Soania Mathur

Soania Mathur Parkinson’s Disease Patient and Physician “For me it began at 27 years of age, a slight tremor in my right pinky finger, just as I was completing my residency in family practice and starting my career as a physician. At first I was more medically intrigued with experiencing a symptom that I had heard so many patients describe.

But then my concern grew as the tremor went from sporadic to continuous and that’s when I began to experience medicine from the patient’s perspective. The frustration at the lack of control I had over my own body, the desperation I felt when told of the diagnosis of Young Onset Parkinson’s Disease and the fear of the future. And through it all, relentlessly, the tremor progressed.

The effects transcended into my work, my social and family life. It made itself known from the moment I awoke until I fell asleep at night. All during a period of time that I felt I should have been in the prime of my life. A decade into my journey I began to realize that although I had no control over my diagnosis, I did have control over how I faced this challenge. This acceptance allowed me to [...] continue the story

Christine Jonas-Simpson

Christine Jonas-Simpson I watched the tears drop from my nurses’ eyes as they gently took my blood and when they hugged me goodbye at the end of their shifts. My sweet curly red-haired son died and was born still after his cord knotted when I was 37 and a half weeks pregnant – he was nearly 6 pounds. My nurses and family remained by my side, the specialist who induced me followed up on his day off and my family doctors cried with me at home.

I was deeply moved and comforted by my caregivers’ expressions of grief. While I was living my worst nightmare I could not help but wonder what it was like for my healthcare colleagues to grieve and bear witness to our devastating loss. As a nurse I experienced grief of my own patients as well as identified with their families’ losses – these moments transformed me.

When my son died in 2001, I could not find research on nurses’ experiences of grieving when a baby dies and how this changed them. Healthcare professional grief was and continues to be hidden and not often discussed. Given I was a nurse and a researcher, I decided to invite my colleagues [...] continue the story

Sylvia Langlois

Sylvia Langlois M.Sc. OT Reg. (ON) Sylvia is the Faculty Lead – Curriculum for the Centre for Interprofessional Education and an Assistant Professor in the Department of Occupational Science and Occupational Therapy, Faculty of Medicine at the University of Toronto.

In her role at the Centre for Interprofessional Education, she has been involved in developing, implementing and evaluating a longitudinal, competency-based curriculum for over 3700 students in eleven health profession programs. This curriculum is designed to prepare students for interprofessional collaboration, a patient/client-centred model of service delivery where multiple healthcare providers from different professional backgrounds work together to provide high quality care. She has been instrumental in creating a number of innovative programs to encourage the development of collaborative competencies in students.

One of the Interprofessional Education programs, the Health Mentor Program, adapted from a similar program at Thomas Jefferson University, has made a significant impact on health care students. Here students from various professional programs are grouped with an individual from the community living with a chronic health challenge. Through a set of interviews, students learn first hand about the impact of these health challenges and experiences in the health care system. As well, they develop an understanding of issues related to [...] continue the story

Wendy Preskow

Wendy Preskow, NIED Founder, President & Chief Advocate As a parent, whose 27 year old daughter has struggled with Anorexia and Bulimia for over 12 years, Wendy is the passionate voice and driving force behind the National Initiative for Eating Disorders (NIED). Having lived with a sufferer and experienced the devastating effect Eating Disorders have on families and extended family and friends, Wendy reached the point of no return in late 2011. She could no longer sit back knowing her daughter was falling through the cracks of health care system that had failed her family and so many others in the same predicament.

Together with a core team of passionate advocates Wendy formed NIED in February 2012 to drive Eating Disorders awareness, understanding and action.

The National Initiative for Eating Disorders (NIED) is a not-for-profit coalition of dedicated health care professionals, counsellors and parents with children suffering from Eating Disorders.  Since we formed NIED in February 2012, we have become a respected and powerful voice, promoting Eating Disorders education and awareness to create positive change for a seriously underfunded, under-represented and misunderstood brain disease.

Did you know Eating Disorders have the highest mortality rate of ANY mental disease?

We collaborate with community groups, doctors, nutritionists, [...] continue the story

Chloe Vance

Chloe Vance Chloe’s diagnosis with Type 1 diabetes 13 years ago ignited a passion for adventure. In threatening to take away her freedom, diabetes inspired her to do more, see more and be more. She’s guided expeditions by canoe to the Arctic Ocean, traversed the North by dog sled, circumnavigated New Zealand by bicycle, run half marathons, completed adventure races, ski toured 400km north of the Arctic Circle in northern Norway and backpacked around the world.

In the video  below, Chloe Vance, founder and executive director of Connected in Motion, shares a turning point in her life, when she went from unengaged to engaged patient, to patient activist and realized the power of community.

Follow the exploits of Chloe and the Connected In Motion team online http://www.connectedinmotion.ca/ , on Facebook and Twitter @ConnectInMotion

See the stories of each of the XX in Health Week healthcare transformers:

Michelle Sorenson

Michelle Sorenson Michelle Sorensen has been living with Type 1 diabetes since 1998, when she was 24 years old.  She was in the middle of graduate school, training to become a psychologist. She is now a member of the Ontario College of Psychologists and has a private practice in Clinical Psychology in Ottawa, Canada. Using a cognitive behavioural approach to therapy, Michelle helps patients with a wide range of issues.  Michelle has developed a speciality in counselling patients with diabetes. She combines her knowledge about changing thoughts, feelings and behaviours with the understanding that comes from personally living with Type 1 diabetes herself for over 13 years to help patients change their thoughts and modify their behavior.

Michelle believes adaptation to living with this chronic disease would be more manageable if more psychological support was available to people with diabetes.  She hopes to help fill this gap in diabetes care by helping diabetes health professionals become more aware of the ways in which they can support and educate their patients about issues like grief, accessing supports and changing the negative thoughts and behaviours that plague many people living with this challenging condition.  She speaks about various topics related to diabetes management, including counseling approaches like cognitive behavioral therapy [...] continue the story

Kathy Kastner

Kathy Kastner Much like an actor, I am driven by language and interpretation.  However, I do not aspire to be in theatre, on tv or film. Instead, my passion and commitment to language is focussed entirely in the world of health.

As a non-healthcare professional, I am regularly aghast at the assumption – nay, expectation  – that we who are untrained and illl-equipped to understand medical jargon are supposed to know, interpret and act on the language of those trained in the field of healthcare.

I use every medium I can to ‘out’ my outrage, and to educate.

With The Health Television System Inc, I pioneered a hospital-based television network dedicated to reassuring patients and their families that they aren’t stupid just because they interpret ‘stool’ as a 3-legged seat; that ‘treat’ has nothing to do with dogs or children.  Patients are encouraged to ask questions. But there’s another assumption: patients know what questions to ask. I develop lists of questions.

My mission has been electrified by the digital world: I blog on two websites Ability4Life.com – for adult children caring for aging parents; BestEndings.com  about end of life choices, and all those scary and in comprehensible words: co-morbidiities, wound-care, vent, traech.

I ‘YouTube’ about confusing [...] continue the story

Saraƒin

Saraƒin Saraƒin is a Toronto area cartoonist, writer, illustrator, developing psychic channel, and former activist. www.asylumsquad.ca began as a self-appointed therapy during a year long psychiatric stay because of what was thought of as a conventional form of psychosis but was eventually understood to be psychospiritual problems. Her first novel, “Asylum Squad Side Story: The Psychosis Diaries” collects the earlier strips, which were first uploaded to an online blog during Saraƒin’s hospital passes.  (The blog and comics from that period have since been retired from the web, but the completed plot are still available for viewing, and you can now explore Saraƒin’s new written works at waywardnun.blogspot.com)

Saraƒin has lived with spiritual emergency, a less common but not unheard of set of psychospiritual complications that can arise from shifting transformative states. She has been mentioned in the Globe and Mail, the Torontoist, has been published in the U of T’s Ars Medica, Bitch magazine online, and has spoken at the University of Toronto’s Faculty of Medicine during the 2012 Comics and Medicine conference, among other sources and events. Having resolved complex mental states that mirrored psychosis, she now hopes to one day educate the public on transformative psychology, and to help people [...] continue the story

A Partner In Crohn’s

Posted: 22 Jun 2013 11:37 AM PDT

I talk to many people throughout my life that suffer with an IBD, either through Twitter (@MrAwesomeBen), my blog or my local Crohn’s and Colitis UK (Leicestershire & Rutland) charity. These people have become a cruck for me to rely on. They know, pretty much, what I am going through. These people, some of whom are complete strangers, people who I would not recognise if I passed them in the street, are there for me and vice-versa.

I bang on about not suffering alone, especially in this modern era of the internet where a new friendship with someone is only a click away.  You can hide any embarrassment or anxiety behind the computer screen.

I class myself to be extremely lucky in this world. I found love. I found a woman to share my world with, who accepts me for what and who I am.

Granted neither of us knew at the beginning the trouble I would put us through with my diagnosis but I doubt that would have changed a thing. I struggle to remember a time where she wasn’t a part of my life.

Now I don’t want this blog to sound like one massive brag. [...] continue the story

Letter From the Editor of Recovery Wire Magazine

I entered into recovery as a teenager. I recall the nurses giving me an evening pass from the detox centre to go see the Lion King on my 19th birthday. From there I moved into a halfway house with other female addicts. I did my best to fit in. I was a very “low bottom” so they told me. I had a really hard time that first year. I had no idea how to connect to people, especially other women. I kept to myself mostly. I couldn’t carry on conversations all that well, and my outside appearance matched my insides perfectly. My entire wardrobe, make-up collection and hair accessories consisted of nothing but black, and I powdered my skin an even lighter shade of white to accentuate my expiry date. Those were indeed different times.

One morning, as part of my rehabilitation, I had to get on a bus at 7:00 am and head to a 12-step meeting in another part of the city. I remember it was a cold morning. I had about six months clean, and there was a frost on the ground. As I waited for the bus I became more and more intolerant, but a new voice was beginning to immerge. The voice of reason and sanity, a quiet voice at the time, but she [...] continue the story