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.

How do you tell your friends and family you have ALS?

There is no easy way to tell family and friends you have been diagnosed with ALS. And there is no right or wrong way, either. Individual personalities, family circumstances, and the degree to which the symptoms are visible can all play a role in when, how, and with whom to share the news.

Lianne Johnston has worked with hundreds of families coping with ALS in the nine years she has been a Regional Manager for ALS Canada. She lists plenty of reasons people find it hard to talk about their diagnosis: feelings of denial, fear of upsetting family members such as elderly parents, a reluctance to receive pity from others, or lack of energy necessary to comfort others are just a few examples.

Fred Gillis: One family’s approach to sharing the news

For Fred Gillis, who was diagnosed with ALS in 2015, being open about the diagnosis and communicating the news quickly and extensively came very naturally. He and his wife, Lana, both peace officers in the RCMP, had experience delivering bad news in their professional lives that helped them to be proactive about informing the people around them. They describe themselves as “forthright and not the type of people to hide stuff,” so for them, putting off talking about Fred’s diagnosis was simply not an option although they are the first to admit this might not be everyone’s chosen path.

Fred’s willingness to talk about his ALS diagnosis doesn’t mean it wasn’t an emotional experience for him. Even today, he chokes up when he says that the hardest part was telling his three children, who were 16, 18, and 20 at the time. Within a week of receiving the news from their neurologist, Fred and Lana came up with a strategy for informing their children. They created a PowerPoint presentation to explain the disease and its progression, stress important information such as the fact that Fred’s ALS is not hereditary, and provide an opportunity to ask questions. Sharing with the children one at a time gave each of them a chance to react in their own way. For Fred and Lana, that was an important way to recognize their individual personalities.

When it came to telling their broader circle of family and friends, Fred and Lana created a communication strategy that recognized the power of all social media platforms. For Fred and Lana, it was very important that the news come directly from them as opposed to other sources. They chose to deliver the news in stages – all within a day or two – making use of personal email, internal work email and Facebook as their main modes of communication. Lana said that sharing information in this way was “extremely important” for Fred in accepting the disease and brought an “outpouring of love and support.” It also told people that Fred was open to talking about his disease and answering questions if anyone wanted to ask. And it meant that he and Lana didn’t have to tell the story over and over again.

Communicating can bring relief

As Fred explains, after sharing the news of his diagnosis, he felt “a tremendous sense of relief.” For him, it meant he could move on and spend his time in the best way possible. He understands that not everyone in his circle can journey alongside him. He doesn’t judge people. He relies on his sense of humour to deflect some of the sad feelings. As a 6’2” man who used to weigh 260 pounds, he jokes to his friends who he played hockey with: “Now you’ll finally be able to skate around me!”

When people are considering how to have some of the more difficult conversations about their ALS diagnosis, ALS Canada Regional Managers can provide guidance and insight as a result of their extensive experience working with families coping with ALS. Sarah McGuire, ALS Canada Regional Manager for Central Ontario & North Simcoe Muskoka, describes situations that can make delivering the news particularly difficult. “I have met people who recently lost close family members or friends for other reasons just prior to receiving their ALS diagnosis. Delivering this news on top of a loss can cause a lot of distress.” Similarly, in her work with parents who have young children, Sarah says, “I let people know that they are under no obligation to do anything immediately. However, it is important to know that our loved ones who know us very well – even young children – can eventually pick up on physical changes, stress levels, potential information being kept in confidence.” She says one of the benefits of being open about an ALS diagnosis is that you are fully in charge of the information that is shared.

You don’t have to do it alone

Melissa Van Tuyl, who supports people with ALS living in Hamilton, Niagara & Haldimand Brant, explains that she and her ALS Canada Regional Manager colleagues can attend family meetings to help answer some of the more difficult questions. “You don’t have to do it alone if you don’t want to,” she says, and recounts her experience with a woman who had worked in the school system for 25 years when she was diagnosed with ALS. The woman wanted to write a message to her colleagues so they wouldn’t assume she was simply taking early retirement. She and Melissa sat down together and wrote a personal message the woman could share with her colleagues in a way that was heartfelt and honest. ALS Canada can also provide families with resources such as “A manual for people living with ALS” or guides designed specially to help children and teens who have a family member living with ALS.

A neurologist’s perspective

Telling a patient that he or she has ALS is something that medical professionals take seriously so that the information is relayed in a way that is clear but also compassionate. In addition to being a neurologist and Medical Director of the ALS Clinic at the University of Saskatchewan, Dr. Kerri Schellenberg is the author of a paper called “Breaking bad news in amyotrophic lateral sclerosis: the need for medical education.” She stresses the importance of being sensitive to each of her patients’ individual needs in terms of how much information they want at any given time, and how to balance clear communication and empathy with respect to some of the common fears people express. She encourages her patients to ask as many questions as they want, and even to write down questions prior to meeting with her but as she admits, “it is a lot to take in at once.” She recommends a staged approach where she and her patient can revisit the same questions and introduce new information as time elapses.

In the same way, after someone has told family and friends about their diagnosis they can anticipate additional questions and the need to share new information as time passes. Using social media, creating a blog or sending group e-mails can be very helpful as a way to keep people informed. As Lana and Fred point out, “people just want to help.” Letting them know how can be difficult to articulate, but it can also open the door to just the kind of help, kindness, and support that is needed and appreciated.

What do you give someone living with ALS to show you care? There’s no ‘one-size-fits-all’ gift that works for everyone, but there are special ways to say “I am thinking of you.” The holiday season can be a perfect time to do just that. We recognize that it’s not always easy to know how to help, so we recently canvassed our regional managers and our online community for their gift ideas. They came back to us with practical suggestions, many of them suitable for someone regardless of where they are in the progression of their disease. Here’s what they had to say.

The gift of time

The gift of time was the number one response from across the board. Gail Renshaw, whose husband, Cliff, passed away from ALS in August, stressed the importance of sharing time together. “The most important thing for Cliff was to spend time with family and friends. Since his diagnosis two years ago, we planned and enjoyed many themed dinner parties to make things fun. ‘Spaghetti Western Night’ was his favourite. Everyone had to come dressed as a cowboy. We watched spaghetti western movies, ate spaghetti, cowboy beans, ribs and corn bread. We made some wonderful memories that we can cherish forever.”

Precious time together can take many forms. It can be a private moment between the two of you or a larger gathering among friends or family. Going out for dinner, or to a sports event or music concert can be a way to maintain connection and enjoy your time together in a different way. When planning a social outing, make sure to consider accessibility if the person you are with uses a cane, a walker, or a wheelchair. A gift of time can also be as simple as reading a newspaper or book aloud if someone you know with ALS is no longer able to turn the pages. Simply offering your company can provide comfort and support to a friend or loved one who is too tired to communicate, but would welcome a caring presence by their side. For the full-time caregiver, offering to spend an hour or so with the person with ALS can also provide some much-needed respite.

The gift of words

Another way to create cherished memories is to help videotape special messages or write letters for loved ones. If someone in your life has ALS and has expressed interest in documenting their feelings, hopes and desires, you could offer to help them by setting up a camera or typing out a message they dictate.

The gift of food

Many respondents also suggested preparing and freezing meals for the family as a way to reduce the load on caregivers. Heather Cockerline, whose dad had ALS, talks about what a relief it was for her parents to have help with cooking meals. “While he was sick, his care was the priority which made meal preparation daunting on some days. What Mom and Dad enjoyed was a steady supply of homemade soups and healthy meals. All they had to do was warm them up.”

The gift of service

The burden of completing daily chores can become overwhelming for a caregiver who is focused on attending to the needs of a loved one with ALS. Relieving some of the stress by offering your services is a wonderful way to help. Some of the most popular suggestions offered by our respondents included snow-shoveling, grass-cutting, babysitting, picking kids up from school, dog-walking, doing laundry, filling out forms, sending emails, and shopping. Housekeeping services were also high on the list, whether it was paid help on a regular basis or an offer from a friend to come and clean the house themselves.

The gift of relaxation

Stephanie Marshall-White suggested offering gift cards for physiotherapy, massage, manicures or pedicures. “My mom recently passed away from ALS and throughout her diagnosis she really liked physiotherapy or massage. I think it would be a great gift to be able to donate an hour of massage or whatever it might be. It really made her feel so much better.”

The gift of entertainment

Carol Skinner, ALS Canada Ambassador and someone who is living with ALS, describes the boredom she experienced as she lost mobility. She also struggles with the physical tiredness that accompanies the progression of the disease. She suggests offering to pay for streaming services such as Netflix, Spotify, or Apple Music to help pass the time. She also suggested smart devices such as smart thermostats, wireless lighting, and wireless speakers and home sound systems that enable a person to control the temperature, lights, and music in the house from their phone without having to get up.

The gift of flowers

Finally, respondents suggested a weekly flower delivery service as a cheerful gift to brighten the house. When you are housebound, a fresh bouquet of flowers every week can be a welcome sight to behold.