43 years old, lives with Amyotrophic lateral sclerosis (ALS)

“I am Noémie, a 43-year-old mom of 4. I have been living with ALS for a few years now. ALS stands for “Amyotrophic Lateral Sclerosis”, an incurable, neuromuscular disease. ALS eventually leads to the paralysis of every muscle in the body, including the legs, arms, core, face and tongue. The muscles needed for swallowing, for speaking and unfortunately also those needed for breathing slowly stop working.

At the final stage you completely rely on other people’s help and need a feeding tube and a ventilator. For about 90% of ALS patients the disease progresses quickly with an average survival of 3-5 years after the disease onset if you are not on a ventilator and feeding tube.

I am lucky to be in the 10% of ALS patients whose disease progresses very slowly. The famous astrophysicist Stephen Hawking also lived with this form of ALS. He lived for over 50 years with ALS until he passed away in 2018.

It is very important to me to live a life that is as “normal” as possible. Even though I need to use a wheelchair and a ventilator to help me breath at night, I’m able to enjoy a pretty normal life. Sure, my “new” life is different, but it is still beautiful and absolutely worth living. I might not be able to go horseback riding through the forest, or skying, or hiking in the Alps anymore. But I can race on bicycle paths with my sporty & fast electric wheelchair ?

As a trained opera singer, I am obviously very happy that I have been able to keep my voice up until now. I can still sing with all my heart and soul. I just do it sitting in my wheelchair.

I am also very happy that I am still able to speak and eat by myself. Of course I am scared knowing that the disease will eventually progress. I try not to think about it too much, but to live in the present, following the motto “Carpe Diem” – seize the day. Don’t look back on things that you CAN’T do anymore and don’t look too far ahead into a future that scares you.

My strategy: live in the PRESENT and make the most of it.

I hope that I can keep my voice as long as possible and that the disease continues to progress as slowly as it has been so far.


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