Myasthenia Gravis Society of Canada

Myasthenia Gravis Society of Canada
There is Hope Through
„CONTACT‟
Printed in the interest of those affected by Myasthenia Gravis
Quarterly Newsletter
Volume 39-Issue 1 February 2015
President‟s Message
MG Canada initiates a much larger
perspective.
MG Canada is gearing up this year.
There is much to be accomplished.
Our new Directors, Jim Houston, Lucien
St. Martin, Tara Buonpensiero and
Odette Montelibano, each with their
courage of conviction and the reality of each being MG
patients, will make significant contributions to our
evolving MG advocacy footprint in Canada. Our hope is
that as your new MG Canada visions unfold, regional MG
associations in BC, Alberta, Saskatchewan, Manitoba,
Quebec and others, will also resource participate.
Page
CONTENT
3
March 1 Support
Meeting
5
MG Dental Care
7/8
Member and
Donation Updates
12
Telephone Support
13
Membership
Application
Building a ‘Made in Canada’ MG advocacy perspective
is long overdue. We’re supposedly a country with
Universal Health Care access but with such a huge
geography, and just 35 million population, the
theoretical fantasy of 15 to 25,000 MG patients being
helped equally, needs to change to a new functional
reality. Your MG Canada Board with your encouragement and help, plans to work toward that goal, one
information and action step at a time – and now with
more tools than ever, health science technology and
hugely expanded communication resources will be of
tremendous assistance in achieving and sustaining
those goals.
You will be asked to help. I know each of you cannot
contribute equally, but all of you can contribute in
Continued on Page 2
1
MG Canada—February 2015
Save the
Date!
Saturday
October 24, 2015
MG Education Day
Conference
Myasthenia Gravis Society of Canada
President‟s Message—Continued from Page 1
perhaps many ways – some we haven’t even
thought of yet.
Four examples where you can specifically
help will be assisting:
Director of MG Patient and Caregiver
Education and Support, Lucien St. Martin.
Director of Health Professional Education
and Support, Tara Buonpensiero
Director of Fundraising, Donations &
Endowments for MG Education & Research,
Jim Houston
Director of MG Canada Communications,
Odette Montellabano
So here we are 40 years later since MG
Ontario’s inception (formerly MG Ontario
Chapter) with the realization that our future
directions need to be more proactive in every
respect. That to comfort and support MG
patient, Caregiver and Health Professionals,
is to pursue a deep, fact, science and emotionally support based universal understanding
of MG, its causes, symptoms, diagnosis and
treatments, wherever we live in Canada and
wherever we go in the world.
To attempt to achieve an adequate quality of
life level for all MG patients is to reassure
everyone that MG is not contagious; that it
does stabilize with treatment; that with
careful patient strategies including rest and
awareness of stress capacity, we all can
still be happy, productive members of our
communities and society at large and if we’re
not, figure out how to be.
So here we go on our new MG Canada quest
keeping our strategy relative anywhere by
keeping our information approach always
National, Provincial, Territorial, Regional and
Community immediate – balanced, fair,
supportive, collegial – and supported by all
aspects of MG patient Health Care and
advocacies.
Great new contact with McMaster Life
Sciences. We received a request from a Life
Science student in her 4th year of her honours
degree at McMaster University in Hamilton,
Ontario. In writing a paper on literature
based articles that discuss causes of
Myasthenia Gravis, she wants to embrace our
MG association, assist at meetings, help with
fundraising, etc. I’ve since received a follow
up memo from her Professor. Life Science
curriculums have evolved and appear to offer
tremendous new dimension for MG patients.
We enthusiastically encourage this new
affiliation and will keep you informed.
Stay warm, take your meds, get lots of rest
and keep looking for life’s pearls . Hope
to see you at our next GTA MG support
meeting, March 1, 2015.
Sincerely,
Cap Cowan, President, Myasthenia Gravis
Society of Canada,
905 642 2545 Call anytime.
Email CapCowan@MGCanada.org
Website www.MGCanada.org
Myasthenia Gravis Society of Canada
c/o 247 Harold Ave., Stouffville, Ontario L4A 1C2
905 642 2545
2
www.mgcanada.org
CapCowan@MGCanada.org
MG Canada—February 2015
Myasthenia Gravis Society of Canada
Myasthenia Gravis Society of Canada
MG Support Meeting
Sunday, March 1, 2015, 6 - 8 pm
For those living with Myasthenia Gravis,
caregivers, family, friends & interested others
to meet to share experiences
Plus
A Discussion of Relaxation Techniques
Loblaws Community Meeting
Room, Bayview Village Mall
2877 Bayview Village, 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.
All Welcome!
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.
Info at 905 642 2545
3
www.MGCanada.org
MG Canada—February 2015
Myasthenia Gravis Society of Canada
“Thank You” to the University Health Network Team
for holding a Panel Discussion on Myasthenia Gravis at
the Sunday, November 30th Meeting.
Dr. Vera Brill
Dr. Ari Breiner
Dr. Hans Katzberg
Dr. Carolina Barnett
Tapia
A fantastic opportunity at our last meeting gave nearly fifty attendees direct access to University
Health Network specialists all involved with treating Myasthenia Gravis. Dr. Vera Bril described
their work, research goals and methodology. We were introduced to Dr. Ari Breiner, Dr. Hans
Katzberg, and Dr. Carolina Barnett Tapia. Each talked about their areas of interest.
Members, family, friends were excited to get answers to their direct questions and took full
advantage of the opportunity. A big “Thank You” to these specialists for donating their time
and talent.
Membership & Renewals
For those renewing memberships and
those becoming members for the first time,
a Membership Form is available
on the inside back page of this newsletter.
It’s Coming!
Happy
St. Patrick’s Day
Membership Dues & Donations Help Us Help You
4
MG Canada—February 2015
Myasthenia Gravis Society of Canada
Need Dental Care?
Common Questions People Ask About
Dental Treatment Considerations for the MG Patient





Good preventative dental care at home
and regular dental follow up office visits
for teeth cleaning and inspection will help
prevent dental problems, gum infections,
and the need for emergency dental care.
Open communication with the dentist can
reduce the risk of complications during
dental treatments.
if you are so far back that you feel like
your throat is closing off or you are
having difficulty with breathing or
handling your secretions.

Let your dentist know if you will need
frequent rest breaks during treatment.

Tell your dentist how frequently you have
weakness and what muscles are usually
involved.
Helpful dental care hints include using an
electric toothbrush or a
manual toothbrush with
modified handle that is easy
to grasp. This will reduce
muscle fatigue.
If your MG is
stable with limited or
mild neuromuscular
involvement, you probably
can be treated safely in a
private dental office.

Make short duration,
morning appointments to
reduce stress, minimize
fatigue and take advantage of
typically greater muscle
strength in the morning.
If you have frequent
exacerbations or
significant oropharyngeal,
respiratory, or generalized
weakness you may receive
dental care most safely in
a facility with emergency
and respiratory support
capabilities, such as a hospital or oral
surgeon’s office. Ask your dentist about
his/her emergency equipment.

Schedule appointment
approximately 1-2 hours
following Mestinon® intake
or, if your physician allows, modify your
Mestinon® schedule to allow drug intake
approximately l hour prior to your dental
appointment to maximize benefit from the
drug’s peak effect.

Mouth props for use during dental
treatment may prevent muscle strain of
having to hold the mouth open during
treatment.

Dental treatment is usually done in a
reclining position. Let your dentist know

If you are anticipating significant oral
surgery (wisdom tooth extractions, multiple
tooth extractions) and you have frequent
severe exacerbations of your weakness, your
physician may recommend additional
myasthenic therapy (such as plasma
exchange) before your oral surgery.
Continued on Page 6
5
MG Canada—February 2015
Myasthenia Gravis Society of Canada
MG Dental Treatment Considerations Cont. from Page 5

If an exacerbation is precipitated, your
treating physician should evaluate you for
severity of neuromuscular involvement.

If respiratory collapse occurs, an open
airway and adequate respiratory exchange
must be established. Ask your dentist if the
staff are trained in and prepared to do basic life
support (CPR) until the ambulance arrives, if
needed.
(Excerpt from Dental Treatment Considerations. .Reprinted with permission from Myasthenia Gravis Foundation
of America.)
The MGFA mission is to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and
closely related disorders and to improve their lives through programs of patient services, public information, medical research,
professional education, advocacy and patient care. This publication is intended to provide the reader with general information to be
used solely for educational purposes. As such, it does not address individual patient needs, and should not be used as a basis for decision
making concerning diagnosis, care, or treatment of any condition. Instead, such decisions should be based upon the advice of a physician
or health care professional who is directly familiar with the patient. The information contained in this publication reflects the views of the
authors, but not necessarily those of the Myasthenia Gravis Foundation of America (MGFA). Any reference to a particular product, source,
or use does not constitute an endorsement. MGFA, its agents, employees, Directors, Chapters, its Medical/Scientific Advisory Board, and its
Nurses Advisory Board or their members make no warranty concerning the information contained in this publication. They specifically
disclaim any warranty of merchantability, fitness for any particular purpose, or reliability regarding the information contained herein, and
assume no responsibility for any damage or liability resulting from the use of such information. Revised 2014 by Myasthenia Gravis
Foundation of America, Inc. Approved by the MGFA Medical/Scientific and Nurses Advisory Boards ©2014 by Myasthenia Gravis Foundation of America, Inc.E TREATMENT CONSIDERATIONSDENTAL
TREATMENT CONSIDERATIONS
Dr. Shaf Keshavjee appointed
Officer of the Order of Canada
We were alerted in late December by member Sylvia Langlois that
Dr. Shaf Keshavjee was appointed Officer of the Order of Canada.
She advised that Dr. Keshavjee is known to many Myasthenia
Gravis patients for performing and/or supervising many
Thymectomy removal procedures.
Dr. Shaf Keshavjee
Dr. Keshavjee was awarded Officer of the Order of Canada
“For his innovative contributions to thoracic surgery, notable in the
development of a process that has improved lung transplantation
worldwide.” Thoracic surgery is the specialty that deals with
diseases of the chest (thorax), as well as the trachea, esophagus,
and stomach. He had previously been honoured with the Order of
Ontario and two Queen’s Jubilee Medals.
He is currently surgeon-in-chief at University Health Network.
6
MG Canada—February 2015
Myasthenia Gravis Society of Canada
Welcome New Members
Jim Young
Simcoe, Ontario
Soubanh Tonelcham
Ajax, Ontario
Kathy Baer
Kingston, Ontario
Mila Plentai
St. Catharines, Ontario
Yyrone Wilson
Toronto, Ontario
Bill Kenny
Fergus, Ontario
In Memory
October 4, 2014
Name
Age
Roy Bowman, London, Ontario
74
In Memoriam Gifts Received
Date of Gift
Name
Donor
October 2, 2014
Sandy Harrison
Claire Jafine
October 20, 2014
Cecil Stein
Claire Jafine
November 11, 2014
Albert Yanofsky
Claire Jafine
Gifts were received from the following in memory of William Harold Blackwell
Bonnie Dietz
Nancy Scharloch
Robert & Doris Westphal
Wanda & Ken Jackson
Dorothy Boan-Sipes
Linda & Henry Brick
Beverley D Carter
Dave & Pauline Horsfall
Mike & Judy Mayne
Bob & Gloria Parkyn
Joseph & Joan MacDonald
Terry and Sheila Dickson
John & Cheryl Mayburry
Effie & Bernie Fleet
Kim Frey & Steve Stumpf
Sharon & Roy Bowman
Ed & Ruth Kingyens
Brian & Christine Lehmann
Louise Ruddock
Robert & Shirley Lorentz
Joan Hatton
Rene & Pat Gascon
Dora & Roy Robertson
Dale & Julie Snider
Butch & Dorothy Roeder
Richard & Lynn Stumpf
Genery & Margaret Heuchert
Wayne & Lynn Hickman
James & Vi Scott
Donna Kritzer
Denise & Carl Biehler
Kirsten Abrahamson
Ormie & Ruth Boan
Monika Rath
Mark & Debra Perry
See Donations Page 8
7
MG Canada—February 2015
Myasthenia Gravis Society of Canada
More Donations To Date
John Milne
Evalyn Muddry
Barbara Berner
Tara Buonpensiero
Gwendolyn Cox
Barrie Curtis
Dr. Michael Nicolle
Andy Roy
Maurice Seeger
Gail Yates
Janie Shields
Gloria Lupu
J-Luc St. Martin
Anne Bell
Joanne Grischow
Zena & Ray Havelock
Karen Hill-Whitson
Claire Jafine
Frank Landry
Jennifer Sterne
Peter Winett
Matti Hukari
David Jubenville
Louise Gauthier
Merlyn Jordan
Anna Antonucci
Mildred Mack
Florence Brunelle
Anne Davis
Paul Fry
Leonard Didur
Lynn O’Leary
Thank you to all for your valuable donations and support for
Myasthenia Gravis
Donations and endowments to Myasthenia Gravis Society of Canada are vital to our organization, and can be
forwarded to MGSOC, 247 Harold Avenue, Stouffville, Ontario, L4A 1C2
www.MGCanada.org
Sports Quotes
“Last year we couldn‟t win at home and we were losing on the road. My failure as a coach was
that I couldn‟t think of anyplace else to play. Harry Neale, professional hockey coach.
I won‟t know until my barber tells me on Monday.” Knute Rockne, when asked why Notre Dame
had lost a game.
“I learned a long time ago that „minor surgery‟ is when they do the operation on someone else,
not you.” Bill Walton, Portland Trail Blazers.
8
MG Canada—February 2015
Myasthenia Gravis Society of Canada
MGSOC Library Literature List
Information on various MG related subject is available free of charge. To order check
boxes below and send your request to: Janie & Becky Librarians c/o 614 Gliddon Avenue,
Oshawa, Ontario, L1H 1Z9 or email Janie.Shields12@gmail.com
 Facts About MG– For Patients & Families (Complied by MGSOC)
 Drugs & MG– Drugs to Avoid
 MG & Swallowing– Angela Colton Hudson MCS Sc - Speech Language Pathologist
 Living with MG– A Caring Partners view (MG Association of Great Britain)
 Human Energy Conservation (Jeanne Rhynsburger, R.N., CCRN, MICN, ACLS)
 Mestinon (MG Foundation of America Inc.)
 Prednisone (MG Foundation of America Inc.)
 Imuran (MG Foundation of America Inc.)
 Plasmapheresis (MG Foundation of America Inc.)
 IVIG (MG Foundation of America Inc.)
 CellCept / Mycophenolate Mofetil (MG Foundation of America Inc.)
 Thymectomy– Form of Treatment (MG Foundation of America Inc.)
 Exercise and MG– Kathleen Wade, EP, RN, BSN
 Dentistry and the Myasthenic– UK MG Foundation.
 MG in the Workplace (various sources)
 Positive Thinking & Positive Actions (Holly Fraser, R.N.)
 Home Injury Prevention (MG Foundation of America Inc.)
 Nutrition & MG (MG Foundation of America Inc.)
 Stress & Myasthenia Gravis – Judith Schiffbauer, M.S.W.
 Emotional Support – Guy R. Corsello MD – Mercy Hospital, Pittsburg PA
BOOK LIST
To order books, please make cheques payable to MG Canada – Prices includes shipping
 You Me and Myasthenia Gravis $25.00 plus $3.25 HST
 A Guide to Diagnosis & Management of Myasthenia Gravis $25.00 plus $3.25 HST
 Settle It (Karen Vagiste) $15.00 plus $1.95 HST
Name: __________________________________________________________________
Address:__________________________________________________________
Postal Code:________________________Phone (optional) _______________________
We would like to know what you are interested in. Please indicate below. It would be a
great help to us while building our library.
_______________________________________________________________________
_______________________________________________________________________
9
MG Canada—February 2015
Myasthenia Gravis Society of Canada
My Story
You Are What You Eat! By Leah Roche
that I ate a pretty healthy diet, I knew there was
room for improvement. I
began with just adding more
fruits and vegetables to my
diet and started to see an
improvement in my general
After being diagnosed with autoimmune
overall health, but definitely
disease, Rheumatoid Arthritis and
Myasthenia Gravis, I became really involved wasn’t cured. I read about
alkaline diets and how disin understanding the disease and learning
how to take care of myself. Western medicine ease cannot live in an alkatells us that diseases such as these are incurable line diet and this intrigued me, but I found it
and are treated with medications that very often hard to get out of my old cravings for acidic
foods such as grains and sugars.
have extreme side effects. I have been taking
some of these drugs now for just about 10 years.
I couldn’t image taking them for the rest of my About a year or so ago I was introduced to
life.
“Green Smoothies” and this one thing alone
has made a significant change in my energy,
joint pain and I even lost some weight.
It became very clear that my doctors, although
very good, knowledgeable and caring, were not Eating all these raw fruits and veggies also
helped to keep my body in an alkaline state. I
going to do anything but treat my symptoms
really liked the idea of getting my vegetable and
with medications. I decided to take matters
fruit intake in a meal. I incorporate proteins,
into my own hands and started to do as much
reading as possible about autoimmune diseases. good oils like coconut oil, and flax, hemp or
chia seeds, and assortments of milks such as
I found it very interesting that the body was
coconut, almond and hemp. I drink one or two a
attacking itself. I wondered why my body
decided to do this to me. This quest for knowing day and then have a dinner that is healthy and
follows the food recommendations. What’s
has taken me on a journey that I cannot even
great about the smoothies is that it’s quick,
begin to describe in this short article.
satisfying and helps me meet my daily
nutritional requirements. You can find all kinds
For me, part of that journey was learning
more about the foods we put into our bodies of recipes and more information about “Green
and how they can help us heal. Although I felt Smoothies” online or at your favourite book
store.
You really are what you eat. Our body needs
proper nutrition to fuel itself and by choosing
foods that are healthy you give your body what
it needs to function properly.
(This personal story was reprinted with permission from Myasthenia Gravis Manitoba Inc.)
A Smile!
A man rushed into a busy doctor's surgery and shouted, "Doctor! I think I'm shrinking!" The
doctor calmly responded, "Now, settle down..You'll just have to be a little patient."
10
MG Canada—February 2015
Myasthenia Gravis Society of Canada
Summary of MG Support Meeting, September 2014
Participation Work Session
on MG Educational
Ideas & Educational Priorities
for MGSOC Going Forward in 2015.
This work session was held at the MGSOC
Support Meeting September 21st, 2014, at
Loblaws Community Room, Bayview Village
Mall. The discussion centered on three groups:
Health Professionals, Caregivers, and MG
Patients.
Kelly Cowan coordinated the Workshop
session which ran about 40 minutes in second
half of meeting. Attendees were divided into 3
approximately equal groups. Each group tackled
1 of the 3 subjects for spontaneous input. Each of
the 3 large idea pages moved through all 3
groups for input. Thanks to all taking part.
The results are below. We will consider
these categories for future speakers, Newsletter
research and feature articles. Subjects will also
be added summarily to our Web site
www.MGCanada.org
We welcome further suggestions on your sense
of priorities for all 3 categories and even better,
your presence at our next MG Support meeting
and workshop. Hope we see you!
2015 Education: All
Health Professionals


Dentist concerns for MG patients
Psychologist for self esteem issues

Speech Pathologist to strengthen
weakened facial muscles

Neurologists who have highest
percentage of success with MG patient
treatments

Diagnostic Technicians for MG tests

GP symptoms and referrals

Ophthalmologist conditions that effect
double vision and eye alignment

Haematology for side effects MG
prescription such as Prednisone,
Mestinon, Immuran, Cell Cept drugs
given to help stabilize MG patients
2015 Education: MG
Caregivers

Caregivers and friends – Education of
the Disease

Elderly Focus of MG

Patients’ views of caregiver support –
too much or too little

Caregiver burnout – often not healthy
either, need a break

How Does an unstabilized or non
diagnosed MG Patient Look

Caregiver/doctor relationship – crisis
management

List of MG Symptoms


Referrals for OT or PT
Caregiver – mental health; support
groups – general

Pharmacist for how to swallow
prescriptions and side effects

How to recognize a crisis

Meal Planning

11
Continued on Page 12
Dietician for digestible foods
MG Canada—February 2015
Myasthenia Gravis Society of Canada
Work Session Continued from Page 11
Caregivers Continued….

Knowledge of medications/side effects

Emergency Plan

Final Wishes

Psychologist for self esteem issues
2015 Education: MG
Patients

How to apply for disability benefits

How to say “no” to volunteering

Planning less busy days

Public Awareness – “You look so
healthy.”

Multiple health issues – doctors
communicating with each other

Financial Planning

Insurance LTD

Educational Planning/Career Choice

Information for Younger Patients

How to handle side effects

Immunizations/vaccines
Hygiene

Travelling with MG (incl. Take all
your medical info with you)

How to explain to friends or strangers

Early Retirement

RDSP

Estate Planning

How to be your own advocate
Need to Talk?
The MG 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, the following members have offered
their support. Please feel free to contact them to discuss the MG experience.
Ages under 40
Tiina Elder, Mississauga. ( 905)-565-5875 email: tiina.stuart@gmail.com
Jill Thomson , 9804 – Avalon Rd. S.E., Calgary, AB, T2J 0V6. (403) 286-0056
Ages 41 – 60
Phillip Sanderson, P.O. Box 206, 27 Adelaide St., Harriston, ON, N0G 1Z0.
(519) 338-3356
Ages 61 – 74
Fernanda Nascimento, 509 Linwell Rd., St Catharines, ON, L2M 2R5. (905) 937-9762
Florence Pye, 11-126 Sussex St., Carleton Place, ON, K7C 1P8. (613) 257-1847
Vikki LeDez, 75 Bond Street, Lindsay, ON, K9V 3R4. 705)-328-2586 email: vikki.ledez@yahoo.ca
Age -- Over 74
Ondra Shuwera , 5 -615 Whitaker St.,
(705) 876-8481
12
Peterborough, ON, K9H 7L5.
MG Canada—February 2015
Myasthenia Gravis Society of Canada
Myasthenia Gravis Society of Canada
Formerly known as Myasthenia Gravis Ontario (Chapter)
MEMBERSHIP APPLICATION
Date
__________________________________
New Member ______ Renewal
Last Name
__________________________________
Sex:
First Name
__________________________________
Date of Birth
Address
__________________________________
Apt. or Unit No. ____________________
City
__________________________________
Postal Code
_____________________
Telephone
______ - ________ - ______________
Cell Phone
_____ - _____ - _______
Male ______ Female
______
______
___________________
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.
______ - ______ - _________
MEMBERSHIP FEE
Annual Membership
or
$ 20.00 + $2.60 HST = $ 22.60
$ ________
$ 50.00 + $ 6.50 HST = $ 56.50
$ ________ (36 months – Individual or Family)
Donation
Total
(12 months – Individual or Family)
$ _________ (optional)
$ _________
Please complete as much of the form as possible. All information is held in the strictest of 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 membership@MGCanada.org
Please 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: MGSOC
13
MG Canada—February 2015