2018 was a momentous year for the ALS community. Discoveries were made that advance our understanding of the disease, clinical trials showed encouraging results, and the first therapy in over 20 years was approved for use in Canada for people living with ALS.
Yet in the same year, ALS continued to take countless moments and lives from families. We know how much ALS takes, and we know how desperately the community needs hope for a brighter future.
That’s why, over the holidays, we asked you to help stop ALS from continuing to take. Between Giving Tuesday and December 31, 2018, you gave generously in support of people and families living with ALS.
I donated in memory of my Dad who left our world nine and a half years ago because ALS wasn’t curable. I am hoping that one day it is so other people don’t miss out on time together.
These donor dollars are being used to help offset the financial burden for people and families living with ALS in Ontario by giving them access to equipment such as wheelchairs, walkers, ramps and stair lifts, all of which are made available through ALS Canada’s equipment loan program.
I gave for my mom, Anusuya Casinathan, who nurtured, cared and taught us to be independent. In her last days, her independence was severely curtailed. ALS Canada was on her side helping as much they could.
In addition, donations received during the 2018 holiday season will be used to invest in promising research that will pave the way for a future without ALS.
My donation was for my beautiful auntie Marlene who passed from ALS at the age of 59. ALS Canada was a massive support. To the researchers: PLEASE DON’T STOP! WE SUPPORT YOU! With love from SSM, Julia
On December 13, 2018, Dr. David Taylor, VP of Research at ALS Canada, made a Facebook Live announcement about research funding made possible thanks to donor dollars. If you missed it, you can watch the archived video below.
Thank you so much to everyone who gave a gift and shared their reasons for giving over the holiday season. Your stories reinforce the pressing need for research funding and one on one support for Ontarians living with ALS. Together, we can take a stand against all that ALS takes.
I gave in solidarity to all the people who live with this horrible disease. Giving to the cause fuels the hope that one day, ALS won’t be a terminal disease anymore.
I was diagnosed with ALS last May. I am 79, so I don’t have enough years left to hope for a cure for ALS. I do hope by contributing to this fund, that some hope may result. Emile
With so much progress being made, we can’t afford to lose momentum. Your gifts are already doing amazing things in creating hope, improving quality of life for those living with ALS, and contributing toward a future without ALS. There’s one more thing you can do that has tangible results: join ALS Canada’s Circle of Hope Monthly Giving Club.
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!
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.
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