there is hope through ‘contact’ › mg-canada-newsletters › contact-2017-novemb… ·...

Myasthenia Gravis Society of Canada

1 November 2017 www.MGCanada.org

There is Hope Through ‘CONTACT’ Printed in the interest of those

affected by Myasthenia Gravis

Quarterly News Volume 41 Issue 4 November 2017

Good News! Our November 2017 Newsletter happily reports on a very

progressive MG Canada year with much that’s very positive.

In particular, the increasing engagement of fellow MG patients through our Myasthenia Gravis Support Canada Facebook group. ‘Contact’ November 2017 has several excerpts of ongoing dialogue.

Dramatic increase of MG Canada collaborative engagement

with MG Health Care researchers. We are currently participating or considering 4 different MG Patient assisted research projects and more to come – hopefully across Canada. Our guest speaker for December 3, 2017 MG support Toronto meeting, Neurologist Dr. Aaron Izenberg, is with Sunnybrook Health Sciences. He will tell us more on his “MG and pregnancy” study. Early success with our “MG Fit” campaign is very encouraging. Current campaign runs until the end of February 2018 Continued on Page 2

MG Canada Support Meeting Sunday, December 3,

2017. See Page 3 & 4

November 2017 MG Canada

President’s Memo.




c/o 247 Harold Avenue, Stouffville, Ontario, L4A 1C2 Phone 905 642 2545 www.MGCanada.org

Do you have an MG article of interest to “Contact”?

Please forward to [email protected]

Articles in the Myasthenia Gravis Society of Canada Newsletter

express the views of the author and are for information only, not

medical advice. Patients should consult with their physicians for

medical treatment.

MG Canada’s Newsletter “Contact” is published by

President’s Message Cont. from Page 1

We are getting close to the launch of our Canadian National

“Could It Be MG?” campaign. Our objective is to reach Canadians with our Myasthenia Gravis awareness and education campaign. Simply put we are confident that many Canadians remain undiagnosed of probable Myasthenia Gravis. “Could It Be MG?” will help improve both awareness and diagnosis time which currently averages 2 years.

Your MG Canada Society is working hard to support MG Patient,

Caregiver, Health Care professionals and multi media with more MG education and better MG evaluation indicators. Much more to come in 2018. Worth taking the time to put the best collaborative teams together and get it right the first time.

Encouragement of many more “MG Fit Steps” teams to expand on our early fundraising success.

On a personal note, Betty and I had a great holiday in Virginia recently. Shenandoah Valley east of Harrisonburg. Alleghany and Blue Ridge Mountains. Last drink of intoxicating fall colours. 2 Local Blue Grass music “jams.”, two golf games. Modern Art Museum visit in Washington and home up through Pennsylvania with views seemingly miles and miles forever. Very calm, relaxing break. Hope to see &/or hear from you soon.

Have a blessed, peaceful, Holiday Season.

Sincerely, Cap Cowan, President, Myasthenia Gravis Society of Canada



Support Meeting for those living with Myasthenia Gravis,

caregivers, family, friends & interested others to meet.

Info at 905 642 2545 www.MGCanada.org


MG Support Meeting

Sunday, December 3, 2017 6-8 pm

Loblaws Community Meeting

Room, Bayview Village Mall,

2877 Bayview Avenue, North

York, M2K 2S3. (The Meeting Room is located

upstairs, S/W corner of the store, Elevator

access.) Public Transit Access, subway

access at Bayview Station on the Sheppard

Subway. Free Parking in Bayview

For this meeting, we request those members who are able, with last name

starting A-L bring a food item to share. Loblaws has

asked that any food served come from their store.

Speaker:

Dr. Aaron Izenberg

Neuromuscular Specialist Practicing at

Sunnybrook Health Sciences Centre

Have a Safe and Happy Holiday Season Best Wishes from your MG Directors: Odette Montelibano,

Lucien St Martin, Tara Buonpensiero, Cap Cowan



Sunday, December 3, 2017, Myasthenia Gravis Society of Canada

Support Meeting. Loblaws Community Meeting Room, Bayview

Village Mall, 2877 Bayview Village Mall, North York, M2K 2S3. 6-8

p.m. Info 905 642 2545.

Myasthenia Gravis Manitoba Inc. is holding a suppor t meeting

Thursday, March 16, 2018 and May 18, 2018 at 7:00 pm at

St. Boniface Hospital, 409 Tache Avenue, Winnipeg, Basement South

Entrance. Room AG001 & 2. Info 204 444 7802

MG Meetings Offer Opportunities to

Share With Others

director for neurology and the director of the urgent neurology clinic at Sunnybrook. Dr. Izenberg's clinical focus is in working with patient neuromuscular diseases. He follows a large volume of patients with Myasthenia Gravis.. See Page 3 for Meeting Details.

Dr. Aaron Izenberg, Neurologist, Sunnybrook Health Centre is Guest

Speaker at Myasthenia Gravis Society of Canada’s Toronto Support meeting

December 3, 2017

Dr. Aaron Izenberg is a neuromuscular specialist practicing at Sunnybrook Health Sciences Centre in Toronto. He completed his neurology residency at the University of Toronto, and a fellowship in Neuromuscular Medicine at Massachusetts General and Brigham and Women’s Hospitals in Boston. He is an Assistant Professor in the Division of Neurology, Department of Medicine, at the University of Toronto. He is the education site Dr. Aaron Izenberg

Continued on Page 5



Thank you for the support Myasthenia Gravis Society of Canada has received

from memberships, donations, and “Celebration of Life” gifts.

As well, the “I am $tepping Up for MG

Fit” Fundraising Campaign has resulted in significant donations. See pages 6 and 7

to find the details on taking part.

Proceeds are used for newsletters, internet, hosting support meetings and advancing education and

to contributing to Myasthenia Gravis Research. Donations can be mailed to Myasthenia Gravis Society of Canada,

247 Harold Avenue, Stouffville, Ontario, L4A 1C2.

905 642 2545

Or online at www.MGCanada.org/donate

Registered Charity#81155 1431 RR0001

Vancouver Island Support Groups: Contact information for Parksville is

John Skalos, North Island MG Association 250-754-9636. email:

[email protected]. For Victoria Dennis Shpeley, MG Victoria Support Group,

250-478-0131. email: [email protected].

The Myasthenia Gravis Association of BC hosts Suppor t Group Meetings

twice a year.. Contact Information email: [email protected] or call

604 451 5511 for 2018 dates.

MG Meetings Continued from Page 4



MG Fit intends to assist in the costs of improving awareness and support of MG patients, caregivers, health care professionals and MG researchers.

The MG Fit campaign fulfills the mission of MG Canada to promote the health of MG patients by providing access to information and support group programs; to advance MG education through seminars, literature and other multi-media communications; and to receive and maintain funds for qualified MG research, or researches for MG cure. See Donor Form on Page 7.

Moreover, MG Fit intends to be a sustainable platform for MG patients to achieve wholeness in view of the changed dynamics of their bodies, minds and spirits. Those living with MG eventually realize that they have a “new normal” which limits their capabilities. MG Fit promotes the acceptance of MG chronic realities which will allow patients to purse stability through treatment, and attain growth through the determination to live within their “new normal.” Thus, more than just an awareness and fundraising campaign, MG Fit gives patients the opportunity to achieve personal well being, and reach new levels of fulfillment and wholeness given the realities of the chronic disease.

Myasthenia Gravis (MG) is a rare neurological autoimmune disease that causes muscle weakness. There are several treatment options for MG patients, and no singular treatment works for everyone. As of today, no cure has been found for MG but it can be stabilized with treatment by a neurologist specializing in MG.

MG Canada, a registered not-for-profit organization with Charitable # 81155 1431 RR0001, estimates that about 30,000 Canadians may have MG, but many have never been diagnosed, or worse, have been misdiagnosed with other conditions

which can become life-threatening if they suffocate due to severe weakness of the respiratory muscles.

Continued on Page 7

What is MG Fit?

MG Fit is Your First National

Fundraising Campaign



Donor Form “I am $tepping Up for MG Fit!” Name:_____________________________________________________ Address:__________________________________________________

City____________________ Prov._______ P. C . ________________

Phone ____________________________________

Email: ____________________________________________________

I support MG Fit by donating: (Please select one)

___1,000 steps = $10 ___2,000 steps = $20 ___5,000 steps = $50

___10,000 steps = $100 Silver ___50,000 steps = $500 Gold

___100,000 steps = $1,000 Platinum Please indicate:

___Online donation ___Cheque donation

For online donations please go to

www.MGCanada.org & www.MGFit.org online donations will receive an automatic receipt

For cheque donations please write cheque and mail to:


247 Harold Avenue, Stouffville, On., L4A 1C1 Further information Email [email protected]

Or call 905 642 2545 or www.MGCanada.org/donate

Myasthenia Gravis Society of Canada is registered charity #81155 1431 RR0001. Tax Receipts for donations of $10 and over

are issued unless otherwise specified.



The background: I've had MG since 2007, officially diagnosed in 2008 (AChR Positive) with a cancerous thymoma which was removed via trans-sternal surgery and subsequently treated with radiation therapy. In 2008, I developed a radiation pneumonia (common issue with radiation therapy in the areas around the lungs). This resulted in an exhaserbation of my MG - I did not need mechanical ventalation at this time, but was hospitalized under oxygen and required plasmapheresis to recover well enough to get out. Over the next 9 years, I've been able to manage my MG very well with just Mestinon. Under direction of my neurologist I adjusted the mestinon up and down bits at a time depending on what I felt I needed. And I became quite complacent with the beast. As my neuro didn't really do anything for me with regular visits, these stopped and I relied on my GP for Rx refills. Meanwhile, MG continued to brew and build up antibodies slowly over time. Mestinon covered almost all symptoms. My "baseline" slowly decreased, but I put this down to other things. I slowly became able to walk shorter and shorter distances, but because I was walking shorter distances, I put this down to walking shorter distances (kind of the reverse of building up endurance.) MG was "under control", except it wasn't, it was masked but not controlled. At the end of this August, my family (wife, daughter and I) took a road trip to move my daughter into University in another province. This was about 40 hours worth of driving (and ferries) over several days across Cape Breton and Newfoundland. We had nice visits with friends along the way and this emotional uplift helped me dig down into my reserve tank to keep the MG hidden.

Thoughts on Complacency

(or MG Can Be Sneaky Sneaky)

By Brian Robichaud

From Facebook Support Group

Continued on Page 9



Ptosis (droopy eyelids) swapped sides, but this was put down to "only because of the flat light tiring out my eyes... everything was ok.... right?" (no) We got my daughter moved into her dorm and I was able to help carry, lug stuff in for her. We followed that up with the return drive home - not quite as long driving, but a longer ferry ride from the St. John's side (Argentia Ferry). Of course, once you're in North Sydney and have nothing you can do for the day anyway, except head home, you need to drive the Cabot Trail (add 5 hrs to the drive home.).

Over the next couple of months, my right side ptosis did not lift. My new normal had so gradually crept up that I actually deluded my-self into wondering if I was taking too much Mestinon and if I should try cutting it back (sneaky sneaky MG and complacency.) I did try one day not taking the initial dose of the morning and immediately determined this was not the case. So, I figured my task now was to find the new right dose of mestinon to get that right side ptsosis to lift. Again, I was wrong... I was slowly crashing but doing it so slowly I didn't recognize it happening.

October: My dad has been on the lung transplant list for quite some time and was reaching the end of remaining viable for this treatment. I went to Toronto mid October for a visit and had a nice last visit with him. We sat quietly and just had time together—him reading his book, me reading mine. I still had enough reserves to run errands for my parents and burned them with no regard for the MG. My mother noticed I was looking tired but I kept putting off her concerns and tried to direct all of her energy towards being with my dad. In the back of my mind, the right side ptosis was annoying me to the point I was thinking of asking my GP to send me to see my neuro sometime but I'd just do that at my regularly scheduled check in with my GP. While in the Toronto area, I went to visit my brother & SIL in Grimsby for a few days before heading home. My SIL, who had not seen me in a while, really noticed my energy levels had collapsed and sent a note to my wife to start the discussion with her about my MG getting worse and get the ball rolling on getting this looked at.

The end of October: I had developed aspiration pneumonia somewhere along the line without knowing it

My new normal had

so gradually crept up

that I actually deluded

myself into wondering

if I was taking too

much Mestinon and if I

should try cutting

it back (sneaky sneaky

MG

and complacency.)

Continued on Page 10

Thoughts on Complacency Continued from Page 8



(lungs, they're not meant for food). My dad was admitted to hospital for end of life care and the family all converged on Toronto to say goodbye. I huffed and puffed my way through the airport - again, hiding what was happening to me from my family members who were around me by saying "I just missed my mestinon dose, let it kick in here and I'll be OK" (I was really lying hard to myself at this point and burning the last remnants of my reserves.) My brothers and one SIL all got together for supper. I sat at one end of the table physically holding my eyelid open against the ptosis. I was gasping for air, but still had enough reserve to hide it from myself. My family all saw it and sent me in a cab to the hospital to see dad while they walked. I had a brief visit with my dad and then went with my mom to the place she and Dad were staying in Toronto.

Next morning (Oct 31): I was literally gasping for breath after walking 10' to the bathroom and back to the chair I was sitting in. I had to hang my head between my knees for almost 20 minutes to catch my breath. My brother and SIL from Grimsby were going to drive me from the place I was sleeping the night to the hospital - when they arrived, they saw me almost unable to even stagger down the hall gasping for breath and using my hands to hold my eye open. They load-ed me into my dad's wheelchair for transit to the hospital. Dad received the word that he'd not get the transplant as he was too far gone to be able to survive it any longer even if one were available. The family was able to say goodbye and then some of my family said I should just go rest at the room - my SIL took me to the ER instead.

Full Blown Crisis: I was able to tell them I thought it was an exaserbation. Provided them very recent details, without thinking on the history of this event. I still wasn't thinking about the slow crash from Aug / Sept, still thought (convinced myself) it was a sudden crash. XRay found the pneumonia, they put me on broad spectrum antibiotics - I was aware enough to provide them with my MG medication card (Toronto General ER now has a copy of the medication to be avoided if possible for MG card) so they did change the antibiotic they had planned on based on that. The respirology team member came by and asked me if I could think of anything that could help - I suggested bipap. She said they do have some and she'd see if one was available. I continued to deteriorate and the decision was made to intubate Several days intubat-ed, several days in ICU extubated, several days in hospital recovery, several days outside hospital recovery and now I am back home recover-ing from my return trip. I've got a ways to go to get better still.

MG Can Be Sneaky, Sneaky…. Continued from Page 9




ONLINE: Myasthenia Gravis Support Canada

On Facebook, you can connect with others affected by Myasthenia Gravis

through the Myasthenia Gravis Support Canada Facebook page, another way

to learn more through discussion, posting and comments. Use this URL:

https://www.facebook.com/groups/1380379838949713/ and link text is

Myasthenia Gravis Support Canada.

BY PHONE: The Peer Support Group. Whether you

have recently received the news that you have Myasthenia Gravis, or you have

been living with MG and want to share your experience, these members have

offered their support. Please feel free to contact them to discuss your experience.

Ages under 40 Tiina Elder, Mississauga. ( 905)-565-5875 email: [email protected]

Jill Thomson, Calgary, AB. T2J 0V6 403-286-0056

Ages 41 – 60 Phillip Sanderson, Harriston, ON, N0G 1Z0. (519) 338-3356

Ages Over 61

Florence Pye, Carleton Place, ON, K7C 1P8. (613) 257-1847

Vikki LeDez, Sunderland, ON, L0C 1H0 (705)-357-0377 email: [email protected]

Fernanda Nascimento, St. Catherines, ON. 905-937-9762

I just wanted to write this to remind me in the future and hopefully help others out there to remember MG sneaks up.

We all want to be "OK", but I have found that for me being "OK" and being complacent sit too close together.

Brian Robichaud Reprinted with Permission.

MG Can Be Sneaky, Sneaky...Continued from Page 10

Greetings Season’s

https://www.facebook.com/groups/1380379838949713/



Personal Thymectomy Decision By Steve Roedde

From Facebook Support Group


Good morning fellow snowflakes: I thought it might be useful for some if I wrote something brief about the relative value of different types of evidence. Although our group is primarily one for mutual support, we often seek opinions and beliefs from each other. Putting the replies in context (I believe) is useful. To begin, I'll use my recent decision to have a thymectomy as an example of how a hierarchy of evidence has use. Prior to September of last year, there were two schools of thought regarding the role of thymectomy in patients like me (No thymoma on CT scan, under 65, Acetylcholine antibody positive, steroid dependant, generalized MG). One group of docs (and patients), felt that these patients should get a thymectomy, the other group felt we should not). What was the basis for these "opinions"? A combination of "personal experience", cohort studies, retrospective case-control, and case series studies. Personal opinion based on experience, is the weakest form of "evidence", because of the many inherent biases. In my view, it's not even evidence... but is useful in choosing a physician...I'd rather have one with experience... everything else being equal. In cohort studies, two groups of patients are identified. Those scheduled for thymectomy, and a group (who for some other reason) are not. They are usually followed forward over time and outcomes compared. As you might guess, despite attempts to control for differences, the two groups usually differ in many ways. Thus, one can never be sure whether actual outcome differences are due to therapy or other unknown causes. In the second type of "research", a bunch of MG patients who had thymectomy were identified and compared with a bunch who did not have thymectomy. Authors would try and "control" for other factors that might impact outcomes. Unfortunately, this type of research can never demonstrate the actual impact of a therapy... it can only provide clues... because the 2 groups are ALWAYS different.



The third type of study is a case series. In this sort of report, a bunch of patients who had thymectomy are described... with no comparison group. This is, (next to a single case report), the weakest possible form of evidence. Interesting to identify things to study further, but essentially useless to base decisions on.

So, from strongest to weakest evidence we have cohort studies, case-control studies, and case-series. All have uses, sometimes it's the best we can get.... but all have serious limitations.

Now, in the case of thymectomy, these kinds of reports showed that my chance of dying during surgery was~ 1%. This was certain. This balanced against a "benefit", the magnitude of which was unknown, because no true "experiment" was conducted. Some harms could be surmised (but not known), pain, infection rates and the like... but benefits... uncertain. This was insufficient for me to embark on a therapy that might result in me dying...up front.

In September, everything changed!

A randomized trial was conducted. Here, patients that were similar to me, were, (in a random fashion), allocated to meticulous, open thymectomy... or not. The two groups were similar (at the start) in all important ways. There were clear "rules" for other therapy after the fact. Goals for the degree of symptom control, and protocols for what other therapy would be offered... and under what circumstances.

Then, the two groups were followed over time and outcomes compared. When done well (as was this study), both benefits and important harms could be identified, and most importantly, with greater certainty attributed to the therapeutic intervention (Thymectomy).

In this case, a 30% reduction in prednisone dose and a reduction in chance of crisis from ~39% to 9%... over 3.5 years. These are important differences (to me at any rate).

However, this too was not a perfect RCT. An ideal study would randomize to either thymectomy... or sham surgery... where the control group went to the OR, got their chest split, then was closed up... with neither the patient or physicians following the patient knowing whether they got the "real deal". Continued on P 14

Personal Thymectomy Decision Continued from Page 12



This may sound unethical, and unnecessary, but it's been done for some forms of bypass surgery and arthroscopic knee surgery. In both of these cases this's form of trial demonstrated that the surgery was ... OF NO BENEFIT! It was placebo effect!

Prior to these trials everyone involved knew and believed that the therapy worked! Thus is the power of belief... and placebo effect. We know for certain that 30 % of patients improve as a result of placebo. The bigger the intervention, the bigger the impact. Getting ones chest split, having ones thymus removed... is a "big" intervention. One that almost certainly carries big placebo value!

So to recap, I had very good, (but not perfect) evidence that thymectomy helped a group of patients like me... over 3.5 years. It's possible that some or all of the impact was due to the placebo effect. It doesn't matter too much... because I'm not immune from placebo effects.

This said, there was sufficient evidence for me to submit to the therapy. I still faced a 1% chance of dying (up front), but the magnitude of possible benefit was, in balance, worth the risk.

Now, I am in a new category. Many friends ask me "did it help", "when will you see a benefit", and similar questions?

The only possible answer is "I will never know"!! !

How can this be?

It's because now, I am a "case study". One patient. One who had a thymectomy. I will never know what path I would follow had I not had surgery. If I get a bit better... I might have got a lot better without surgery. If I get worse, I may have gotten a lot worse without surgery. In the trial discussed above, the benefits demonstrated were in aggregate. Some of the individuals in the trial may have derived tons of benefit, some in fact might have been harmed.

So, I based my decision to have surgery on a well done (but imperfect) trial... one showing an aggregate benefit...but from here on, I will never, ever, know whether it actually helped... or harmed.

Many friends ask me “did it

help”...The only possible answer is

“I will never know”!!

Personal Thymectomy Decision Continued from Page 13




Lastly, the value of my individual experience for others? I posted my experience with robotic surgery so that members of our group might benefit from reading about my personal, idiosyncratic, unreproducible experience. I "believe", that robotic or other video-assisted approaches offers advantages... with few costs. I do not know this. We will likely never know.

I was up riding my bike 30 hours post op... albeit with lots of pain. Another patient who had the same surgery had not moved from his bed... as I was being discharged. Snowflakes!

Personal experience... is personal experience. Helpful to allow for understanding the experiences of others... but essentially useless to base decisions on.

It is worth keeping these things in mind when we ask others in our group... "have you experienced this... or that"? The replies help us feel less alone, less isolated, perhaps more secure. But evidence about real benefits/harms/impact of therapy or lack thereof ? No!

Snowflakes!

I hope this is of some value to others. I'd appreciate feedback.

Steve Roedde Reprinted with permission.

MG Support Facebook Article Continued from Page 14.

Wilma J Koopman, RN (EC), MScN NP of the MGFA Nurses

Advisory Board conducted a study to explore the relationship

between hope, coping and the quality of life experienced by adult

patients with MG.

The initial diagnosis of MG is fraught with questions, primarily because it takes so long for a ‘true’ diagnosis to be achieved. Many patients are stopped in their tracks and “What now? And Why me ?” The shock and lack of knowledge of this elusive disease add to heightened

Hope, Coping and Quality of Life

Wilma J Koopman,

RN(EC) MScN NP of the MGFA Nurses Advisory Board.




levels of anxiety. Often multiple medications are required and their frequency and potency change until personal equilibrium is achieved. The study, which selected it’s 100 participants from the London Health Centre in London, Ontario MG Database. All MuSK AB positive patients were invited to participate as they are low in number. 57 were male and 43 were female: the average age was 61, 78% had generalized MG, 24% ocular. 83% were AChRpositive, 8% were MuSK positive and 9% were sero-negative. Among the group the follow-ing medications were taken: Mestinon 92%, Prednisone 78%, Azathio-prine 57% and Cellcept 21%. Questionnaires given to the participants included demographic information, measure of their ability to perform activities of daily living (MG-ADL), a score on Hope (Hope Herth Index), main strategies of coping (Jalowiec Coping Scale) and their quality of life scores (MGQOL< SE36v2) The mean scores indicated a high level of hope with positive readiness and expectancy as the most frequently used ‘coping mechanism’. The other three most effective were being optimistic, confrontive – relating to facing the problem and working to solve it, and self-reliance. So like many areas of life, trying to think positively, keeping a sense of humour, focusing on the good things and keeping your life as normal as possible are reliable coping mechanisms. It is important to notice this group had mild disease and few symptoms of active disease. Most identified with a ‘good tolerability of their MG symptoms.’ Participants in this survey were hopeful and wished more healthcare professionals understood the need to promote strategies to inspire and thereby improve the quality of life for their MG patients. Wilma J. Koopman Reprinted with Permission The full study and charts may be viewed at: http://cann. caissues/?IID=volume38- issue1-2016e Canadian Journal of Neuroscience Nurses.

Hope, Coping and Quality of Life… Continued from Page 15

With the new day comes new strength and new thoughts.

Eleanor Roosevelt.




Formerly known as Myasthenia Gravis Ontario (Chapter)

MEMBERSHIP APPLICATION

Date __________________________________ New Member ______ Renewal _____

Last Name __________________________________ Male _____ Female _____

First Name ___________________________ Date of Birth __________________

Address (Include Suite #)_____________________________________________________

City _____________________________________ Postal Code ___________________

Phone ______ - ________ - __________ Cell Phone ______ - ______ - _________

Name of Spouse, Partner or Significant Other (Optional)

______________________________________________________________________

E-mail Address _____________________________ @___________________________

In order to reduce postage costs I would like to receive the quarterly newsletter “Contact”

via e-mail, rather than by regular mail: Yes ______ No ______

Would you like us to call you? Yes ______No ______

For “Myasthenics Only” and for statistical purposes (held in strictest confidence):

My Neurologist is Dr. ___________________________________

Neurologist’s Telephone No. ______ - ______ - _________

ANNUAL MEMBERSHIP FEE

$ 20.00 + $2.60 HST = $ 22.60 $ ________ (12 months – Individual or Family)

or $ 50.00 + $ 6.50 HST = $ 56.50 $ ________ (36 months – Individual or Family)

Donation $ _________ (optional

Total $ _________

Please complete as much of the form as possible.

All information will be kept in the strictest confidence.

It is important to keep your membership and record of information up to date and

accurate each year. Please advise any changes during your renewal period.

Questions or Changes? Call 905 642 2545 or e-mail to [email protected]

Mail completed form and payment to:

Membership Coordinator – Myasthenia Gravis Society of Canada

c/o 247 Harold Avenue, Stouffville, Ontario, L4A 1C2.

Please make cheque payable to: Myasthenia Gravis Society of Canada

Tax Receipt issued for Donations of $10 or more. Registered Charity#81155 1431 RR0001



MG "Support" Facebook quotes to November 2017

“"Common sense is NOT always common practice" - Brendon Burchard. I just wanna share with you that I love this guy so much. I'm now doing his course High Performance Habits and I needed this badly!”

“Korean study suggests that MG patients should receive the flu vaccine (I know that this has been a controversial topic!). They came to this conclusion weighing the degree of exacerbation - they believe the risk of the vaccine outweighs the risk of illness. Not all doctors or MG patients may agree! If you're inter-ested,The Impacts of Influenza Infection and Vaccination on Exacerbation of Myasthenia Gravis”

“The closest thing we have to a double blind study on ‘Thymectomy’ is the

work in the 1930's on removing the thymus. I agree with the premise that we will never know, and that in medicine, current practices are our "best guess" based on what we have. It's a matter of being smart and not emotional or desperate.”

“I was thinking of going back to work, but I always feel so unpredictable... I have never been in remission or lowered symptoms.. I’ve been diagnosed for 2.5 years now.. what do you do for work? How does your company handle days you feel weaker?”

“Sore throat cures: Go! Nothing seems to be helping in fact everything is making it worse. It only started yesterday but today I actually can’t eat because I will choke trying to swallow anything but liquids. I have never had a sore throat this bad and it’s accompanied by a fever but no other cold symp-toms. (Thankfully) Cold medications don’t help and I’m pretty sure we can’t take half of them any-way. Is there anything I can take or anything I can do that won’t make the MG worse but will lessen the sore throat? I’ve already drank a million cups of tea with honey, gargled salt water which actually worsens it A LOT, had tea spoons of straight honey...and am loading up on vitamin C. Nothing is helping and it’s getting worse. I’ve never had a sore throat this bad.”

c/o 247 Harold Ave., Stouffville, Ontario, L4A 1C2

https://l.facebook.com/l.php?u=https%3A%2F%2Fsynapse.koreamed.org%2FDOIx.php%3Fid%3D10.3988%252Fjcn.2017.13.4.325&h=ATMeuR1pNnT7A6ywffB1dr72_frLiIXsBYR0YmtROPZpVWiJenP4lOIvhGNVSoM1rBx8SW9Z1-QI8jW6Uwgf9waQKxOOF-q7CDoPi_ByS6Fb8Zc7Ij_66qucGCiUqXeooP1MT7ye1VNK0ZK

there is hope through ‘contact’ › mg-canada-newsletters › contact-2017-novemb… ·...

Documents