Sparks of Change

25. Mar, 2015 Peaks and Troughs. Ebb and Flow. However much I strive for consistency, it always seems to evade me. Partly because I guess ‘that’s life’. Partly because I seem to like to mix things up! I tend to regularly kick off new challenges. From finishing 2014 tired, living back home, and struggling with a deterioration in my disability. I’m now in a new flat, building my health back up, and fighting (tooth and nail) for improvements on my wheelchair, car, care and housing adaptions. I was lucky to spend time in Fuerteventura and Austria since the New Year began, which helped keep my spirits up for sure. Having ensured that my foundations were supporting my weaker body, and that my diary commitments are within my new limits; I’ve started building life onwards and upwards again. Finally, after 4 years of self employment, I’m earning enough regular income to breath a little easier. I won’t take things for granted, but I feel more able to buy myself a couple of non essential/materialistic treats for once! Believe me, I’ve had some dark moments and thoughts since leaving my London monthly salary in 2011. Whilst having enough money to cover the bills and to ‘live a [...] continue the story

Why we think IBD should be considered a Chronic Illness

Published on Nov 25, 2013

Elliott and Rob from Gut Inspired, a group of Canadians living with Inflammatory Bowel Disease (IBD; Crohn’s Disease and ulcerative colitis) talk about why IBD should be considered a ‘chronic illness’. When living with IBD, understanding and support are incredibly important. Imagine a world where you don’t have to explain what living with IBD is like because your friends, family and employers already know, where the government sees digestive disease as a priority and where people experiencing IBD symptoms are identified and diagnosed right away. We think this is possible if you keep taking the time to tell others what it is like living with IBD. Elliott, and Rob share from their first-hand experience living with IBD and challenges they have faced in hopes that their actions, might help others. We hope you share your story too. For more information about Gut Inspired and living well with IBD visit www.gutinspired.ca or join the conversation. www.Facebook.com/gutinspired www.twitter.com/gut_inspired | @gut_inspired

Cracked: new light on dementia

Published on Jun 3, 2015

Cracked: new light on dementia follows Elaine Carter’s journey from her diagnosis through to her new life in a long-term care home. Elaine and her children, Caroline and Clay, grapple with what the diagnosis means, if and how the diagnosis changes their relationships and how they struggle to be with each other in the present where Elaine calls them to be. Filled with poignancy, honesty and humour, this play brings to the fore the richness of the social world of dementia and encourages audiences to see the humanity of persons who are living with dementia. The play is an innovative research-based theatre production that casts a critical light on society’s one-dimensional view of dementia as an unmitigated tragedy. The play raises questions about the predominant discourse of loss that defines current conceptions of dementia, and the dehumanizing care practices that still prevail in institutional care settings. Inspired in part by Leonard Cohen’s words in Anthem, the play is intended to inspire alternative ways of seeing persons with dementia, instill the importance of maintaining strong relationships with them, and reinforce the imperative for good ethical care.

The play is based on research conducted by Drs. Sherry Dupuis, Gail Mitchell, [...] continue the story

It Took Breast Cancer for Me to get Tattoos

By Kristen Knott

Written May 23, 2015

She begins. I scrunch my eyes and hold my breath, fighting through the first couple of minutes, adjusting to the sensation of the needle piercing my skin. Gradually, I start to let my body relax. The pain is not as intense as I thought it would be. It helps that Kyla moves from my left boob to the right, instead of remaining in one spot, which keeps my mind distracted and spreads the discomfort. I flinch as she injects into a tender area right near my left scar. I close my eyes and concentrate on breathing in order to get through it. She asks me if the pain is too intense. I tell her it hurts a lot but I’m ok.

“Please continue,” I say. So she does.

“There! Go take a look.” Kyla Gutsche instructs. She is the Pied Piper of cosmetic tattooing. We are in her office, which is housed in a traditional medical building in the heart of Peterborough of all places. I sought Kyla’s services booking a year and a half ago to make sure I was in her queue. After my mastectomies I yearned to see the same familiar sight, the one [...] continue the story

Me, Myself, and My Depression

When I began putting together this narrative of my experiences, I had no idea where to start. I was feeling a little lost. Normally I’m very on top of things, I do my readings two weeks ahead of schedule and like to get assignments done a week before they’re due. But for some reason, I found myself procrastinating about working on this. I think it had something to do with the fact that finding words to form a coherent and cohesive discussion about my experiences with mental illness was extremely intimidating and scary. In the beginning This is me when I’m 3 on my first day of school. Apparently I was NOT happy to be going. Although I didn’t start feeling the symptoms until later in my teens, anxiety is something I’ve been dealing with for as long as I can remember. My parents put me in a bunch of different sports when I was a child and I can remember becoming extremely anxious before a swimming lesson or a softball game, the week leading up to it filled with dread. Reading through report cards from Grade 2, I read comments from my French teacher about how I cried a lot, especially [...] continue the story

Side by Side

A FILM BY NIC ASKEW. MORE FILMS AT NICASKEW.COM

Birgitte was concerned about her ability to express herself fully in the English language. Ironically she might well have articulated the very experience of compassionate care.

In the complex landscape of Schizophrenia, I imagine such care should not be absent. Care that is unconditional. Care that is full of hope and of possibility.

This film portrait is part of a Series on Schizophrenia made possible by Otsuka and Lundbeck.

More films by Nic Askew

Toodaloo Motha…

Ken Jeong of “The Hangover” fame, shares this intimate perspective of his wife’s cancer and its impact on him as caregiver.

This is part of a series of films for the upcoming WETA and Ken Burns Cancer project. cancerfilms.org/story-wall/

Patient Voice

Patient Voice was made possible by a grant from the Arnold P. Gold Foundation, created in collaboration with the Children’s Brain Tumor Foundation. We worked with an amazing group of young people who created images which they narrated for a video to describe their own experiences – My Diagnosis, The World of Medicine (the good and the bad) and What Keeps Me Going.

Most recently, with grants from both the Fred J. Epstein Foundation and the Arnold P. Gold Foundation, we are continuing our “Patient Voice” work, engaging people in sharing their experiences to educate those working in the world of medicine.

Sjogren’s Makes Life More Complicated

After 20 years with Rheumatoid Arthritis I developed Sjogrens Syndrome.  It is another autoimmune disease most recognizably showing itself as very dry eyes and mouth. It would have been called Secondary Sjogren’s in the past because it developed with another autoimmune disease, but the classification criteria has changed recently.

Dryness is a problem The dryness affects all areas of the body but is far more noticeable and annoying in the eyes and mouth. I use pilocarpine (salagen) in pill form for my dry mouth. It is a prescription drug. Without it my voice starts to diminish and I cough and choke a lot. It is possible to have a compounding pharmacy make up a mouthwash using pilocarpine but it has a very bitter taste.  I also use Biotene Oral Balance at night.

Since the lack of saliva makes your teeth more susceptible to decay it is very important to take care of your teeth well.  I read that using a night guard when you sleep helps with the saliva production because it is a “foreign body” in your mouth, so I got one. I also clench my teeth and get headaches and this helps with dryness and clenching.  You can put a re-mineralizing agent like [...] continue the story

Compassion for Voices: a tale of courage and hope

Historically, the primary aim of psychosis treatment has been to reduce or eliminate psychotic experiences (eg with antipsychotic drugs), which has shaped our broader cultural views of these phenomena as being the undesirable symptoms of a disordered brain. This results in stigmatisation of people with such experiences, which is not only isolating and shaming for them, but can also drive them into an internal battle with their experiences, eg attempting to fight, control or suppress them.

This 5-minute film presents an alternative way of relating to experiences; this goes against the tide of traditional approaches and culturally engrained attitudes. Essentially, it charts the therapeutic progression of a young man, Stuart, from being tormented by his voices, through establishing safeness, to developing the qualities needed to engage with them through compassionate dialogue. For people with psychosis, this may have therapeutic value as a template or metaphor for their own recovery journey.

Compassion for Voices is a Cultural Institute at King’s project in collaboration with the Department of Psychology and animator, Kate Anderson.