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By Louise Kinross We recently heard from former Bloorview School student Osmond Shen, who wanted to share his acquaintance with deep academician dispatch to amusement involuntary movements caused by cerebral palsy. "It's made a huge difference in my body," says Osmond, 20, who enjoys playing Nintendo switch amateur with his brother Edmond, studying with a tutor, and online shopping. Deep academician dispatch is a anaplasty where thin affairs called electrodes are placed into one or both sides of the academician in areas that control movement. The electrodes are connected by extension affairs to a battery-operated device, similar to a pacemaker, placed under the skin below the collarbone. A few weeks after surgery, this device is programmed to arrest the atypical signalling patterns causing movement problems. BLOOM: What problem were you hoping deep academician dispatch would treat? Osmond Shen: To decrease my dystonia, or uncontrolled anatomy movements. Before my surgery, my legs were painfully ashore together all the time. Also, my neck was becoming so stiff and ashore to one side, that it was difficult to turn my head aback and around. I experienced lots of pain when my anatomy were stiff, and, when you go through constant pain during the night, you [don't] accept enough sleep. BLOOM: Had you tried other treatments? Osmond Shen: Yes. I had been on an intrathecal baclofen pump back 2005. But even though for the last couple of years I've been on a high dose of this medication, my anatomy was still stiff. BLOOM: Who suggested deep academician dispatch to you? Osmond Shen: My baclofen pump doctor at Toronto Rehab referred me to a movement ataxia clinic at Toronto Western Hospital. BLOOM: I thought this anaplasty was always done while the patient was awake, but that wasn't the case for you, right? Osmond Shen: No. I wasn't awake during my six-hour procedure, because of my uncontrolled movements. BLOOM: Was the recovery painful? Osmond Shen: It wasn't painful, but it was very uncomfortable. I had staples on three genitalia of my anatomy because, in addition to deep academician stimulation, I had my baclofen pump replaced. The staples were itchy and made me so uncomfortable. BLOOM: What difference did deep academician dispatch make, in terms of how you feel, or what you can do? Osmond Shen: First of all, I can turn around my neck easily. Also, I accept much beneath pain in my legs. It's made a big difference back it was turned on. My anatomy has been much added relaxed and flexible. Life is much easier for me now. BLOOM: Many bodies would be anxious about having this surgery. Did you do anything in advance to try to help you relax? Osmond Shen: My parents, my physiotherapist, my neurosurgeon and my family friend were all so positive, and on the same page, and kept auspicious me to go for this procedure. My part was doing research about this technology on the Internet. BLOOM: Is there anything you aren't happy about with the results? Osmond Shen: I can't be happier than I am today. The after-effects are what I expected, and my doctor said it usually takes about one year to reach its full result, so I still expect added improvements.

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By Louise Kinross Imagine you're a young filmmaker with multiple sclerosis living in New York City. Your documentary When I Walk has won an Emmy.  You're able to alive on your own and work, because New York State Medicaid covers 24-7 care aids who come to your home. Then your marriage ends and your wife and son move to Austin, Texas. Your symptoms worsen: you can't move your upper body or open your easily and blurred vision makes it hard to see. Because there's no consistency in state-run Medicaid, moving to be close to your son means losing home care and moving into a nursing home, where you can't set your own schedule or have a personal aid. Yup. Stay in New York so you can alive at home and work, or move to Texas to watch your son grow up from an institution. That's the bind that faces Jason DaSilva in The Disability Trap, a short film he made for The New York Times. In the film, Jason researches Medicaid care in Texas and its adjoining states, and learns that his only option for round-the-clock care would be a nursing home. So he trials one. The contrast in care, and environment, is stark.  What's the point of having health-care, if it's not portable within your country? It would be interesting to know what the annual cost of care in a nursing home is, compared to the 24-7 aids who rotate shifts in Jason's home in New York.  The Disability Trap is a disturbing look at how Medicaid advantage varies wildly from state to state.

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By Louise Kinross  A six-week narrative group for inpatient nurses at Holland Bloorview promoted greater affinity for patients and families, for anniversary other, and for the nurses themselves, according to a study published in The Journal of Pediatric Nursing last month. I was a facilitator on this project, which was led by Keith Adamson, then collaborative practice leader at Holland Bloorview.  The other facilitators were Andrea Charise (photo centre left), who directs an undergraduate bloom humanities program at the University of Toronto, and Shelley Wall, a medical illustrator and abettor professor in Biomedical Communications at U of T.  Sonia Sengsavang (photo right), a PhD candidate in developmental psychology, was research abettor and Michelle Balkaran (left), a assistant and now an interim operations manager here, was part of the research team. I will write pieces on anniversary of three areas where the group was shown to improve empathy. The first was affinity for patients and families. Anniversary 90-minute session began with account of a accommodating story, poem or comic that addressed common themes in children’s rehab such as ‘Seeing from different points of view;’ ‘Obstacles to empathy;’ and ‘Making allowance for hope.’ Facilitators led a discussion of the reading, then gave participants a related writing or drawing prompt. For example, ‘Write about a time that you received care’ or ‘In a three-panel comic, acquaint the story of a accommodating through their parents’ eyes.’ Participants then shared and discussed their work. In the study, affinity is declared as “The capacity to brainstorm the situation of anniversary accommodating and their family—understanding their animosity and perspective, and responding in ways that make patients feel heard and cared for…”  Participants, from anniversary of Holland Bloorview's inpatient units, formed with children hospitalized following painful bone surgeries or life-changing trauma, such as brain injury, or with circuitous medical problems.  Anniversary assistant did an all-embracing interview before and after the group.  Prior to the group, nurses bidding a desire to understand the family’s perspective, but often in the jargon of accommodating and family-centred care, the study found. For example, they “partner” with the family, and “Think of yourself being in their shoes,” but don’t give specific examples. After the intervention, participants declared a new understanding that every family has a unique backstory—the complex, often painful experiences that occur before and during the accepted care episode. This backstory guides concrete ways to express empathy, through kindness, listening, being aware, adjustable and patient, trying not to judge, and giving the family the benefit of the doubt. “These stories helped me think, Okay, this is a young girl,” one assistant said. “She misses her mom. Let’s aloof take five minutes.” Another said: “trying not to be so quick to judge things and to listen better.” And another: “On Tuesday back I was doing a anchorage needle with a accommodating who has cancer…I [thought], ‘oh my goodness they are ailing for a long time and it seems, like never-ending’…that insight that I got from the comic…it’s like ‘Yea, this must be really hard in their life.’” Along with this new recognition of the complexity and fragility of families comes the understanding that nurses’ words and actions accept tremendous power to help or harm. Prior to narrative training, participants declared a tension in balancing “direct nursing”—their medical tasks, procedures and documentation—with providing affecting support. Given time pressures and the expectation to maintain able detachment, they prioritized technical tasks over affecting support, describing the latter as “outside my nursing hat.” After the narrative group, the nurses elevate compassion, listening, being adjustable and providing a safe space to families, as being on par with direct nursing tasks. For example, “Yes, we do the technical stuff but we feel like we’re so abundant added the emotion, the support, as well,” one said. And: “Really demography that time to sit down, as we were experiencing in the six-week [intervention], right? Give them a safe space.” Nurses also reported being added acceptable to share personal information if they felt it would help them connect with families on a human level. “…sometimes telling [patients/families] something about your own life may put them at ease or help them relate better to the situation they’re in.” The researchers coined the phrase moral empathic distress (MED) to describe a new, emerging concept in rehab nursing. “MED can be considered an internal state associated with nurses’ animosity of abstruse helplessness, which emerges back nursing interventions are unlikely to alleviate a pediatric patient’s physical affliction or chronic condition,” they wrote. This was heightened in rehab because clinicians develop relationships with children and families over months to years. Pre-intervention, nurses declared this dilemma: “It’s added like picking up your own child, right?” said one participant. “So back we see suffering it’s added disturbing.” After narrative training, participants were added acceptable to recognize that back there is no medical solution, their affecting presence with patients and families was invaluable. “Maybe there’s annihilation added we can do, but… what I’ve learned is aloof to be present for the family and be their support,” said one. “And to hold their hand and to acquaint them, ‘Cry and be mad, because that is normal—you’re going to grieve.’” Through storytelling, participants learned that their peers all experience work-related emotions like regret, affliction and helplessness. Knowing that they were not alone in these emotions helped them cope. “One of the other [nurses]…was account her piece and demography about how her accommodating was in affliction and she was trying to help and it’s not helping,” one actor said. “And in the action she’s crying. You know, seeing how it’s not aloof me who gets really affecting and thinks about it—it’s other agents too.” We'll explore how the narrative group increased affinity for participants' assignment peers and themselves in approaching posts. This activity was funded by a Catalyst Grant from the Bloorview Research Institute.



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By Louise Kinross There are so many admirable media belief on new ways of thinking about disability and adjustment at the moment. Let's start with this interview with A. Laura Brody in VoyageLA. Laura is a costume maker and artist who "[re-imagines] wheelchairs, walkers, and mobility scooters as works of art," she says. "My interest in mobility devices came from dealing with a former boyfriend's stroke. I was fascinated by wheelchairs, walkers, and any other devices that help people move and adapt. However, I couldn't understand why their designs were so cold, analytic and hideous. They were almost insultingly ugly."  I pulled the photos above of a wheelchair Laura turned into an Edwardian throne from her website  Opulent Mobility. This afternoon I heard another admirable CBC Tapestry episode hosted by Canadian singer songwriter Christa Couture. BLOOM interviewed Christa in the spring, after a maternity photo shoot she did with her prosthetic leg went viral. Christa had her leg amputated as a adolescent teen to amusement cancer. Last ages Christa did a series of Tapestry interviews on Rethinking Disability. They include a talk with Eli Clare, author of Brilliant Imperfection: Grappling with Cure, who is an American poet and activist with bookish palsy. "On an individual level, my bookish palsy is defined as 'trouble,' both medically and culturally," he says. "And yet, I don't accept any abstraction who I'd be without tremoring hands, slurring speech, tight anatomy and a rattling walk. So the abstraction that my bookish palsy could be cured, in other words taken away as if it never existed, would totally and completely change who I am." This interview blew my mind. Christa also interviewed Halifax sex drillmaster Kaleigh Trace on how she came to love her body, including a disability she acquired in a car blow as a child. And Christa talked with Toronto's StopGap founder Luke Anderson on the merits of identity aboriginal vs. person aboriginal disability language.  The Tapestry episode this afternoon included a candid interview with Amy Silverman, author of My Heart Can't Believe It. Amy is an American journalist who learned she wasn't as accepting of assortment as she thought back her daughter Sophie was born with Down syndrome. "We all accept something that rocks our apple ... that is a challenge that we think we could absolutely never meet," she says. Finally, this Tapestry interview with Simon Paradis, a musician who suffered a astringent brain injury in an accident, and his wife Kara Stanley, explores how the Canadian brace try to embrace a new normal. "There are moments back I'm playing at a gig, and I look at my left hand and think I'm going to play this Jimmy Page rift that I absolutely like, and all of a sudden my fingers do something completely differently from what I'm actually trying to think of...' Simon says. I think Christa Couture deserves her own CBC affairs to explore disability and adaptation. Here are some other films and articles account a watch or read. Between sound and silence, The New York Times This is a fabulous abbreviate film where adults who are deaf describe what it's like to live with cochlear implants. Children are actuality euthanized in Belgium, The Washington Post An opinion allotment about three children given lethal injections in Belgium. They included an 11-year-old with cystic fibrosis and a 17-year-old with Duchenne muscular dystrophy. Matt, Healthy Debate A fascinating interview with Matt, a adolescent man who becomes a claimed support worker for another adolescent man who has quadriplegia and uses a ventilator after breaking his neck in an accident. I'm not sure why Matt's last name isn't identified? Rich Donovan was the only trader with a concrete disability, The Muse Rich has a new book advancing out called Unleash Different: Achieving Business Success Through Disability. Here, he talks about working on Wall Street as a portfolio manager and how he created some workarounds,  because his voice can be difficult to understand. Boy with mystery condition is worshipped as a god, Born Different A six-year-old Indian boy with disabilities is worshipped by locals who believe he is the reincarnation of the Hindu god Ganesha.   

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This blog covers numerous different capacity related to JVM Languages and Internals. In particular how the JVM and languages that run on the JVM assignment under the hood. I also have articles about development of mobile web sites that interested me as I'm a fan of building mobile sites that are fast, use CSS finer and don't use much javascript.

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Credit Conversations is part of the Bloom Economic Research Division (BERD)… ... Bloom co-founder, Jesse Leimgruber, outlines the problems with data ...

Quit Your Job And Move Abroad: The Cheapest Places To Live In 2018

By Louise Kinross Living in hospital for months of rehab after anaplasty can be hard for a kid and their parents. Kim Hoben (above left) of Whitby  says the kindness of neighbours, accompany and family has made her stay at Holland Bloorview with daughter Riley, 8 (right), so much brighter. Riley, who has cerebral palsy, had anaplasty on her hips, femur and hamstrings and has been here for three weeks. It started when Kim's neighbours collected hundreds of dollars from people in the community and her son's hockey team to cover gas and parking costs for the trips back and forth from the hospital.  Then the family received a box with a package for Riley to accessible every single day she's in hospital. The bags are dated, and a great way to start the morning, Kim says. "The presents are crayons, a pencil case, books, a blanket, slippers, nail polish, and a brush. Things that keep her busy and are so special and thoughtful." The first weekend the family came home, they were met by accompany lining the driveway with balloons and a 'Welcome home girls!' sign.  Help has also appear in the way of accompany offering to stay overnight at hospital with Riley, or absorb time with her during the day. "On Monday night a neighbour slept over and backward all day Tuesday. She took a vacation day to do it. My son was with my sister, so my bedmate and I went out to a restaurant.  A abecedary came one day so I could go home and watch my son play baseball." Kim keeps accompany updated on Riley's progress on Facebook and in a messenger group.  "The days are long here, and it's hard to be here 24-7," Kim says. "The support we've had is incredible." Kim addendum that her community has appear up with specific ways to help, without the family asking for it. Parents of accouchement with disabilities often find that people say "Call me if there's something I can do," but don't take action. When neighbours visit, Kim says, they bring food and snacks. Riley says her favourite activities at Holland Bloorview are "physio and rec."  "The recreation programs here are amazing," Kim says. "Three times a day, they may do crafts, go to the gym, bake or play games. Riley likes to go on her own and do her thing, so it's also a breach for me. Riley loves the student volunteers who work with the program." As of yesterday, Riley walked with a cane for the first time. "Now she's swimming, which is great for her legs," Kim says. "She's like a fish in there." Want to support a child and ancestor in hospital? Consider all of the practical ways the Hoben family has received support and take action!