Please consult the list below or the ALS Canada Equipment Catalogue for more information about which pieces of equipment are available through our program.
Mobility assistance and lifts
Walkers
Wheelchairs
Scooters
Ramps
Patient transfer lifts
Ceiling track systems
Bedroom and other equipment
Hospital beds
Mattresses and pressure relief systems
Lift chairs
Bathroom assistance
Commodes
Bath lifts
Benches
Please note that the ALS Canada Equipment Program is not a trial program. This means that we do not loan equipment for the purpose of testing what devices are best for you. Instead, we facilitate loans or funding assistance once someone’s equipment needs have been assessed and recommended by a professional.
Today, more is known about this relentlessly progressive motor neuron disease which causes paralysis and leads to the death of approximately 1,000 people in Canada each year. And while the prognosis of ALS is variable and its progression difficult to predict, (i) we know that it can move with startling swiftness – leaving a very narrow window of time to slow it down, often further compressed by delayed diagnosis.
In this Toolkit you will find the following resources:
Template Meeting Request: This template letter can be used to request a meeting with your federal or provincial elected officials. Tips for how to find the contact information for your elected official are included.
ALS Fact Sheet: Which you can refer to for key facts and figures when speaking and can be shared with elected officials.
Sample Meeting Flow: This document is a guide to help you navigate any meetings with elected officials. This is an internal document and should not be shared.
Eversana “How to Tell Your Story”: This guide, developed by our partners at Eversana, helps you develop and tell your own story.
The Time is Now Meeting Deck (Provincial): This presentation can be used during any meetings with Provincial elected officials to explain the issue of access to therapies. It can be sent to the elected official as background information.
The Time is Now Meeting Deck (Federal): This presentation can be used during any meetings with Federal elected officials to explain the issue of access to therapies. It can be sent to the elected official as background information.
Report Back Form: Use this form to share with ALS Canada how your meeting went and any other important information.
A resource that supports and empowers advocacy efforts aimed at improving the lives of people living with ALS (Amyotrophic Lateral Sclerosis).
Donation type (select one):
• General donation
• In memory of…
• In honour of…
ALS Canada’s work is empowered by community. Discover how, in 2023, our efforts to support the ALS community ensured that people affected by ALS received the highest standard of care possible, and helped loved ones pursue their education goals.
It takes a community: Supporting people with ALS
Living with ALS can have many challenges, but with the support of the community, people living with the disease can navigate their journey with greater ease. ALS Canada’s Community Leads (CLs) in Ontario play an important role by offering individualized support to people diagnosed with ALS and their circle of support, which can include family members and health care professionals.
“Our support is individualized from person to person based on the progression of the disease, symptoms, and resources and supports are available in their community,” says Kim Barry, Vice-President of Community Services at ALS Canada. “There’s no waitlist; when someone is diagnosed, they are referred to our Community Leads, who are specialized in supporting someone living with ALS. They are there to help answer questions, support symptom management, and evaluate and facilitate the medical equipment needed now and in the future.”
ALS affects more than the person living with the disease. It’s common for a spouse or child to take on the role of primary caregiver, who will also have questions of their own about how to best assist their family member. In addition to providing information and resources to the caregiver, it’s not uncommon for a CL to support at least six additional people within a person’s care network who will have a role to aid in some way.
Navigating ALS becomes significantly less daunting for people affected by the disease, especially when they have access to someone who has been through the journey. This proactive approach not only offers a lifeline but also opens up an opportunity to maintain an important level of quality of life, safety, and independence, bringing a sense of relief and comfort.
“Although an ALS diagnosis can be devastating, it’s important to know that there is still life to enjoy,” says Kim. An example Kim shares of a recent client experience, “When John was diagnosed, that same day we were connected and scheduled a time to meet with him to discuss his initial questions. In the following weeks, the Community Lead worked closely with him and his wife to determine the care they wanted and when they wanted it. ALS is different for everyone; each day can bring a new complexity that can be easily managed with support, whether transitioning to a new mobility device, assistance with paperwork for transportation, or a referral to an allied health professional in the community. Ultimately, it’s about providing help and support, so the family can stay together at home.”
Giving back for a brighter future: recognizing resilience with the ALS Canada Kevin Daly Bursary
No one better understands the adversities while navigating a loved one’s ALS diagnosis than the ALS community themselves. The profound impact of the disease creates hurdles when thinking about achieving goals and aspirations created prior to a diagnosis. Life with ALS is different for everyone, but the mark it makes on each person drives a sense of compassion and desire to support others in the community.
In 2023, in partnership with the friends and colleagues of ALS community member Kevin Daly, ALS Canada sought to support young people navigating the impact of ALS. In celebration of Kevin, the ALS Canada Kevin Daly Bursary was created – inspired by his courage and dedication to other ALS families. The $2,500 bursary is awarded annually to post-secondary students across Canada whose lives have been touched by ALS. “Empowering students affected by ALS with this bursary not only eases their financial burdens but also sends a powerful message of a community connected and an understanding of the realities children face when a family has been impacted by ALS,” says Tammy Moore, CEO, ALS Canada.
The 2023 ALS Canada Kevin Daly Bursary was awarded to three students across Canada – Catherine Brassard, Daniella D’Amici, and Sarah Jacob – providing dual-purpose support through financial relief and community connection. “Day to day, it can be stressful, so having an external form of security makes a huge difference to me,” says D’Amici. “As well as connecting with the ALS Canada team and having them understand what I’m experiencing – that has added a sense of community that has been really special.”
“Receiving this bursary represents a source of comfort in a particularly difficult period, as it eases an emotional and financial burden. Having proof that my difficulties are recognized and supported encourages me to cultivate my resilience,” Brassard says. Supporting young adults navigating not only their goals for further education but also the harsh reality of ALS is critical to the future of ALS. ALS Canada and the Daly family congratulate the 2023 recipients for their resilience and academic dedication and look forward to supporting more students in the years to come.
Learn more about our work in 2023 by exploring our latest annual report.
ALS Canada’s work is empowered by community. Discover how, in 2023, our work within the ALS community helped people affected by the disease feel empowered and informed to make decisions and engage in advocacy efforts.
Empowering advocacy with the ALS Canada Canadian ALS Learning Institute
The landscape of ALS research is ever-changing as researchers continue to make developments. However, research is just half of the journey – ensuring effective treatments are understood and accessible is critical to supporting Canadians living with ALS, and nobody understands this better than those affected by the disease right now.
ALS Canada seeks to empower Canadians affected by ALS with the right knowledge, tools, and support to navigate its current realities and advocate effectively for change. That’s why the Canadian ALS Learning Institute (CALI) was created – a small-group learning experience for people affected by the disease to better understand the Canadian ALS landscape, clinical research, therapy development, and how to advocate effectively.
Since the CALI launched in 2021, graduates of the program who become ALS Canada Community Ambassadors, have shown power in their advocacy efforts, actively putting their learnings into action. Jennifer Hutton, graduate of the 2022 CALI cohort, jumped into advocacy straight away following her husband’s ALS diagnosis in 2021. “I had the power and passion to advocate but I felt that I lacked the knowledge needed to fully put myself out there,” said Hutton, leading her to reach out to ALS Canada and discovering the CALI.
“The CALI outlined the current state of ALS from all avenues including gaps in healthcare, research, drug development and support. I’ve been able to use that knowledge when speaking with and advocating on a much broader scale than just my personal story.” Since graduating from the CALI and becoming an ALS Canada Community Ambassador, Jennifer has been able to engage various government officials in her home province, including Nova Scotia’s Premier and provincial health minister, as well as create a relationship and consistent dialogue with the Ministry of Health and Wellness support staff.
“[Participating in the CALI] you gain an entire community of people that will help support you and mentor you through your journey in not only advocacy, but ALS in general,” says Hutton. As she continues forward on her own advocacy journey, backed by the CALI community, she leaves some words of advice for anyone affected by ALS interested in beginning theirs, “Be patient. It’s not easy, but it’s worth it. Lean on the community for support and keep going.”
Learn more about our work in 2023 by exploring our latest annual report.
ALS Society of Canada rallying the community together to bring awareness to nearly 4,000 Canadians living with ALS and their families.
Toronto, Ontario – ALS Awareness Month kicks off June 1, as the ALS Society of Canada (ALS Canada) brings the community together to build recognition of what amyotrophic lateral sclerosis (ALS) is and the impact the relentless disease has on nearly 4,000 Canadians living with the disease and their families.
“An ALS diagnosis can be devastating. What we want people to know is – you are not alone,” says Tammy Moore, CEO, ALS Canada. “ALS Canada’s mission is to work with the ALS community to improve the lives of Canadians affected by ALS through advancing research, care, advocacy, and information. We realize that with each person diagnosed, there are roughly six additional people we touch within their circle of care. It’s important that we’re here, united together in our support. At ALS Canada, we do this by empowering people living with ALS to navigate the current realities of the disease, be informed consumers of ALS information, and advocate effectively for change. We also invest in high-quality research, that will fuel scientific discovery and hopefully lead to more approved therapies and improved quality of life.”
ALS is a neuromuscular disease that progressively paralyzes people because the brain can no longer communicate with the muscles of the body that we are typically able to move at will. As a result, people with ALS often face a swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us. In addition to advancing research, care, advocacy and information, ALS Canada provides community-based services, including direct support provided by the ALS Canada Equipment Program and ALS Canada Community Leads to Ontario families living with ALS.
This June, help us recognize ALS Awareness Month by getting involved with ALS Canada in a variety of ways:
Purple for Awareness. Keep your eyes open for lighting and illuminations of local landmarks in your area as they go purple to recognize this important month. Check out the CN Tower, Nathan Phillips Square, and Niagara Falls throughout June. Take action! Snap a picture and post on your social media channels and tag @ALSCanada to show your support.
Lou Gehrig Day. Tune in on June 2 as Major League Baseball (MLB) recognizes Lou Gehrig Day, honouring the baseball great for his legacy and the awareness created for ALS around the world. The Blue Jays will mark the day at their home game.
Global ALS Awareness Day. On Global ALS Awareness Day (June 21), ALS Canada will host a live webinar featuring the Chairs of the Canadian ALS Research Network (CALS) and provide an overview of the Top 10 exciting things about our understanding of ALS in 2024 presented by Dr. David Taylor, Vice-President, Research and Strategic Partnerships, ALS Canada. Register for free.
Get Walk Ready! Get connected with the ALS community by joining the ALS Canada Walk to End ALS; for a complete list of dates and locations, visit walktoendals.ca.
Become a Monthly Donor. During the month of June, sign up for our Circle of Hope Monthly Giving Program and your monthly gift will be matched for three months thanks to our generous matching donor. Sign up today!
Share your story and stay connected. Whether you want to share your journey or keep a loved one’s memory alive, we encourage you to follow ALS Canada on social media at @ALSCanada on Facebook, Twitter, and Instagram. Let us know what #aWorldFreeOfALS means to you.
About ALS and the ALS Society of Canada
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.
The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable, and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.
Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a future without ALS.
Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook.
For more information
ALS Society of Canada media@als.ca
437-703-5402
It’s been 15 years since my cousin Doug, who was like a big brother to me, was diagnosed with ALS. Our options were limited then with only one approved therapy available. We didn’t know what to do and who to turn to as we navigated the bend in the road. Today, when I reflect on developments in the ALS community, I am in awe, and most of all grateful, to the donors who continue to support our mission at ALS Canada.
As the needs of the community change, we as an organization have evolved to meet these needs. I want to share with you a few of the ways your donations help shift the reality of ALS from dying to living through research and early diagnosis, supporting families in their navigation, and advocating for meaningful policy changes.
Supporting early diagnosis
Earlier diagnosis of ALS is critical to better patient and clinical trial outcomes. A new project initiated by ALS Canada, ReferALS, seeks to reduce the time to receive an ALS diagnosis in Canada. This will be done through a set of tools and engagement strategies designed to accelerate patient referrals to neurologists specializing in ALS at Canadian ALS clinics.
ALS Canada continues to be the only source of dedicated ALS research funding across Canada. This means your gift allows ALS Canada funded researchers to continue striving to better understand ALS, and identify treatments that will alter the course of the disease.
CAPTURE ALS, a national research platform made possible with the support of ALS Canada’s donors, recruited its first participant earlier this year. The project has multiple sites across Canada engaging fundamental and clinical researchers in the hunt for answers to why ALS is different in each person. This is the crucial question that will help unlock new therapeutic targets, treatment options and lead us closer to personalized medicine.
ALS Canada engages with officials in the federal and Ontario governments to represent the voices and experiences of people living with ALS. With your help, ALS Canada continues to advocate for policy changes that will have a meaningful impact through equitable, timely, and affordable access to therapies, improved home and community care, and research funding.
Our Time is Now position paper was developed with stakeholders from the ALS ecosystem and we see how Health Canada, pCPA, and companies have responded. Your gifts enable ALS Canada to continue advocating to improve access to Health Canada approved therapies.
This past June, it was announced that Canada is the first country in the world to give the regulatory green light to the drug ALBRIOZA as a treatment for ALS. Health Canada’s approval is a positive step forward in the available treatment options for people living with ALS, and we are now working to make sure that every Canadian will have equitable and timely access within their province or territory.
Strengthening knowledge exchange and community support
Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, ALS Canada empowers Canadians affected by the disease to navigate its current realities, be informed consumers of ALS information, and advocate effectively for change.
ALS Canada’s Canadian ALS Learning Institute (CALI) has cultivated incredibly engaged and empowered Community Ambassadors. The CALI program was launched in 2021 to inform people affected by ALS from across Canada about the Canadian ALS landscape, clinical research, and therapy development. Graduates of the CALI 2021 program continue to meet regularly, with nearly all participants still actively contributing to our advocacy and engagement efforts with government and industry. The second cohort was selected through an application process to participate in a series of learning modules this fall.
We want to see the reality of ALS change from dying to living with ALS. The current reality necessitates that families have access to a Community Lead in their region who can help them navigate the Ontario health system and access equipment at no cost to them. Over the course of a person’s disease progression, they could transition from needing the support of a walker, to needing a highly customized, powered wheelchair that can support a person living with a more advanced state of the disease. Access to the right equipment and assistive devices can help people maintain independence, dignity, and safety. The ALS Canada Equipment Program is entirely reliant on donor funding and your generosity sustains people’s quality of life.
I want to thank you for taking the time to learn about what we are doing to meet the urgent needs of the ALS community. The holidays are a time to come together, and I hope you will take the opportunity to support families grappling with ALS during this festive but often difficult time.
Toronto – The ALS Society of Canada (ALS Canada) joins the global ALS community in recognizing June as ALS Awareness Month. More than 3,000 Canadians live with amyotrophic lateral sclerosis (ALS), a neuromuscular disease that paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. People with ALS face a progressive and devastatingly swift decline in the ability to talk, walk, eat, swallow, and eventually breathe. There is currently no cure for the disease that carries a lifetime risk of 1 in 300 for each of us.
Increasingly, there is more hope for people given an ALS diagnosis. There are two disease-modifying therapies available in Canada and at least two more going through the Health Canada approval and reimbursement process, but there is much work to be done to ensure equitable, affordable, and timely access to more available treatment options for all Canadians living with ALS. With an acceleration in therapeutic development, clinical trials are an important aspect of access, ALS Canada asks you to raise your hand in support of continuing to build Canada as a primary destination for ALS clinical trials.
“ALS takes people far too quickly. With no cure, the ALS community has no choice but to measure time not by months or years but by loss – loss of function and loss of life,” said Tammy Moore, CEO, ALS Canada. “But progress has been made, and there are more opportunities for therapeutic development than ever before. That is why we’re asking the public to come together and share their support for strengthening Canada as home to the type of clinical research needed to develop new treatment options for people living with ALS. This demonstration of support for the community will make a difference as we advocate to industry and make investments to build capacity across Canada.”
For people affected by ALS, clinical trials in Canada mean hope and the chance to participate in potentially cutting-edge therapies. Building capacity nationwide will enhance opportunities for all Canadians to have equitable access to the most promising experimental and proven ALS treatments available. To support this, ALS Canada will continue to:
Establish early relationships with industry who are invested in development of new treatments through clinical trials and strive to continually keep Canada on every company’s radar;
Provide administrative support for the Canadian ALS Research Network (CALS) as a coordinated group of ALS clinics across Canada to ensure readiness for clinical trials;
Build strategic relationships and foster collaboration amongst researchers, clinicians, and industry;
Build clinical capacity and clinical trial readiness by funding research and grants across the country through the ALS Canada Research Program, including Clinical Research Fellowships;
Be a source of information for Canadians about drug development through to access of approved therapies, to empower people to make informed decisions and advocate for access to treatments.
Show your support by adding your name (English only) to the growing list of Canadians who believe in more opportunities to participate in ALS research and desire to see Canada as a “must-have” destination for industry in their future trials.
To learn more about ALS clinical trials in Canada and what it means to take part in ALS research, tune in to a live webinar on Global ALS Awareness Day on June 21 at 12pm ET. Register now!
Throughout the month of June, ALS Canada will also host the Walk to End ALS in more than 20 locations across Ontario and virtually for those who cannot attend an in-person event. The ALS Canada Walk to End ALS is the largest volunteer-led fundraiser for the organization, uniting Canadians in their desire to put an end to ALS. Proceeds from the Walk to End ALS enable ALS Canada to provide services and support for people living with ALS in Ontario, and to ensure a strong pipeline of funding for the best of Canadian ALS research. For more information visit walktoendals.ca.
In addition, ALS Canada will recognize Lou Gehrig Day on June 2, alongside Major League Baseball and the Toronto Blue Jays who are set to play the Chicago White Sox in Toronto.
“More than 1,000 Canadians are diagnosed with ALS each year – that’s 2 to 3 people a day who are delivered this devastating news that will tragically take their life and have an enduring impact on their family,” said Tammy. “We hope to build awareness for this disease throughout June and beyond to help us raise critical funds to allow us to invest in vital research and advocate for people living with ALS and their families.”
About ALS and the ALS Society of Canada
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. More than 3,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.
The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity and advocating for equitable, affordable and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.
Founded in 1977, we are a registered charity that receives no core government funding – our work is powered by generous donors who share our vision of a future without ALS.
Join the conversation and connect with the ALS community online. Find ALS Canada on Twitter, Instagram, or like our page on Facebook.
For more information
ALS Society of Canada media@als.ca
437-703-5440
Toronto, ON – The in-home support that the ALS Society of Canada provides to people living with ALS is highly valued by the community it serves and is something it had to evolve after the pandemic made physical distancing a public health necessity. And to help with the work needed to effect change, earlier this year, the ALS Society of Canada learned that it had received a $73,400 Resilient Communities Fund grant from the Ontario Trillium Foundation (OTF) that will impact its services across the province. The Resilient Communities Fund program was developed by OTF to help the non-profit sector to rebuild and recover from the impact of COVID-19.
“I am pleased to hear about this funding to the ALS Society of Canada, which provides hundreds of Ontarians living with ALS the crucial supports that they desperately need. The COVID-19 pandemic has forced us to look for innovative ways to provide healthcare services, and this funding will ensure that these services are easily accessible for our most vulnerable.” – Chris Glover, MPP for Spadina-Fort York
The year-long grant is helping with the costs of designing a hybrid support and services model informed by the lessons learned through the pandemic, which will enable the ALS Society of Canada to continue to fill gaps in the healthcare system and provide essential supports and services to some of Ontario’s most vulnerable people. In addition, it will help build better organizational infrastructure and help with the costs of providing training for staff and volunteers. The new service delivery model means ALS Canada staff can sustainability provide a blend of in-person and virtual services, leveraging the best of both service formats.
“By adapting the delivery of programs and services to address the evolving reality of COVID-19, we are in a better position to meet the needs of the community,” said Kim Barry, Director, Community Services at ALS Canada. “While we do not provide direct care, the supports we provide help to delay admission to long-term care, reduce unnecessary emergency room visits, and enhance the well-being of the ALS community, all of which are vital to helping people cope with the realities and devastation of an ALS diagnosis.”
ALS is a terminal disease: 80 per cent of people die within two to five years of their diagnosis while facing progressive paralysis, and each person’s progression and needs vary tremendously, making personalized practical and emotional support a critical need. After the COVID-19 pandemic began, it quickly pivoted to a service model that included virtual and remote services in place of the in-person visits and support groups offered to approximately 1,000 families currently living with an ALS diagnosis in Ontario.
In addition to offering services and support to people and families living with ALS within Ontario, ALS Canada works nationally to invest in leading-edge ALS research and engages federally and provincially within Ontario to advocate for system change that will create a future without ALS.
The Ontario Trillium Foundation (OTF) is an agency of the Government of Ontario, and one of Canada’s leading granting foundations. Last year, nearly $112M was invested into 1,384 community projects and partnerships to build healthy and vibrant communities and strengthen the impact of Ontario’s non-profit sector. In 2020/21, OTF supported Ontario’s economic recovery by helping non-profit organizations rebuild and recover from the impacts of COVID-19. Visit otf.ca to learn more.
What is ALS?
ALS, which stands for amyotrophic lateral sclerosis, is a brutal and unforgiving disease with no cure. It gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Approximately 1,000 Canadians are diagnosed with ALS each year and 80 per cent of them die within two to five years.
About the ALS Society of Canada
Founded in 1977, the ALS Society of Canada (ALS Canada) works with the ALS community to improve the lives of people affected by ALS through support, advocacy and investment in research for a future without ALS. We are a registered charity that receives no core government funding – all of our services and research are funded through the generosity of our donors. Through the ALS Canada Research Program, we fund peer-reviewed research grants, foster collaboration and build capacity within Canada’s ALS research community and participate in new areas of research where we are well-positioned to have an impact. Within Ontario, ALS Canada has a role similar to that of the provincial ALS societies providing services and support to help meet the needs of people living with ALS. Through advocacy federally and provincially within Ontario, ALS Canada gives voice to the collective experience of people living with ALS to help drive program and system changes for the ALS community. www.als.ca
For someone caring for a loved one living with ALS
Looking after a family member or close friend who is living with ALS is a precious act of love and devotion. It is often a full-time commitment that demands a lot of physical and emotional energy, making it challenging to maintain your own health and well-being. If you know someone in this role, the holiday season is a perfect time to say, “here’s something to help take care of you.”
Many of you from our ALS caregiving community recently shared some gift ideas you thought would be most appreciated by others providing care for a loved one. Keep in mind that it may be hard for caregivers to ask for what they need. They often prioritize the needs of their loved one over their own. They can even feel guilty attending to their own needs, putting self-care at the bottom of their list.
Don’t be afraid to reach out and spread your love around! If some of the suggestions below seem like a good idea, chances are, they will be received with gratitude and appreciation.
Here are some gift ideas to offer a caregiver you care about:
Time for yourself
The number one request from caregivers was some time to re-charge. As the disease progresses, someone living with ALS requires an increasing level of support managing even the most basic daily tasks, such as eating, getting dressed, and showering. Giving a caregiver the time to take a break allows them to return to the role feeling re-energized and better able to cope. A day off might provide the respite someone needs, but even giving the gift of a short break can be helpful.
Debbie Henderson appreciated a few hours away from her role as caregiver so that she could go shopping or out for a meal with a friend. “I also used the time off to attend an ALS support group for caregivers. I got so much from the others in the group. It picked me up when I was feeling down.”
Relaxation for your body
Caring for someone with ALS is physically taxing. As a loved one gradually loses the ability to move, the physical demands of the caregiver role increase. Dealing with equipment like wheelchairs and specialized assistive devices for personal care can be hard on the muscles.
Many of you emphasized the importance of physical therapies such as massage, reiki, float pods, spa treatments like manicures and pedicures to help soothe sore muscles and rejuvenate the body. Offering a gift certificate for any of these services can provide temporary relief from pain, stiffness, or fatigue.
Jessica Gustafson also included yoga as a way to de-stress. “I had the gift of a yoga class once a week, coupled with a reliable person to come and stay with my hubby. I think it got me through some of the darkest times and also, it felt so good for my tired and stressed body. Super lovely and thoughtful idea.”
Visits for your loved one
ALS is such a devastating disease. Many people become uncomfortable with the physical effects of the disease when it happens to someone they know, even when it is a close friend or relative. When people turn away, it can cause tremendous pain.
Offering a friendly visit can be a wonderful gift for the caregiver and the person living with ALS. “My dad was such a social and friendly guy,” says Andrea Fairweather. “When he developed ALS, people stopped visiting. It broke my heart that people didn’t know what to say, so they stayed away completely. It would have been so much easier for me with regular visitors.”
If you’re not sure whether a visit would be helpful or not, you can always ask. Caregivers will let you know if they prefer privacy, or if it is too much for the person being cared for to receive a visit on any given day, or at any time during the progression of the disease.
Taking care of chores
Finally, think of a chore you can take on that might relieve some of the work of caregiving. It doesn’t have to be something big. A gift card offering to do the dishes, mow the lawn, clean the house, pick up groceries, walk the dog, or cook a meal is something many caregivers would appreciate.
Use your imagination. The possibilities are endless and the potential for making someone feel appreciated when they are giving so much of themselves is a gift in itself!
Caring for a loved one with ALS can bring out some of the best qualities in a person ‒ commitment, compassion, and resilience among them. At the same time, it is a stressful, emotionally draining, and sometimes overwhelming role. Being a caregiver to someone with ALS means new responsibilities and considerations as well as unexpected challenges including how to talk about the disease with friends and family.
There is no single approach to communicating the news of an ALS diagnosis, providing updates, or requesting support. However, many caregivers would agree that finding reliable information about the disease and its symptoms is an important first step. Understanding what ALS is and how it affects your loved one who has been diagnosed can help everyone adjust to the reality of the disease and answer questions from friends and family who, more often than not, will know very little about ALS.
Shirley Ma, whose husband, Henry, passed away from ALS this past October, says it was important for her to acquire knowledge and to come to terms with the disease. Her advice comes from a place of personal reflection and compassion for others. She says, “Try to educate yourself about ALS. Learn as much as you can. Accept the diagnosis and prognosis. Then you can learn to live with it and talk openly with the people around you.”
Shirley admits, however, that knowing how much detail to share and how much to withhold can be tricky. People often have a very hard time hearing what you have to say, which is one reason some caregivers may choose to withhold information or to paint the situation in a more positive light. As Henry’s symptoms worsened, Shirley remembers the challenge of speaking about his decision to accept a G-tube inserted through his stomach to deliver nutrition once he could no longer swallow. “Some folks would tell me he would get better and eat using his mouth again. They had trouble accepting the reality of Henry’s condition so I felt there was no point in sharing what made them too uncomfortable.”
Lianne Johnston, ALS Canada Regional Manager for the Champlain Region, says she often sees some family members or friends withdraw altogether because they are too uncomfortable. “People can be so afraid to say the wrong thing that they say nothing, or they avoid you.” This can be particularly hurtful when it happens with a close connection or relative. On the other hand, says Lianne, “it is sometimes the people you least expect who come to the table, who stay in touch and who offer their support.” She believes there is no way to anticipate people’s reactions, especially when the subject is one as difficult to talk about as an incurable disease like ALS, so it is important to remember that when someone withdraws it is often because they are unable to confront their own fears.
No matter what the response on the other end of the conversation, communicating with others when you are dealing with your own pain is hard. “Too many phone calls can be draining,” says Shirley, so it is important to remember that you don’t have to pick up the phone every time it rings. Receiving too many visitors or repeating the story to many different people is also exhausting for caregivers and their loved ones with ALS. Lianne suggests using technology as a means to relay information, for example through Facebook or a group email. That way, she says, “you avoid many of the conversations and you can be in control of the information you share and how people communicate with you.”
Remembering to prioritize your own needs during a time of great stress is important. Shirley believes “you have to learn self-care so you have the strength and well-being to care for a loved one who comes to depend totally on you.” Melissa Van Tuyl, ALS Canada Regional Manager for Hamilton, Niagara & Haldimand Brant, shares the example of a caregiver running into a friend at the grocery store who asks how her husband with ALS is doing. Oftentimes, says Melissa, the caregiver will just put on a “brave face” rather than explaining the situation. On the other hand, the question from the friend might be just the opportunity the caregiver needs to “get things off her chest. It’s really up to you what you say, whatever makes you comfortable.”
When supporting caregivers, Melissa tries to remind them that “friends and family often want to help but don’t always know how.” Learning how to communicate your needs can be tremendously helpful. During Henry’s last weeks in hospice, Shirley was with him the whole time. She remembers how much she appreciated having one person coordinate a personal care team to bring home-cooked meals and to offer her a few hours of respite. Having one of her friends as a “point person” to help with scheduling meant that Shirley didn’t have to respond to each request individually. Looking back, she is grateful for each act of kindness she received and happy to share her story in the hope that her experience will encourage other men and women caring for a loved one with ALS to face the challenges that come their way.
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hard time hearing what you have to say, which is one reason some caregivers may choose to withhold information or to paint the situation in a more positive light. As Henry’s symptoms worsened, Shirley remembers the challenge of speaking about his decision to accept a G-tube inserted through his stomach to deliver nutrition once he could no longer swallow. “Some folks would tell me he would get better and eat using his mouth again. They had trouble accepting the reality of Henry’s condition so I felt there was no point in sharing what made them too uncomfortable.”