Hiro’s quest to create an ALS movement in Japan


Hiro Fujita at home in his apartment in Tokyo. Photo Credit: Pieter Franken

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TOKYO (majirox news) — Hiro was walking down his company’s hallway as he normally did, when he suddenly noticed he was experiencing difficulty raising his left arm. That was in February 2010.

A few days later, he was surprised to find that hanging up his shirts was difficult. They felt unusually heavy. However, at that point, he didn’t think it was a big deal and that he only needed to work out more at the gym.

Then, at the gym, he couldn’t bench-press his normal 60 kilograms (132 pounds). That felt very odd, strange to him.

“I lowered it down to 40 (88 pounds), then to 5 (11 pounds),” he explained. “Finally, I took everything off, grabbed the bar, but couldn’t lift it.”

In the following months, his left hand continued losing considerable movement, and he was struggling with walking up and down the stairs to his fourth floor apartment in Tokyo.

As his symptoms worsened, he realized that something was very wrong. He started tripping when he tried to walk normally, and chipped his two front teeth in a fall.

He went to a hospital in Tokyo for testing. After two weeks of tests, the doctor delivered the alarming diagnosis to him and his older brother. The tests confirmed that Hiro had ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig’s disease. Physicist and cosmologist Stephen Hawking also has the disease. ALS is an incurable disease that slowly atrophies the body’s muscles until the person’s death.

At 31-years of age and in the midst of a promising career, the healthy and attractive Hiro Fujita would now have to face the overwhelming onset of this disease.

“After I found out, my brother and I walked around the grounds of the hospital for hours,” he said. “We tried to talk about it but we couldn’t. We were pretty much shocked. We went to the Buddhist temple near the hospital grounds and prayed.”

His brother, Masanobu, told their parents while Hiro told his colleagues and friends.

“I left the hospital a day before my birthday and broke it to my friends at my birthday party,” he said. They responded with affection and support.

Conflicting emotions

Hiro went through a process of shock, anger, bargaining and despair.

“I went through every emotion you can think of, including laughter,” Hiro said. “I didn’t even know why I laughed. I was just so unstable.”

He also suffered anxiety attacks when he thought about the possibility of dying, the terminal stages of ALS, the people with ALS without family or friends and what his family was going through.

“I would start sweating and my heart would pound,” he said. “I would take a cold shower or throw some cold water over myself.”

There isn’t any medication for ALS, aside from Riluzole, which prolongs life by about three to five months. The National ALS Registry observes that, regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to all other parts of the body as the disease progresses. Individuals develop increasing problems with moving, swallowing and speaking or forming words. Eventually, people with ALS are unable to stand, walk, get in or out of bed on their own, or use their hands or arms.

In later stages of the disease, individuals have difficulty breathing as the muscles of the respiratory system weaken. Although ventilation support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die from respiratory failure, usually within 3 to 5 years from the onset of symptoms. However, about 10% of those with ALS survive for 10 years or more. Hawking has lived with it for more than 30 years.

In April 2011, Hiro started losing his mobility from the neck down and became wheelchair bound, but his voice and face remain animated. As his symptoms worsened, he realized he needed to do something. He chose to continue living alone in his apartment, with a helper and his mother visiting him in the mornings and 40 friends alternating nights of cooking and putting him to bed. He plans to live there as long as he can.

Those who know and work with Hiro are saddened and sympathetic.

His friend, Steve Mele, who works in product marketing at adidas Japan K.K. in Tokyo, actively helps Hiro because his friend “is the kind of person who would do anything for you.”

He added that Hiro is determined to make the most of his situation, possessing an amazing amount of courage and a great sense of humor.

Hiro, center, at work in Tokyo with his colleagues

A life mission gained
As Hiro’s limitations increased, he learned things about himself that he had never known. What had once been daily activities that he carried out unconsciously assumed a new perspective.

“I took things for granted such as taking a walk in the park, drinking fanta, or just walking in a store,” he said. “Before I believed I had experienced a lot and there wasn’t much in the world that excited me. The disease really humbled me and I realized I didn’t know anything about the world.”

Hiro spent part of his childhood in New Jersey, England and Switzerland with his family. Then, he attended an American School near Tokyo. He still works in marketing at McCann Erickson, a global advertising agency with offices in more than 130 countries. He goes to work every Friday. The company still pays Hiro and has no intention of letting him go. As well as work, Hiro is starting a movement for ALS in Japan and possibly hooking up with an ALS awareness group in the United States.

Miyoko Ohki, a corporate communications specialist at McCann Erickson Japan Inc. in Tokyo, says, “Hiro is one of our most talented employees and even though he may only come to the office once a week, he does work from home and makes a contribution.”

She noted that the company’s board has agreed to support Hiro’s ALS movement. The details of the movement have not been decided yet. “The next step will be for Hiro to share the movement with the company,” she explained.

Ohki added that what happened to Hiro is devastating. “However, I always marvel at the way he holds himself,” she said. “I truly respect him for who he is and I am hoping to do the best that I can personally and professionally to help his movement. I also believe he will overcome this.”

With the love and support of close friends, family and employer as well as the care at the Jikei Hospital in Tokyo, Hiro sees a new future for himself with his ALS movement.

“I need to do this,” Hiro said. “I know enough about myself to know that if I could pull this off, I would feel useful. It’s my contribution to life, my mission in life. Even if it’s small.”


By キャサリン・マキノ

東京(マジロックス・ニュース)―  会社の廊下を歩いていたヒロが左腕を上げ難いことに気がついたのは2010年2月のことだった。









体の自由が制限されていく中で、ヒロはこれまで気づかなかった自分を知ることができ た。今まで無意識に行なっていた日常的なことに対して、新しい見方をするよう になった。「公園で歩いたり、ファンタを飲んだり、お店に入ったりすることが当たり前だと思っていました」と彼は言う。「今まで自分は多くのことを経験してきたし、今さら自分が興奮するようなことは世界でもそんなにはないと思っていました。でもこの病気になってからは本当に謙虚な気持ちになり、自分は世界のことを何も知らないんだということに気づきました」







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3 Responses to Hiro’s quest to create an ALS movement in Japan

  1. coco on 10/05/2011 at 3:05 pm

    his attitude towards his life may be attracting tremendous supports and help from his friends, colleagues and family to keep him going. or vice versa. I think it’s still a rare case in Japan, but hoping there will be more opportunities and support for anyone in any situations in the future.

  2. ALS patient's wife on 10/25/2011 at 1:48 pm

    My husband was diagnosed with ALS in 2006 after symptoms started in 2005.We lived in Tokyo for 21/2 years and returned to NJ and the first symptoms appeared 2 years after our return. Now my husband is exactly like Steven Hawking, uses computer with eye gaze software for communication and wheelchair bound. I went through all the emotions described above in the first few months of diag. and I always thought if these were the thoughts in my mind what would he be going through. Prayers and belief give enormous strength and everything becomes manageable. Everyday becomes blessed. There is an ALS clinic one can goto every 3 months, which opens up all resourses. After 5 years, my husband went on a ventilator coming very close to death. He is home after more than 2 months in the hospital. Our children give him the most motivation.
    Most important : Maintain stable weight If swallowing is getting difficult, get a PEG tube. It is very easy to manage.
    Bi Pap is very useful, especially at night.Have a PulseOx to tell you your breathing rate and Oxygen saturation. This is very important as one cannot see the weakness of the diaphragm.
    Life is the greatest gift and the best thing is ALS does not affect the mind, thinking, memory. None of that is weakened/lost.
    I very strongly believe that some kind of genetic mutation caused by the environment is what causes ALS. We are not able to collect data. The doctor’s office collects data from all patients and because of secrecy, patient privacy act there is nothing being done to draw connections and use intuition.Patients sharing info can certainly help them cope with their disease and even find cures.

  3. k2phxaz on 09/17/2012 at 11:20 am


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