ALS Awareness
Content Courtesy of the Forever Young Podcast with Christiana Egi and Cherrie-Marie Chiu.
Did you know that June is ALS Awareness Month in Canada? The ALS Double Play recently held their annual 5k Walk and brand new event "foodie fest" for ALS Awareness Month. Cherrie Marie Chiu is the Executive Director of ALS Double Play and we are proud of Cherrie and her hard work in organizing so many events to raise funds to advance ALS research, with the goal to find a cure soon. ALS Double play has done all good things towards funding and raising awareness for ALS. To bring awareness to ALS Awareness month, Cherrie shares her ALS story with us on our recent Forever Young podcast episode. Listen to the full episode to learn more about ALS and Cherrie’s journey:
ALS Double Play contributes greatly to the advancement and research of ALS. Cherrie is passionate about her work and with her end goal in mind, she uses her creativity to raise more awareness and funding for ALS research. It is difficult for any family to witness a member face a terminal illness. The goal for Cherrie was to do something positive with the difficult path her family was on. Cherrie's late brother Christopher lived with ALS for five years. Within one year of being diagnosed, he began using a wheelchair full-time. Within two years he began having trouble speaking. Within three years they began to puree his food and he almost exclusively stayed at home. He required round-the-clock care as he was unable to do many tasks on his own. It is not easy for any family to watch their loved ones go through such an experience, which lead Cherrie and her family to want to do something real to help the ALS community - which led to ALS Double Play.
Most people have probably heard about ALS by now because of the ice bucket challenge a few years ago. Can you believe that was in 2014, which was almost 8 years ago? The Ice Bucket Challenge was a really great way to get ALS to the forefront of people's minds. It was the first time that many people even heard those three letters together - ALS. The Ice Bucket Challenge was a really great way to raise funds for ALS research as well. However, what did fall short was educating people on what the disease really is and what happens to people who live with ALS.
ALS, which stands for Amyotrophic lateral sclerosis, is a fatal disease, and there is still no real treatment for the disease today. Everyone who becomes sick with ALS today will die from the disease. Most people lose their battle between 18 months and 5 years of their diagnosis. Cherrie shared with us what happens to someone who lives with ALS. ALS starts differently for everyone, and if there is one thing that Cherrie wants people to know is that ALS is different for everyone. Every family also may go through a different journey in caretaking for their loved one. What happens with ALS is that the motor neurons that relay signals from your brain to your voluntary muscles die. As they die, your voluntary muscles stop moving. When you stop using muscles, they are basically rendered useless. Voluntary muscles are the ones you use every single day to walk, brush your teeth, eat and hug loved ones. When people with ALS lose their battle, it is usually when they can no longer take a breath on their own.
So what can we do to help raise more awareness for the disease and create more funding?
The first thing you can do if you have a friend or family member with ALS is to visit them, spend time with them, and communicate with them. One of the hardest things about this disease is that it usually does not affect your mind, although the body falls apart which can tend to make one feel like a prisoner in their own body. A person with ALS can see and feel everything the same way they did before, therefore it can be hard to notice when people don't treat you the same. Making the most of your time together and ensuring your loved one feels loved will always be worth it, even if it's hard to see a loved one suffer a terminal illness. Even when one is sick, they still require community and fellowship. They require friendship and love.
It can be very painful to talk about, however, Cherrie mentions Christopher once said that "if we all stop talking about ALS and our loved ones we've lost, then nothing will ever change for the disease". In order to find a cure, we need to give ALS the attention it deserves so that more research can be done - this is what ALS Double Play aims to do.
Another way you can show support and raise awareness is by supporting and helping caregivers and loved ones caring for the person with ALS. We have discussed caregiver support in many podcasts. Caregivers may go through many different events during caretaking for someone and it is important that they can take the necessary rest they need to ensure burnout does not occur. If you can help a caregiver by taking over some of their time so they can get some downtime, it will allow them to come back better and be able to be stronger. You could relieve their stress by cooking or driving for them, asking for exactly what they might need can also help you understand in what ways they may need you to show up for them.
As Cherrie mentioned, every family also may go through a different journey in caretaking for their loved one. Try to be mindful that you may not know what others are going through. Having more compassion and being more empathetic can go a long way. Checking in with family and loved ones, even if it is just a phone call can bring encouragement to someone on a stressful day.
Photo by @alsdoubleplay
On Saturday, June 4th, ALS Double Play celebrated their 5th annual 5k walk, which is an intentional walk for ALS. This year's walk was held at the Pride of Canada Carousel in Downtown Markham, which was a new location. A raffle draw with multiple prizes to win, a carousel to enjoy after the walk, what a fun-filled event!
It takes a lot of creativity and hard work to plan events and make them successful. We are grateful for Cherrie's passion to create and organize these events to create more awareness of ALS. We are also grateful for volunteers with big hearts that help these events become a reality, as there is no way one can do it all by oneself. After all, giving your time is one of the greatest forms of charity, and charity keeps us all young at heart.
One of the most difficult things that can happen to any family is to be faced with a terminal or debilitating disease. The emotional upheaval and the ensuing caregiver stress, the guilt, and eventually, the burnout can destroy the very fabric that holds families together. Coming through it, being able to turn it around, and focusing on helping and supporting other families through their journeys, while raising awareness and funding for ALS research. The cure is no small feat. We applaud Cherrie, her mother, her late father, her family, friends, and wonderful volunteers. We know Christopher is looking down on Cherrie with such pride and joy.
We thank Cherrie for sharing more about ALS and what we can do to raise awareness during ALS Awareness Month. If you are interested in learning more about ALS Double Play or want to become an event volunteer in the Greater Toronto Area check out their website at www.alsdoubleplay.com to stay updated with the latest events. After all, giving your time is one of the greatest forms of charity and charity keeps us all young at heart.
The Forever Young podcast is created and produced by Christiana Egi and Cherrie Marie Chiu. Produced and engineered by Elisse Hill. The podcast represents our opinions and those of our guests. The content should not be taken as medical advice. It is for informational purposes only. Please consult your health care professional for any medical questions. If you like our show, please tell your friends and leave a five-star review on Apple Podcasts. New episodes are available every other Wednesday. Have questions? Email us at ourforeveryoungpodcast@gmail.com.
