While travel can present unique challenges for people with ALS, a comfortable travel experience is possible with planning and patience. This fact sheet offers tips for planning a trip while living with ALS, whether it is a local day trip or a longer excursion including air travel. These tips may be helpful for things like running errands or visiting a specialist
in another city, too.

It is important for people with ALS to feel closeness and connection with their intimate partners, and to experience healthy sexuality, whether with a partner or solo. While ALS does not affect sexual functioning directly, the disease progression affects mobility, mood, strength, and breathing, so creativity and experimentation may be required to
achieve satisfying sexual intimacy.

ALS is a progressive and fatal neurodegenerative disease that does not yet have a cure. When caring for you, your healthcare team will strive to maximize quality of life from the time you are diagnosed until end-of-life.

Available equipment

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

Bedroom and other equipment

Bathroom assistance

 

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.

Receiving an ALS diagnosis is devastating for all involved. It is normal to feel lost, frightened and unsure of what to do next or who to turn to.

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

How support services are changing

In the wake of the COVID-19 pandemic, our number one priority was to support the safety of the ALS community and our staff, and as a result, we quickly pivoted to moving all ALS Canada office staff to working remotely from home and made changes to our service model to include more virtual and remote support services in place of in-person visits.

Now, with more regions throughout Ontario moving into Phases 2 and 3, many of you have been asking how ALS Canada’s services will evolve. For the foreseeable future, here is what our services will look like:

  • Individual support. ALS Canada will be providing virtual and remote support in place of in-person visits. Regional Managers will continue to communicate with people and families living with ALS through videoconferencing, phone, email and/or text. We have received feedback from the community that this model has been working well.
  • Support groups. Support groups are now being offered virtually through videoconferencing technology removing geographical barriers, enabling increased participation. These sessions will continue to be offered in this format. For more information about upcoming support groups, please contact your Regional Manager.
  • Educational webinars. Webinars featuring a range of expert speakers on a broad range of topics will continue to be developed. Initially, the webinars were created with a focus on the impact of COVID-19 and will now transition to key topics of interest to the ALS community. To access previous sessions, please visit ALS Canada’s archived webinar playlist on YouTube.
  • ALS Canada Equipment Program. We will continue to provide mobility and accessibility equipment working in partnership with vendors from across the province with practices informed by recommendations provided by public health experts. We are currently accepting equipment donations prioritizing items of greatest need to our community.

Support services survey results

Given how much has changed in the past few months, in May we emailed a survey to people and families who access our services to collect feedback about the level of support they are receiving during the COVID-19 pandemic. We are pleased to report that:

These have been challenging times and unchartered waters for all of us. Our commitment to innovation and your openness to changes in how we deliver support have resulted in an understanding that the way we support the ALS community and the way in which you need our support had to evolve. Even as COVID-19 restrictions are lifted, we know that the virus is still a risk and that the ALS community is considered a vulnerable population. The health and safety of our community and employees continues to be of utmost importance to us.

With all of this in mind, along with financial shortfalls that will be faced across the charitable sector, we are embracing the opportunity to do things differently going forward. We know that there will still be times when in-person support will be optimal and we hope to reintroduce it for specific circumstances (e.g. someone recently diagnosed with ALS, complex advocacy or support situations that are challenging to discuss virtually, etc.) in the fall, based on consideration of public health officials’ recommendations.

We appreciate your understanding and flexibility as our service model evolves to meet the needs of the ALS community while those needs and the external environment continue to change.