Quarterly News Volume 42 Issue III September 2018 MG Canada … canada contact... · 2018. 9. 24. · new owner is ecstatic and MG Canada is the beneficiary of a wonderful gift. Thank

Myasthenia Gravis Society of Canada

1 September 2018 www.MGCanada.org

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

affected by Myasthenia Gravis

Quarterly News Volume 42 Issue III September 2018

Your GP’s help is critical for ongoing evaluation effects of MG treatment on metabolism balance. It’s been about 13 years since my diagnosis with general MG. Stabilized about 7-8 years since my last full crisis. Grateful for a predictable new norm. Frustrated by many side effects of prescription meds, in mentioning a few to my GP at an overdue annual medical, she sent me for the usual blood tests, only this time repeated over 3 months plus ultrasound

which revealed as suspicious new large kidney stone. What is different with

our Patient/GP relationship, is the level of my computerized records

history and how this readily accessible Computerized record information changes the game of consensus medical self advocacy. My GP and I study the patient (me) differently. My medical ‘team’ history you could say, reveals a Neurologist, Dermatologist, Internist, Bone specialist, Dentist, Periodontist and yes – Plastic Surgeon for tumour removals. My GP gets all those reports – automatically by my request. This realization is that your GP must be your medical “Go-To”. Your GP should have all your medical history – and with it is much more informed than ever before to help keep you in the best possible health and personal well being.

“Could It Be MG?”

MG Canada Support Meeting

Sunday, September 30,

2018 6-8 pm See Page 3 For details

Stepping Up for Myasthenia Gravis:: Linda MacMullen and Jude Angione organized the 1st Annual Courtenay B.C. MG Canada Walkathon held July 14, 2018. Plans are underway for a 2nd Annual Walkathon on June 16, 2019.

Cont. on Page 2

MG Canada Editorial Ramblings:



Linda MacMullen – hero for Canada’s first official MG Canada Walkathon. MG Canada members and supporters should be very proud of Linda’s July achievement for many reasons, not the least her own health and personal crisis at the same time! Linda, with the help of Jude and many others, was able to achieve her first year goal, and in doing so gives MG Canada, your Canadian National voice of Myasthenia Gravis, a template of experience to draw on for future public awareness and fundraising efforts. Banners, T-shirts, collector reward mugs, online and personal pledge donations, community media relations with interviews and articles and much more. Thank you Linda and Jude.

MG Canada Facebook Support Group – MG Love is a 2way street.

Karly Quinn tells it like it is with her updated “code of conduct”. Our Myasthenia Gravis Canada Facebook support group from inception, is about MG patient love, compassion, thoughtfulness for understanding, caring each other’s questions and bewilderments, frustrations with the ongoing nature of chronic MG – with friendship, support and compassion. It is entirely volunteer administrated by incredibly dedicated supporters and caringly monitored. We plan to keep it that way.

Marnie and Roy Loach – awesome. They brought a significant donation to

our June MG Support meeting by selling a donated motorized scooter whose new owner is ecstatic and MG Canada is the beneficiary of a wonderful gift. Thank you Marnie and Roy.

June 2018 – Canada’s 1st MG Awareness month success. 30 days of blogs and

conversations about Myasthenia Gravis. New for Canada this year and much more next year, June’s initiatives to spread the Word on MG was well received and needed. Our favorite is featured this issue – an MG patient’s experience written for the Globe and Mail in this issue of “Contact” - also a very cool MG patient poem.

International fight for “MG” as exclusive Snowflake medical acronym.

What’s in a name abbreviation. Plenty when we’ve got a sexually transmitted disease trying to nose in.

Helping MG Canada’s projects grow. Volunteers and funds to pay the costs of

communications, education and research. Think of us for endowments, me-morials, Fit-step campaign pledges, MG Canada membership and renewals, organized group &/or individual MG Walkathons. Funds gratefully appreciated both mailed in or online at www.MGCanada.org/donate . MG Canada is a CRA registered charity for tax deductable receipts on amounts of $10 or more.

Lots going on within Myasthenia Gravis Society of Canada. Think about joining in anyway you can, to help all Snowflakes have richer, improved, quality-of-life experiences. Kindest regards. Cap Cowan, Editor. Send information to: [email protected]

Cap Cowan, President, Myasthenia Gravis Society of Canada

Cont. from Page 1—MG Canada Editorial Ramblings

http://www.MGCanada.org/donate

mailto:[email protected]



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

Registration: 5:30—6 pm.

Sunday, September 30, 2018 6-8 pm

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

starting M-Z bring a food item to share. Loblaws has

asked that any food served come from their store.

Loblaws Community Meeting

Room, Bayview Village Mall,

2877 Bayview Avenue, North

York, M2K 2S3.

(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,

Bayview Village Mall.

Speaker: Derek Shin B.Sc.,M.A.,R.M.T.,R.Ac., R.P.

The Connection of Mind, Body and Spirit—a look at how Mindfulness and Psychotherapy fits into MG fitness regime. Derek Shin has a Masters degree in psychology,

an Honours Science degree in sports bio-mechanics, a diploma in acupuncture & traditional Chinese medicine, and is a registered massage therapist. Derek is the founder of a holistic healthcare clinic located in Toronto. He is a western trained Psychotherapist.



A Big “Thank You” to Linda MacMullen and Jude Angione

who organized a Courtenay B.C. MG Canada Walkathon on July 14, 2018

On their own initiative, Linda MacMullen and Jude Angione teamed up to raise funds and raise awareness about Myasthenia Gravis by organizing a Courtenay B.C. MG Canada Walkathon on July 14, 2018. The run was held in Courtenay Air Park with two routes—1.9 km and one approximately 1 km. Some people were on foot and some in wheelchairs.

Who are these generous people? Linda MacMullen is an RN living with Myasthenia Gravis. She decided to do a Walk for MG in order to raise awareness locally and nationally. Linda knows that MG is difficult to diagnose, and that many people suffer for years not knowing what is wrong with them. Health professionals may only see a few cases in their careers, and in an emergency, there may be no staff on shift with experience in treating MG. Linda is keen to spread the word about this sometimes heart-breaking condition. Jude Angione responded to a request for help. When she read in the Comox Valley Record that Linda was looking for help to organize an MG Walk on July 14, Jude jumped right in. Jude Angione has a very dear friend who was diagnosed with MG, after many years of tests and misdiagnoses. She also has a client in the ‘70s who had MG.

Linda and Jude set to work. They sent out press releases to media outlets, their MLA and MP. Their MLA was able to attend. They created graphics for posters, banner, mugs, ribbons, balloons and T-Shirts. They created a Facebook page for the event and used an online Fundraising Campaign as well as signing up pledges to walk. They were assisted by the Lions Club, which gave out water. They arranged for small corporate donations in kind, including the use of a canopy from Habitat for Humanity. Follow-Up: Photos were posted on Facebook, posters and banner

taken down, meetings held and planning begun for next year. They have set June 16, 2019, for their 2nd Annual Walkathon.. The Lions have offered to help with planning, and they will be going for more corporate sponsors and non-profit allies.

Funds raised have been donated to Myasthenia Gravis Society of Canada “Step Up For MG”

Their initiative and drive are to be commended. Thank you, Linda and Jude. Great job!




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

Members Participate in June Meeting Garry Morehouse lead an exercise workshop for Myasthenia Gravis patients sharing an interaction with everyone. He got us on our feet to try out a few moves. Very well received.

The Society is grateful to Marnie and Roy Loach for a generous donation to the Myasthenia Gravis Society of Canada. After remarkable perseverance, they sold a mobility scooter at the price they wanted, and then donated the proceeds to “Step Up for MG “Fund.



New rules of conduct for Myasthenia Gravis Canada Facebook Support Group

“We love you but love is a 2 way street.

Expanded rules regretfully necessary for

Conduct/Comments unbecoming”

Let’s Chat….

My dear Snowflakes, In view of the recent animosity we've experienced as a group. We are updating our RULES. Please make a note of RULE #2. It's either this rule or have admins approve your posts. Approving everyone's posts defeats the essence of this group and will also be burdensome to admins. However, Rule 2 makes us all accountable for our postings and comments, making sure we are respect-

ful and empathize with each other; and that we don't throw hurtful ideas, or cause stress to those following the conversation. Don't forget Rule 3 - Don't spam -- spamming will also be dealt with removal from the group. I'm reposting the RULES below. Please read and write your initials to acknowledge you've read them. Anyone who doesn't agree with the rules is free to leave. No one will run after you. Thank you Katie for your help in this matter. Much appreciated. Thank you to everyone who messaged with intentions of keeping our group a safe place for everyone. RULES: 1. Respect each other’s opinion/s. We are all snowflakes and consequently, might have different experiences. There will be instances when we won’t agree with each other but that doesn’t give anyone an excuse to attack someone. Let’s just agree to disagree when that happens and move on. Remember that stress worsens MG symptoms.

2. With regards to Rule 1, members causing a toxic environment within the group beyond civil conversation will be removed without warning.

As Posted by

Karly Quinn,

Administrator

of Myasthenia

Gravis Canada

Facebook

Support Group

Cont. on Page 7

https://www.facebook.com/katie.carter.986



Interested in joining the Myasthenia Gravis Canada Facebook Support Group?

On Facebook, you can connect with others affected by Myasthenia Gravis through the Myasthenia Gravis Canada Facebook Support

Group 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.

Continued from Page 6. Rules of Conduct.

3. Do not spam. Replies might not happen instantly as we all have different things to do off the internet but rest assured, your post will be read eventually.

4. Asking for money/donations and selling products (i.e. herbal products) are not allowed. Though this is a support group, we discourage asking members for financial assistance as this not only makes people uncomfortable, it also encourages scammers into entering our group and taking advantage of members.

SPECIAL NOTE: In cases where a member/s would like to extend help to any member of this group, please do so in private.

As Posted by Karly Quinn, Administrator

of Myasthenia Gravis Canada Facebook Support Group

Derek Shin is Guest Speaker at September 30, 2018 MG Support Meeting The Connection of Mind, Body, and Spirit - a look at how Mindfulness and Psychotherapy fits into MG fitness regime.

Derek Shin is a western trained psychotherapist who holds a masters degree in psychology, an honors science degree and a diploma in acupuncture and traditional Chinese medicine. He is the author of many professional training manuals as well as the developer of a comprehensive Stress and anger Management program. Derek does extensive speaking and lecturing to

organizations across North America providing healthcare education. These organizations have included; Toronto District School Board, CGI, Symantec, Canadian Military, and the Canadian Addiction Intervention Association & more. Derek is President of the National Wellness Corporation and Director of the National Wellness Institute of Education, providing quality education to healthcare and the Owner/Director of "Healing in the Park”.

Myasthenia Gravis Support Meeting Details on Page 3.

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



BY PHONE: 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, 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

Pat Griffiths, Ottawa, Ontario. 613-237-1649

Let me see clearly Open my eyes and let me see the scene Past my lashes and blurred vision These droopy eyelids can be so mean. Singing away with my two-tone voice Swaying on the karaoke floor I squeak and crow, but I have no choice And then I don’t want to sing anymore. I didn’t want to have this It’s not supposed to be And others also, have not agreed To be host to this MG. It’s dancing hand in hand with friends Lupus and fibro-my, An alliance designed, I sometimes feel To make life pass on by. But my group of MG angels

Who catch me before I fall

Also educate and inform me

That I can still, pretty much, have it all.

Open My

Eyes By Josie Roth

I wrote this poem

to share with others

my feelings

about MG.



Will I get sick today? What it’s like to live with an unpredictable

disease (Myasthenia Gravis). BY LIZ WITIUK (CONTRIBUTED TO THE GLOBE AND MAIL PUBLISHED AUGUST 17, 2018 UPDATED AUGUST 19, 2018 SANDI FALCONER/THE GLOBE & MAIL First Person is a daily personal piece submitted to the Glove & Mail by readers.) The most important aspect of life is to keep breathing. That may be glaringly obvious, but I hadn’t really thought about it until I couldn’t breathe. When your breathing capacity starts to decline, each breath gets incrementally more shallow. You begin to panic. Yet, panic makes it worse. You’re told to stay calm, so you can keep breathing. But you can’t breathe, so is it possible to stay calm? Last fall, at the age of 29, I spent the better part of four weeks as an inpatient at Toronto General Hospital with this task – trying to keep breathing on my own. “How long will this last?" I anxiously asked my neurology resident when I had been transferred to the ICU. I had been transferred because my breathing capacity had diminished such that I needed frequent monitoring, in case I needed to be intubated – when a tube is inserted through the mouth into the airway to help you breathe. I had lost the ability to swallow or talk, and communicated through text message with the doctors and my family. A feeding tube had to be inserted so I could take the medications I needed. I felt like I was choking on my own throat secretions; it was excruciating and I could not quell my anxiety, despite my family’s best efforts to calm me. The doctors said we had to wait for the new medications to kick in. Thus far, they had not. I see myself as an independent, competent woman. But in this moment, I felt as if I had lost everything. I was in a constant state of panic, the adrenaline

pumping through my veins. I couldn’t concentrate on anything other than the fear and confusion. I couldn’t sleep and I dreaded being alone, even momentarily. I had been admitted to the hospital because I had a rare neuromuscular disorder called myasthenia gravis. You have probably never heard of it – neither had I, prior to diagnosis. I was diagnosed a few years ago, at 28, when I was having difficulty moving my face to chew or smile. I felt like I had run a marathon every day, despite just doing regular tasks around the house. By the

Continued on Page 10



Continued from Page 10 Will I Get Sick Today?

time of my hospital admission one year later, I had descended into a myasthenic crisis. I slowly lost the ability to chew and swallow, and my breathing capacity steadily declined. Before my myasthenia symptoms began, I was carefree and able-bodied. The extent of my interaction with our health-care system prior to my diagnosis was restricted to one incident when I managed to lodge a fishbone in my throat in my early 20s. A trip to urgent care and a really long pair of tweezers swiftly solved this problem. Myasthenia gravis is an autoimmune disease. Women are significantly more likely than men to be diagnosed with autoimmune diseases and women are likely to be diagnosed in their child-rearing years. So I was incredibly typical, with my rare disease. The disease, being highly treatable and not degenerative, felt manageable for my type-A self, when I was first diagnosed. I’d start taking some medications, regularly receive a blood product (IVIG) and continue on with my everyday life. But I didn’t know how bad it could get, having never had a crisis at that point. I didn’t know that losing the ability to swallow, a reduced breathing capacity and feeling as though you are choking on yourself, could put you on the brink of hysteria, let alone death, if untreated. Thankfully, a few days into my stay in the ICU last year, the medications began to work. On my final day in the ICU, I was strong enough to get out of bed and I took a short walk around the hall. I read a poster in the hallway outside my room that said the goal of this particular ICU was to provide excellent health care to the sickest patients in Canada. This was equally distressing and motivating to me. I spent 28 years in near-perfect health. It seemed impossible to consider myself one of the sickest patients in Canada. I was suddenly adamant that I needed to get better, and fast. A week later I was discharged. A month later I was back at work, albeit on a part-time basis. I now regularly have flashbacks to the crisis, knowing that it could happen again at any time by a spike in my immune system caused by the flu, or another respiratory infection.

Health is precarious, yet we don’t think about it that way when we are healthy, especially when we are young and healthy. Young people often see themselves as immune from the ailments that plague the elderly. My 27-year-old self would have told you that rare disorders and diseases only affect a select few. Now I know this is naïve. Good health can be ephemeral and just beyond reach. Knowing that being in good health is precarious sometimes manifests itself

as Continued on Page 11



Myasthenia Gravis Society of Canada Support Meeting. Sunday,

September 30, 2018, and Sunday, December 2, 2018, Loblaws Community

Meeting Room, Bayview Village Mall, 2877 Bayview Village Mall, North York,

M2K 2S3. 6-8 p.m. Info: 905 642 2545 www.MGCanada.org for more information.

Myasthenia Gravis Manitoba Inc. is holding support meetings Thursday, September 20, 2018 and November 15, 2018 at 7:00 pm at St. Boniface Hospital, 409 Tache Avenue, Winnipeg, Basement South Entrance. Room AG001 & 2. Bring family and friends and share your experience with Myasthenia Gravis. Info 204 444 7802

The Myasthenia Gravis Association of BC hosts Support Group Meetings twice a year.. They are celebrating their 60th anniversary this year. Contact Information email: Myasthenia [email protected] or call 604 451 5511 for 2018 dates.

MG Victoria Support Group, Monthly Meetings. [email protected].

2018 Myasthenia Gravis Patient Education Day Saturday, September 29, 2018. The 9th Annual Patient Education Day is being held in Edmonton by the University Hospital Foundation. Presentations by MG experts on treatments, quality of life, techniques for living with MG. For inquiries contact Aimee Soloway at 780 407 8388.

as gratitude. I am incredibly lucky for my quick diagnosis, our public health-care system and the care I received (and continue to receive). Other times, it manifests itself as utter fear. Will today be the day I have a crisis? A myasthenic crisis can occur over weeks, days or hours. I could be fine today and in an ICU tomorrow. This is a reality that I will live with for the rest of my life. Myasthenia gravis is a highly treatable but not (currently) curable illness. I’m working on limiting the fear and anxiety that goes along with this truth, but it’s a journey. Some days the gratitude prevails over the fear, and other days the fear tri-umphs the gratitude. My main goals now are to stay calm and keep breathing. It may seem simple, but if you can’t do that, what else matters? Liz Witiuk Lives in Toronto. First published in the Globe and Mail Published by permission of Liz Witiuk, member of Myasthenia Gravis Society of Canada Facebook support group.

Continued from Page 10 - Will I Get Sick Today?

Myasthenia Gravis Events



Exercise and Myasthenia Gravis: A Review of the

Literature to Promote Safety, Engagement, & Functioning Julia Naumes1*, Charlene Hafer-Macko2 and Sarah Foidel1 1School of Occupational Therapy, Pacific University, USA 2Department of Neurology, Neuromuscular Division, University of Maryland School of Medicine, and Geriatric Research Education Clinical Center (GRECC), Baltimore Veteran’s Administration Medical Center, USA *Corresponding Author:

Julia Naumes, School of Occupational Therapy Pacific University, Hillsboro, OR 97123, USA Tel: 1-808-345-2091 E-mail: [email protected]

Received date: June 04, 2016; Accepted date:June 29, 2016; Published date: June 30,/16 Citation: Naumes J, Hafer-Macko C, Foidel S (2016) Exercise and Myasthenia Gravis: A Review of the Literature to Promote Safety, Engagement and Functioning. Int J Neurorehabilitation 3:218. doi:10.4172/2376-0281.1000218 Copyright: © 2016 Naumes J, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.


A Scientific View of Exercise for

MG Patients—Part II

Abstract Currently no exercise protocol exists to inform healthcare practitioners how to advise individuals with myasthenia gravis how to begin exercise after stabilization of symptoms, which exercises are most beneficial for improving functioning, or detailing how to progress difficulty of the exercises as improvements in physiological functioning are made. However, with improved strength and endurance, individuals with myasthenia gravis will have a more meaningful life and the ability to engage in activities that are important to them. This literature review demonstrates that with skilled supervision by a rehabilitation professional, exercise is safe for those with mild myasthenia gravis and that strength gains and improvements in physiological functioning are possible. This research supports that exercise may decrease fatigue, increase strength, and improve functional mobility in individuals with myasthenia gravis. Additional rehabilitation research needs to be conducted on the physiological effects of exercise on individuals with myasthenia gravis and which exercises have the most significant impact on function and levels of fatigue.

In the June 2018 issue of Contact, Part I of this Review was

printed (available on our website or call 905 642 2545 for a copy).

To follow is the introduction to the review, followed by Part II.

https://www.omicsonline.org/open-access/exercise-and-myasthenia-gravis-a-review-of-the-literature-to-promotesafety-engagement-and-functioning-2376-0281-1000218.php?aid=76088#A1

https://www.omicsonline.org/open-access/exercise-and-myasthenia-gravis-a-review-of-the-literature-to-promotesafety-engagement-and-functioning-2376-0281-1000218.php?aid=76088#corr



https://www.omicsonline.org/open-access/cd4-profile-and-relationship-with-bacterial-isolates-from-the-blood-ofhiv1-patients-attending-art-clinic-at-a-tertiary-healthcare-.php?aid=77092

https://www.omicsonline.org/open-access/title-a-novel-pain-rehabilitation-technique-2329-9096-1000e114.php?aid=77301

https://www.omicsonline.org/scholarly/neuro-rehabilitation-journals-articles-ppts-list.php



This is the first prospective study to show that supervised strength-training

Is safe and can improve leg strength in the MG population. In support of

these benefits, a case report of a six week strength-training and aerobic exercise in

an individual with MG demonstrated decreased self-rated fatigue, improved hip

extensor and flexor strength, and his ability to golf [8] (Table 1).

Citation n Type Duration Design What was tested? Positive Negative

Results Results

Lohi Internal Voluntary muscle 23%- Slight to Lindberg, Strength- 10 weeks Control; force; max. moderate and 11 training 27-30 Ipsilateral Dynamic, muscle pain Anderson sessions trained; repetitive max. force initially; (9) Contralateral isometric in knee Fatigue untrained contraction extention with fatigue repetition Wong et Balance 8—16 Delayed MG severity, QMG; None al. (5) 5 Strategy weeks 16 entry control function, balance TUG; Training sessions balance Davidson, Strength- 6 weeks Case study Balance, gait, extensor Fatigue Hale, and 1 training total (4 fatigue, and & flexor with Mulligan and weeks at strength strength repetition (8) aerobic home) able to golf

Table 1: Research on exercise and MG

Resistance exercises (bench press, lat pulldown, shoulder press, leg extension, and leg curl) three times per week for fifteen weeks were combined with creatine supplementation (five grams daily) in an individual with MG. This combination was safe and improved peak leg strength, fat free mass, and load volume [16]. Similarly, a ten-day creatine monohydrate supplementation increased lean body mass, grip strength, dorsiflexion, and knee extensor strength in patients with neuromuscular disorders [17]. The final exercise study explored the use of cooling vests to improve exercise performance in individuals with MG (n=6) [18]. By reducing mean body temperature an average of 0.6ºC, these vests improved mean maximal inspiratory pressure (pre 64.6 vs. post 79.5 cm/H2O; p<0.03) and mean myasthenic muscle score (pre 91.9 vs. post 96.3; p<0.05). The use of cooling vests may enable more frequent and sustained engagement in exercise for the MG population.


Continued from Page 12: A Scientific View of Exercise for MG Patients Part II

Editor’s Note: One of the goals of the participant

in the above case study, was to improve his ability to golf.

Result? Positive.

https://www.omicsonline.org/open-access/exercise-and-myasthenia-gravis-a-review-of-the-literature-to-promotesafety-engagement-and-functioning-2376-0281-1000218.php?aid=76088#8






Individuals with MG may benefit from a rehabilitation program in combination with medical therapies to improve function, modify daily living tasks using principles of energy conservation and compensatory techniques, facilitate return to work and social participation, cope with and adapt to physical limitations, and improve mental health [15,19]. Occupational therapists (OT) enable their clients to engage in occupations that are meaningful to them by adapting the environment, occupation, or person [20]. Based on review of the evidence and OTs scope of practice, interventions that could benefit the MG population include [21]:

Environmental modifications Task Analysis Ergonomics Energy conservation techniques Sleep hygiene Education Nerve glides Diaphragmatic and deep breathing Assistive devices Bed mobility Exercise prescriptions Balance Training Additionally, with OT’s knowledge of activity analysis and physiology, practitioners can develop specific therapeutic exercise programs to enable individuals with MG to engage in occupations, activities, or exercise that is important to them. This review demonstrates that it is safe for people with mild to moderate MG

to exercise and those improvements in physiological functioning are possible. Exercise can decrease fatigue, increase strength, and improve functional mobility [5,8,9,16-18]. Prior to initiating a new exercise program, the MG symptoms should be controlled and stable. Professional supervision is recommended for exercise in this population to individualize the program. Rehabilitation professionals, including OT, are highly trained to accommodate for fatigue and weakness. For individuals with more severe myasthenia symptoms, the program should focus on lower intensity activities and incorporate frequent rest breaks. Training prescriptions may need to be modified with reduced numbers of exercise sets, repetitions, and work load. Individuals should exercise during the periods of the day with peak energy, such as the morning or following a rest [14]. Due to the great variability in MG symptoms, it is vital to develop and modify the exercise program to accommodate for changes in function.


Continued from Page 13: A Scientific View of Exercise for MG Patients

Skilled Supervision of Exercise

Discussion













The purpose of this literature review is to highlight the need for an evidence-based exercise protocol to enable the MG population to maintain/improve physical functioning and in turn to enable more engagement in meaningful occupations and activities. Clearly there is a lack of rigorous evidence supporting specific

therapeutic exercises and interventions for the MG population. However, the

research available demonstrates that it is safe for people with mild

MG to engage in supervised exercise programs. Strength gains and

improved functional abilities are attainable with rehabilitation

professional.

MG is often described as a snowflake disease because it presents differently for each person. Furthermore, each person with MG may experience variable ability to train from session to session, or even within a session. This must be taken into account when developing a therapeutic exercise program for an individual with MG so that the individual can successfully and safely engage in exercise without exacerbation of symptoms. Additionally, frequent rest breaks, low repetitions, low intensity exercises, and function-based exercises will enable successful and safe engagement in exercises for the MG population.

References

Burns TM, Graham CD, Rose MR, Simmons Z (2012) Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve 46: 9-25.

Cavel-Greant D (2005)You, me and Myasthenia Gravis(3rd ed.). Ku: reh Press USA.

Elsais A, Wyller VB, Loge JH, Kerty E (2013) Fatigue in myasthenia gravis: is it more than muscular weakness? BMC Neurol 13: 132.

Leonardi M, Raggi A, Antozzi C, Confalonieri P, Maggi L, et al. (2010) The relationship between health, disability and quality of life in Myasthenia Gravis: results from an Italian study. Journal of neurology 257: 98-102.

Wong SH, Nitz JC, Williams K, Brauer SG (2014) Effects of balance strategy training in myasthenia gravis: a case study series. Muscle Nerve 49: 654-660.

Grohar-Murray ME, Becker A, Reilly S, Ricci M (1998) Self-care actions to manage fatigue among myasthenia gravis patients. Journal of Neuroscience Nursing 30: 191-199.

Conti-Fine BM, Milani M, Kaminski HJ (2006) Myasthenia gravis: past, present, and future. J Clin Invest 116: 2843-2854.

Davidson L, Hale L, Mulligan H (2005) Exercise prescription in the physiotherapeutic management of Myasthenia Gravis: a case report. NZ Journal of Physiotherapy 33: 13-17.

Lohi EL, Lindberg C, Andersen O (1993) Physical training effects in myasthenia gravis. Arch Phys Med Rehabil 74: 1178-1180.

Skeie GO, Apostolski S, Evoli A, Gilhus NE, Illa I, et al. (2010) Guidelines for treatment of autoimmune neuromuscular transmission disorders. European Journal of Neurology 17: 893-902.

Grob D (1999) Natural history of myasthenia gravis. Contemporary Neurology Series 56: 131-145.

Scheer BV, Valero-Burgos E, Costa R (2012) Myasthenia gravis and endurance exercise. American Journal of Physical Medicine & Rehabilitation 91: 725-727.

Leddy JJ, Chutkow JG (2000) Myasthenia gravis in a collegiate football player. Med Sci Sports Exerc 32: 1975-1979.

Cass S (2013) Myasthenia gravis and sports participation. Current sports medicine reports 12: 18-21.

JayamTrouth A, Dabi A, Solieman N, Kurukumbi M, Kalyanam J (2012) Myasthenia gravis: a review. Autoimmune Dis 2012: 874680.

Stout JR, Eckerson JM, May E, Coulter C, Bradley-Popovich GE (2001) Effects of resistance exercise and creatine supplementation on myasthenia gravis: a case study. Medicine and science in sports and exercise 33: 869-872.

Tarnopolsky M, Martin J (1999) Creatine monohydrate increases strength in patients with neuromuscular disease. Neurology 52: 854-857.

Mermier CM, Schneider SM, Gurney AB, Weingart HM, Wilmerding MV (2006) Preliminary results: Effect of whole-body cooling in patients with myasthenia gravis. Medicine and science in sports and exercise 38: 13-20.

Twork S, Wiesmeth S, Klewer J, Pohlau D, Kugler J (2010) Quality of life and life circumstances in German myasthenia gravis patients. Health Qual Life Outcomes 8: 129-139.

American Occupational Therapy Association (2014) Occupational therapy practice framework: Domain and process (3rd ed). American Journal of Occupa-tional Therapy 68: S1-S48.

Preissner K (2014) Occupational therapy practice guidelines for adults with neurodegenerative diseases. AOTA Press 1005:187.

Continued from Page 14: A Scientific View of Exercise for MG Patients

More related articles at International Journal of Neurorehabilitation.

Conclusion

https://www.omicsonline.org/open-access/forced-exercise-for-freezing-of-gait-in-post-stn-dbs-parkinsons-disease-patients-2161-0460.1000171.php?aid=33348

https://www.omicsonline.org/international-journal-of-neurorehabilitation.php

https://www.ncbi.nlm.nih.gov/pubmed/


http://www.abebooks.com/Myasthenia-Gravis-Cavel-Greant-Deborah-Nicolle-Michael/7639969865/bd


https://www.ncbi.nlm.nih.gov/pubmed/19669388






http://web.b.ebscohost.com/abstract?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl=03037193&AN=17183593&h=8xlIQLKqkdyG9WYqBQbIxc4phiFzTD3FpPhtFKYd50l5dFDaqJ7HxN2tm0Di30NaXIJ%2b8BJ0uaFYNj%2baDuci0g%3d%3d&crl=c&resultNs=AdminWebAuth&resultLocal=ErrC

http://web.b.ebscohost.com/abstract?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl=03037193&AN=17183593&h=8xlIQLKqkdyG9WYqBQbIxc4phiFzTD3FpPhtFKYd50l5dFDaqJ7HxN2tm0Di30NaXIJ%2b8BJ0uaFYNj%2baDuci0g%3d%3d&crl=c&resultNs=AdminWebAuth&resultLocal=ErrC














https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994799/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2994799/

http://ajot.aota.org/article.aspx?articleid=1860439

http://ajot.aota.org/article.aspx?articleid=1860439

https://www.guideline.gov/content.aspx?id=48512

https://www.omicsonline.org/archive-international-journal-of-neurorehabilitation-open-access.php



Thank you for the support Myasthenia Gravis Society of Canada has

received from “Celebration of Life”

Memorium gifts, memberships, donations &

MG Fit pledges.

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education and to contributing to Myasthenia Gravis Research.

Donations can be mailed to Myasthenia

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Australian MG Association Alarm supported by MG Canada

MG—Myasthenia Gravis versus Mgen—Mycoplagma genitalium “Misuse of acronym 'MG' risks confusion of two different medical conditions The PHAA was recently contacted about the issue of misuse of the acronym MG which is risking confusion amongst medical professionals and the general public over two distinct medical conditions: Myasthenia Gravis and Mycoplasma genitalium. The acronym MG correctly refers to Myasthenia Gravis, a chronic autoimmune neuromuscular disease. However the acronym has increasingly been applied to refer to the sexually transmitted infection Mycoplasma genitalium in medical settings, medical literature and in the mainstream media. The correct abbreviation to use when referring to Mycoplasma genitalium is Mgen or M.gen. It is important to distinguish clearly between the two conditions in all settings. This is to ensure that people affected by either condition receive the appropriate treatment from their healthcare providers, to maintain community understanding of the respective conditions, and to avoid a negative impact on advocacy efforts or research opportunities for the two conditions




New/Renew Your MG Canada

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MG Canada "Support" Facebook quotes to September 2018

For those of you with ocular MG, how long did diagnosis take? I had a referral appointment with Dr. Nicholle in London yesterday and while things are consistent with a diagnosis, nothing is definitive. Next round of blood testing is heading off to the UK, because they are able to detect some more antibody variants (my wording). I went off mestinon prior to my appointment and discovered how much of a difference it is actually making for me, which is a positive thing. Dr. Nicholle’s suggestion is to double the dose. It is good to feel like things are being taken seriously, but am longing to read a book. Hi everyone I'm looking for some input... my dad got his thymus gland removed

Feb 26th and he was doing really well... but this week his speaking has gone

downhill again like bad. he's still on medication and it doesn't seem to be helping. the Dr. seems to think it's because he's tired but he's really trying to take it easy. has anyone else experienced this? Any tips? advice? anything?? We are so confused and it's turning to major worry. thanks in advance My husband's neuro has finally agreed to start him on a trial of Mestonin

though he is seronegative. He took is first 1/2 pill on Friday afternoon another later that night, by Saturday morning he was feeling great. He said it was if 50 pounds had been lifted off his arms and legs. Sunday morning he woke me up to say that there was only one clock on the night stand (he always saw two in the morning). He is still having trouble with his voice and fatigue. He is taking 30mg 3 times a day for 7 days and then increase to 60mg 3 times a day. Is this usually a starter dose? It is my Wife ... that has (M.G.), not myself… she has been dealing with this for

about 4 yrs now and it has come back to haunt her the past few weeks...she just came off 5 IVIG treatments a couple of weeks ago at the U of A Hospital here in Edmonton, Alberta… has also had several Blood Tests done (about 16 or so Blood Tests as of a week ago) so we are await-ing word from Dr. Siddiqui as to what they are going to do next to bring her strength back up to what it used to be… she has to sit down and rest frequently…..

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Quarterly News Volume 42 Issue III September 2018 MG Canada … canada contact... · 2018. 9. 24. · new owner is ecstatic and MG Canada is the beneficiary of a wonderful gift. Thank