Imagine for a moment that you could take days off for medical appointments – or because of a short relapse – without worrying about losing your job. That your loved ones could act as caregivers without worrying about what it means for their income. That you had access to government funded physiotherapy programs with trained MS specialists that could drastically improve your ability to walk. And that going out for dinner wasn’t limited to the few restaurants with fully accessible washrooms.
You shouldn’t have to imagine what life would be like with access to these things – we believe that they should be the norm. Canada has the highest rate of multiple sclerosis in the world. And when it comes to accessibility, we’ll stop at nothing to ensure that people living with MS and other chronic or episodic illnesses and disabilities are properly represented and included in the discussion.
We are currently asking the provincial government of Ontario to take action to improve quality of life for those affected by MS in these areas:
- Better job and income support for people with disabilities
- Expanded support for independent living
- Increased services and support for caregivers
- Action to ensure Ontario is fully accessible for people with disabilities
Here’s where you come in! The more voices we have, the more hope we have of being heard and seeing our government take action. Send a message to your MPP and let them know how critical these steps are for building better lives for people affected by MS in Ontario.
“I’m currently self-employed as an event planner. Prior to that I worked in the recruitment industry. I held several positions within my time there, and then I went on mat leave. As I was preparing to return to work, my employer let me know that my role had been disseminated and shared among four different people. I assumed he would have a new job description ready for me. Instead he informed me that there just wasn’t a place for me anymore.
He added, ‘Are you sure you could even do this with your MS?’
I think I was a little naïve back then, but knowing what I know now – it was quite discriminatory.
Today my situation is such that I have good days and bad days. On the bad days, I rely heavily on my husband and mom for support. My husband works and is the main bread winner in our family, and if he has to take time off work to bring me to appointments, it can negatively affect his relationship with his employer.
It’s frustrating because I’m that employee who will work my hardest for a company. I win awards and give it my all, but I can’t guarantee I’ll be in the office every day at the same time or that I won’t need time off for my doctor’s appointments.
Having income support programs in place that allow us to maintain our jobs with some flexibility based on our situation would change everything. If I have to leave early for a neurologist appointment, I don’t want to have to worry about my job being on the line.
Our futures are unknown. But we do know that MS is not shortening our lives, it’s altering them. Better income and employment supports would mean just that, that life would be a little easier for Canadians affected by MS.”
– Gaby Mammone, diagnosed in August 2004
“Three of my siblings have MS: my two half-sisters and my younger brother who was just diagnosed in February. My mom’s cousin also has MS, so you could say it runs in my family.
I’ve witnessed my sister’s husband and the dedication required to look after somebody with MS. I’ve seen the toll that being a caregiver can take on the family. Because MS is episodic in nature, sometimes he needs to be with my sister full time – and that can range from a couple of days to longer. There are no provincial or federal programs in place that protect and support caregivers for episodic diseases. There is federal support for gravely ill patients who are near the end of their lives, but that’s not what MS is. Caregivers for people with MS need to have the federal and provincial support to know they aren’t going to lose their jobs if they have to care for a loved one.
Nova Scotia offers a $400 tax credit for caregivers, which they introduced in 2009. Since then, it has saved Nova Scotia more than $44 million in healthcare costs and it makes people living with MS 56 per cent less likely to use long-term care as a solution. The point is, you don’t have to do a lot from a caregiver perspective to make us feel supported, and Nova Scotia is a perfect example of that. Whether it’s through a tax credit or employment support, there needs to be something.”
– Justin Cochrane, family member and loved one to several people affected by MS
“I went to a rehabilitation clinic in Poland geared at people living with MS a few years ago. It was set up as a four-week session in an old converted army hospital where they take in 50 guests at a time. They feed you and house you. The rooms are set up dorm style, double occupancy per room based on your level of ability. They assess you and then your day is broken up into 30 minute intervals with some spare time between sessions. I’d start with breakfast, then have hand therapy, then morning exercises, physiotherapy, kinesiology, magnetic therapy, cryogenic chamber and then swimming. I noticed huge improvements.
They do your EDSS (Expanded Disability Status Scale) score – which in my case improved by nearly a full mark. They evaluate you based on strength, balance, etc.
I attend group exercises here, but the exercises are geared at the overall ability level of the group – which is only fair – but it means that if the class is geared at people in a chair, then people who aren’t in a chair don’t really benefit as much.
When I first went to Poland, I could barely walk, but at the end of the four weeks, I could make it easily up to 100 feet. Once I got back home though, there was no eligibility for me to pursue that. Here, unless I’m on ODSP or over the age of 65, there’s no way the government will cover my physio. And once you stop doing it, all those gains just diminish. People with chronic conditions should be eligible to remain viable by having physiotherapy from qualified MS trained therapists and not have to wait until they are deteriorated beyond recovery to receive the attention they deserve.”
– Diana, diagnosed with relapsing-remitting MS in 1994 and now lives with secondary-progressive MS