When the Mind Stays Strong but the Body Fades — How Can We Help?
By: Suhyoung of KIS
SDGs: Good health and well being
My goal is to create a project to support ALS patients and caregivers. Since ALS is a long-term disease, it can be hard for the families of ALS while the patient gets care for their illness. Both the patient and the caregiver would often get socially isolated and would have a mentally hard time coping.
My journey:
At the start of my project, I did not know much about why ALS patients and caregivers faced these challenges, so I researched until I found the root cause: the policy around it. There was a policy in Korea that did not allow families of ALS caregivers to receive full pay for caregiving even though they have to work 24/7 to support the patient. However, I couldn’t easily change the policy. I turned to raising awareness instead. I contacted many organizations, one of them being TargetALS. They reached out to me after reading my email and helped me set up my awareness campaign. So far, I have made a social media account which aims to spread basic facts about ALS and act as a community where ALS patients and their families can be heard.
What I learned:
I realized that I should not be afraid of failure and give up in the middle of my project. There were many challenges along the way, but in the end, the attempts I took that I did not believe would work actually worked. I was afraid to reach out to organizations for collaboration in particular.
“What if my project is not developed enough?” “I don’t even know what I am doing.” These thoughts held me back from making opportunities that could have significantly benefited my project. For example, I was afraid to write emails to ALS organizations I wanted to collaborate with because I was scared that my project was not good enough. However, when I finally mustered the courage and contacted them, they reached out to me.
What I would say to someone who is starting a similar project to mine:
ALS is an illness that is everywhere, and people from drastically different environments all go through a rough time with ALS. Research on ALS is being done globally now, like how samples were collected all around the world for Alzheimer’s. Maybe in the near future, the cure for ALS will be finally discovered. However, right now, ALS families should be heard as it is a disease that affects not only the patient but their whole family for an extended period of time. Don’t be afraid to reach out for help and collaborate with other people to make your ideas heard as things will work out if you don't give up mentally.
My journey:
At the start of my project, I did not know much about why ALS patients and caregivers faced these challenges, so I researched until I found the root cause: the policy around it. There was a policy in Korea that did not allow families of ALS caregivers to receive full pay for caregiving even though they have to work 24/7 to support the patient. However, I couldn’t easily change the policy. I turned to raising awareness instead. I contacted many organizations, one of them being TargetALS. They reached out to me after reading my email and helped me set up my awareness campaign. So far, I have made a social media account which aims to spread basic facts about ALS and act as a community where ALS patients and their families can be heard.
What I learned:
I realized that I should not be afraid of failure and give up in the middle of my project. There were many challenges along the way, but in the end, the attempts I took that I did not believe would work actually worked. I was afraid to reach out to organizations for collaboration in particular.
“What if my project is not developed enough?” “I don’t even know what I am doing.” These thoughts held me back from making opportunities that could have significantly benefited my project. For example, I was afraid to write emails to ALS organizations I wanted to collaborate with because I was scared that my project was not good enough. However, when I finally mustered the courage and contacted them, they reached out to me.
What I would say to someone who is starting a similar project to mine:
ALS is an illness that is everywhere, and people from drastically different environments all go through a rough time with ALS. Research on ALS is being done globally now, like how samples were collected all around the world for Alzheimer’s. Maybe in the near future, the cure for ALS will be finally discovered. However, right now, ALS families should be heard as it is a disease that affects not only the patient but their whole family for an extended period of time. Don’t be afraid to reach out for help and collaborate with other people to make your ideas heard as things will work out if you don't give up mentally.