Participatory Philosophy

By: Kathy Kastner March 30, 2012 The Society of Participatory Medicine supports “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” This concept seems especially essential for anyone whose quality of life is constantly adversely affected by a health condition: get in the driver’s seat.

 

Be that as it may, being a participatory patient is not for the faint of heart. As a member of the Society, I decided to articulate my own philosophy:

My 8 Point Philosophy of Participatory Medicine

1. I want to learn about my health issue(s).

* I feel I have sufficient skills and capabilities to be participatory. * I understand that, along with the learning and empowerment process, come stresses, disappointments, irritation, frustration, and exhaustion.

2. When I don’t understand something, I ask for an explanation.

* In the doctor’s office, I seek strategies to improve meaningful communication, and ask that jargon be written down so I can do my own research. * Before a doctor’s appointment, if I’m fearful, I research my symptoms and conditions to the best of my abilities, and bring my questions with me.

3. I’ve learned to do my own research, using [...] continue the story

To Answer Honestly, or not…

By Sean McDermott

“How are you”, says my Doctors.

“How are you feeling” say my friends.

“How have you been” say my acquaintances………………….

I don’t know how to answer. I don’t know how to explain or analogise this state. I am still waiting for a liver transplant after four years. Those haven’t been wasted years because I’ve learned a lot about myself and I haven’t changed a lot, but I have a little. The fact is the liver transplant list here in Toronto is comprised of 6-700 individuals like myself with various factors leading to the eventual destruction of enough liver tissue to prevent any possibility of re-generation. The person to receive the next transplant (about 1 every 3 or 4 days) is close to death or heading there quickly and will not live without transplant. Others like me suffer imbalances in our metabolism that causes fluid retention and extreme fatigue.There is a separate structure (Living Donor) for those whose family or friends will donate half a liver in an elaborate but lifesaving surgery without the wait.

The wait.

If I were to find you lined up in a bank or for a bus, and instead of being the usual ten minutes it was now two hours [...] continue the story

Defying the Odds – Living with ALS

The Robertsons share their experiences living with ALS and how their support systems help them. Thank you to the Robertsons, for all you do in the ALS community, and to Kyle and Matt for filming/creating this video.

My Cousin Kristin

*** Editor’s Note: Mitch was 12 years old when he delivered this speech to his school.

————————————————————————————————————————- Just close your eyes and imagine. Imagine you are in a room at a hospital waiting for the doctor to arrive after a checkup. Then the doctor comes out and says, “Well, I hate to say it but… you have cancer.” Hello teachers, judges and fellow students.

To many of you this is just an imaginary scene. But for many people, this imaginary scene is a reality.

Nine years ago this happened to my cousin, Kristin Malone, when she was only seven years old.

It was May 19th, 1994. She had not been feeling well, so she went for a check up with her doctor. She went back to school that day and my aunt went back to work. They thought everything was fine. Then while at work, my aunt got a call from the doctor’s office. They suspected Leukemia! The doctor told her to take Kristin immediately to the Children’s Hospital in Calgary, Alberta.

Imagine how terrifying that would be! You are in your car, on the way to see if you have cancer or not.

Immediately, Kristin had blood tests, and the doctors had to get a sample of [...] continue the story

Now To Tell the Kids…

By Soania Mathur

Time to tell the kids… As I laid down with my youngest daughter tonight, as I usually do while she drifts off to sleep, she looked at me and asked in a tired but inquisitive voice, “Were you born with Parkinson’s”. “Well, it’s a little complicated…” I began. This is just one of many questions I’ve fielded from my girls over the years. “Does your medicine make you feel better?” “How can you swallow so many pills?” “Mama, why are you limping? Did you hurt your foot? ” “Why can’t they find something to make you better?” And my favorite “If I hold your hand forever, will it stop shaking?”

I still marvel at the matter-of-fact nature of the conversations we have about Parkinson’s and the comfortable manner in which our girls discuss this disease. It’s exactly the way I had hoped my Parkinson’s would be perceived by my daughters – as a part of life’s challenges that can be dealt with, not as a frightening life stressor. Children these days are having enough difficulty navigating the world, dealing with school, peer groups, hormones and so on and the last thing I ever wanted was to add to their burden.

Let’s [...] continue the story