Tip:
Highlight text to annotate it
X
Alper Kaya, an eye doctor, would wake up every morning to walk
to the hospital he worked for.
One morning, he felt an indescribable pain in his groin.
He did not make a big deal out of it at first,
but as the pain did not go away for a while, he had to see a doctor.
And after many consultations, he found out that
he was diagnosed with ALS, a disease he never heard of before.
That moment, he realized that his life will never be the same.
It was very hard to accept this fact. Until that moment, the only thing
that he could think about was his wife who was pregnant to their first child.
But now, he started to also think about his own disease.
Once he started having difficulties breathing,
doctors recommended him to use a breathing device.
They opened a hole in his throat
and his artificial respiration started.
The noise that this device makes became the melody of his life
for the last 20 years.
Please remember that he has been living with that noise for 20 years.
ALS is encountered in 2 to 6 people out of 100.000.
It is a disease caused by the malfunction of motor neurons.
As the neural system is malfunctioning,
the metabolism cannot produce sufficient energy to move your muscles.
Consequently, muscles become weaker in a gradual manner.
You lose your moving ability, but your mental functions
such as your judgement, perception,
and thinking do not get affected at all.
With the support of his wife, Alper Kaya started looking for ways
to live with that disease instead of avoiding it.
He started to combine his medical knowledge
with experiences he gained from living with ALS.
Meanwhile, the disease started to take over his body.
He first lost his ability to walk and then his hands lost their functionality.
Once he started his new life, first thing he tried was
not to lose contact with the rest of the world.
- I thought that I would be unable to use a computer
if I was not able to type on a keyboard.
After doing some research, I found out that
there was a solution for that also.
One of these solutions was the "cyber keyboard".
Although not much, I still can move my hands as you can see.
But I cannot move the cursor from one corner
of the screen to the other.
Therefore, I changed the mouse sensitivity settings to the most
sensitive level. Thereby, I can move the cursor with small hand movements.
I can do most of my work on my computer thanks to a program
we developed together with Tom Weber,
a German friend of mine whose father was an ALS patient also.
As his computer and the internet connected him
to the rest of the world,
he decided to share his motivation and knowledge with other patients.
He sent emails to and called ALS patients from all across Turkey.
He became a doctor and a friend for other ALS patients
and their relatives who were feeling lonely and isolated.
He gave them his contact information and told them to call him
whenever they wanted to.
- We have a forum on our association's website.
I receive numerous questions from there.
I read them one by one, group them
and try to answer to all questions in one general message.
I can talk on the phone. What else can one ask for?
I try to gather all information I can learn from my friends
in order to share them with other ALS patients.
I question the applicability of methods implemented
in different countries by communicating with people from
all across the world through sending out emails and making phone calls.
And I try to share the information I gather with ALS patients in Turkey
as much as I can, so that they can also implement these methods.
Alper Kaya, never gave up on life since the first day he was diagnosed.
He worked in pursuit of a better future
not only for himself, but also for other people around him.
He contributed to the lives of people he never met before.
He encouraged other people who are ALS patients just like him.
Instead of being weary of life, he embraced it.
And he made a remarkable difference
in the lives of hundreds of people.