What are all the challenges faced by people with ALS? When most of their voluntary muscles stop working.
ALS is also known as Amyotrophic lateral sclerosis or Lou Gehrig’s disease or motor neurone disease. It is a specific disease that causes the death of neurones which control voluntary muscle. People with ALS face problems in eating, walking, talking, breathing.
“ALS came invisibly and slowly; it crept in and stole my best years and dreams.”
Challenges faced by people with ALS:
It is hard to explain the pain and the challenges faced by people with ALS. But we will try explaining with the help of an example.
Imagine, you are on a football field and you lose your balance for no reason at all. You fell over by a sneeze while standing on the metro platform. These all are the real life symptoms of Are’s life when he got diagnosed with ALS. Are no longer can speak. He uses his eyes to write on the screen. Are has chosen to extend his life using a ventilator.
This is what he said on his life and on ALS:
“It puts me in a completely different situation, just being able to grunt a little or utter a simple word provides a lot in terms of communication. When this disappeared I became very isolated within myself. Suddenly tools and techniques became very important for the simple daily task. ALS came invisibly and slowly; it crept in and stole my best years and dreams. Like being the best dad in the world for my two daughters.”
Are’s body functioning:
“The only thing I am able to do on my own is to kick my way back up in the bed if I slide down. I say yes by lifting my eyebrows or by nodding and no by closing my eyes or shaking my head.”
“I fell over by a sneeze while standing on the metro platform.”
First knock from ALS in Are’s life:
Are has been healthy all his life. He has never been seriously ill before. So, neither he nor his wife ( Yuri his wife, for her he left his job in his country Norway and sold everything he owned to move in with Yuri in Japan. They got married in August 2005) could easily comprehend.
He said, “symptoms began in the summer of 2009 on the football field. I stumbled for no reason at all. One year later, I was diagnosed at a hospital in Tokyo. At the same time, my wife gave birth to our second daughter. In the end, I had to quit my job because I could barely walk normally. I fell over by a sneeze while standing on the metro platform.”
Challenges as a whole:
“You shifted to a completely new country for your wife; you want to hug her but cannot.”
Are and his family is very strong but not everyone is as strong as him, not everyone has such financial support that they can afford tools and technology to support their life. The rate and the order vary from case to case.
However, here I want you to try and imagine this life: Where you have a beautiful wife for whom you left everything and shifted to a completely new country; you want to hug her but cannot. Imagine having two lovely little daughters; you want to teach them how to read but you cannot. You want to teach them how to walk but neither you can walk nor you can teach them.
How did you feel? Hold on to that feeling, that pain. That is the pain Are has gone through in his struggle against ALS. And he continues to do so each day with outstanding willpower and strength to live, to continue no matter what.
No one can share the pain that people with ALS have but we can lessen their challenges with our helping hand. If anyone in your family has ALS then what you need is to stay calm and be patient. Below is what Are said:
“The only motivation I have is that I have to exist for my daughters. If I am strong enough and get a good support team, established chances are that I can manage many more years.”
source for images – Are’s Life Video