Mar 31, 2011

Feeling restless

I am sad whatever I do…

I am overwhelmed by progression of his disease.

Tears fill my eyes even when I am cooking

He was healthy not long ago..

Translated by Ai Hongo

Mar 30, 2011

March 29

Today's Hajime

It is difficult to understand him with his progression of disease.

Great Big Smiles

Mar 29, 2011

Hajime's Resolution

On Sunday, at youth group dinner in our church,
Hajime had a situation that he choked again.
My husband and I hurried to church,
but he had already calmed down when we got there.

He said that it was not big deal
but his little brother got worried to call for counselor.
He did not want to make big deal out of it, he told me.

I explained him that he needs to understand
that these kind of accidents have to be dealt with 911,
when we are not around.

We, all family, went to "Gatten", sushi-go-round restaurant,
where Hajime has been wanting to go.
It was very hard for me to watch him enjoy dinner
knowing that it might be his last time.

However, Hajime knew his limit.

As soon as we got home,
he said, "I won't eat anymore.
I will take nutrition from tube only,
because I am afraid of choking again,
and I know I should do so to live longer."

He told me so.

It was heartbreaking to listen to him.
I choked up inside by thinking about his feelings of stopping
his favorite thing to do, eating.
I have to support him to make most of his decision.
I thought.

He might never eat for the rest of his life.
He might feel better enough to eat sometime.

I would like to look after him to know his condition and to support him.

Translated by Ai Hongo

Mar 27, 2011

Very Hard

Hajime looses his appetite and sometimes throws up.
It could be because of the last accident or getting tube in.

I thought I was ready for the day like this,
but it is very hard to face the reality.

He had many things he wanted to eat,
but he does not have his appetite now.

Translated by Ai Hongo

Mar 25, 2011

Planned blackout

Today, I watched TV program regarding issues caused by planned blackout. It was a story about an ALS patient who was hospitalized in Saitama.

As he could not breath himself, he used a breathing machine in hospital. It is a problem when breathing machines stop without electricity because of planned blackout.

When blackout happens at home, other batteries can hold only three hours. If planned blackout would be extended, he would not be able to breath. Because of this situation, it was decided for him to be hospitalized.

When planned blackout was carried out when he was in hospital, emergency battery lasted only three hours then light oil was used to generate electricity. It was difficult to get light oil at that time. There was very long line at gas stations to get light oil.

As soon as started, nurses went to check if breathing machines were working.

It is our problem, too. What do we do when my son uses breathing machine? Anxiety has been heavily growing on me. What if electricity stop…..I am really scared.

We use electricity without thinking, but I realized that saving electricity could save lives of many people. It is up to each of us.

Haven't you forgotten something important?

Translated by Ai Hongo

Mar 24, 2011

His favorite stew

Feeding tube…He is getting used to it.
At first he spit some drinks and got his hands dirty,
but he can do it without getting dirty now.

Hajime does not get hungry, maybe because of this feeding tube.
So, if he wants to eat from his mouth,
he skips one drink from his feeding tube.
However, yesterday his father made his favorite stew,
he could eat only so little.

He has been asking me to make stew as he wanted to have some stew,
but I didn't.
Because of me, he could not have some stew anymore…

I was tortured by a guilty conscience.
I would say I am sorry but it is too late.
I was very happy he could eat at least one bite.

In this way, his illness progresses day by day.
I am determined to value everyday,
so that I would have no regrets.

Translated by Ai Hongo

Mar 23, 2011

Shower after five days

Hajime's wound has getting been better. His pain also has been getting better,
but he says he has trouble sleeping because of pain at night. It is expected that his pain continues about a week. He is taking pain relief medication to cope with it.

He was complaining itching whole body as soon as he got home from school.
LA's dry weather made his skin dry and rough.

Because of his itching, he took shower for the first time in five days since his surgery. His little brother went in together and help him wash as same as the night before Hajime's surgery. Watching his little brother do his best for Hajime encourages us do our best for him, too. He is really kind and caring his brother very well.

Taking shower for the first time in long time, his wound hurt a little, but now he is nice and clean and it should help him sleep well.

Translated by Ai Hongo

Mar 21, 2011

To See His Smile

Today is fourth day after his surgery. His pain is settling down.

My son could not accept the feeding tub, but as he is getting ready to accept it,
we can see his smiles more often. I am very relieved. I am very grateful to God
that we could go thorough the toughest time of all.

Today, we as a family visited the person who took care of us before, and we have not seen them for longtime. It's been five years. We gave that person a "Friend of Hajime" wrist band and asked for help. That person accept it willingly. So kind.

I am so happy that we can support Hajime as you all are supporting us. I really thank God for this.

Translated by Ai Hongo

Mar 20, 2011

Difficult Days

It was only a brief moment of relief that his surgery went well.
Hajime's heart was broken.
We had never seen him so depressed.

His wound hurt after his surgery.
He could not accept the fact that he had a tube inside his stomach.
He could not talk when he had so much sorrow and anger to express.

His heart was attached by non-stop depression.

He wanted to cry but he thought he should not,
so that he try not to voice his feelings.

Hajime was trembling…
having frustrated anger.
He let his voice out.
(We could not understand him as we could not catch his words.)

However, I was happy to see him expressing himself.
It would be harder for him, if he could not express his anger.
I told him, "It is OK to express your honest feelings."
He must have sufferings we cannot imagine.

It has been very difficult after the surgery.
He has been getting himself back togther since yesterday.
He shows his smiles today.

You do not have to be good all the time…
I wish him so…

Translated by Ai Hongo

Hajime's Song

Today, I listened to this music feeling nostalgic.
I love this song.

"To Bear Another Fruit"

// sung by Yuuka Matsumoto, in Japanese //

主から選ばれて この世に植えられた?
shu kara erabarete kono yo ni uerareta
(you were chosen and planted by the Lord into this world)

mou hitotsu no mi o nozomare
(to bear another fruit)

ありがとう 気づいてなかった
arigatou kizuite nakatta
(thank you, I didn't realize)

dorehodo aisarete iru noka
(how much I'm being loved)

hajime kara ima made kami no ai wa
(from the beginning, God's love)

itsumo sosogarete ita koto
(has always been poured onto me)

ありがとう その愛 教えてくれた
arigatou sono ai oshiete kureta
(thank you for telling me about this love)

shu kara atae rareta kimi ni
(you were given by the Lord)

kirisuto no ai de motto tsukae
(I will serve you more with Christ's love)

watashi mo kono yo ni tsukae you
(and I will serve this world)

kimi wa aisareru tame
(you were born to be loved)

そして その愛 伝えるため
soshite sono ai tsutaeru tame
(and to spread this love)

主から選ばれて この世に植えられた
shu kara erabarete kono yo ni uerareta
(you were chosen and planted by the Lord into this world)

mou hitotsu no mi o nozomare
(to bear another fruit)

This song made me cry as this song is about him.

Go for it, Hajime!

Translated by Ai Hongo (Lyrics translation from Youtube)

Mar 16, 2011

We Received Your Love

Hajime's gastrostomy tube surgery is only two days away.
He is very scared.
I am not surprised that it is his first surgery ever.

It is said that it is a very simple procedure.
I will take worries away from him
and face the surgery with confidence to be fine.

Today, I received courage and hope by watching akin TV.
The host of the show, Akira, is very kind and passionate.
His wife, Acchan, is very kind and cheerful.
They are a wonderful couple.

In this program, we received so many encouraging messages.
We received your love.
Many people are praying for my son.
I am very grateful for that.

God, please protect Hajime's heart,
and be with him always.

Translated by Ai Hongo

Mar 15, 2011

Worry Before The Surgery

Hajime will have a surgery to have a gastrostomy tube in.
The date is coming closer and it is on this Thursday.
I have complicated feelings myself.

Hajime seems to be very worried.
He told me, "Mom, I am worried."
He is scared and afraid to have something different inside his body.
As a teenager, he does not like it al all.

He looses one ability to another.
So many changes occur everyday.
His heart cannot keep up with all these changes…
I think it is very hard.

Everyday it is harder for him to speak.
Eating is getting more difficult, too.
Drinking is no exception.
He has been choked up so many times these days.

God, please be with him always,
and heal his heart.

Translated by Ai Hongo

Mar 14, 2011

I pray for Japan.

Watching the news of "the East Japan Erathquake" breaks my heart.

I pray for the victims who lost their lives.
I pray for those who needs to be rescued.
I pray they get enough help as soon as possible.
I pray from the bottom of my heart.

I start to do what I can do.

Translated by Ai Hongo

Mar 11, 2011

A Simple Self Introduction

A simple self introduction (Japanese, English)

Translated by Christine Shirota (American English)

Third ALS Clinic

There was the third ALS clinic on March 10th.

He lost 3 pounds since the last time he was weighed.
He only weighed 102pounds.
He has lost 20 pounds from his original weight.

It started with Occupational Therapy.
His muscle strength has declined about the same degree as last time and we were explained about how he has space in his shoulder joints, the same explanation we had from the school OT. Because his left arm doesn’t move,(he can’t even raise it anymore) his right arm has to take on the extra burden so we were told that he should get help from somebody to take notes in class for him too. And she wrote a letter for the school.

Next in order were speech therapy, the main doctor, and the pulmonologist. For speech, just like the video examination, it was an instruction on food. Soft food must be chopped into pieces to make it easier to swallow before eating. Also, to always put thickeners in liquids before drinking. Never to use a straw, always drink little by little with a spoon. Were some of the instructions that we received. And, we were explained about things we need to watch out for when he gets a gastro tube.

The main doctor said that in totality there isn’t much progression from the last clinic. And regarding us looking for an easier, more practical speaking device, he told us about a speaking application on an iPhone and not the tobii. This software, Proloquo 2 go, is supposedly $189. The next clinic will be in May, 2 months from now.

The pulmonologist examined his breathing capacity. Just like last time, it was only 50%. We were told that this number is very low, so we need to at least get used to the BIPAP by using it a little by little. He said that the breathing gets shallow during sleep and is dangerous. We measured our son’s breathing during sleep and fortunately, it was the same as when he’s awake. We need to put more effort into getting him used to the breathing apparatus. I thought that I need to check him at night.

The things that especially worsened were, that it has become increasingly difficult for him to speak and that there’s a huge burden on his right hand. Those were the two.

The difference from the previous clinic were that my son’s expression softened and it was his usual smile and those were some happy things.

But, I am worried about his breathing.

Translated by Christine Shirota

March 11th

March 11th, how Hajime’s doing.

Mar 10, 2011

What is ALS?

1. Amyotrophic lateral sclerosis (abbreviated ALS, also referred to as Lou Gehrig's disease) is a disease where the muscle in the arms, hands and legs, throat, tongue and muscles necessary for breathing loses its strength gradually. However it is not a disease of the muscle itself, rather only the nerves(motor neurons)that move the muscles for movement are affected and the message from the brain such as to “move the arms and legs” are not relayed which results in losing strength and thinning of the muscles. On the other hand, it is normal for the senses of the body, intellect, vision, hearing and the internal organs remain intact.

2. How many people are diagnosed with this disease

Annually, there is about 1 in 100,000 who is newly diagnosed with this disease. In Japan there are about 8300 accounted for afflicted with this disease, according to the number of patients receiving special medical financial assistance.

3. What kind of people gets this disease?

The male, female ratio is 2:1; with male being the more. Anybody after the middle age may get this disease, but the most commonly afflicted are in the age range of between 50~60. In rare cases, people much younger may get it. Any specific work fields do not seem to have more cases of this disease.

4. Are the causes of the disease known?

The cause of the disease is unknown. There are theories such as metabolism of amino acid and relationship with free radicals, but no conclusions yet. In 20 percent of Familial ALS, a gene that produces an enzyme, super oxide dimutase is found to have gene mutations. Recently the genes, TDP43, FUS and optineurin has also been found to have mutations.

5. Is this disease hereditary?

In most cases it is not hereditary. If one of the parents, siblings, or a grandparent does not have the disease there is no need to worry about inheriting the disease. On the other hand, about 5 to 10 percent do have it within the family, which is called Hereditary ALS. In this case, most do have one of the parent, a sibling or a grandparent with ALS. As mentioned in the above, the gene mutation of super oxide dimutase is the cause in 20 percent of them.

6. What are the symptoms of this disease?

In most cases, it starts with clumsiness of the fingers and hands and weakening from the elbow and down, and thinning of the muscle. There are cases where it starts by having difficulties in speaking and swallowing. In either of the cases, there will come a time when all the muscles in the body, including the muscles to breathe will thin to where no strength is left, walking will no longer be possible and finally becoming bedridden, the patient will not be able to swallow water and food and breathing will be limited. Even if the disease progresses, senses and intellect are usually not affected, and eye mobility disability and incontinence is rare.

7. What kinds of treatments are available for this disease?

1. The medicine to delay the progression of ALS, Riluzole (product name Rilutek) has been approved by Japan.

2. It is important to rehabilitate daily to ease the pain of the muscle and joints that come along with ALS. Please consult with your doctor, district health office, care manager(social worker) of the Care Insurance(medical) or the appropriate personnel from the center of intractable disease medical communication organizaion at each prefecture( about how to rehabilitate.

3. For breathing difficulties, there is a non invasive method of using a nose mask to aide in breathing or an invasive method of a tracheotomy.

4.If there are difficulties swallowing the following are ways to arrange the form of food(as a strict rule, soft and juicy food, bland tasting food, and cold foods are easy to swallow), swallow in little portions, pulling the chin in when swallowing are some ways of eating and swallowing that can help. When swallowing becomes even more difficult, there are several options, a tube can be inserted through the abdomen into the stomach (g-tube), inserting a tube through the nose into the esophagus to the stomach for feeding, or getting nutrients through an IV. Currently, G-tube is the most common way to get nutrients.

5. Progression of symptoms such as difficulties in speaking, no strength in hands makes it harder to communicate with families and other people. It is important to learn new ways of communication at an earlier point. Practice is first necessary to use a communication board called the letter board.(There is an entrance course on the website of Niigata prefecture office of ALS Association If even a part of the body or the mobility of the eye is left, there are appropriate computer multimedia technology, and switch option that makes communication possible. ( added by Christine Shirota. Please consult with your doctor, district health office, care manager (social worker) of the Care Insurance(medical) or the appropriate personnel from the center of intractable disease medical communication organizaion at each prefecture( more information.

8. How does this disease progress?

This disease is always progressive and once having the disease the symptoms do not become better. No matter which muscle part of the body it starts, sooner or later the entire muscle is affected and at the end, the diaphragm stops function and most die from losing the ability to breathe. When not using a ventilator support, it usually takes about 3-5 years from diagnose to death, but some are able to live for over 10 years and go through a very slow decline during a long period. On the other hand, there are cases where breathing stops at a much faster progression. Especially, in many of the cases of the elderly, that start with symptoms such as speaking difficulties, hard to swallow food have a fast progression. The important point is that the progression varies widely between each patient and treating each one accordingly will b necessary.

Translated by Christine Shirota