Because who is perfect?

Published on Dec 2, 2013

Disabled mannequins will be eliciting astonished looks from passers-by on Zurich’s Bahnhofstrasse today. Between the perfect mannequins, there will be figures with scoliosis or brittle bone disease modelling the latest fashions. One will have shortened limbs; the other a malformed spine. The campaign has been devised for the International Day of Persons with Disabilities by Pro Infirmis, an organisation for the disabled. Entitled “Because who is perfect? Get closer.”, it is designed to provoke reflection on the acceptance of people with disabilities. Director Alain Gsponer has captured the campaign as a short film. The figures are life-sized, three-dimensional representations of Miss Handicap 2010, Jasmin Rechsteiner, radio presenter and film critic Alex Oberholzer, track and field athlete Urs Kolly, blogger Nadja Schmid and actor Erwin Aljukic.

“We often go chasing after ideals instead of accepting life in all its diversity. Pro Infirmis strives especially for the acceptance of disability and the inclusion of people with disabilities,” says Mark Zumbühl, a member of the Pro Infirmis Executive Board, in describing the campaign.

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Bear: Gianni Blumer:

Music: Lost At Sea by Dave Thomas Junior

The Kindness of Shockwave Lithotripsy

By: Robert Wakulat

After a number of years of intermittent pain in the lower abdomen area, I finally asked my family doctor to probe for potential causes mid-2013. X-rays came back indicating I might have a kidney stone but further exploration would be required before confirming this was the case. After a subsequent ultrasound it was determined that I should see a kidney stone specialist to provide me with my options.

Turns out my stone was too big to pass but small enough to be a candidate for shock wave lithotripsy, which involves sound waves pummelling the stone for about 30-40 minutes. While some dietary changes appeared to end the earlier waves of pain, the specialist felt that I was at risk of having the stone get dislodged and cause serious damage to other parts of the kidney or urinary tract. The best way to avoid this was to undergo SWL.

Three months after this diagnosis, I spent a full day collecting my urine, which was to be brought to St. Mike’s Hospital in Toronto where the first of three SWL facilities in Ontario was established. Eight hours after my last urine collection, I was taking a final pre-op ex-ray to confirm the [...] continue the story

Central LHIN funds new model of care for people with complex medical needs

Published on Dec 10, 2013

At Central LHIN, we truly believe that leading through collaboration results in outcomes that surpass what any one or two organizations could ever accomplish on their own. An example of this is a new model of care that was developed for seven young people with complex medical needs in Central LHIN so that they can live in a home setting, rather than the hospital, and enjoy a new way of life. This was achieved by bringing together health care, housing, care coordination and support services to respond to a health care service gap identified by the Central LHIN.

But You Said I Wouldn’t Need Radiation


Summary: Participatory care for breast cancer patients requires doctors to do more than simply tell patients about their diagnoses. It’s about communicating effectively so that patients can comprehend complex medical information, make informed treatment decisions, and feel hopeful about the future. After being diagnosed with breast cancer, the average patient consults with as many as six different physicians about a care plan.[¹] The most effective practitioners use patient-centered communication to encourage patients to participate in their care and to reduce hopelessness.[²] Breast cancer survivor and communication skills trainer Stephanie Roberson Barnard tackles this important subject with a personal essay comparing post-mastectomy appointments with two different physicians. Both physicians interpreted the same results, but the first doctor’s communication style left Stephanie anxious and bereft, while the second doctor’s communication style helped her feel informed and hopeful.

Keywords: Breast cancer, patient-centered communication, doctor-patient communication, patient participation.

Citation: Barnard SR. But you said i wouldn’t need radiation. J Participat Med. 2014 Feb 28; 6:e4.

Published: February 28, 2014.

Competing Interests: The author has declared that no competing interests exist.

Disclaimer: The names of providers have been changed for this article. The Waiting Game When my husband, David, and I arrive at the General Surgeon Dr. Alberts’s office for our appointment, [...] continue the story

“No Scents Makes Sense” in the workplace

Published on Jan 4, 2014

Liz Rice tells her personal story about developing Multiple Chemical Sensitivities (MCS) in the workplace. She discusses the issue of scents / fragrant products / off-gassing in the workplace; the effect of scented products on people with Environmental Sensitivities and MCS and, the cost$ to the employer of not having OR enforcing a scent-free policy.

Follow the scent trail:

Chordoma, Diet, Optimism and Star Trek

Star Trek’s premiere in 1966 coincided with my high school years and I, Sally G, have been a fan of Roddenberry’s vision ever since. As a freshman in New York City, two friends and I laboured for months writing a script for the original Star Trek. “Trek Sisters” 1969.

Our script was accepted by Gene Rodenberry (we have his signed receipt!)… just before the whole series was cancelled. Our dreams were shattered but the fan adoration lived on!

I moved to Toronto in 1974 after finishing graduate school and, through my entire career, I found that Star Trek brought people together who perhaps would not normally socialize.

Common ideals and philosophical perspectives crossed over perceived racial, ethnic, gender, religious, age and other social boundaries. I found fellow Trekkies everywhere: in my work and in a tech-focused discussion group I led for nearly a decade on weekend mornings at the McLuhan Coach House in Toronto.

Back in New York, not far from where I had lived in the 1960s in Manhattan, another youngster, named John R. Adler was also inspired by the show. John would be starting his extraordinary medical career at Harvard just a few years after Star Trek was syndicated. In 1987, John [...] continue the story

Is Seeing the Doctor 400 Times Too Much?

This is a cautionary story of how it can be expensive in time as well as money to know too little about your own health and treatments.

The 400 visits in the title is what it is because for seven years I went to the doctor’s office for weekly injections of methotrexate. Year after year I dealt with snow, rain, ice storms, paying for parking, dealing with the difficult receptionist and wasting time waiting. The only positive side is that I now know my doctor very well.

After that endurance contest I can say that for me the biggest advantage to being involved in a clinical trial was a conversation with a trials nurse who said “Why aren’t you doing the injecting yourself?” A classic “Had I But Known” was my answer. If I had had the faintest hint that I could have been doing it on my own I would have. This author was one of the queens of the HIBK (Had I But Known) genre That marked the last time I had someone else take care of my injections. Now with social media, people who are connected to other patients can find that answer much faster than I did.

Thinking of how many [...] continue the story

Women with Fibroids Movement: Part Six—“Sheros” Wanted!

Women across the country are banding together to advocate for timely and appropriate care and treatment. The uterine fibroid patient advocacy movement is creating an organized and unified patient voice, the first step towards being taken seriously by the medical community—as opposed, Patricia says, “to being seen as a lot of screaming women, which is kind of what we’re taken for now.”

More women like Mercy, who had the courage to find her own solution, are connecting to each other, learning from their empowering and motivating experience:

Even when a woman is armed with knowledge about abnormal uterine bleeding treatment options, and knows   how to interact confidently with her doctor, the Canadian healthcare system itself may still throw up barriers to her best treatment outcomes.

So what are women living with these conditions to do? 5 Ways Any Woman Can Be A Shero Being a Shero isn’t complicated. Here are five easy, everyday steps anyone can take to be a Shero:

1. Talk, talk, talk—be a talking Shero. Tell your story to your friends, your family, your boss, your co-workers, your bowling club, your yoga class-anyone you haven’t shared with. You might be surprised by how they respond and by how many women may be [...] continue the story

Women with Fibroids Movement: Part Five—Face to Face with Your Physicians

Information is powerful. When you’re ill, it’s your right to be given the information you need to make the best decisions for you and your body.

A question is a powerful thing, because it yields information. Ask as many questions as it takes to understand your condition and your treatment options. Ask questions like your life depends on it—as we’ve learned from the stories told by the women leading the uterine fibroid patient advocacy movement, it kind of does.

It’s important to ask smart questions. We’ve made it easy for you. Here are the top questions to ask…

When you get any kind of diagnosis:

What is my diagnosis? Please explain it thoroughly to me in plain language. What are the treatments/medications? What are they composed of and why? Are there any risks associated with the treatment? Are there any alternative treatments? Where can I get more information? What are the planned procedures?

When you’re told you need a hysterectomy:

What are the treatment guidelines in our country, and more to the point, how can those guidelines be applied to me? When are hysterectomies indicated under these guidelines? Do I have any of those conditions? What are the treatment options offered at my hospital besides hysterectomy? How can I find a doctor who [...] continue the story

Women with Fibroids Movement: Part Four—Information is Power

Practitioner-patient interactions can represent a potential barrier to timely and appropriate diagnosis and treatment, as we learned in a previous post in this series. In the prolonged and confusing healthcare journeys that some of the 15 women at the forefront of the uterine fibroids patient movement have gone through, practitioners have sometimes diminished their suffering and denied them information: “After a million trips to my GP, he told me to just try putting up with it.”

“I asked him about my test results. He said, ‘You wouldn’t understand.’”

So how do you advocate for yourself and speak confidently with your physicians? With information! So here’s some information you need.

You have other options besides “the H word.”

Uterine fibroids account for more hysterectomies in Canada than any other condition. As patient advocate Holly Bridges explains, “Doctors haven’t been taught to do anything but hysterectomy” to treat fibroids. That’s unfortunate, because multiple, minimally invasive treatment alternatives now exist for conditions that cause excessive bleeding. Here’s just a sampling of treatments experienced by only five of these women:

Surgical Treatments:

ablation focused ultrasound embolization myomectomy dilation and curettage (D&C)

Before you decide on any course of treatment, you should ask yourself these 5 questions:

Do I want to have children? Do I want to prevent pregnancy? How [...] continue the story