Nurses and Nurse Practitioners of BC
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Policy & Advocacy: Health Awareness / Nursing Leadership



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June is ALS Awareness Month!

The ALS Society of British Columbia provides direct support to ALS patients, along with their families and caregivers, to ensure the best quality of life possible while living with ALS. They achieve this through their equipment loan program and other direct supports, fundraising for services and research, and increasing public awareness and understanding of ALS.

To help address the needs of patients and promote quality of life for people affected by ALS, the ALS Society of BC works and collaborates with other organizations including: ALS Centre at GF Strong Clinic, Provincial Respiratory Outreach Program, Communication Assistance for Youths and Adults, and the BC Association for Individualized Technology and Supports for People with Disabilities (BCITS).

ALS Canada connects every day with people who are living with ALS and supports them in their journey. They see firsthand the tremendous burden of the disease – physically, psychologically and financially. The realities of ALS are harsh – and they reinforce the need for better government support and access within the healthcare system.

ALS Canada engages with federal and provincial governments to represent the voices and experiences of people living with ALS and to advocate for policy changes and funding that will have a meaningful impact on people living with ALS today and in the future. They also engage at the local level with health care providers and agencies to help the people we support access services and other resources that can lessen the burden of living with ALS.

What is ALS?

ALS, also known as Lou Gehrig’s disease, is a group of rare neurological diseases that are progressive and usually fatal. ALS causes gradual degeneration of the motor neurons responsible for controlling voluntary muscle movement. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.

Motor neurons are nerve cells that extend from the brain to the spinal cord and to muscles throughout the body. These motor neurons initiate and provide vital communication links between the brain and the voluntary muscles. Messages from motor neurons in the brain (called upper motor neurons) are transmitted to motor neurons in the spinal cord and to motor nuclei of brain (called lower motor neurons) and from the spinal cord and motor nuclei of brain to a particular muscle or muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to fasciculate, and atrophy. Eventually, the brain loses its ability to initiate and control voluntary movements.

Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe.

Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. However, about 10% of people with ALS survive for 10 or more years.

Join us at the Walk to End ALS in a community near you!

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Ellen Mahoney, RN

Our Nurse to Know is Ellen Mahoney; she is the Volunteer Client Services Coordinator for the Victoria Chapter of the Amyotrophic Lateral Sclerosis (ALS) Society of BC. Ellen embraces opportunities to enhance awareness of ALS to health care professionals and is an inspiration for others to volunteer.

Ellen has been involved with ALS since ~1986 when she was a student completing her BSN. Because of her work on a student projects focused on ALS, one with the Victoria Support Group, she chose to stay involved and has made a difference!

Ellen notes that, in a year, they normally see 8-12 new clients with ALS, but between mid-April 2018 and mid-April 2019, she met 31 new clients and families impacted by ALS. It is hoped that this is a ‘blip’ in their region, as the overall numbers are unchanged in BC and Canada.

Ellen infuses passion, creativity, energy and fun into everything she does. Drawing on her extensive clinical background in health care, she brings a compassionate and genuine approach. Born in Flin Flon, Manitoba, Ellen is a Registered Nurse with a master’s degree in Leadership and Training from the Royal Roads University. She is a past President of the Victoria Chapter.

For nearly two decades, she has shared her expertise as the Volunteer Client Services Coordinator by visiting newly diagnosed clients and their families in the South Island at the most difficult period of their journey providing compassion, support, and understanding.

During the monthly support group meetings, she leads discussions and invites presenters with a focus on “Living with ALS”. Committed to creating awareness of ALS and fundraising, Ellen is a past Chairperson of the Annual Flower Day held in June and a supporter of the annual Walk to End ALS. She is a member of both the Federation Client Services Committee and the Provincial Patient Services Committee. She speaks locally and nationally about living with ALS with health care professionals, ALS groups, and community groups.

In 2009, Ellen was presented the Roy Slater Volunteer award and in 2010, she received the Myra Rosenfeld Volunteer award in recognition of her volunteer contribution to the ALS community of Canada. In 2012, Ellen received the Queen’s Diamond Jubilee Medal and received the Governor General’s Caring Community Award. ALS Canada presented Ellen the Lifetime Achievement Award for her 30 plus years of volunteer service dedicated to ALS, and ALS BC awarded Ellen an Honourary Membership.

Currently Ellen is a Nurse Educator in the Nursing Program (BSN) in Victoria. She has been married to her high school sweetheart, Glenn for over 40 years.
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Where do you work?

I graduated as Registered Nurse 36 years ago have been fortunate to have had several challenging and rewarding opportunities at the bedside, in administration managing programs, leading projects and educating nurses. Currently I am in my 10th year as a nurse educator at Camosun College in the BSN program.

For over 30 years, I have volunteered with the ALS Society of BC supporting patients and their families in Southern Vancouver Island through their journey as they live with ALS.
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What do you love most about nursing?

What I love about nursing are the exciting opportunities for nurses to make a difference in their communities and globally supporting the planet. Today while they have so many career choices before them, they choose to be nurses. My role as a nurse educator encourages nursing students to identify different areas where nurses can choose to work; at last count, the students identified 95 different potential workplaces. I love the opportunities available to the profession.
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Where do you see nursing in the next five years?

Every day I am inspired by the nursing students that I learn with. In the next five years, I believe nursing will be leading the way transforming the health care system by leading community primary care team-based care, embracing technology, and by partnering with patients and families. It will take everyone working together - academia, the government, and health authorities - to ensure nurses have the environments to the meet the health care needs of the communities they serve.
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Because of nursing...

I have been fortunate to meet nurses and other health care professionals throughout the country who share the same passion and love that I have for nursing.