Receiving a diagnosis of ALS can be overwhelming. You may experience many different emotions, and you may feel the need to learn more about how this complex disease will affect you.
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
- 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.
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.
Is cannabis safe for people with ALS? Some people with ALS use cannabis to help treat their symptoms.
A feeding tube, also known as a “g-tube”, is a device that can be used to support the nutritional needs of a person living with ALS.
The bowel and bladder are not typically affected by ALS. However, some people with ALS may experience constipation, which is defined as infrequent bowel movements—usually three times a week or less.
Over time, ALS impairs the muscles involved in breathing and coughing but does not impair the lungs.
Until recently, it was believed that ALS did not affect thinking or behavior. Research in the last few years has shown that ALS can cause cognitive and behavioral changes in some people.
This manual was developed by the Health Charities Coalition of Canada to assist patients, caregivers, friends, and families in understanding and navigating the Canadian healthcare system, and the actions you can take to help you receive the best possible health care.
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.