Jan 31, 2012

Benefit concert today

Yesterday, we had a benefit concert for Hajime at our church.

On that day morning, Hajime was just doing fine. He was using a triangle pillow from Rhea and enjoys watching Youtube.
Concert was from 3:30pm so we start to prepare around 2pm to take Hajime to the church.
However Hajime didn’t wanted to go and told us with tears in his eyes that “I don’t want to meet to anyone,,,”
Well,,, for us, we just can’t leave him at home since we knows that so many people work very hard to make this concert happen.
Poor Hajime but we wanted to let Hajime experience this great music. At the end, I’m glad we could take him to the concert.

We don’t have a van fits a wheelchair so we borrowed from our friend. With that van we head to the church.
At the church, so many people were waiting Hajime at the outside.
During the concert, Hajime was enjoying music with tapping out the rhythm.
I was so relief and happy seeing that.
I’ve uploaded some great plays to share with.

First of all, I would like to thanks Rob to gather musicians and conduct this concert.
Also I would like to thanks Marilynne for communicating with ALSGA.
This only happen with all of the people helps. Thank you so much everyone!

Translated by HM

Jan 29, 2012

Present from Rhea

Today was a very nice day.

First of all, I was very surprised that the new caregiver nurse quit with in two days. (Seems to be a family emergency reason.)
So today, another new nurse come home. The new nurse seems nice and cheerful so I’m hoping communication between Hajime works out well.

Today, we got an unexpected present. Lately, I was looking for a triangle pillow for Hajime. My friend Rhea heard that this kind of pillow are sold at Thai so she went to Thai town and found the pillow. She brought it to our home right away. I was very pleased for her diligent care to Hajime.

Hajime tried to use his Xbox controller again with this pillow.
The result was perfect! It was so nice seeing that he could use Xbox controller with his both foot once again.

Translated by HM

Benefit Concert today

JAZZ CONCERT: Jan. 29, 2012, 3:30 p.m.

Jazz Benefit Concert honoring Hajime Miyasaka.
First United Methodist Church, 500 E. Colorado Bl. Pasadena Ca.

On the lineup: FUMC Jazz Combo, LACHSA Trio, Polytech H. S. Jazz Band, and the awesome Thursday Morning Little Big Band. Credits for some of these musicians include Woody Herman, Count Basie, Pat Martino, Brian Setzer, and many, many more. Free will offering to benefit ALS guardian Angels Foundation.

Thanks and see you there!

Jan 28, 2012

Request again

Today, new homecare nurse come to our house at this afternoon.

She has a slightly different approach of a way of care than previous caregiver. She work hard but seems that it might be too much for Hajime and bothering him a bit asking question so many time. During a bed bath time, Hajime was a bit uncomfortable because of this.
Those things should become more natural after continuing a care so I'm hoping that Hajime can bear this for a while.

Hajime’s secretion is getting back lately. His oral secretion is suppressed after Botox and we only need to suction about once in an hour for now but I’m worrying his secretion’s color and odor. I’m suspecting that increase of secretions is because Hajime is off period of Tobii Neb (antibiotics).

Other than that he is doing pretty well. He uses suppository when he cannot go and that will work within 20 minutes.
Past few days, maybe SENNA is working and he even doesn’t need to use suppository.
I’m hoping he doesn’t ever have to use any medications that make him uncomfortable.

This is a same request again I’ve posted few days ago. Hajime’s leg muscle is getting weak and difficult to draw his knees up.
I’m looking for a triangle shape pillow. Does someone can help us?

Following are just example images.

Translated by HM

Jan 27, 2012

K9 visit

We are having a new home caregiver since yesterday.
She seems to be very nice and calm. Hope she can learn Hajime’s care fast.

Today, we had a wonderful present for Hajime.

Lauren and one of a policeman brought directory Hajime’s birthday present to our home. It was a present from many people work for South Pasadena.
Also police dog Rex comes with them! He was big and very smart. Of course Hajime was excited but my nephew was as well.

It was such a coincidence that Hajime and I was just talking about having a dog. Hajime wanted to have a dog lately so it was so nice visit.
Sometime animal can heal a patient so I’m so looking forward to have a dog.

Before this visit, cable guy come and setup a cable TV in Hajime’s room. This was one of a present from them. Hajime was very happy about this.
It is very sad that only thing he can do right now is watch TV... well at least with this cable TV Hajime can watch more program. Hajime is now watching his favorite program “Sons of Guns”,,, oh, no.

I think he got a lift from lots of unexpected gifts.

Translated by HM

Jan 25, 2012

Transition period

Hajime is loosing so much of leg’s muscle and getting so thin.

After loosing his mobility on his right leg, Hajime was not attempting to do anything and seems to feel low.
Although, today after the bed bath and maybe because refreshed, he was working so hard to use his XBox controller.
It is too hard to play games so mostly he is just watching Youtbe through Xbox. I know he really want to play game,,, It is just hard to watch him.

It is our challenge how to make Hajime overcome this very difficult time. I think it is transition period now. He and I need to accept that his whole body is about to loose control.
But honestly, for a past few days, I’m crying everyday.
Watching Hajime getting so weak and so upset that not able to do anything,,, it is so heart breaking.

Please heal Hajime,,,

Translated by HM

Jan 24, 2012

I’m so sad

Yesterday, I went to church with Ryo. We haven’t able to go church since Hajime admitted to hospital but recently I’m trying to return church again.
It was a bit upsetting that some people even did not remember about Hajime is sick. That remind us how long we have not been at church.

While staying at church, it brings back many memories of Hajime.
How Hajime was smiling,,,
How proudly he was doing crucifer,,,
How nice face showing us when he was singing,,,
There are too many memories about him here and I could not stop my tears.
It was so heartbreaking,,,
I felt I couldn’t come back here for next week.

For a past few days, Hajime’s leg weakness is accelerating.
It is almost impossible to use his Xbox controller. It was too soon not able to use anymore. Hajime is so sad about it.
He cannot play anymore his favorite game. He only uses Xbox for watching Youtube or Facebook. Playing game is so difficult now.

But, I’m thinking that he can not use controller mostly because he can not draw his knees up so if I could stuff something underneath his knees,,, he might still play a game…

I’m thinking something like this may work. Can anyone make for us?
If anyone read this blog and think you can make this kind of things, please let me know.

In no time, his legs are getting thinner and thinner and my tears never stop.
Hurray,,, me! Hurray,,, Hajime!

Translated by HM

Jan 22, 2012

I don’t feel like anything…

Hajime looked rather depressed and didn’t feel like anything… Either sleeping or losing himself and looked at the ceiling or looked around all day long…

I wonder he might get a mental blow seeing his leg muscles rapidly become weaker. He might be really disappointed as he couldn’t walk into everyone when his grandma was here.

Nonetheless, his health condition is not bad.
He spends a day doing nothing…I feel very sorry about him in such case….

Translated by RM and YM

Jan 20, 2012

Find it together

It has been four days since grandma came.
Fun time seems to pass quickly and I am hoping for the happiest time for Hajime.

Today, Hajime wanted to tell me something using the tobil, but it is not working because of some kind of viruses.
We tried the communication board, but it did not work as Hajime can't raise his legs any longer.
He ended up writing on his bed with his foot as usual. What I read was “Shower is head and arm only for today.”
He did not want his body to be cleaned.
I passed that message along to Jamie who gave him a bed bath.

This morning, Hajime told me again “scary”
Looks like he is feeling more and more negatively.

He is scared of the future as he has less and less control of his legs.
What I am scared of the most is that he will not be able to communicate.
I think it is very important to use tobi's eye system on a regular basis.

A nurse came at night. Hajime's blood pressure had come down, so no need for medicine.
I am relieved!
We were told to use a suppository regularly. If needed, put an open diaper underneath.
We will administer a suppository after an feeding in the morning every two days.
It is hard for me to do something Hajime does not want to do.
As for his eyes, antibiotic drops solved the problem, so that he can blink now.
We will keep an eye on it.
The nurse told us that when Hajime is feeling down, try to listen to him as much as possible.
It is a good thing that Hajime expresses his emotions.
I think the best thing to do is to listen to him.

I wish Hajime could feel happy being alive every day. It would be wonderful to find something that could make him feel that way.
We will keep looking together.

(Translated by Yoko. B)

Jan 18, 2012

Grandmother came to America

Today our grandmother finally came to America from Japan.
Hajime looked so happy as he was really looking forward to this day.

In the afternoon, a priest from the palliative care team came, but he only talked to me while Hajime was fast asleep. He prayed for Hajime.

We also had a bed bath while he was asleep, Hajime looked so surprised to hear the grandmother's voice when he woke up.

He really wanted to see the grandmother.
I hope her visit will cheer him up.

Hopefully, Hajime will enjoy the cheerfulness his grandmother brought to the house.

(Translated by Yoko B.)

Jan 16, 2012

Even with his right leg

Today, I had something frightening.

This morning, Hajime’s right leg was hanging outside the bed. Hajime could not pull back his leg by himself. I’m sure he was having a scary moment.

Usually, we don’t put a bed guard because he don’t move but something like this happen; we need to consider having those.

Recently, Hajime call us through the calling system when he wants to move his left leg. Today he call me so I move his left leg but this time he asked for right leg as well.

I felt like "the time come…"

His leg movement was most important thing for Hajime at this point. I was so sad to encounter to the reality.

Hajime told me that it is getting harder to play game now… I don’t know what to say him… I completely lose words.

He gives his foot instead of his hand to touch my palm softly to feel and gives me his love. Someday, we even cannot do this anymore. So sad,,,

It is so heartbreaking.

Translated by HM

Jan 15, 2012

Control by just his right foot

His constipation was better yesterday. Probably increasing the medication call SENNA from one to two tablets is helping.
Nurse was suggesting that we should give suppository every other day no matter what but I’m a bit worry that will get too loose.

Hajime got a huge balloon for birthday.
The day he got this, it looks like,,,

and still it is huge!

My friend Rhea brought this balloon. Every time I see this balloon, I feel her warm thoughts. Thank you, Rhea!
Hajime also like this balloon a lot.
I’ve tie down this balloon to his bed and Hajime is playing with his foot.
He even uses this balloon to call us.
When he play with this balloon, his face is so cute.

Hajime’s left leg getting really weak and barely able to use.
He is now only using his right foot to play the game.

I know he wanted to play more,,,
I know he wanted to communicate with people more,,,
I’m so sad thinking about how long he can able to his right foot.

I’m praying that he can use longer!

Jan 14, 2012

High blood pressure

Hajime was having again a very hard time with his constipations.
Yesterday afternoon nurse comes to check up Hajime. She was suggesting using enema.
We tried to explain him how important it is but Hajime was refusing with tears.
He really couldn’t accept that. He was stomping his foot to the bed and expressing an anger.

I told him, “you are doing great”, “I’m so proud of you” but I know it will not make him feel good.
How much I felt if I could trade to his position.
At the end after more evaluation, nurse told us that he don’t need enema at this point and just a suppository will be fine. Nurse was suggesting to use suppository every other day with a regular bases.
Because of this problem or not, he was having a high blood pressures for a while. This morning, he had 132/98.
After this BM thing resolved and still have a high blood pressures then he now need to take a medication for that as well.
Well, blood pressure will makes me worry.

Also, recently he has a lot of eye mucus and sometime he even cannot open his eye. I’m giving some eye drops and seem better now.
I notice that something was wrong with his blinking and asked him.
“Are you having hard time blinking? You can’t open widely and close?”
then Hajime told me Yes.
I thought ALS will not weakening his blink ability but nurse told us we have to wait for a while to know how things go with antibiotics eye drops.
I’m so worried if on some day he cannot even open his eyes on top of current situation.

I’m hoping Hajime’s condition get more stable and able to spend daily life more calmly.

Jan 13, 2012

Something to look forward

Hajime is have so hard time with his constipations. It is not a regular constipation and it is related with a muscle weakness on his belly. Last night and this morning, he was struggling for a several hours for this.

It seems that this issue will be more frequent and difficult down the line. It is just not easy even with mediations and suppositories.

Last night, I notice that his thigh sizes are getting uneven. I was aware that his left calf muscle was getting less but it shocked me that his thigh gets so thin as well.

I’m so feared seeing significant progression of the disease.

Next few months while he can use his leg, I’m hoping we can let Hajime do his own things meaningful and enjoyable.

Although, I don’t know what it is.

What I can think is only TV. Right now, he doesn’t have cable TV and only regular TV so might be good to have cable TV for him.

Does anyone have a brilliant idea anything that people can enjoy without using hand and legs?

Translated by HM

Jan 12, 2012

Nice ideas!

Hajime’s leg muscle is getting weaker even more. Lately, it is getting harder for him to use his iPad.

He used to use his toe pretty good to touch the iPad screen but now it is getting very difficult to lift his leg and stabilize. Now he only goes on to Facebook through Xbox but much less time than he used to. (Xbox controller is easier for him to control better than the touch screen because he does not have to lift his legs.)

Since he hasn’t used Facebook for a while, he just saw his birthday message on Facebook today. I helped him to go through the messages because it was difficult for him to do by himself.
I was so pleased to see that there were so many messages. Thank you so much everyone!

As I mentioned, he is having hard time to use tobii (communication device works under Windows tablet) but today we got a super controller ---which is “Xbox controller for Windows”.

We manipulate the button layout and adjust the setting so that Hajime can use this to control tobii.
It was my husband idea. Hajime already start to use it and talk to me through tobii again.

We gave a wireless speaker for his birthday present.

There are a ventilator and an oxygen concentrator right next to Hajime’s bed which making a huge noise. Because of that, Hajime cannot well hear the sound from the TV so we have to raise the volume but if there is a loud sound scene, it gets too big noise so adjusting the sound was our issue.
But again with Hajime’s dad idea, we got a wireless speaker that able to place right next to his bed. This will able to let Hajime hear the sound from TV always. He seems to start seeing the movies again.
Since he cannot move his body anymore, TV is very important factor on his life now. I’m hoping that this will at least increase a little more enjoyment on his life

It was a nice idea! Thank you Dad.

Translated by HM

Jan 11, 2012

The number of his smile

I’m wondering how Hajime is feeling after his birthday. I’m hoping he is happy.

Maybe because of many visitors, I felt he is sleeping longer than usual day. I think make Hajime happy the most is to have many visitors surrounding him.

Why do I think so? Because, recently Hajime can’t make even a smile due to his facial muscle weakness but yesterday I could see he was doing his best to make a smile. I was so grateful to see his effort.

I know it is a hard work for him to make a smile at this point but for me, I feel so much relief when I see his smile.

Hajime was trying to make smile over and over. And there were many friends smile as well. How nice it was.

Along loosing his muscle strength, he still gives us a smile. I felt I could see how happy he is from the number of his smile.

Thank you so much for cerebrating Hajime’s birthday.

Translated by HM

Jan 10, 2012

19th Birthday

Hajime already become 19. When Hajime come down with this disease, he was still 17. Soon after doctor gives us a diagnosis he became 18. It’s also already been 6 month since the day he has admitted to the ICU.

Because of so many things happen in a really short period, I just can’t believe he is already 19. Of course, I’m so happy. How thankful that we could cerebrate his birthday all together.

During his yesterday’s birthday, so many people stop by to say happy birthday to Hajime. The day before, he was a little weakening in spirit so I was so worried. I even was not quite sure how to cerebrate him but it turned out to be a needless concern.

At the morning, Mark came. Around noon, Danny, Alex and Kevyn came and at the afternoon Tommy also came.
Many of my friends visited us at the afternoon too.
Ikue, Atsuko, Akia, Reah, Mie, Dan, Masayuki, Yukiko, and their kids came to our house. They sang a happy birthday song together.

With all of their cheers, Hajime was making a smile! I am so happy to see that. I was so touched for everyone’s thoughtful heart. Thank you again.

At that night, Hajime spend some effort to write us a message through the tobii. He wrote such a wonderful note to us.

“Thank you Mom and dad for the wonderful and best birthday”

God, thank you so much for me to have such a blessing child.
I hope this happiness continue forever.

Translated by HM

Jan 7, 2012


Lately, Hajime is having constipations. Because his muscle weakening on his belly, he just can’t let go. He looks so uncomfortable.
Thursday was a day nurse comes so she helped in this matter.

Also at this Thursday, a new social worker from the team visited us. She might help us on the emotional/mental part. She worried about our children so she will make some time to see our kids next week.

Today, we had a nice present for Hajime. Brian who also came at Christmas come with his sister Emily and played “Canon” for Hajime. Canon is one of Hajime’s favorite music.

It was so nice. Hajime seem to relax and enjoyed their sounds.
His birthday is almost there.
I think it was such a nice birthday present for him.

Thank you, Alice, Brian and Emily!

Translated by HM

Jan 6, 2012

Home caregiver

Two months have been passed since Hajime discharged from the hospital.

I wrote in this blog before but we have a caregiver sometime come to our house to support Hajime’s care.
Recently, it is getting more often that she cannot come for various reasons. This week she is out all week.
We don’t have any back up person so we are taking care Hajime all by ourselves now.

Please let us know if anybody knows about any caregiver around this area.

Translated by HM

Jan 5, 2012

Having energy from,,,

Hajime is sleeping during the daytime more often since the New Year day.
He plays games much less than before due to his leg muscle weakness.
He doesn’t have many things to do so he is pretty much looking forward to have visitors.

I think Hajime had a really good support from our church and people come to see him often and encouraged him till Hajime admitted to the hospital.
Since that day, it was long way to come back home. Hospital stay turned out to be very long and also location was very far from our city,,, because or not he stay in the hospital bed all the time sadly he become bedridden. After finally he came back home, very few people come to visit him since then.
I regret seeing such Hajime. He is feeling alone.
There are so may people in church help our family meal very hard. But there are so few people come to see Hajime who actually Hajime really wants to see.

Hajime was very grateful to the people whom helped him. And also having energy from them.
I’m wishing that people could continue to give him energy.

Translated by HM

Jan 4, 2012

MediCal approved

With a lot of people’s prayer, Medical has been finally approved. Thank you so much everyone!

MediCal have been denied once before so we tried through the In-Home operation. An interview takes place while Hajime was still in the Hospital but it takes till now to hear the results. It is really a long-cherished approved notice.

Through this Medical, we are anticipating to have homecare nurse to support Hajime’s care. I am so glad.

Translated by HM

Jan 3, 2012

Can’t lift his leg

Today, I encounter with a shocking reality.
Hajime was trying to lift his left leg with his right leg. But actually he even couldn’t able to do it.

I asked him right away, “Do you want to lift your leg?”
And Hajime replied yes.
I helped him to draw up his knee.
Hajime responded me with his smile.
After that, he started to play a game with his legs as usual.

It makes me cry.
I was so shocked.
I was so sad to realize that the time is getting close he loose his ability to use his left leg.

It might not be so long that he will no longer play game.
He was so good at playing games with his toes.

It is so hart breaking to facing to the reality.

Translated by HM

Jan 1, 2012

Happy New Year 2012

Happy New Year! It is a beginning 2012.

My husband sister Akiyo visited us at the end of the year, Dec 27th.

Akiyo came here to help at July while I was back Japan. Hajime was still at Kaiser hospital so it was a while ago. At that time, Hajime can still walk and able to use his right hand. During past six-month, many things have changed.
This time, we had a chance to spend more time with her.
Hajime was also looking forward to see her so he was so sad when she need to leave. He was trying not to cry.

Dec 30th was my birthday. At the morning, I had a message from Hajime.

He seems to preparing this letter a day before. It was really a lovely message.
My family baked a birthday cake for me and did a lot of things for me. For me, even just stay together with Hajime was blessing but I had more that that and surrounded with love from my family.

I also got a lot of warm message through Facebook. Thank you everyone!

Every year, even last year, at the New Year’s Eve, Hajime stay overnight with this friend’s family to keep a spot for the Rose parade but this year he have to stay at home. We never imagine that it will change this much within a year.
Hajime wanted to go this year as well but considering his current condition, we gave up to let him go. He wanted to see B2 so at least I want to let him watch through TV.

This blog start at 2010 and already entering to the new year, 2012. This year, I’m hoping to see the God miracle,,,
Thank you for your continued help, everyone!
Thanks in advance for this year.

(Translated by HM)