” ‘You will dance again..’ rang in my ears! It was a challenge I thought impossible.” – Len Boser, Stroke Survivor

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Stroke Survivor Stories: Len Boser
Written by Len Boser.

Fifteen years ago, I woke up to find the course of my life had changed forever. The day before, I was a physically active, healthy person leading the normal life of a father of two young sons, 7 and 10 years old. Overnight, I had a severe brain stem stroke that left me unable to walk, to talk and completely paralyzed on my right side.

After one and a half years in the hospital, I felt frustrated and hopeless despite the care of doctors and many trained healthcare practitioners. Despite their care, I did not know how to get my life back.

But, luckily, the inspiration and support from a fellow stroke survivor helped motivate me. His story about his recovery and even being able to dance again got me working on my rehabilitation and interested in helping others on their recovery as well. “You will dance again..” rang in my ears! It was a challenge I thought impossible.

Encouragement, support from my peers…and my motto…“Never Give Up!”

Len Boser 2
Len Boser

A key to the quality of recovery is support from fellow stroke survivors and their
caregivers…the people who have first-hand experience. This peer support was instrumental for me. And that is what March of Dimes Canada’s Stroke Recovery Canada® is all about…reaching out to other stroke survivors and giving them understanding, knowledge and hope.

 

For more information on Stroke Recovery Canada®, please visit: http://bit.ly/ModcSRC

 

LIFE Toronto reviews Apple Store’s iPad Workshop

Written by Amy Kostash

Last Friday, the LIFE Toronto group did a social outing to the Apple Store at the Eaton Centre for an iPad workshop. The experience was fantastic! The employees of the Apple Store were wonderful, they clapped us into the store, ensured there were no obstacles in our way, and really made an effort to get to know each and every person attending.

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Amy and Tyler snapping a pic on the iPad

Prior to the workshop, the Apple Store staff checked in with us to find out what it was we were interested in learning. They catered the workshop entirely to our needs and interests! First, we learned about some accessibility features the iPad has, and everyone got to try it on their own. There were enough staff to assist if anyone needed it. Next, we learned about the different ways to take photos and videos like square, panoramas, and time-lapse videos. Sraddha’s personal favourite was when we learned about airdrop! It was so easy to send photos to the other iPads in the workshop, and it was especially fun to see the expressions on their faces when they received our silly photos. Tyler was particularly interested in learning how to print photos from his iPad at home. The staff were eager to explain and demonstrate airprint for him.

 

Jess was very impressed with the Apple Store employees and appreciated how they spoke directly to her, rather than only speaking with the LIFE Toronto staff. She says, “they were very accommodating of our needs.” After the workshop, Jess wanted to make a purchase and more than one of the Apple employees was eager to help her out, even bringing the items right to her so she didn’t need to fight the crowds!

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Danielle and Jess taking a selfie with the iPad!

All in all, out LIFE Toronto group left the Apple Store with a collection of funny photos, new information regarding accessibility features of the iPad, and Apple USB bracelets!

The LIFE Toronto group encourages everyone to check out workshops at the Apple Store! They have a variety of topics, and they are very helpful and accommodating. The LIFE Toronto group is looking forward to going back for an iMovie workshop when they reach the editing stage of a project they’ve been working on.

LIFE weighs in on recent TTC “Stay Focused. Stay Safe.” awareness campaign

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written by Amy Kostash and Danielle Hepburn

One component of our Learning Independence for Future Empowerment (LIFE) Toronto program is transit training. This allows participants to get one-on-one assistance using the Toronto Transit Commission (TTC) to get to a destination of their choice; usually back home from our national office. During our transit training sessions, we cover everything there is to know about the TTC from safe use procedures to its accessibility and planning our route. For the individuals in the LIFE Toronto program, this transit training provides an alternative to Wheel Trans should they feel comfortable enough taking it on their own.

Recently, the TTC published a new campaign aimed at raising awareness of the importance of focus in order to stay safe. These posters can be seen on subway platforms, subway trains, and buses. We asked the participants of our LIFE Toronto program their thoughts on these new posters.

Stay Focused Graphics

The first poster shows a woman in a wheelchair using the deployed ramp of a bus while a pedestrian is running past, unaware of the ramp. The message this poster aims to spread is that pedestrians need to be more aware of ramps and the potential they could be deployed at any time, and may cause a tripping hazard. The second poster shows a gentleman in a power wheelchair waiting for the bus while pedestrians hurry past him. The message this poster aims to send is that persons with a disability and/or mobility devices are to be the first to board the bus and the last to disembark.

First, we asked the LIFE Toronto group if any of them had experienced being cut off by pedestrians while waiting for, or getting on their Wheel Trans rides. 4 of the 5 participants say they have been cut off while the ramp of their Wheel Trans ride was deployed. Tyler says “these signs are necessary because people cut us off and don’t know that I have the right of way when getting on a bus.” Jess added that “these posters may not work, the buses already beep and drivers will yell at people, so I’m not sure that a visual poster will necessarily help.”

Another concern that the group had was the use of the selected images on the posters. Both depict the wrong way of doing things! Instead, our group thinks it would be much more effective if the posters showed pedestrians correctly using the TTC and allowing persons with disabilities the right of way. If people don’t take the time to read the message on the poster, there is a chance they could just end up adopting the wrong behaviour after all.

These posters allowed for some interesting discussion in our LIFE Toronto workshops. The group came to the conclusion that it is too early to tell if these ads are working. It will be interesting to see if the attitudes of people change based on the presence of these posters. Also, the group thought it might be interesting to create a poster or image with the same message but from the perspective of an individual in a wheelchair that shows the implications of pedestrians failing to give them the right of way.

Angie Burke’s Story – Stroke Survivor & Peers Fostering Hope Stroke Mentor

Written by Angie Burke.
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Angie Burke, Stroke Survivor & Peers Fostering Hope Stroke Mentor

I was 46years old and it was a normal evening until my husband heard a crash and found me having a seizure.  I was completely flaccid on the left side and my face was drooping.  I was trying to speak but could not. He called 911 as he recognized the symptoms and knew that I was having a stroke.

The next 2 weeks were terrifying. I didn’t know if I was going to live or die.

If I did survive I didn’t know what my life was going to be like? Would I walk again?  Would I talk clearly again?  Would I be able to see clearly again? Dress myself? Feed myself? Would I be able to take care of myself and my family again??

Initially I was unable to walk. I had no use of my left side, I could see nothing on my left side, could not recognize people’s faces – I only knew my husband because of the shirt he was wearing, I could not tell time, I could not write, and the list goes on…

While in the hospital, I had help getting washed, help getting dressed, my meals were brought to me.  This was not the case at home.  The first time that I attempted to dress myself, it took me over an hour.  I remember bursting into tears.  Here I was a grown woman and I couldn’t even put on a shirt myself.  I either had it on backwards or inside out.  The same struggle happened when I tried to cook for the first time.  I couldn’t read, so how was I supposed to follow a recipe? I was extremely weak and still couldn’t see objects on my left side.  I fell and crashed into things constantly.  To make matters worse, I was on blood thinners.  I was always covered in bruises.  Everything was a struggle; from the time I got out of bed until the time I crawled back in again.  I often became so frustrated that I would just scream.  I felt defeated as I needed help with everything.  I felt like I was a burden to my family and completely worthless.  I was terrified that this was what my life was going to be like from now on.

I now have a seizure disorder. I take medication to control them.

I ended up suffering through a depression –oh the depths. The darkness. The hopelessness. The feeling of worthlessness. The loneliness. The despair. The loss of my will to keep fighting. The grief for all that I lost- my career and income, many friends, my freedom (as my driver’s license was suspended), my confidence, my entire identity, my self-worth. The horrible judgments that I passed on myself were devastating. After several months I finally started receiving the treatment, both chemical and therapeutic that helped me to start climbing out of that dark hole and gave me back my will to fight.

Fear in the beginning was crippling. It was my constant companion.  I have learned to overcome fear and have come to the point now, where I can say that I refuse to live in fear. I live in gratitude for the day, today.

I have ongoing memory issues, specifically short-term, but have developed strategies to cope with it.

I faced and overcame all of it; I now work with stroke patients as a Stroke Mentor in the Peers Fostering Hope Program; it is such a wonderful feeling to use my journey to help other stroke survivors that are just beginning their own journey.

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I am an artist; I walk with friends; I walk my dog; I ride my bicycle; I lift weights; When I first started, over a year ago, I could only complete my arm lifts with 2.5 pounds. I was so weak and had lost so much weight.  I gradually increased the amount that I was lifting, and currently I am up to 25 pounds, even with my affected arm.  I run 5k on my treadmill every 3rd day and hope to run a 5k this coming summer, I lawn bowl. I smile and laugh.  I tell jokes.  I enjoy my life.   I am a wife; I am a mother; I am a friend. I am an award winner.  I recently won the award for Extraordinary Women of Kawartha Lakes in the determination category.  Most importantly, I take care of myself and my family!! I have faced the nightmare and I have wakened stronger and more whole than I could ever have imagined.

My message to everyone: Life will throw you curve balls, Life will knock you down, but you’ve got to pick yourself up, dust yourself off and overcome.  I’m NOT telling you it’s going to be easy, but I AM telling you it’s going to be worth it.

Angie also took up drawing after her stroke after a relative suggested she try it. She has used some inspirational quotes as part of her subject. Click on each thumbnail to increase image sizes.

 

For more information on the Peers Fostering Hope program and other support groups, please visit: http://bit.ly/MODCSRS

 

To volunteer with peer visits, please call the Stroke Recovery Warmline® at 1-888-540-6666.

Megan’s Story

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Megan was only 20-years-old when she was diagnosed with multiple sclerosis. Over time, the disease has progressed to the point that she has limited circulation in her legs causing severe swelling and she can no longer walk. Megan’s occupational therapist recommended a power wheelchair with a tilted seat to give her mobility and relieve the pressure on her legs. But at a total cost of $18,730, the chair was out of reach for her financially. After receiving funding from the Ministry of Health’s Assistive Devices Program and the MS Society, Megan applied to March of Dimes Canada’s Assistive Devices Program for the remaining $2,700.

March of Dimes Canada was able to fund the remaining amount to help Megan purchase the wheelchair, and she is amazed at the difference it has made. Megan has become more mobile and much more comfortable.

It’s a godsend,” says Megan of her chair. “It’s very helpful. For years I’ve had massive swelling in my legs and since I’ve gotten my chair I now have knee caps and shape to my legs… I feel very blessed to have been able to access this resource.”

Megan is very grateful to all the generous donors who contributed to her power wheelchair.

Thanks to your support over the last year, we have been able to provide 282 assistive devices to 119 consumers just in the Ottawa region alone! We were able to turn every dollar donated into $5.44 worth of equipment – purchasing in total $204,231 worth of assistive devices.

You are making a difference in your community!

You can now be part of our Door-to-door campaign without having to leave the couch! Sign up as an online canvasser and use the power of the Internet to help raise money to support Canadians with #disabilities: http://bit.ly/D2DOnline

 

 

“Why I Canvass” – Wayne Eastabrook

Door-To-Door-Wayne-EastabrookPeterborough resident Wayne Eastabrook has been canvassing his neighbourhood in support of March of Dimes Canada’s Door-to-Door Campaign for over a decade. He was first driven to support the Campaign after the organization provided financial assistance to his daughter Kate that allowed her to move into her own apartment.

“I don’t believe that Kate would be able to be as independent and live on her own without the support of March of Dimes Canada,” says Wayne. “It made the transition from our home into a supported apartment so much easier, and our whole family is very grateful for this.”

He started canvassing his neighbours and is able to raise $300 -$400 each year. His community members know he’s coming, and are prepared with a small donation when Wayne comes to their door.

“I like to canvass in January, because how can anybody turn away a man in the cold,” jokes Wayne. “But really, I like to remind my neighbours that this a good cause, helping people in their community, and that every bit counts” he says.

Wayne believes in paying it forward, in addition to supporting March of Dimes Canada, he is also the Board President of Community Living Peterborough.

“I know that there are needs in the community, and somehow, we have to help,” says Wayne.

Want to be part of our Door-to-door campaign but are unable to physically go door-to-door? This is an easy fix! You can now sign up as an online canvasser – here’s the link: http://bit.ly/D2DOnline Help us support Canadians living with disabilities!

Turning Points: Shirley Dennis, David Huson & Paula Povey

Turning Points

Today in Canada there are over 300,000 stroke survivors. Stroke Recovery Canada is helping ease the recovery process and these survivors are surviving and thriving! Over the last few weeks we have been sharing some of these “Turning Points” – the moments when these stroke survivors realised there was hope post-stroke!

Here are the last three Turning Points:

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“My turning point was when I realized I was going to survive and with a little work and effort, I was still going to have a life.”

– Shirley Dennis


David Huson

 “My turning point was volunteering at a local peer support program; this allowed me the opportunity to apply some of my recovery tools,  and my new normal became dedicated to a life helping others in a similar situation as my own. ”

– David Huson, Guelph Wellington


Paula Povey

My Turning Point happened  three years post stroke, when I accepted the fact that this is MY NEW NORMAL and that I AM A SURVIVOR, NOT A VICTIM!!

– Paula Povey, New Hamburg


Thanks for reading and please make sure you check out the other entries too!

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.
#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

Assistive Devices Program (ADP)

Barbara is a 73-year-old Kingston, ON resident who lives with osteoarthritis. Her condition results in poor balance and makes walking difficult. For over eighteen years, Barbara has been using a walker to help keep her mobile. Over time, the walker began to break down. However, she needed this equipment, so Barbara continued to use it, even without brakes. The condition of her walker was so poor that she could not even venture into the hall of her apartment building safely. Barbara said that “my old walker made me feel nervous when I was moving around.” Barbara’s occupational therapist began to worry about her safety and urged her to buy a new walker, but her limited income made this a difficult task. Barbara, in need of help, turned to March of Dimes’ Assistive Devices Program.

The Assistive Devices Program (ADP) provides financial assistance to people with disabilities across the province, assisting with the cost and maintenance of basic mobility devices as well as home and bath safety equipment. ADP is one of March of Dimes’ charitable programs supported 100% by donor dollars. Many of the people served live on an income of less than $15,000 per year, meaning that many assistive devices are financially out of reach. At ADP, the program is able to stretch every dollar to its fullest potential enabling staff to provide necessary, life-changing devices to people across the province that so desperately need them – and cannot afford the equipment on their own.

United Way donates a portion of its funds to the ADP program in Kingston and focuses on promoting Healthy People, Strong Communities. Without United Way, March of Dimes would be unable to continue helping people like Barbara. Without this partnership, the expense of a new walker, which exceeded $500, would have prevented Barbara from the peace of mind she now enjoys.

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Barbara is happy to have her new, safe walker. Although she uses it primarily for indoor use, Barbara prefers using her walker over her wheelchair so that she can maintain and build strength in her legs. Without the funding she received from March of Dimes, Barbara said she “would have had to keep her old walker and she would have had to use her wheelchair more often.”  The new walker is large and comfortable enough to allow Barbara to sit on it when she needs to, which allows her to use it over her wheelchair. Barbara is very thankful for the help she received from March of Dimes.