VOLUNTARY HOSTAGE SITUATION – Ali Ingersoll
This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village – caregivers, family, friends, agencies, medical professionals, etc.
I need to first start out by saying that anyone willing to help me, paid or not paid, physically live my life each day is such a beautiful gift and I appreciate every single human who takes time out of their life to make my life possible.
However, there is a side of life many of you who do not live with a disability cannot possibly see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.
I have to be mindful of those who take care of me. I have to make sure they feel safe, compensated, loved, taken care of, and appreciated. This is important. Anyone who is helping me is responsible for making sure I physically stay alive each day. While I might direct my life I don’t always have control at the same time. This can be emotionally crushing at times.
How so? Well, if I am not carefully managing the multiple emotions of people in my household to make sure they remain happy and healthy then they either will not be able to take care of me or will not want to. Many people feed off my positivity and determination. This is not to say I don’t have my hard days, but who wants to the care of a person who is grumpy or angry or running a drill Sgt. type of life each and every moment?
If I want to snack at nighttime I have to ask someone for it. I can’t simply get up and get it myself. However, if I just asked that person to do four things in a row for me by getting up and down they might get a little bit annoyed with yet another thing I ask them because they have been running around for me. I have to strategically think about how and when I ask for things.
At times I feel like I have become my own emotional hostage. I have to push down many of my personal emotions to make sure others around me are emotionally taken care of before dealing with my own personal emotions at times. This is hard. This can feel so lonely. Often times, I feel more emotionally disabled than I do physically. However, this is my choice. It is a decision I’ve made.
My life hinges upon the way other people feel. Think about this. Critically. If you are able-bodied and you want something, you simply get up or go out and get it. I can’t do this. Sometimes I sit and cry to myself at night after a long day because everyone else around me is having a hard day, so I need to take care of them, so they will take care of me. It’s a give-and-take, back and forth, and it can be utterly emotionally draining.
I know this is my life. I don’t often complain. I keep pushing forward, but it can be devastating at moments. I’ve learned to live this way for the last 12 years, and I am strong, but even I have my moments. I do know many of my friends who have a strict line between church and state with respect to making sure people’s emotions do not bleed into their own lives when they are being taken care of.
I have tried this. It has failed for me. If I do not take care of those around me then those around me may not have the will or desire to help me.
People around me thrive on my positivity and go-getter attitude. This is great, and most of the time I compartmentalize many of my emotions. I’m not saying this is healthy. It is not. However, this is my life. This is how I’ve had to adjust and it can be utterly terrifying. Truly.
My biggest fear is being left alone and not having anyone to have my back so that I don’t physically die in a day. The simplest of things can kill me – my catheter getting clogged and overfilling, being alone, and having a stroke. It can happen in 30 minutes.
So, I have somehow willingly put myself in my own mental hostage situation. It is hard. It is life. It is my life. These are the compromises I have to make in order to have a household of people around me who want to be around me, and help me.
I only ask that the next time you get up to go get a cup of coffee or tea you think about how you are able to do that on your own. You don’t need help. Just take a moment appreciate your fully functioning body is all I ask.
Congratulations to my friend and SCITCS board member for the past 17 years, Dr. Vivian Mushahwar. We were introduced in 2005 when I became upset at the deaths of Percy Wickman, a politician and local activist for people with disabilities who died in June 2004 and Christopher Reeves who died in October 2004 both from an infection from a pressure ulcer. I felt strongly that both deaths could have been avoided. Vivian Mushahwar, a researcher at the University of Alberta at the time had started to study pressure ulcers. SCITCS provided the initial financial support which resulted in a garment known as Smart E Pants. SCITCS continued to support Vivian’s research and the University named the “SCITCS FES Research Laboratory” in recognition of our contribution.
Dr. Vivian Mushahwar’s tremendous advancements in the medical field are being featured in the @UAlberta‘s spring edition of #NewTrail! Full story: bit.ly/3OIXOKY
The Accessibility Advisory Committee (AAC) advises Edmonton City Council about facilities and other infrastructure, programs, services, activities and policies to improve livability in our city for individuals with disabilities. The AAC presented its 2021 Annual Report to the City Council on April 13th. It is shared here for your reference.
Secondly, to communicate relevant information and policy with Edmontonians experiencing disability, we are sharing an initiative called Barrier-Free AB . Barrier-Free AB is advocating that an effective accessibility-specific legislation be passed in Alberta. The only other province apart from Alberta to not pass accessibility-specific legislation is PEI. A letter is attached with more information to this initiative.
Thank you for your continued support in the community!
Barrier Free Letter to community groups
Innovation, Science and Economic Development Canada (ISED) launched the Connecting Families initiative to connect low-income Canadian families to affordable home Internet service through various Internet Service Providers. Through the Government of Canada’s Connecting Families initiative, participating Internet Service Providers (ISPs) are offering low-cost Internet to hundreds of thousands of Canadians. This initiative is administered by Innovation, Science and Economic Development Canada (ISED).
Seniors who are in receipt of the Old Age Security and are receiving the maximum Guaranteed Income Supplement (GIS) are eligible for this initiative and could receive low-cost high-speed Internet service at home. If they already have Internet service at home, they could still benefit from this offer. There are two options for them to choose from: “up to 50 Mbps download speed and 10 Mbps upload speed” with 200 GB of data for $20 per month (plus tax); or a basic Internet service package of “up to 10/1 Mbps” with 100 GB of data for $10 per month (plus tax).
Client Enquiries: 1-800-328-6189 1-866-694-8389 (TTY)
Paralyzed man with severed spine walks thanks to implant
A paralyzed man with a severed spinal cord has been able to walk again, thanks to an implant developed by a team of Swiss researchers.
It is the first time someone who has had a complete cut to their spinal cord has been able to walk freely.
The same technology has improved the health of another paralysed patient to the extent that he has been able to become a father. Read More here
Researchers developing bioengineered ‘bridge’ to help heal spinal cord injuries
When Karim Fouad started his career with the University of Alberta’s Faculty of Rehabilitation Medicine looking for a way to heal spinal cord injuries, he remembers the enthusiasm that rippled through his discipline as prospects for better treatments began to show real promise.
“Spinal cord researchers thought they had found the reason the nerve cells don’t regrow in the spinal cord, but it turned out there was more than one reason, there were three, then four,” said Fouad, who holds the Canada Research Chair in Spinal Cord Injury. Read more here
This report looks at how programs designed to help vulnerable populations have been trimmed or reworked by various governments. The result is a complicated system of services that can be nearly impossible for those in need to access or maintain – click below to listen
Neuroplasticity & FES Cycling: New evidence suggests recovery in spinal circuits. What does that mean for people living with SCI?
Mushahwar – FES Cycling Webinar (for circulation)
J Neurophysiol 2018 v119pp2194-2211 (FES-cycling for Improving Walking)
We are requesting input on the implementation of a provincial strategy for spinal cord injury through a 7-10 minute survey.
The Alberta Spinal Cord Injury Partner committee, a group of spinal cord injury stakeholders including people with lived experience, community groups, researchers, health care and government, have developed a Spinal Cord Injury Strategy for Alberta with the purpose of improving the quality of life of those living with spinal cord injuries by working together. The Strategy is a roadmap to encourage and support cross-sector collaborations to share expertise and knowledge, leverage funding and resources and create opportunities to work better together. The Strategy is still in draft form but nearly complete and will be publicly launched in the coming months.
We are developing an implementation plan for the Strategy and have created a survey to collect feedback and thoughts on how best to implement the Strategy from of those impacted by spinal cord injury (including people with lived experience, those working in not-for-profits and community groups, academics, healthcare professionals and administrators, government, etc.).
The input we receive is crucial in ensuring the Strategy is properly implemented and best serving those it is meant to support.
The deadline to complete the survey is May 12th.
Thank you for your help and support.
If you have any questions please contact Shannon Wowk (email@example.com), the Research Strategy Coordinator at Campus Alberta Neuroscience.
Partners from community, research and healthcare are co-developing a strategy to improve the quality of life of those living with a spinal cord injury. Fill out this survey and have your say in how the Spinal Cord Injury Strategy for Alberta is implemented https://forms.gle/yH4Gn3Pmr8HdyCdH7
Together partners from the community and people with lived experience, researchers and academic institutions, health care professionals and leadership and government advocates and policy-makers are developing provincial strategy to improve the quality of life of those living with spinal cord injuries. This strategy is meant as a roadmap to encourage and support cross-sector collaborations for the sharing of expertise, knowledge and resources.
These partners would like your feedback on how best to implement this strategy. Please fill out this 7-10 minute survey to provide your thoughts on things like which recommendations to prioritize, current gaps, etc.
Deadline to complete the survey is May 12.
Option 2 – for organizations that have played an active role and/or are a partner of this strategy
*insert your organization* is pleased to be a partner in the development of the Spinal Cord Injury Strategy for Alberta. This strategy is co-developed by partners from the community and people with lived experience, researchers, health care professionals and government. The purpose of the strategy is to improve the lives of those living with spinal cord injury and will act as a roadmap to support and encourage collaborations across sectors and the sharing of expertise, knowledge and resources.
We would like your feedback on how best to implement this strategy through a short survey. Provide your thoughts on things like which recommendations to prioritize, current gaps, etc.
Deadline to complete the survey is May 12.
Click&Push Accessibility Inc successfully won the Audience Choice Award at the Praxis Ideation Challenge – SCITCS provided funding for the initial development of the device
Read more here: Click&Push Accessibility Inc
Click&Push Accessibility Inc. was created to commercialize technologies and research from the Rehabilitation Robotics Laboratory within the Faculty of
Rehabilitation Medicine at the University of Alberta. These technologies promote improved accessibility for all.
We are happy to welcome you on our journey to improve universal access for all!
See more here: https://clicknpush.ca/
New Stem Cell Treatment for Paralysis Shows Early Promise
The search for a stem cell treatment has long been the big hope – a kind of “holy grail” –for spinal cord injury research projects. It just makes sense–to medical researchers and neuroscientists as well the rest of us–that stem cell treatments ought to work.
Here’s why: Stem cells have the amazing potential to renew themselves, and to develop into many different types of cells in the body. So injection of stem cells should logically be able to reverse or repair damage to the spinal cord and restore some feeling and movement after an injury.
However, the “miracle” cures we often read about somehow never pan out. The research turns out to have major flaws; the “results” don’t last or can’t be duplicated. Sometimes, the “study” itself is actually a scam to lure hopeful people with spinal cord injuries into undergoing expensive treatments in a foreign country. We don’t usually report such studies on our website or in this newsletter for fear of raising false hopes.
Read More here
My name is Winnie and I work for Saraswathi Vedam, Principal and Professor of Midwifery at the Birth Place lab, University of British Columbia.
We are conducting a nationwide study about people’s experiences of care during Pregnancy and Childbirth in Canada called RESPCCT Study (Research Examining the Stories of Pregnancy and Childbearing in Canada Today.)
What is unique about this study is that a multi-stakeholder team including people with pregnancy and childbearing experiences from different provinces, backgrounds, identities, circumstances and in different provinces, spent two years working with researchers and healthcare professionals to develop a survey is person-centred and designed through the lens and perspectives from people with lived experiences.
The survey is now available and translated into 7 different languages including French, Inuktitut, Chinese (traditional and simplified), Punjabi, Arabic, Spanish. We are particularly interested to hear from under-represented and disadvantaged people and communities as their voices are seldom heard.
We are seeking your guidance and support to reach out to people and community you serve via social media network, newsletter, flyers and postcards display etc.
Anyone who is current pregnant or have received care during pregnancy and/ childbearing in Canada in the last 10 years are welcomed to participate.
Follow this link to learn more about the RESPCCT Study and to participate www.respcct.ca
I look forward to hearing from you. Many thanks for your time.
Winnie Lo MSc (RN, RM-uk)
Community Engagement Coordinator
Birth Place Lab, Faculty of Medicine,
University of British Columbia,
E416 Shaughnessy Building (Mailbox 80)
4500 Oak Street
Vancouver, BC, Canada, V6H 3N1
604 875 2424 ext 5771
moval support program in place that provides funding support to physically challenged residents for snow removal from their private driveways. For more information please visit our snow removal support program page or call Parkland County Parks, Recreation and Culture at 780-968-8888 extension 8311.
Great Organizations Featured at Virtual Experience
And now for the stars of the Abilities Virtual Experience…the companies whose virtual booths will be chalk-full of products, services and resources to catapult your independence! See product demos, chat directly with knowledgeable reps, watch videos, download brochure and so much more.
Read more here
NEURALINK FOCUS GROUP RECRUITMENT
We are currently recruiting 15-24 members for a project sponsored by Neuralink and NASCIC. We are reaching out to you to see if you are interested in participating in 1 or 3 focus groups. Two of the Focus Groups will consist of people living with tetraplegia. One focus group will consist of caregivers and/or close family members of a person living with tetraplegia. This is not recruitment for a clinical trial. This is recruitment of 15 members to serve as advisors to the development team.
Richard B. Stein – A Life Well Lived
Remembering our husband and father
Dr. Richard (Dick) B. Stein. Dick is remembered by friends, family and colleagues as a decent man who treated everyone with respect, fairness and kindness. He attended MIT and Oxford University both on full scholarship. In 1968 he moved to Edmonton with his wife Sue and young children Ellie and Eric. Once there, Dick helped build the department of physiology at the University of Alberta. He was a professor at U of A for 50 years before retiring in June 2018. Papers from his final projects on Parkinson ’s Disease are still winding their way to publication.
Dick was proud of his mentorship of generations of neuroscientists. Dick had the vison that multidisciplinary research was needed to answer difficult questions. He co-founded the Neuroscience group now the Neuroscience and Mental Health Institute at the University of Alberta which supports over 150 researchers. His research and inventions have helped thousands with neurologic and mobility challenges. Dick was also proud of his family. Losing his own parents at age 16, he threw himself into parenting doing fun activities every weekend. As well, he enjoyed ballroom dancing with Sue and wildflower photography. He jogged, rode or walked to work almost every day of his career. He enjoyed cross country skiing and introduced it to many of the foreign students working with him. Dick and Sue travelled to almost 100 countries and Dick said recently that they had had a good and interesting life together.
During the past several years Dick has been increasingly limited by Parkinson’s Disease and associated conditions. As a resident of the Edmonton General Continuing Care Centre during the past 2 years, he has received love and care from the staff on 5AB. They have become our extended family and we thank them for their kindness and devotion. During COVID they have gone over and above risking their own safety to keep our family connected.
An amazing group of former students worked as a team to support Dick and the family over the past 2 ½ years. They enabled Dick to keep walking including outside walks to see the river valley and brought him homemade gluten free cookies. They helped Sue and Dick create a ballroom dance routine which was presented at the Edmonton General in March 2019. You can watch this inspiring performance at
The ”Dream Team” as we call them have supported our family until Dick’s last day and beyond. Thank you to Dirk Everaert, Su Ling Chong, Jaynie Yang, Jacques Bobet and Kelvin Jones. When the COVID pandemic led to a facility lockdown, Dick was isolated from friends and family for 3 months. We wondered if he would survive. But he did survive, never complaining. He relished his phone as a connection to the outside world.
The lockdown lifted on July 23rd and we had three months together taking Dick outside for visits. When COVID hit the EGCCC, Dick became ill within days and tested positive for COVID. He fought for several days longer than expected but succumbed on Tuesday November 3rd. We look forward to having a ceremony to celebrate his life sometime in the future. If you would like to share some of your memories of Dick with his family please email:
Ellie at firstname.lastname@example.org
Thinking of others until the end, Dick’s wish in recent years was to create a fund to support future neuroscientists. Donations may be made to the “University of Alberta” noting your donation is made in memory of Dr. Richard Stein to support the Richard B Stein Neuroscience Graduate Student Fund.
Mail: Office of Memorial and Tribute Giving | 3-501, 10230 Jasper Ave NW | Edmonton AB T5J 4P6
Richard B Stein Neuroscience Graduate Student Fund
ABOUT THIS FUND
This fund will be awarded to students registered in any year of the PhD program in the Department of Physiology or the Neuroscience and Mental Health Institute. Preference will be given to students doing research in the area of neuroscience.
A Quadriplegic, a Specialty Van and a Lifetime of Adventures
A biking accident left Kirk Williams paralyzed, but he has traveled widely and inspired others to follow in his tire tracks.Kirk Williams loved racing mountain bikes and “enjoyed playing on anything that had a motor,” he said. Katie Renker, a photographer and musician, chained herself to big pink boats in climate protests and sang songs with refugee choirs. Mr. Williams graduated in 2009 with a degree in sociology from the University of Colorado in Boulder, “although after spending a semester abroad in Ghana, Africa, I knew my career path was headed towards travel, photography and storytelling,” he said.
Read more here
Researchers discover new path to neuron regeneration after spinal cord injury
Dynamic networks that specialize in the transmission of information generally consist of multiple components, including not only primary processors, like computers, for example, but also numerous support applications and services. The human nervous system is fundamentally very similar—neurons, like computers, process and transmit information, sending molecular signals through axons to other neurons, all of which are supported by non-neuronal components, including an array of cells known as glia.
Read more Here
Busting myths about ageing with a spinal cord injury
Whether you have lived with a spinal cord injury for a long time or were injured later in life, getting older with a spinal cord injury may worry you. You might be concerned about your independence, or your loved ones. That’s why we spoke with Joy Sinclair, a specialist in ageing with a spinal cord injury, to bust some of the common myths surrounding this topic.
Read more here:
Assured Income for the Severely Handicapped.
I would like to address recent concerns regarding the AISH program. During my time as Minister, I have had the opportunity to speak directly with many AISH clients. I know and understand how important this program is for vulnerable Albertans. In fact, the AISH program continues to reliably support our clients and I can assure you, there have been no changes to program eligibility, benefits, or program funding. In terms of funding, it is important to remember that in the most recent Budget, AISH funding actually went up by 6.2% compared to the previous year forecast, and at $1.29 billion we currently have the highest budget for AISH in Alberta’s history.
However, what is also true is that caseload and cost pressures do present a challenge for program sustainability. As of July 2020, the total AISH caseload was 69,785 clients, and the AISH caseload growth rate is roughly three times the growth rate of Alberta’s population.
I have always been transparent in stating that all of our programs are continuously under review. We review every aspect of our ministry because we need to ensure that supports continue to be available to those who need them the most, now and into the future. My commitment to Albertans, on behalf of myself, my government colleagues and the Premier, is that any decisions made will be centered on providing compassionate support for the most vulnerable while protecting the long term viability of our vital programs.
Elon Musk shows Neuralink brain implant working in a pig
With a device surgically implanted into the skull of a pig named Gertrude, Elon Musk demonstrated his startup Neuralink’s technology to build a digital link between brains and computers. A wireless link from the Neuralink computing device showed the pig’s brain activity as it snuffled around a pen on stage Friday night. The demonstration shows the technology to be significantly closer to delivering on Musk’s radical ambitions than during a 2019 product debut, when Neuralink only showed photos of a rat with a Neuralink connected via a USB-C port. It’s still far from reality, but Musk said the US Food and Drug Administration in July granted approval for “breakthrough device” testing.
Read More here
Alberta Wheel Girls: Support group helps connect women in wheelchairs
It’s just past 11 a.m. and 15 women with spinal-cord injuries settle in front of their computers.
They meet online each week as part of an all-female wheelchair support group.
“Do you guys ever find that people treat you like a child?” Bean Gill asks.
“I’ve been patted on the head,” Margaret Conquest responds.
A chorus of understanding groans follows.
“That’s a no from me,” says Danielle Drouin, a 22 year old from Lethbridge who was paralyzed after a car crash almost two years ago.
“I’ve had somebody call my wheelchair a stroller,” says Gill.
The Alberta Wheel Girls group started in April in an effort to create a community of women who could talk openly about their experiences living with wheelchairs.
Conquest is well-known for her advice. A quadriplegic, she has been in a wheelchair since 1991, the longest of anyone in the group. She injured her back in high school when she tried a backflip off a box horse.
Continue reading this article on the CBC News Website
CBC Radio Active link
As the economy reopens, we’re focused on educating businesses on how COVID-related changes can affect accessibility. This 3-min survey will help document the lived experiences of PWDs, so we can better serve our members & their communities.
Click for Survey here
Praxis Spinal Cord Institute (@praxis_sci) Tweeted:
We’re honoured to be invited by @TCS_SDC as a keynote at the Canadian Rehab & Assistive Device Virtual Roadshow. Also participating is Rehabtronics from our SCI Accelerate cohort & @trexorobotics, winner of the Innovate SCI+Neurotech Pitch with @OntarioBrain. #CanadaChinaRehab
Canadians with disabilities face barriers to financial security, researchers find
When University of Alberta sociologist Michelle Maroto came across a Toronto Star article about an Ontario woman struggling to make ends meet while battling Type 1 diabetes, she knew the story was just the tip of the iceberg.
Anna Costa was juggling four low-paying jobs without benefits, and after paying more than $300 per month for insulin and blood tests in addition to rent and groceries, she had little left for savings. Costa was grateful for the Ontario Works benefits she received from the provincial government.
But as with so many living with disabilities across Canada, argues Maroto, provincial and federal assistance programs fall short of compensating them for their financial disadvantage
Read more here
Go-2 Spinal Stimulator Helps Return Leg Function: Interview with Jan Öhrström, Chairman of the Board, GTX Medical
GTX Medical, a medtech company with offices in The Netherlands and Switzerland, has announced that it received Breakthrough Device Designation for the Go-2 system, an implant that provides targeted epidural spinal stimulation therapy for patients with spinal cord injuries. The device aims to allow such patients to regain leg motor function and neurological control.
Robot devices give patients a chance to walk again: Inside China’s Startups
For the paralyzed, standing on their own feet to walk again seems like a far-off dream, with many injuries involving the nervous system being permanent. However, recent updates in innovative robotics technologies can help make this dream a reality.
Yao Fang, a Chinese wheelchair fencing gold medalist in the London 2012 Paralympic Games, regained partial mobility with the help of a wearable robot designed and manufactured by Shanghai Fourier Intelligence. Born in 1972, Yao was badly injured in a car accident in 1998 when she was 26, forcing her to accept life in a wheelchair before the arrival of this specialized robot more than 20 years later.
Fighting COVID Loneliness from a Wheelchair
A world pandemic may have cramped your style – keeping you from your usual activities and seeing co-workers and friends. But since paralysis brings greater health risks in general, people with spinal cord injuries already understand the need for distancing to avoid infection.
The new challenge of Coronavirus for people living with SCI is to keep our social distancing from turning into social isolation. In short, we need to find ways to ward off loneliness.
How do you prevent yourself from sliding into a state of social disconnectedness?
Read more here
(@SPINALpedia) Tweeted: RT @SCI_Illinois: Recent findings show sense of touch can be returned to those with spinal cord injury. Participate in events and SCI trials or read SCIA news at
United Spinal (@UnitedSpinal) Tweeted: McGill University @mcgillu is looking for volunteers for a study to assess quality of life for SCI.
If you are someone with SCI, caregiver, health care professional, decision maker or researcher having experience with SCI, consider completing the survey:
Promising gene therapy repairs spinal cord injury in
An international team of researchers has successfully regenerated spinal tissue in rat models using a new gene therapy designed to break down scar tissue and allow new nerve cells to grow. The therapy, which used a common antibiotic as the on/off switch to activate the treatment for two months, resulted in rats with spinal injuries relearning complex hand movements.
Spinal Cord Injury, Urogenital Health and Pregnancy (SCI-UP) Survey
Dr. Berndl is a Maternal-Fetal Medicine specialist who focuses on pregnancy and physical disability. She has created this survey to address the lack of knowledge about reproductive health and pregnancy in women with SCI, which may affect the care they receive or the healthcare choices they make.
Please take here the survey here
Read more here – Information Sheet
30 years for Spinal Cord Injury Treatment Centre Society
The Spinal Cord Injury Treatment Centre Society is celebrating three decades of research, technology and support.
When Amy Mercer was three-years-old, she was in a collision that left her paralyzed from the chest down.
Two years later, she walked with functional electrical stimulation (FES) using technology brought to Edmonton by the society.
“My parents’ goals were always to be as independent as possible,” Mercer said. “They thought this could be something that could get me there.”
At school, they incorporated Mercer into everything. She stood or walked from class to class with help from the FES technology. Mercer participated in the program until she was about 10, when scoliosis forced her to stop. “Because I was injured so young, I don’t know any different,” she said.
She added it has opened her eyes and the eyes of her family members to compassion and awareness of people’s needs. Now she calls St. Paul home.
Following the collision, she was at the University of Alberta Hospital and then the Glenrose Rehabilitation Hospital. She works for the provincial government and is passionate about photography and crafting.
Louise Miller, co-founder and president, is a registered nurse and says “everything has changed” since the organization’s founding. The society has no building and no staff — its entirely volunteer-run. The focus has been on research, FES and other technologies. They brought the first ReWalk exoskeleton to Canada in 2014 and eight people have been trained to stand up and walk using the equipment. “If we hear about anything new, we get it to Edmonton,” Miller said.
The society is funded by casinos every two years and by Craig Simpson, who has hosted the Never Say Never golf tournament for 29 years. When Simpson won the Battle of the Blades with Jamie Salé in 2009, he donated the $100,000 winnings to the organization. The society has also brought RT300s, which has allowed people with stroke, spina bifida, multiple sclerosis and spinal cord injuries to ride a bike. “They’re now getting into the community where the equipment can be inclusive,” Miller said. “It’s in the Saville (Community Sports Centre) and the Y downtown.” One of the biggest challenges is in convincing the community at large to accept new technologies, despite the eagerness of patients to try new things. Psychological benefits can be as big as the physical benefits.
Louise Miller receives her medal from then Lt.-Gov. Donald Ethell during the Alberta Order of Excellence investiture ceremony at Government House in Edmonton on Wednesday, Oct. 20, 2010. Looking people in the eye when clients first stand up is the biggest thing, Miller said. “It has profound impact, that first standing up and looking people in the eye,” she said. “It’s terribly important.”
EPIDURAL STIMULATION IMPLANT AND ITS BENEFITS
This ground-breaking Spinal Cord Injury Treatment is centered around the Epidural Stimulation device. The surgically implanted device sits over the spinal cord protective coating and is connected to the nerve systems where it is able to stimulate locomotor-like activity. Once implanted, the patient learns how to control the device and the resulting limb movements.
Epidural Stimulation can be offered to patients with both incomplete and complete injuries. A combination of the Epidural Stimulation implant with modern Regenerative Therapy undeniably creates the most powerful
treatment package for Spinal Cord Injury survivors.
Our patients have experienced significant improvements with their bodily functions after the Epidural Stimulation surgery. Depending on the location of the injury, these milestones may include the ability to stand, take steps with minimal assistance, improved bowel and bladder control, stabilised blood pressure, muscle mass growth and many more. Read more here
BUILDING ABILITIES FOR LIFE:
NEWS FROM THE GLENROSE REHABILITATION HOSPITAL (GRH)
Spinal Cord Injury Treatment Centre Society (SCITCS): Enhancing the Lives of People with Spinal Cord Injury, for over 30 years, SCITCS has created opportunities for people with a spinal cord injury (SCI) and others.
SCITCS is managed by a volunteer board and sustained by a dedicated group of volunteers who are committed to improving the quality of life of people with a SCI. Their motto, Never Say… “Never”, remains the driving force behind their organization. Over the decades, SCITCS has supported newly injured SCI patients and their families in numerous ways. They host a monthly pizza night on Unit 3B at the Glenrose, served by their board members and volunteers, and provide newly
injured patients with their best-selling book Daring To Live, a SCITCS Never Say…”Never” T-shirt, and a reacher.
A SCITCS board member visits SCI patients on a weekly basis to provide support and education. These meaningful connections have assisted patients and their families through their rehabilitation journey. Established in April 1987, SCITCS has been promoting and supporting applied research; they were fundamental in bringing state-of-the-art technology such as the ReWalk and Functional Electrical Stimulation (FES) devices to Northern Alberta. FES applies small electrical pulses to paralyzed muscles to restore or improve their function and is commonly used for exercise, but also to assist with breathing, grasping, transferring, standing and walking. SCITCS continues to provide FES bikes and equipment to hospitals and community fitness centres to improve access to this technology; they also strive to ensure that patients have access to the electrodes required to use the technology. SCITCS is a strong proponent of continuing education, and over the years they have sponsored various educational opportunities for patients, families, and clinicians all in the effort to enhance the quality of life for people with SCI.
We wish to extend SCITCS our gratitude for their everlasting passion and commitment to research, education, and support for those living with SCI.
Does your business achieves the barrier free code?
Book an accessibility assessment with VAD and identify opportunities to improve inclusion within your business. Who should get an assessment: Any business open to the public. What is an assessment: An audit of your property that evaluates all areas of accessibility.
Why get an assessment done: The assessment highlights areas that are currently accessible, outlines areas of opportunity and offers best practice recommendations. How do I get an assessment: Contact Sam, 780-488-9088 or e-mail email@example.com.
SCITCS Board of Directors 2019 -2020 missing Joel and Sydney
James will continue to use FES cycling on a SCITCS donated FES bike at the Saville Fitness Centre on his discharge from the Glenrose Rehabilitation Hospital. SCITCS will cover the cost of the membership and electrodes for a year.
“My goal is to eat dinner without help on Christmas Eve,” James shared today. Thanks to the Spinal Cord Injury Treatment Centre Society James is getting state of the art treatment on the Xcite machine, the only one in Edmonton.
This device is used to coordinate muscle contractions in the body and are used by both physical and occupational therapy programs at the hospital. With this device patients are able to work on developing strength and movement to complete tasks such as brushing their teeth, or in James’ case, eating on his own. We are so grateful for SCITCS support in making this possible!
SCITCS + an FES bike + Hard Work = success.
May name is Maria Hopf. On June 25, 2018 my world was turned upside down because I fell and broke my back. And I became paralyzed from the chest down. On June 26, 2018 I had my 4 back surgery because of this fall. I was told that I would never walk again and then if I do have any movement in my legs it would not be for about 3 years.
Well of course I was crushed but I did not let that stop be. I spent 3 weeks at the U of A and then I was transferred to the Glenrose Rehabilitation Hospital where I spent 4 months of physical therapy. While I was at the Glenrose I was introduced to the FES bike. This bike was amazing the attached electrodes to my Gluts, Quads and Hamstrings and with the stimulation and motor assisted I was able to peddle the bike. When I was released from the Glenrose I was told that the Don Wheaton YMCA has a FES bike that was generously donated by SCITCS and they will also pay for me a one year membership, and electrodes. I took advantage of this and I have had remarkable progress.
I have been using the FES at the Don Wheaton YMCA for the past year. I have made such good progress that the YMCA found the need to reassess me. They brought in a Physiotherapist and I was reassessed on Saturday November 16, 2019 and they said that I no longer need to have the stimulation on my quads and hamstrings because I am strong enough, which means I am now pedalling the bike on my own. So now I am getting the Stim on my calves, gluts and abs. The Stimulation is now to help me walk on my own. I am walking with braces and a walker and I would not be able to do this if it was not for my hard work and the FES bike at the YMCA.
I am looking forward to see what happens in the next year.
Here is the SCITSC Place Mat!!
Guest Checklist for Accessible Hotel Accommodations
It’s important to call the hotel to confirm acccessibility before making the reservation. Calling the hotel directly will give you the chance to confirm what you’ve read online and to gather more information. Ask questions and raise any concerns you may have about their accessible features.
Not everyone with a disability has the same requirements. We all have different abilities and something one person considers a vital accessible feature might not be vital to someone else. This also applies to the meaning of “accessible” and what hotels interpret as accessible. Before you call the hotel review this checklist and use the questions that pertain to your needs. If a question is not there, the section titled ‘OTHER’ at the end of the list is available for you to write your specific questions in.
If you are using an online site that offer discounts on accommodations, be aware that the person you are talking to is not employed by your hotel. In these cases,it is advisable to contact that specific hotel directly to ask your accessibility questions. This will ensure you are able to have your specific concerns addressed.
Here is a helpful Final reservation checklist
Options for climbing stairs with a wheelchair:
The Barrier-Free Council of the Safety Codes Council, in partnership with Alberta Municipal Affairs has
developed the Barrier-Free Design Guide to provide further interpretation and understanding of accessibility
requirements under section 3.8. of the Alberta Building Code. The Guide also makes recommendations for best
practice design solutions including residential living.
Free Download of the guide here: Barrier – Free Design Guide
Congratulations to Dr. Chester Ho (second from the R) on receiving a prestigious Canadian Institutes of Health Research (CIHR) grant.
Dr Ho will collaborate with other researchers across Canada to develop a Transitions in Care model of health care delivery for people with a spinal cord injury in Alberta and elsewhere.
I was in attendance and had the opportunity to have my photo taken with the Minister of Health, Ginette Petitpas Taylor and the Minister of Natural Resources, Amerjeet Sohi.
Dear friends and supporters of SCI Alberta:
On behalf of the Board of Directors, I am excited to announce that the Board has confirmed the appointment of Olle Lagerquist as the new CEO for Spinal Cord Injury Alberta commencing August 19th.
Olle was most recently the Associate Dean of Industry engagement at NAIT. He Brings skills and experience related to strategic planning and operations, private and public fund development, government and industry liaison, change management,communications, and research. Olle also brings great passion for the field of spinal cord injury.
His academic background includes:
MBA Technology Commercialization – U of A
PhD Neuroscience – U of A
MSc Neuroscience – U of A
BSc Kinesiology – U of Victoria
I know you all join me in welcoming Olle to Spinal Cord Injury Alberta. I will be assisting Olle with his onboarding during his first two weeks and then relinquishing my duties as senior staff member. It has been my sincere honor and pleasure to have served this organization for the past 14 years. I look forward to contributing to the field of SCI in a different capacity, to be announced.
Please don’t hesitate to contact me if you have any questions about the transition.
Teren Clarke, BN, MM (Mgmt)
Chief Executive Officer
Spinal Cord Injury Alberta
400, 11010 – 101 Street
Edmonton, AB T5H 4B9
Main: (780) 424-6312
Personal Fax: (587)410-2563
To empower persons with spinal cord injuries and other physical disabilities to achieve independence and full community participation.
YouTube spreads ‘misleading information’ about experimental stem cell treatments
Health Canada has warned unlicensed clinics are offering unauthorized cell therapies and making unproven, outsized claims that may pose serious risks to people
In an appearance last year on comedian Joe Rogan’s podcast, Mel Gibson raved about how a trip to a Panama stem cell clinic had led to his ailing 92-year-old father’s seemingly superhuman recovery.
Gibson was skeptical at first, he told Rogan. “I’ve heard things about this,” he said he remembered thinking. “You grow a spare mouth on your head.”
That didn’t happen. Instead, after a double dose of stem cells extracted from umbilical cord blood was injected into his father’s hip, he started walking again, Gibson reported. His eyesight improved, his “cognitive power” improved and even his prolapsed heart valve healed, the actor said.
Read more here
Tommy Hilfiger unveils innovative clothing line for people with disabilities
Tommy Adaptive’s mission is to be inclusive and empower people of all abilities to express themselves through fashion – read more here
The SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research Conference is just two months away! The meeting is February 12-13th at the NIH Campus in Bethesda, Maryland. If you haven’t registered yet, please do so here
1.) If you are unable to attend in person, don’t worry, this meeting will be live-streamed at the NIH Videocasting site. The archived recording will be available within a few days of the conference.
2.) The poster session application process is now open! Applications are due by January 15th. Space is limited, so only 48 posters will be selected. The goal of the poster session is to help facilitate collaborations and knowledge transfer, therefore the posters and abstracts are in a non-traditional format. Please read the instructions carefully before applying. The application information and form can be found under the Poster Session tab of the registration site.
3.) If you plan to attend in person, please be sure to book your hotel room soon. A limited number of rooms are reserved at the government rate at the Bethesda Marriott Hotel on Pooks Hill Road. The room block will only be guaranteed until January 4th, so don’t delay! Hotel information is available on the Logistics tab of the conference registration site.
Please continue to check back at the Registration site for the updated meeting agenda, which is available at the Agenda tab of the registration site.
If you have any questions, please feel free to contact members of the NIH Steering Committee, and stay tuned for details on the Breakout Sessions and Lunch and Learn coming soon.
Stem Cell Tourist Sports Massive Growth: Condition Worsens
“Don’t trust anecdotes.” Take it from Jim Gass. Gass, a 66-year-old former chief
legal counsel for Sylvania, then living in Wilmington, Mass., had a stroke in 2009. He could walk on his own and lived independently, but he wanted to recover his flaccid
left arm and weak left leg.
“I began doing research on the internet,” Gass said. He discovered a lot of online testimonials about successful stem cell treatments. These treatments, unproven and
basically experimental, are not available in the U.S. of course, so you have to travel overseas, and pay a lot of money. Gass was especially impressed with the story of
former football star and golfer Jim Brodie, who recovered from a stroke after cell therapy in Russia.
Read More here: Clinical Trials
Dr Jennifer Leo will be the new Director of The Steadward Centre at the University of Alberta.
She has a doctor of philosophy degree (PhD) focused in Adapted Physical Activity from the University of Alberta.
Read More here: Dr. Jennifer Leo</span
Sherwood Park man determined to walk again with help of clinical trial in Miami
At Reyu Paralysis Recovery Centre on Monday, Landon Smith winces as he’s helped through exercises including rows and sit-ups. Every movement is part of his plan to get full movement throughout his body once again.
Smith is confident he will walk again despite being left paralyzed from the waist down after jumping into a foam pit at a Sherwood Park trampoline park last year.
Read More here: Clinical Trials
July 23, 2018
Dear Gala Attendees,
On behalf of The Steadward Centre staff, participants and their families, I want to sincerely thank you for attending The Steadward Centre’s 40th Anniversary Gala on June 21, 2018. We are grateful for your support and we thank all of you who gave generously towards preserving the legacy of The Steadward Centre, and supporting its important and ongoing work within our community.
At The Steadward Centre, we inspire individual achievement in Adapted Physical Activity and Parasport by conducting and applying innovative research, widely sharing expert knowledge and delivering highly successful programs for individuals experiencing disability. Since its inception, The Centre has expanded exponentially, now serving over 1000 individuals living with impairment from the Capital Region each year.
Once again, the gala provided us the opportunity to raise awareness for our programs, celebrate our successes over the past 40 years, and generate funds to sustain a future so we can ensure that every individual who wishes to participate is able to engage in meaningful physical activity and sport. The generous contribution of our attendees will allow us to continue to reach new heights in the years to come.
The 40th Anniversary Gala event has successfully raised over $200,000 for The Steadward Centre. Remarkably, the generosity of the community continues, as many of you have expressed an interest in supporting The Centre further through volunteering, extending financial support, and sharing our story with your friends and colleagues.
If you would like a tour of our facility to see our programs in action, or would like to discuss alternative ways to support the program, please contact Eric Upton at firstname.lastname@example.org or phone 780.492.6277.
If you have any questions regarding your personal donation, please do not hesitate to contact Nancy Cheung at email@example.com or 780.492.7298.
Thank you again for your generosity and support!
The Steadward Centre, University of Alberta
Stem Cells Therapy for Spinal Cord Injury
Spinal cord injury (SCI), a serious public health issue, most likely occurs in previously healthy young adults. Current therapeutic strategies for SCI includes surgical decompression and pharmacotherapy, however, there is still no gold standard for the treatment of this devastating condition. Inefficiency and adverse effects of standard therapy indicate that novel therapeutic strategies are required. Because of their neuroregenerative and neuroprotective properties, stem cells are a promising tool for the treatment of SCI. Read More
How do you separate scientifically sound stem cell therapies from scams?
For patients who’ve run out of other options, experimental, unproven therapies like stem cell treatments offer new hope. But how do you sort the scientifically legitimate from the dangerous?
Regenerative medicine is a controversial field, still in its infancy. There are academic researchers and major biotech companies testing key treatments in high-profile, vetted clinical trials — but there are also fringe clinics promising stem cell injections that can cure everything from Alzheimer’s disease to cerebral palsy, though they have no evidence to back up those claims.
Read more here
SCITCS has provided a treadmill to the REYu Paralysis Recovery Centre:
PHYSICAL ACTIVITY GUIDELINES for Adults with Spinal Cord Injury
These guidelines are appropriate for all healthy adults with chronic spinal cord injury, traumatic or non-traumatic, including tetraplegia and paraplegia, irrespective of gender, race, ethnicity or socio-economic status. Adults are encouraged to participate in a variety of physical activities that are enjoyable and safe.
You should try to be active throughout the day, and in a variety of ways, in addition to your usual activities of daily living.
If you are newly injured, are pregnant, prone to autonomic dysreflexia, or have other medical conditions, you should talk to your health professional to find out what types and amount of physical activity are right for you. A health professional might include a doctor, a physiotherapist, or a qualified exercise professional.
As a safe progression towards meeting the guidelines it is appropriate to start with smaller amounts of physical activity and gradually increase how long, how often, and how hard you engage in physical activity.
Read more here