Volunteer Profiles: Michael Soo-Chan

Written By: Brendan Hair

With the bitter cold and frigid air this winter season, a vacation in tropical Trinidad & Tobago would help many Canadians struggling with the cold.  But a polio survivor from the Land of the Hummingbird has brought plenty of warmth to March of Dimes of Canada (MODC).Michael came to Canada from Trinidad in 1965 to attend McGill University where he graduated with a B. Eng. – Chemical.   He later earned a business degree from the University of Windsor (B. Commerce – Hon. Business Administration) while working full time.

Michael contracted polio as an infant leaving him with a severe impairment to his right leg.  Despite this, as a Process Engineer, Michael battled through physically demanding on-site jobs, including time at an oil refinery in Montreal, Quebec and a petrochemical plant in Sarnia, Ontario. The physical demands of the job took its toll and Michael made a decision to switch his career to the Financial Sector.  The Pickering resident now enjoys retirement from Ontario Power Generation (OPG) but dedicates his time to volunteering with MODC’s Durham Post-Polio Chapter.  Michael serves in the volunteer role of Treasurer, and has a keen interest in researching stories and developments in the post-polio world to share with his fellow polio survivors.  While Michael considers himself mobile, his objective is to assist people with more severe post-polio symptoms.

“I think I’m in a better position to help those who are less fortunate than myself and I do this through the information that I share,” said Michael.  Wheelchair accessibility is an area of concern for those survivors who use wheelchairs and who will/may require them in the future.  Michael is optimistic that wheelchair accessibility at public facilities and premises will keep expanding to remove any restriction to mobility for wheelchair users.  “There is a movement now to make those changes happen and we must give our full support to making sure it will.  We must not rest easy.”

Michael Soo-Chan
Michael Soo-Chan

While the spread of polio may not be a current issue in Canada, it is very much alive in countries like Nigeria, Afghanistan and Pakistan.  He believes the problem can be greatly diminished by administering the vaccine, as seen in India which was declared polio-free in 2014, with the last case reported in 2011.   His hope is that Pakistan (opposing) will look at India’s success and come around to accept the vaccine as the path to eradication of this disease.  Michael says, “In Canada and the Western world, the problem is recognizing and identifying the symptoms of PPS (Post-polio Syndrome).  A disease, long eradicated in Canada, medical practitioners are not familiar with the disease nor do they understand the lasting trauma to the survivor and its impact on him/her in later years.  We, as post-polio survivors, through communication, collaboration and consultation with our doctors can become our own best advocates.”

Erica Mugan, MODC Group Developer, values Michael’s contributions as a volunteer: “Michael is an integral part of the Durham Post-Polio team. His enthusiasm and interest in finding resources to inform the group about what is current in the world of polio and post-polio is greatly appreciated.  The group meets monthly and he always brings along resources that he has researched.”  “He is a valuable asset to the team and I am sure that his peer support group members would agree.”

Michael is the father of two daughters, enjoys cooking and is an advocate of healthy lifestyles.  He is an avid photographer who confesses to shooting almost everything: “I love street scenes, land and cityscapes, people, nature, birds and animals.”  He has contributed to the creation of an annual calendar that the group puts together for the Durham region.

To learn more about Post-Polio Canada, a program of March of Dimes Canada, please visit: www.marchofdimes.ca/polio
Originally Published April 15, 2015.

Jess’ Blog: #MODCBusTour

Written By: Jess Weber

My name is Jessie. I’m 28 years old and I live at home but one day I hope to reach the milestone of eventually moving out.  I was diagnosed with Spastic Quadriplegic Cerebral Palsy right at birth which affects my arms and legs, my hand coordination, my learning, and my speech.  I use many methods of communication; however my main method is my iPad.  Having Cerebral Palsy is something I have learned to deal with.

Jess at the #MODCBusTour Launch in Toronto.
Jess alongside the MODMobility at the #MODCBusTour Launch in Toronto.

Since graduating from school, I’ve had a tough time transitioning from being a student and being involved in camps and programs to becoming an adult and seeing my active life shutting down before my eyes.  As a child, I attended summer camp every year and during the school year I participated in social groups and played wheelchair hockey on the weekends. I was hardly ever home!  As an adult who requires support in every activity of daily living, I began staying home a lot and was only able to go out when my mom was available.

Suddenly, I felt stuck, relying on my mom for recreational and enjoyment activities. We did much research in finding an appropriate program for me, however I never met the requirements.  I was either too mobile in my wheelchair, or I needed too much personal support, or did not meet the behavioural requirements.  Other programs did not provide any support, leaving it up to me to hire a support person.

Since joining the March of Dimes Canada’s LIFE Toronto program I’ve become happier, more active and I started to have meaning in my life again. I was very fortunate that I was asked to be a mentor for the next two sessions I attended.  As a mentor, I set a positive role model to the other participants. I encourage them to try new things and be amazing individuals. I also help participants new to the program feel comfortable and at ease in this new environment. LIFE Toronto is an amazing program which combines fun and learning experiences. My favourite parts of the programs would have to be the social outings, Conductive Education and life skill development workshops, especially now that I have had a hand in facilitating them.

I developed a workshop on stress management and coping that I facilitated to the rest of the group. The participants really enjoyed it and it was very impactful coming from me, one of their peers in the program.

Thinking back to these parts, all of them have contributed to my personal growth during my time with the LIFE program.  The Outward Bound and Variety Village programming showed me that anything is possible if I put my mind to it. During the day camp out activity, we worked as a team to put up a tent without staff’s assistance for the first time and I also reached the milestone of swinging on a regular swing.

Conductive Education is a community rehabilitation program that we participate in once a week with the LIFE program. I have seen some amazing changes in my physical ability since starting conductive education in 2013. I can now transfer on my own, using the walking ladder from my chair to stand and sit on the plinth totally independently.  I’m getting better at lying down by myself and positioning myself in a straight lying position. I also worked on walking with various ladders to hold on my sides. This helps me transfer my weight onto one leg as I grab the next ladder with my other hand. I’ve really come a long way since I’ve first started Conductive Education at the end of March 2013 and I look forward to seeing what I accomplish next.

Taking part in the LIFE Toronto program has created meaningful changes for me and I’m excited about the possibilities the expansion of the Mod Mobility program has in store. The new bus is about to kick off it tour – watch out for it at events in your community!

Jess, LIFE Toronto Program particiapants, Keith Rashid and March of Dimes Canada President and CEO Andria Spindel take part in the ribbon-cutting ceremony for the #MODCBusTour.
Jess, LIFE Toronto Program participants, Keith Rashid and March of Dimes Canada President and CEO Andria Spindel take part in the ribbon-cutting ceremony for the #MODCBusTour.
March of Dimes Canada will be embarking on an accessible bus tour to highlight the need for inclusion in recreation and community participation for people living with disabilities
For many Canadians living with physical disabilities, there are barriers to accessing the recreational activities and community events that lead to friendships and essential social integration. March of Dimes Canada’s MODMobility Bus offers flexibility in configuration that can accommodate up to 10 wheelchairs and 10 seated passengers, allowing groups to enjoy recreational activities, day trip and family outings
To Learn more about the Bus tour click here.
Be sure to Follow #MODCBusTour on Twitter, Facebook and Instagram

I am a caregiver – now, today and forever.

On Thursday, June 4, 2015 guests at the Ability & Beyond Dinner presented by Bell will be inspired by Captain Mark Kelly’s “Endeavour to Succeed” keynote address.

Captain Mark Kelly is an American astronaut, who flew missions aboard the Space Shuttle Endeavour, the Space Shuttle Discovery, and is one of only two individuals who has visited the International Space Station on four different occasions. He is also a retired US Navy Captain, bestselling author, prostate cancer survivor, and an experienced naval aviator. Named one of Esquire’s 2011 Americans of the Year, Kelly exemplifies leadership, the importance of teamwork, and courage under pressure.

Captain Kelly and wife Gabrielle Giffords
Captain Kelly and wife Gabrielle Giffords

Captain Kelly will speak about his incredible life and his personal experience caregiving for his wife, former US Congresswoman Gabrielle Giffords, during her recovery from a traumatic brain injury, the result of an assassination attempt in 2011.

Captain Kelly will share stories designed to inspire and help people find their purpose. He says he has learned valuable lessons from his experiences flying in combat, his space missions and more personally, when his wife was shot and his world changed forever. He became Ms. Gifford’s primary caregiver during her recovery from her brain injury, which also resulted in aphasia. He continues this role today, and cherishes it.  He will speak of his life as a caregiver, and how living with aphasia affects the whole family.

Approximately 1/3 of brain injury survivors will have aphasia. The condition causes communication challenges, but is not a sign of reduced intelligence. Understanding aphasia is crucial to helping improve communication not only for brain injury survivors, but also their caregivers, loved ones and families.

March of Dimes Canada provides services for people with aphasia through a number of programs, camps and support groups. All of these are crucial to helping alleviate the isolation and depression that can occur when first learning to live with the condition.

Captain Kelly is thrilled to be sharing his life lessons with guests at a fundraiser supporting March of Dimes Canada’s Aphasia and Communication Disability Program (ACDP).  His wife lives with the condition, and weekly visits an aphasia communication group, similar to those offered by the program.

“I am very excited to be coming to Toronto and sharing a bit of my story with March of Dimes clients and supporters,” says Captain Kelly. “I hope that guests will leave feeling empowered and learning a little about the power of the human spirit, to recover and to overcome.”

For tickets and more information, click here.

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