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#048: Living with progressive MS in Canada. Interview with patient advocate Ardra Shephard

Ardra Shephard has been writing about her life with multiple sclerosis on TrippingOnAir.com for many years, trying to break down the stigmas that people with the disease face. We talk about her life with progressive MS, how important it is to stand up for yourself and the support available in Canada.

She is a particularly fashion-conscious woman who hosts AMI-tv’s Fashion dis and the video podcast Tripping on Air, which she co-hosts with Alex Hajjar, whose wife has MS.

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Table of Contents

Introduction - who is Ardra Shephard?

My name is Ardra Shephard, I live in Toronto, Canada, with my husband and dog Tilly. I’m a writer, podcaster and television host.

Personal Experiences and Coping Strategies

Can you briefly share your personal journey with MS and how it has impacted your life?

I was diagnosed in my early twenties so I’ve been dealing with MS for my whole adult life. I’m not one of those people who can claim that ‘I have MS but MS doesn’t have me’. MS has impacted everything from my career choices to where I live. That said, I have a pretty exciting career and I love where I live. MS is incredibly difficult and when I was diagnosed I thought all of my best days were behind me, but that wasn’t true. Not even close.

In your experience, what are some of the most effective coping strategies or self-care practices for managing the daily challenges of living with MS?

I am a big believer in grieving the losses that MS can bring. Powering through and pretending that everything is okay doesn’t work for me. But I can’t live in that headspace for too long. I am the most chill when I get to the acceptance phase of whatever it isn’t I’m going through–the point where I can stop fighting and adapt. We aren’t always encouraged to do this. People think if you’re not fighting you’ve given up, but the only thing to fight is my own body and that doesn’t feel good to me. It takes courage and strength to adapt to change. 

How important is mental health and emotional well-being for individuals with MS, and what support is available in this regard?

Emotional well-being is critical to living well with MS. We have an episode on the podcast called The Worst Symptom of MS, and spoiler alert, in my opinion, the worst symptom is fear. MS does the most damage to my psyche when I’m worried about what comes next. The good news is that we can do things to mitigate fear and anxiety. Social capital is so important. I consider having a dog to be a medical necessity.

What kind of information and support can people find on your podcast and website Tripping on Air?

The website documents my story and it has always been important for me to address the stuff that isn’t easily talked about. I try to ensure that Tripping On Air has the kind of information that I needed and wasn’t finding in the earlier years of my diagnosis. The podcast is an extension of the blog, and I brought in a co-host, Alex Hajjar. Alex doesn’t have MS, his wife does. I wanted to share the perspective of someone who lives with MS in a different way, because MS affects the whole house, so to speak. Like the blog, the podcast dives into a lot of the social ramifications of MS, or chronic illness and disability in general. We talk about things like stigma, dating, travel, or finding a sense of purpose.

Treatment and Care in Canada?

What types of MS treatments, therapies, or interventions are more commonly recommended or accessible in Canada (e.g., certain types of DMTs, aHSCT, rehab)?

Canada has one of the highest rates of MS in the world. Some people refer to MS as Canada’s disease. HSCT is not available in Canada outside of research studies. We have excellent MS clinics here, but not all communities have access to them and some people with MS aren’t aware that these clinics exist or that they might have access to important resources and knowledge if they are seen by an MS specialist neurologist. Canada has a public health care system and there is some government funding of DMTs for people without private insurance, but this is a system that could use an overhaul so that doctors aren’t limited in what they can prescribe based on what insurance will pay for.

Are there any specific laws or regulations in Canada that protect the rights and promote the well-being of individuals living with disabilities?

The Charter of Rights and Freedoms and the Employment Equity act. The Council for Canadians with Disabilities is an advocacy group but I am not an expert on all the resources that are available to Canadians. We did an episode on the podcast where we talk to a lawyer about disability claims and that was very interesting, because even with laws in place, we often need to advocate for our rights.

Can you share any recent advancements or developments in MS treatment, care, or support in Canada that you find particularly promising?

MS is such a global field, I’m not sure what’s happening uniquely in Canada, though we do have leading researchers in the field. Canada has a disproportionately large MS population and so there is an urgent need for investing in MS research. Not specific to MS, but certainly Canadians with MS will benefit from the recently introduced Disability Benefits Act designed to support the financial security of people with disabilities, including those with episodic illnesses like MS. Canada also offers medical assistance in dying (MAID). I’ve blogged about this and it’s a difficult topic, but we can’t ignore that for some people the symptoms of MS become so severe that they become intolerable.

Challenges and Support Systems in Canada

Can you provide an overview of the healthcare system in Canada and how it supports individuals living with MS?

Canada has universal healthcare, so cost should not be a barrier to getting a diagnosis. Each province has a program to subsidize prescription medication costs for individuals not covered by private insurance. Many people first see their family doctors when symptoms present, and may then be referred to a neurologist or for diagnostics such as an MRI.

What types of healthcare professionals are typically involved in the care and management of MS in Canada, and what role do they play?

Neurologist, MS clinic, MS clinic nurse, any number of specialists to help manage specific symptoms (urologist, mental health care professionals, occupational therapist, physiotherapist etc). I am lucky to have a physiatrist. I see her once a year and she does a great job at helping me to manage symptoms.

Are there any specific resources or support networks available for MS patients in Canada, such as patient associations or community organizations?

MS Canada (formerly the MS Society of Canada) is a tremendous and comprehensive resource. It’s a great place to start.

Education, Awareness, and Advocacy

Which specific initiatives or programs exist in Canada that focus on raising awareness about MS and educating the public about the condition?

Again, MS Canada would be the primary source for raising awareness as well as providing resources for patients. The organization also funds important research.

How can individuals with MS in Canada actively advocate for themselves and ensure they receive appropriate care, support, and accommodations?

Be knowledgeable about MS so that you know what kinds of treatments and resources you qualify for. Reach out to MS Canada if you are interested in advocacy. Story-telling, sharing the realities of what it’s like to live with chronic illness and/or disability can create the kind of awareness that leads to things like improved accessibility, equitable treatment, reduced stigma.

What role do family members and caregivers play in supporting individuals with MS in Canada, and what resources are available to support them?

? I always say that when someone has MS the whole house has MS. Family and social networks provide critical support but our loved ones need support too. There are support groups for care-givers and I would also suggest checking out the Tripping On Air podcast, where I speak from the patient point of view and my co-host Alex brings his perspective as a partner of someone with MS. It’s helpful to know that whether you live with MS or you love someone who does, you are not alone.

What advice would you give to individuals with MS in Canada who may be feeling overwhelmed or discouraged? How can they maintain a positive outlook?

I would say that it’s normal to feel overwhelmed and discouraged from time to time. MS is hard! It’s important to grieve what you’re going through, but if the feelings become too persistent, it’s important to seek help. Talk to your doctor. It has also been important for me to connect with others with MS. Especially if you are newly diagnosed, finding someone who is roughly the same age and at a similar life stage can be tremendously helpful.

Quickfire Q&A Session

Complete the sentence: "For me, multiple sclerosis is...."

a full time job.

Which website can you recommend for people living with MS in Canada?

MS Canada, BARLO MS Centre for the 10k patients in Toronto, and of course trippingonair.com. Of course we are a global community and I would be remiss if I didn’t mention London-based Professor Giovannini’s MS Selfie newsletter which you can find on Substack.

What development would you like to see in the field of multiple sclerosis in the next 5 years?

Add-on therapies that halt progression, anything that can reverse damage, and MS prevention in general. These are all medical advances but I would also like to see improved accessibility, better financial support for people with episodic illnesses, and less stigma around disability in general. These social improvements are well within our reach and that makes them exciting opportunities in my opinion. 

Farewell

Finally, what message of hope or encouragement would you like to share with individuals living with MS in Canada?

It’s always been helpful for me to know that there are all kinds of people living with MS who, whether they have a few symptoms or a lot of symptoms, are figuring out how to live joyful fulfilling lives. Meanwhile, I take comfort knowing that the best minds in the field are working hard to improve MS outcomes.

How and where can interested people find you online?

You can find the Tripping On Air podcast on youtube or wherever you get your pods, or go to trippingonair.com.

Thank you, Ardra, for your continued commitment to people with visible disabilities in general and with progressive MS in particular, and good luck and continued energy for this mission.

See you soon and try to make the best out of your life,
Nele

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Nele Handwerker

Blogger & Patient Advocate

I show you how to make the best of your life with MS from family to career to hobbies. Thanks to science and research, a lot is possible nowadays.

Nele Handwerker

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