlife on the mountain side and yelled out “MOUNTAIN GOATS!!!” At first I didn’t realize the irony of what I had said, but the look of utter confusion on the face of the nanny and the peels of laughter from my co-worker quickly had me laughing too.

A while later, after settling in at the resort and meeting up with other colleagues, our little story was relayed to a friend of mine, James, from my office…needless to say, even though he and I do not work together any longer, he still calls me “mountain goat” when ever we meet up.

The following day, we were split into teams for a team-building game based on the popular reality show, the Amazing Race. James and I were on the same team. The game was physically challenging and although I was no longer on medication, I still experienced some level of MG symptoms. During the race, each team would have to complete a challenge at a station, and then would be given a clue to lead them to the next activity. The first team to complete all fifteen or so activities would be the winner. We were doing well, but I was definitely weakening. We had a chance to win, but the final station required my entire team to jump rope together. We had to jump the rope ten times without missing. I was one of the jumpers and James was one of the rope turners. I would do okay for two or three jumps and then my legs would just slow down and not respond fast enough. My teammates, other than James, had no idea that I had any health issues. After the third failed attempt, I looked at James and said four words: “Switch? Mountain goat moment.” He smiled, handed me the end of the rope and we finished on the next attempt. I believe we finished in second place…but for me, just finishing at all was a huge victory!

The best feeling about that moment was being able to convey my message to a trusted friend without anyone else on my team being the wiser. I, like most, did not want my disability to be front and center. Had James not been on my team or if we hadn’t inadvertently created the code-word “mountain goat”, I would have felt pressure to explain my MG to a group of strangers in a high-pressure situation. I think everyone with MG should have a code word shared only with those close to them, to let them know when symptoms are worsening and perhaps it’s time to help or to quietly leave a social event and get some rest. Let’s face it, when we are feeling weak, having to give long explanations is the last thing we need. Who knew a prairie girl like me would learn to love mountain goats so much!

Corinne Elson

Newsletter Editor

Email: scelson@mts.net

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Get Better Together! is a free six-week workshop designed to help Manitobans with ongoing health conditions to take control of their health. Learn to solve problems and set goals to live a better life in each of the 2½-hour sessions. You'll receive a copy of the book Living a Healthy Life with Chronic Conditions and you're welcome to bring a support person. The program is also available in French.

Sessions are available at various locations throughout Winnipeg and in communities across the province.

Please go to http://www.wellnessinstitute.ca/gbt for more information on locations, dates and how to register. Don’t miss out on this fantastic opportunity!

Employment Assistance Services

Returning to the work force after a forced absence due to a disability can be very challenging. You’re not alone. Take advantage of some of the resources available here in Manitoba.

Reaching E-Quality Employment Services Society for Manitobans with Disabilities

305-1200 Portage Ave. 825 Sherbrook Street

Winnipeg, MB R3G 0T5 Winnipeg, MB R3A 1M5

Tel. (204)947-1609 Tel. (204)975-3010 or 1-866-282-8041

Email: info@re-es.org Email: info@smd.mb.ca

Website: www.re-es.org Website: http://smd.mb.ca/employment_services.aspx

 

Podcasts Now Available from The Myasthenia Gravis Foundation of America, Inc.

NEW PODCASTS

You can now listen to three new patient oriented podcasts related to myasthenia gravis on the MGFA website (www.myasthenia.org). These were produced by Dr. Ted Burns of University of Virginia for MGFA featuring M/SAB members Dr. Don Sanders of Duke University, Dr. Bob Pascuzzi of Indiana University, Dr. Gil Wolfe of University of Texas Southwestern and Dr. James Howard of North Carolina University.

What the patient and caregiver should know about prescription drugs and MG

Dr. Ted Burns from the University of Virginia talks with Dr. Gil Wolfe from the University of Texas Southwestern and with Dr. James Howard from the University of North Carolina. The participants discuss the use and management of drugs use for other conditions in the context of a diagnosis of MG. They discuss which drugs are best to avoid, if possible, and offer advice on how patients and families can work with clinicians to navigate through the list of potentially dangerous drugs.

A brief overview of myasthenia gravis, part I: clinical manifestations and diagnosis of MG

Dr. Ted Burns from the University of Virginia talks with Dr. Don Sanders from Duke University and with Dr. Bob Pascuzzi from Indiana University. They discuss the common presenting symptoms of MG, what symptoms should be of most concern to the patient and family, how the diagnosis is made and that natural history of MG.

A brief overview of myasthenia gravis, part II: review of the cause of MG, brief overview of treatments and a discussion about vaccines and MG

Dr. Ted Burns from the University of Virginia talks with Dr. Don Sanders from Duke University and with Dr. Bob Pascuzzi from Indiana University. The participants review the cause of MG (autoimmune), briefly introduce the topic of treatment (which will be discussed in more detail in another MGFA podcast) and talk about the safety of vaccines for patients with MG.

The podcasts are available at http://www.myasthenia.org/podcasts.cfm

We encourage you to listen to the podcasts. You should also inform your primary care doctor, your neurologist and nurse about where to find them.

As always, consult with your physician directly before making any medical decisions.

AMPS: MG Ontario Newsletter, May 2010

 

Taking control: Tips on talking to your physician

Many of us grew up believing that doctors are supposed to know everything and should be the ones who ask us all the right questions. These days, there is a lot more responsibility on the patients to ask the questions and to bring up the symptoms and concerns they are experiencing. Like most of us in the working world, physicians are expected to do more work in less time. The current Canadian physician shortage has meant squeezing in more patient appointments to their day and leaving much less time to ask detailed questions.

As the patient, you have a responsibility to yourself and your family, (let’s face it, your health affects them too) to learn to speak to your physician with confidence and ensure you get the care you need. After scouring the internet, I believe I have a failsafe list of tips to help you prepare for your next physician visit.

  • Start and maintain a health journal. This will help you track major events in your health history including diagnoses, surgeries, hospitalizations, allergies, injuries and medications. It is also important to record your genetic health history. For MG patients, a daily or weekly entry to record strength levels, stressors and effects of medication adjustments is invaluable.
  • Prepare your questions and write them down. They should be written in order of priority to ensure that you get the most important ones answered. If you can’t get through them all in the time allotted for your appointment, ask the doctor for more time or to schedule a second appointment. Alternatively, perhaps you can ask to sit with a nurse to review the rest of your questions.
  • Ask for clarification and written information. If you find the words are not familiar or are confusing make sure you ask for more information. Knowledge is vital in the battle of any chronic illness. I asked the doctor who diagnosed me to write down “Myasthenia Gravis” or I never would have remembered it by the time I left the clinic.
  • Don’t be afraid to call the doctor’s office after your appointment. Make the call if you have new questions or if you are feeling worse. Changes in medication may not work and your physician needs to know if the old treatment was actually more effective or if you need to explore yet another option.
  • Ask a family member or trusted friend to come with you. If you do not feel confident in speaking with your doctor on your own, then bring someone who will. Discuss with them in advance what you need from the appointment and ask that they support you by keeping you on track to get the answers you need during the appointment. Just keep in mind, the doctor still needs to hear directly from you. The support person should only be there for moral support and to encourage you to speak up.
  • Finally, remember that physicians are just people too. From my experience, physicians respect when patients speak up. We are often afraid we will sound like complainers or we feel intimidated, so we downplay our symptoms. Never exaggerate, but you will not help yourself by hiding or being embarrassed by your symptoms. We’ve all fallen victim to Murphy’s Law and have felt better than usual on the day of an appointment. Make sure to let the doctor know what is more typical, if you normally do not feel as well. Remember, both you and the physician ultimately have the same goal…a healthier you!
    •

    By: Corinne Elson

     

    I have MG; is it safe for me to get the influenza vaccine?

    The following is a summary (or abstract) from a professional research study relating to Myasthenia Gravis. It is provided for information only and the intention is to keep patients and providers up to date with current MG research.

    Safety of influenza vaccination in patients with myasthenia gravis: a population-based study.

    Muscle Nerve. 2009 Dec;40(6):947-51

    Zinman L. Thoma J. Kwong JC, Kopp A, Stukel TA, Juurlink DN.

    Department of Medicine, Sunnybrook Health Sciences Centre, Toronto, Ontario

    Influenza vaccination has been associated with adverse events including Guillain-Barre syndrome. Because the safety of influenza vaccination in patients with myasthenia gravis (MG) has not been established, some clinicians discourage vaccination for these patients. We explored whether the administration of influenza vaccine to patients with MG might increase the risk of myasthenic crisis. Using population-based healthcare data from Ontario, Canada from 1992 to 2007, we utilized the self-matched, case-series method of detecting adverse events following vaccination. We studied patients with established myasthenia who where hospitalized for MG within 42 weeks of influenza vaccination. We defined the primary risk interval as the 6 weeks following vaccination. Between January 1, 1992 and March 31, 2006, we identified 3667 hospital admissions for MG. No seasonal trend in MG admissions was evident. In 513 instances, hospitalization occurred within 42 weeks following vaccination in patients previously diagnosed with MG. Among these patients, 266 (52%) were men, the median age was 74 years, and 86 (17%) had previously undergone thymectomy. The estimated relative incidence of admission for MG in the primary risk interval compared with the control interval was 0.84 (95% confidence interval .65-1.09). We found similar results in stratified analyses according to gender, age, and thymectomy status. Vaccination of patients with MG against influenza was not found to be associated with exacerbations of the disease. Our findings do not support the practice of withholding influenza vaccination in patients with MG.

    AMPS: MG Ontario Newsletter, August 2010

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    The only known cure for Swine Flu has been found to be the liberal application of oinkment. (Source: the web)

     

    Surviving the Holidays…

    The holiday season is just around the corner; the season of joy, laughter and good will. But what if you don’t have the strength and energy to truly embrace the season? Here are a few tips for surviving and actually enjoying the holiday season this year.

    Shopping: Both the best and worst part of the holidays all rolled up in one. Nothing beats the feeling of giving the perfect gift, but finding the energy to get the shopping done is not an easy feat. Here are a few tips to make the job a bit less stressful:

     

    Social Events: Get out and have some fun, just don’t forget to look after your health as well. The credit card bills are enough of a hangover in January, you don’t want to add a worsening of your MG symptoms.

    If you have a big event or family celebration, do not plan any big outings or projects the few days before; save up your energy. Have a code word or signal for whoever accompanies you so they know when it is time for you to leave with as little fuss as possible. The temptation to stay too long is difficult to avoid, but listen to your body and know when it is time to go.

    If you host, purchase pre-made food platters or use services like Supper Central, where they do all the prep work for you. If you can afford to, treat yourself to hiring a cleaning service. The extra cost is well worth it by allowing you to save enough energy to enjoy the event. Make sure you arrange to have a co-host who can carry on seamlessly if you need to sneak away to rest.

    Most of all, remember, the holidays are not about perfection, but sharing special memories with those we love…may laughter fill the memories you make this season! - Corinne Elson

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    Resources:

    MG Manitoba Inc. Website: http://www.mginc.mb.ca

    The third edition of the book, You, Me and Myasthenia Gravis, by Deborah Cavel-Greant, is available for purchase for $20.00.

    Contact Verna Kapkey at 204-586-6784 or mginc@mts.net

    Our drug alert card has been printed “Drugs that worsen the symptoms of MG”

    If you have not received this card contact Verna at 1-204-586-6784

    Myasthenia Gravis Manitoba Inc.

    Membership Fees:

    $10.00 -- Family

    $ 5.00 -- Per Person

    Please submit your fees

    or donation to:

    Myasthenia Gravis Membership

    Maureen Silk

    614 Munroe Avenue

    Winnipeg, Manitoba

    R2K 1H8

    Literature

    If you, or someone you know has Myasthenia Gravis and needs information on the illness, we do supply literature, in the form of previous articles, pamphlets, etc. for members and their families.

    Contact, Verna Kapkey at 1-204-586-6784 or mginc@mts.net

     

    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.