Good morning everyone. I thank every people who invite me here so much.
I’m Hiroki Okabe, I’m the president of Japan ALS Association.
I was born in Tokyo, 1958(nineteen-fifty-eight). Since childhood, I loved sports. I was in an equestrian club at university.
After I graduate from university, I worked at a construction company.
And then, I started my company, a construction consulting office.
In 2006, I developed ALS. Today, I’d like to show you a short film at first.
In 2006, I developed ALS.
In the following year, I started to receive care service at home by my caregivers.
In 2009, I started to use PEG and had tracheostomy for using ventilator.
In 2010, I established a corporation to start a home-visiting care office.
In the following year of my establishment of my own office, I became vice-chairman of Japan ALS Association.
In 2012, I also assumed the post of vice-president of ALS/MND support center Sakura-Kai, a Non-Profit-Organization.
And then, today I came here as the chairman of Japan ALS Association.
The movie showed to you is one day of my daily life.
This movie was listed on the final choice of the “MY RODE REEL”, the competition of short movie all over the world.
The director is Emi Kashiwabara, who is with me, one of my caregiver.
And this is my biography.
Everyday I’m packed with work and business just like today. Even using a ventilator, I came to Dublin. I’ve been to abroad four times since I started using ventilator.
In Japan, I go out two-third of month for my work. And when I’m at home I welcome people who come to learn how to live with ALS at home or I work for my home-caring business or I’m writing script like this presentation by using 透明文字盤, 口文字 (the alphabet board and mouth movement) or computer to instruct my caregivers.
I go to everywhere all over Japan by Shinkansen, the express train, and airplane.
I go to day business trip to 5 or 6 hundred kilometers away. It’s natural for me. Sometimes I go to a day trip about 1000 kilometers away for my work by airplane.
When I developed ALS, I seriously thought that I would never go out from my home except to go to the hospital.
So, I threw away lots of clothes and many pair of shoes.
However, as I said, now I go to several places and I am really busy at work everyday.
Using the official medical and social welfare services makes my life possible.
However, it’s really important / crucial to arrange own my care plan by myself.
That been said, caring ALS patient is much more difficult compared with caring other patients.
It’s because caregivers have to master special and individual ways to communicate with us and master some medical cares, like sucking phlegm, tube feeding and treating ventilator in addition to the whole physical caring.
There are little care givers who have all these skills, so we need to train our own caregivers by ourselves. This system we promote is, was named “Sakura-Model”.
Some of you may have heard about this system because Yumiko Kawaguchi talked about it at the Alliance in Yokohama, in 2006.
About this system, in short, we, the patient’s or our families recruit and train our caregivers by ourselves.
By doing that, it is possible for you to feel more free, like me.
And, I would like to share the idea about recruiting college students as part-time caregivers. The lack of care giver is a serious problem everywhere in Japan. There are some differences depending on the areas, though.
So, to solve the lack of care givers, some Japanese patients employ college students as part-time workers.
Most of my fellows were part-time care givers for me or other ALS patients when they were college students. During the dinner time, I’ll introduce them to you. They have practiced to introduce by themselves in English. So please ask them about the merits and demerits of working as student caregivers.
When I developed ALS, I was often asked “What would you like to do if you completely recover from ALS?” I always answered that I really would like to work again.
Well, I didn’t recover from ALS, but I’m busy with my work, so it means I fulfilled my wish. Actually, I have so many works to do, that I have to work whether I want or not.
What I most want to tell you is that, there are several life styles of ALS patients. If ALS patients arrange their own care plan, they can, just like ordinary people, choose their own way freely. There is no “correct life” or “wrong life” for us. I believe we, ALS patients have the capacity.