"Nick Jaroka" - Nick shares his #PathToRecovery story!

Nick’s Path To Recovery

Written by Nick Jaroka

I remember spending time in the rehabilitation unit at Grand River Hospital (Freeport) and evenings quiet, visitors had gone home for the day and this was a time for reflection. One reflection was “now what, what’s next” for the future.

My first exposure to March of Dimes Canada was while going through inpatient rehabilitation; there I met a Linking Survivors with Survivors (LSWS) hospital peer mentor. He had a stroke and was open to talk to me about anything. I remember not being able to speak and frustrated that the words didn’t come out but he was also a stroke survivor and immediately understood, was patient and gave me encouragement to move forward. This LSWS volunteer visited me weekly and each time we met I asked him more questions and felt the hope to keep moving forward.

5d5585f199e519b95e20f1db7da02ca9

Once I transitioned back home and continued with outpatient rehabilitation, I was looking to fill some of the spare time between therapy sessions. I got into contact with the LSWS community coordinator and we met. She (was awesome, fantastic… ha ha ) was able to explain the program and we decided that volunteering as a LSWS peer mentor was a great idea.

grand-river-hospital

I volunteered 2 days a week going back to Grand River Hospital (Freeport) and visited stroke patients. This has been a great experience, every time I visited I learned something new about myself and before I knew it I was finding I could do things I wasn’t able to do before.

These opportunities enable me to continue my rehabilitation but in a ‘give back to community’ aspect – Nick Jakora

While volunteering with LSWS, I also attended the YMCA Fitness for Function program. I approached them to see if it would be possible to volunteer in their programs to encourage survivors to continue their rehabilitation. These opportunities enable me to continue my rehabilitation but in a “give back to community” aspect; some days were tiring, but it was a good tired.

Throughout this stroke recovery path, I had this thought if it would be possible to return to work. This would be a huge financial support for my family if I could even work part time. I again approached the LSWS coordinator and she was able to provide linkages including that March of Dimes Canada has an employment program specific to persons with disabilities.

Nick Jaroka
From L-R: Lisa Livingston (Employment Services Team Leader​) Nick Jaroka (Stroke Survivor), Jennifer Estabrooks (Vocational Rehabilitation Specialist​) and Barbara Moore (Community Coordinator LSWS)​

I used March of Dimes Canada assistance to navigate the systems to get the appropriate referrals and the correct paperwork. I met with a career counsellor to find out exactly what my interests are and possible employment opportunities.

Currently, I’m attending a job search workshop where I continue to learn new things about myself, and how to manage those fears of knowing I had a stroke, what if I don’t understand while on the job, what if I can’t recall, and words or my speech get jumbled? Is this goal even possible? I know that I am not alone and will continue to work on my recovery. My next step will be securing part time employment in a field of new interest and can’t wait for the next step in my path to recovery.

For more resources on Stroke Recovery, please visit our landing page for Stroke Recovery Canada®, which is a national service offering support, education and community programs for stroke survivors, caregivers and their families: http://bit.ly/ModcSRC

March of Dimes Canada, Nektarios, New Community Blog Post / "If March of Dimes Canada didn't provide Conductive Education, I don't believe I would be where I am today!"

Let’s Talk About: Nektarios!

March of Dimes Canada, Nektarios, New Community Blog Post / "If March of Dimes Canada didn't provide Conductive Education, I don't believe I would be where I am today!"

Nektarios is a proud and successful 27-year-old young man with a bright future ahead of him. But it wasn’t always that way. His family knew that he was not meeting his important developmental milestones as he struggled to sit independently as a baby. As he grew older, he was increasingly dependent on his family and friends to help him in the activities of daily living.

Now, as a proud young adult, the last thing Nektarios wants is to rely solely on others for his care and comfort. He wants — and needs — to learn how to be as independent as possible. His mother found the March of Dimes Canada’s Conductive Education® (CE) Program after hearing about it through word of mouth from friends and acquaintances. Nektarios began attending CE sessions in 2004, at the age of 15.

At the beginning, walking was difficult for Nektarios. But he set big goals for himself in CE class. He wanted to gain the strength he needed to go out with friends, enjoy the outdoors, play his favorite video games and enjoy being an active member of his community.

 

cp-lying-program
Nektarios during one of his Conductive Education classes with CE conductor Rachel

His own determination, the skills and dedication of the March of Dimes Canada staff, and your donations have all made such a difference for Nektarios in so many ways. He was able to live independently while at college, and tackle all of the challenges of daily living with minimal assistance. Walking with one cane — a task that was all but impossible for him just a few short years ago — is now something he can do with confidence and ease.

“If March of Dimes Canada didn’t provide Conductive Education® I don’t believe I would be where I am today,” Nektarios tells us.

Increased mobility has given Nektarios the freedom he always wanted!

The evolution of this young man has been extraordinary. He enjoys life and is passionate about spreading the word about March of Dimes Canada and the life-changing programs that are available here. Every aspect of his life has changed for the better.

events_ab_aron-ralston_group_june-15-2016-49
Nektarios (center) with his mother, Angela, and Aron Ralston at the Ability and Beyond Dinner in 2016

Conductive Education® is one of the programs that is also partly funded through money raised from our Door-To-Door campaign. Though physical Door-To-Door is coming to an end, you can still help support CE from the comfort of your own home! Sign up as an online canvasser and share your personal page with contacts and help support Canadians with disabilities: http://www.marchofdimes.ca/doortodoor/

 

Photo of powered wheelchair with tilting seat, `March of dimes Canada', Megan, "New Community Blog Post!"

Let’s Talk About: Megan!

Photo of powered wheelchair with tilting seat, `March of dimes Canada', Megan, "New Community Blog Post!"

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.

life_toronto_tiltedwheelchairs
Sraddha, Ryan, Jessica and Evan demonstrating tilting wheelchairs

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

 

Eva M. received much needed support from MODC's Assistive Devices Program!

Let’s Talk About: Eva M.!

Eva M. received much needed support from MODC's Assistive Devices Program!

Eva is a 61 year old female living in a retrofitted apartment in Barrie, Ontario. She has multiple sclerosis, which limits her mobility to using a power wheelchair to get around and make herself comfortable. Her previous chair was 4 years old and broken beyond repair.

Eva’s occupational therapist (OT) helped her apply to the Ministry of Health’s Assistive Devices Program, which approved 75% funding for a new power wheelchair that cost $5,427.60. This left Eva with 25% to cover. Her finances were very limited, so she knew she wouldn’t be able to afford this necessary piece of equipment. Her occupational therapist helped her apply to the Independent Living Services of Simcoe County & Area, the MS Society, and March of Dimes Canada’s Assistive Devices Program.

The Assistive Devices Program (ADP) http://bit.ly/ModcADP helps people with disabilities across the province to pay for the cost and maintenance of basic mobility devices, as well as home and bath safety equipment. ADP is one of March of Dimes Canada’s charitable programs that is supported entirely by donor dollars (including via the Door to Door campaign). Many of the people who benefit from ADP live on an income of less than $15,000.00 per year, meaning that assistive devices are often financially out of reach. At ADP, every dollar is stretched to its fullest potential so staff can provide necessary, life-changing devices to Ontarians who desperately need – but can’t afford – them.

cpn

Eva’s November 2015 application was denied, so she continued her fundraising efforts. In January 2016 –with some funding through the MS Society behind her – March of Dimes Canada’s Assistive Devices Program was able to help out. The result: a fully funded new power wheelchair.

The power wheelchair has been ordered and Eva is very excited because her current wheelchair is unsafe – pieces are falling off and the foot component is dragging. She says that, if she has to take it out, she has difficulty negotiating ramps and is very nervous. Eva knows the new wheelchair will make her feel more secure and confident.

“This wheelchair will keep me independent and out of long-term care and just having it lifts my spirits.”

Eva is very grateful to March of Dimes Canada’s Assistive Devices Program for the support, and March of Dimes Canada is equally grateful to the donors who make it possible for us to help people in the Barrie area. Eva now has peace of mind and a safe way to get around in her apartment and her community.

ADP as mentioned, is also partly funded by our Door-to-Door Program, which runs from November to late March. If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header! You can also become an online canvasser at www.mymod.ca/doortodoor

Madison. ".. it wasn't long before she was able to start standing on her own." - New Community Blog Post!

Let’s Talk About: Madison!

Madison. ".. it wasn't long before she was able to start standing on her own." - New Community Blog Post!

Last summer, we met little Madison. In just one short year, she has opened the doors to a world of independence with hard work, and your commitment to help!

Madison’s family found March of Dimes Canada’s Conductive Education® (CE) Program after discovering that Madison wasn’t meeting her developmental milestones as a baby. Her parents worried that she would be facing a lifetime of frustration and challenges. But, because CE is one of the only programs available to very young children in Canada, it was a perfect opportunity for her to start facing those challenges with a supportive team right beside her.

img_7717-02

In her first CE session, she learned to sit independently! It wasn’t long before she was able to start standing on her own, and learning to walk with her walker.

Now, a full year later, Madison is a girl on the move! She’s a bright and confident child who loves learning how to jump and how to use her quad canes. She is working on stamina, core strength and balance, controlled breathing and purposeful movements of her body. She is able to figure out for herself how to change positions and stand independently. Most importantly, she has found her voice – she advocates for herself, she makes sure she is heard!

Check out this video explaining our Conductive Education Program, which also features Madison!

She swims! She plays with her friends! She rides her horse! She can conquer ANYTHING that life puts in front of her. Today, she takes charge of her world like the little fighter she is! Way to go Madison!

CE® is also one of our donor funded programs, partly funded by our Door-to-Door Program, which runs from November to late March. If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

 

"Maida de Stein has been canvassing for MODC for over 2 decades!"

Let’s Talk About: Maida De Stein!

"Maida de Stein has been canvassing for MODC for over 2 decades!"

Written by Tina Siegel

Maida de Stein has been canvassing for March of Dimes Canada for over 2 decades, just like her mother used to do, and she has it down to a science.

Every year, Maida gets out her lists of phone numbers and addresses, and calls ahead to ask for pledges. She keeps careful records, then only goes to the homes of people who have agreed to donate. It’s quick and efficient.

That’s one secret to Maida’s success: organization.

‘But it’s a chance to catch up sometimes, too,’ she adds. ‘I know everyone on my route. I have a personal relationship with them.’

Maida goes beyond her route, as well. She approaches relatives, friends, members of her book club and tai chi class – anyone who might be willing to donate, or who has donated in the past. This often takes her well beyond her assigned canvass.

That’s another secret: personal relationships.

Maida also gives as much as she gets. She’ll often propose an exchange – you donate this much to my charity, and I’ll donate the same amount to yours. Everyone wins.

And that’s the last secret to Maida’s success: mutual benefit.

The result: Maida is one of MODC’s most successful canvassers, raising about $1,500 every year for a total of nearly $12,000 since 2002. She’s the first to acknowledge that it’s hard work, but also that it’s worth it.

ce_consumers_zachary_2016

Every dollar Maida collects goes straight towards supporting kids like Zachary (see photo), who are benefitting from MODC’s innovative Conductive Education® (CE) program. CE is designed to help people with neurological motor disorders like cerebral palsy or Parkinson’s to gain mobility and more independence. http://bit.ly/ModcCEP

‘It’s a tough job,’ she says, ‘but very rewarding.’

If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

Andrea Luciani - picture of her smiling - "..I like to use the word ABLE when it comes to my progress."

Let’s Hear From: Andrea Luciani!

Andrea Luciani - picture of her smiling - "..I like to use the word ABLE when it comes to my progress."
Written by Andrea Luciani

I was born with cerebral palsy and I assumed from a young age that my parents would always do everything for me. I never thought that someday I would grow up and live an independent life, despite my disability.

But, thanks to March of Dimes’ Conductive Education® (CE) Program (http://bit.ly/ModcCEP), I have been able to turn my disabilities into abilities! I’ve been a part of the CE® Program since I was 6 years old. I am now 23 years old and the climb  hasn’t been easy. Cerebral palsy has affected all aspects of my life, including my mobility, coordination, posture, and my ability to do daily living activities independently.

Today, I like to use the word ABLE when it comes to my progress. I am able to sit down and get up independently. I am able to walk using single point canes. I am able to get from room to room on my own in my house. Every day, I focus on what I am able to do!
The CE® Program has been instrumental in my life.

Andrea Luciani screenshot

March of Dimes Canada’s CE® Program is designed specifically for people with neurological motor disorders and offers an alternative group setting approach to rehabilitation. CE® didn’t just give me tools to help my mobility; it also provided me with a voice. Instead of my parents or others speaking on my behalf, I learned to advocate for my own needs. I may need special accommodations to aid in that process but I make sure I am heard!

Thank you! Because of your generosity, and my wonderful teachers at CE®, I have grit! I have learned to never give up, keep trying, keep learning new ways to do something, and always strive to conquer! If wonderful programs like CE® did not exist due to lack of funding, many of my accomplishments would not have been possible. You have literally changed my life! I hope that CE® can continue to have a profound and lasting effect on every participant’s life.

Thank you for taking the time to read my letter.

CE® is also one of our donor funded programs, partly funded by our Door-to-Door Program, which runs from November to late March. If you’re interested in volunteering as a canvasser for this year or the following, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

Let’s Talk About: Larry Grovum!

door-to-door-1200x630_larry-grovum_v02

Larry Grovum has been a Door-to-Door canvasser and Area Captain for five years now. In that time, he’s raised a remarkable $5,512.05 on his own. As Area Captain, Larry is also the driving force behind his entire zone – not only does he support his fellow canvassers, he also takes over many of the un-canvassed routes in his area.

As if that weren’t enough, Larry doesn’t wait for the weather to cooperate before he starts.

When you get out in bad weather, Larry explains in an email interview, ‘people read this as commitment and give more.’ But, he adds, you can’t take rejection personally. ‘Some will give, and some won’t. Thank people for their time and move on.’

Larry Govrum
Larry Grovum

Asked why he started canvassing in the first place, Larry replies: ‘I wanted to give a helping hand to people living with disabilities. I continue, because the need continues.’

In his half-decade of canvassing, Larry has enjoyed some memorable moments. One gentleman had been approached by four or five canvassers for other organizations that same day, but still gave Larry $20. Another refused to answer when Larry knocked on the door of his very expensive home. ‘But,’ as Larry observes, ‘it takes all kinds to make a world.’

The people who impress him most, he says, are the university students. ‘They’re generally poor, but they scurry around, searching for change, then apologize for not being able to give more.’

If you’re interested in volunteering as a canvasser, please email us at info@marchofdimes.ca with “Door-2-Door Volunteer” in the subject header!

 

Hear it from Rhys: Niagara Specialized Transit

Rhys’ take on Niagara’s Specialized Transit!

Here’s a fantastic example of an outcome influenced by public opinion and concern. It goes to show that you should always try and let your voice be heard!

Niagara Specialized Transit Users Win Reprieve of Proposed Fare Increases

Written by Rhys Evans.

Hello my name is Rhys Evans I am currently a 24 year old Niagara College student currently enrolled in the Social Service Worker program.  I am also a graduate of Niagara College’s Recreation and Leisure as well as Recreational Therapy programs. I value staying involved in my community by doing things like representing the town of Pelham on the Joint Accessibility Advisory Committee and participating in wheelchair basketball.

Rhys Evans

The Region of Niagara recently awarded BTS, a company from Vaughn, the Niagara Specialized Transit contract for transporting people with disabilities to medical appointments, school or employment.  Part of the agreement was a proposed fare increase for riders, many of who are on fixed or reduced incomes. In some instances the increases would have been as great as 300%. I got a letter in the mail along with other users to inform us of these changes.

I was unhappy with the lack of any consultation, or any transparency in how this had been done.  l was also angered by the proposed increases that would further limit people’s independence.  I firstly contacted the Mayor of Pelham, Mr. Dave Augustyn with my concerns. I also used social media, letters to the local paper and spoke to the Joint Accessibility Advisory Committee (that I am a member of), in order to urge the council to reconsider the proposed increases.

Regional Council of Niagara discussed the concerns voiced by users like myself that were presented at their June 28th meeting, and made the decision to suspend the increases, and revisit the issue in 2017.

This date was chosen because the Accessibility for Ontarians with Disabilities Act ( AODA ) will have enacted the Transportation Standard that will provide a clearer framework about what fare charges should be.  The expectation is that fares will become more affordable for Ontarians with Disabilities.

Side view of Niagara Specialized Transit bus

Whatever the outcome, it is hoped that there is full consultation with the user group before any final decision is made, because no such consultation occurred this time, and if things had remained unchallenged many users may not have been able to continue with this vital service.

In the meantime those using the system are grateful to Regional Council that they can still attend medical appointments, therapies, and school or work at a reasonable cost. As a user and member of the Joint Accessibility Advisory Committee, I shall continue to monitor the progress on this issue and make the public aware of any future developments.

 

A Stair Lift for Mrs. Gill!

Mrs. Gill resides in Brampton with her family in a 2 story home. In 2014 she was diagnosed with pulmonary fibrosis. This condition left her with limited mobility and dependent on oxygen. At the time of her application a family member had taken a leave from work to offer necessary care to her. For the most part, Mrs. Gill remained confined to the upper floor of her home. The stairs to the main level of the house were dangerous and a 2 person lift to bring her up and down the stairs was necessary, which there was a significant safety issue. Mrs. Gill was not able to safely exit her or engage with her family in simple activities such as having dinner in the dining room.

Mrs. Gill next to her new Stair lift!

With funding approved through March of Dimes Canada’s Home and Vehicle Modification Program a stair lift was installed. This equipment offers a safe method of transition between the levels of the home and Mrs. Gill is now able to access the essential areas and is able to interact with her family on a regular basis.

Here is a a wonderful letter we received from her son:

Good afternoon,

I have attached pictures of the stair lift used by my mother. Now she can access the ground floor using the stair lift to have lunch in the kitchen and to go for a doctor’s appointment. I can see her happy face when she used it for the first time. It’s been a long time since she’s been to the kitchen – she didn’t even recognize the kitchen area! This was mainly due to these parts of the house being inaccessible.

I appreciate March of Dimes Canada for providing this equipment. My mother said, “Thank you.” I’m sure she will enjoy the benefits for the rest of her life. Here are a few examples of these benefits:

  • She is now able to visit the doctor’s for appointments, as well as a clinic, hospital or temple.
  • She can now visit the kitchen on the ground floor to have lunch or dinner with her family.
  • She can now also visit the living room on the ground floor.
  • She can also exit the house in an emergency.

It has definitely improved her quality of life and has brought her cheer by improving her physical ability.

Regards,

Gurinder Gill.

For more information on our Home and Vehicle Modification Program, please visit: http://bit.ly/MODCHVMP