Mar 31, 2012

The OT's Visit

Recently the respirator alarm has gone off many times. I worry because the volume doesn't increase and it just keeps ringing. When I do his suctioning or hit his chest, the volume does increase, so that's the only way we've been managing.

Hajime himself is fine.
He is happy when he has visitors, but aside from that, lately, he has been enjoying watching Netflix.

Yesterday was Mary's scheduled visit.
The bedsores on his bottom that had opened are healed. But she found another area which is starting to open. She covered it with a band-aid for now, and we are to keep an eye on it. It hurts Hajime, so I put pillows under his bottom, but he often asks me to put more air in his air mattress.

The OT also came to see him.
Hajime's ankles cannot flex anymore, so she put an empty box under his feet and then propped a pillow in front of that so that Hajime's feet would be at a 90-degree angle with his legs. She instructed us to have him do this exercise for five minutes every day. And when we return his feet to their normal position, we should take our time and not let go too quickly.
We should remember to continue with his range-motion exercises too.
Hajime's legs are only getting stiffer, so we have to do our best!

One other thing, he will be getting a new medication. It will help him stay awake longer every day, but the side effect is that it might make him more nervous.
But this medication will target his eyelid muscles so if Hajime doesn't want to take it, he doesn't have to.
We won't know what will happen if we don't try, so we will at least start him on the medication.

It may be because of the radiation treatment, but Hajime is producing a lot less saliva. And he no longer drools.
But it seems that the secretion from his trache is increasing, so I need to be watching that.

(translated by MS)

Mar 29, 2012

A Happy Day

Yesterday Toru came to visit us again. He brought a gift for Hajime, a big airplane model.

He took a long bus ride from a hotel in Torrance to see us. I am so filled with gratitude for his thoughtfulness in thinking of our family and taking the trouble like this. Thank you!

You cannot imagine how happy Hajime was to receive the big plane.

He talked to us about planes, which he loves, and showed us details about the plane. Hajime looked delighted.

Hajime's younger brother Ryo also talked about flying and I was happy to see them having a good time.

(translated by MS)

Mar 28, 2012

I Feel Uplifted

If you will allow me, today I would like to talk about myself.

Last Saturday, I had a "mind session" with a gentleman named Kazuhiko Maruyama who was here from Japan.

He has a blog named "Journey to Melt Away the Clouds of Your Mind", and he also started a treatment center for the mind called "Karakoko Treatment Center".
Through his sessions, he helps the client learn to accept and love himself by digging deep into his memories from childhood and look at them in a new way to deal with his emotional problems.
Mr. Maruyama was able to sympathize with me and understand that I was always trying to suppress my emotions because I did not want to let out my feelings about Hajime's condition. When I met him, my tears flowed so naturally because I really felt like he understood me.
I had decided to have this session with him so that I could learn to be more honest about Hajime.

Through this session, I was able to go back to my childhood and confront the feelings of pity I had for myself.
I was able to learn to love myself, so this was an extremely important time for me.
Hajime has become even more sensitive to my feelings than he was before.
There is nothing better than me being able to accept myself and then reveal my feelings to Hajime with honesty...because Hajime, more than anyone, wants me to smile freely.

Mr. Maruyama, thank you.

(translated by MS)


Totally Locked in State (see Locked-in syndrome) (AdhocBlog sorry only Japanese)

Until recently, I had never heard of this term...
But now it is weighing very heavily on my heart.

Hajime is losing strength in his eyelid muscles day by day.
Right now he is losing muscle strength to close his eyes, so what do we do when he loses muscle strength to open his eyes?...I am filled with such fears.

TLS is a condition in which the patient can no longer express himself in any way. I understand that there are a few TLS patients in the world. We as parents and Hajime must talk about this. It is a very sad situation and something that I don't even want to imagine, but we have to discuss it.

In order to do that, we need to learn much more about it. But the more I look at those sites, the more I feel like my fears are closing in on me.

(translated by MS)

Mar 25, 2012

On Hajime's Bed

Little by little, Hajime has been trying to get used to Mint , and yesterday Mint lay down at Hajime's feet...

It looked as if Hajime was feeling ticklish when Mint was licking his feet, but it also felt nice and warm with Mint touching his feet.

After that, Mint lay sprawled out on top of Hajime's stomach.
Looking at that just made me smile.

Whenever I give Hajime his medications, Mint waits like a good boy on the sofa. Hajime is always watching Mint and yesterday when Mint was waiting as usual, I think he might have said to me, "Can you bring him over?"

It seems Mint now understands that he must be gentle with Hajime. Poodles are smart, aren't they?

(translated by MS)

Mar 23, 2012

Radiation Treatment II

Yesterday, after the big shock, we still had our appointment for his radiation treatment. It was for 3:00 so we went from neurology to radiation and they let us in right away.
We were surprised at how many doctors and nurses were there around Hajime. Until now, they had never done the radiation on a patient that remained seated in a wheelchair. The patient usually is laid down. I think that's why so many doctors were there.

They marked where they were going to radiate and adjusted the angles...but the headmaster which supports Hajime's neck was in the way, so they made adjustments by placing a towel in between his chin and the headmaster.
They wrapped tape around his head to hold it steady, but it seemed that it hurt when it was pulled, so when they radiated his right cheek, they removed the tape.
Hajime's position was too low, so the doctors brought in a board, placed him, wheelchair and all, on top of it, and made the necessary adjustments.
This preparation took a long time. I felt bad for Hajime because it looked like it was tough on him. But he hung in there until the end.

Now, everything was set and it was time for the radiation.
Everyone left the room. We could see Hajime on the monitor, and everyone watched it to make sure he was OK.
But the safety sensor kept activating so we couldn't start for a while. This radiation treatment is normally done with the patient lying on his side on a bed, but since Hajime was not on the bed, they had to move him to the outermost side. Because of that, the sensor detect that and not allowing to start.
They finally unlocked it and then they were able to beam the radiation on his cheeks.

They did two minutes on each side. Finally everything was over, at almost five o'clock.

We had put Hajime in the wheelchair at 1:00, and we got home close to 6:00.
He made it through quite a long day.

He was tired, but he wanted to see Mark, so Mark came over.

It was a very, very long day and the only thing we felt was sadness.

(translated by MS)

Mar 22, 2012

Strength of eyelids

Today, I’ve cried for a long while. I was so sad….

Through the palliative doctor referral, we went to see the neurology doctor, Dr. Chung at the Kaiser Sunset. We were concerning about Hajime’s eyelids strength.
What doctor told us were our worst fears. He told us that ALS do affect to the muscle of eyelids. It does seem that Hajime’s eyelids are already getting weaker now. It shocked me a lot. We never heard anything related about eyelids muscle through ALS. Basically, what doctor told us was except eye movements, all muscle might potentially affect.
Of course, Hajime was in the middle of these conversations so it shocked him too. His eyes were red from crying.

If he can not open his eyes, how he can communicate us, how he can enjoy watching movies..? Is he even cannot use computer anymore? How to maintain his QOL?
So many things are hanging over my head.

(translated by HM)

Mar 21, 2012

Movie marathon

Hajime got a nice gift from our church friend, Connie. She gave Hajime Netflix subscription of unlimited streaming for three month including four DVDs rentals. Thank you so much. Since Sunday, Hajime watched so many movies.
There are also many Japanese Anime titles (of course in English) so Hajime enjoys those Anime (Macros) as well as actions and Sci-Fi movies.
I was very impressed that he know so many movies that I don’t know. (or maybe I just don’t know at all,,,)

We choose a movie through his eye movement. Since there are so many movies, it is a lengthy work to find out the one he wants to watch. Although, if we can find the movie he wants to watch, it is nothing to me.

While he watches the movies, we put the pillow underneath for the protection of bedsores. I think it is helping a bit.
We are putting a bandage but those adhesive part sticks to the skin and that seems to hurt him. Well,,, nurse says this should work so I’m hoping it will heal soon.
He had similar things when he was at the hospital. Those adhesive are too strong and when he moves or use bedpan, it stick to those. Actually I don’t like it. Especially, when we remove it, it hurt him so much. I’ll ask Mary next time she visits.

I need to seek more info about eye gaze but since I’m with Mist, I don’t have time to sit down in front of PC now. If somebody knows anything, please let me know.

(translated by HM)

Mar 19, 2012

Possibilities Beyond the Light

Mint's housebreaking is far from over, so we still have accidents, but we are enjoying training him every day.

Please take a look at this! This stance!

Do you notice now he is standing with his foot resting on the fence wire?
I can't help but smile at this indescribable pose.
Hajime is not used to Mint yet...and it's not that we're trying to keep Mint off the bed, but I'm hoping that they will both get used to each other soon.

On Saturday, a doctor visited us. This gentleman is an ALS doctor who is very active in Japan. He had read my blog in Japan and contacted me to ask questions about Hajime's condition. He was very thorough. We finally met on Saturday. We do not know anything about ALS in Japan, so it was really good that we were able to ask him many questions.

The best thing was that he was able to give us hope for the future. Until now, I had been wondering about things like, "What should our goals be from here on?" and "How should I explain to Hajime about how wonderful it is to be alive every day?" But now I feel like the doctor has given us the key.

First of all, he said that people do not die from just ALS. He said that we do need to be careful about various infections, but having ALS does not necessarily mean you will die.
And, I had thought that the TV was Hajime's only pleasure, but the doctor said that it is also possible to manipulate a computer with the muscles he uses to blink. Hajime can still move the big toes on his feet a little bit, and so by using this mobility and the tobii function which he has, he can click the mouse with his feet. The doctor gave us a lot of information.

The important thing now is to be connected with the outside world! It is important for Hajime to not just be indoors but to "walk outside" using his computer. He shouldn't just wait for his friends to visit. He can initiate contact with them. I think that if he could do these things, his daily life will be much more enjoyable. I had been worrying about the future because he could not use his feet anymore, but I guess I did not need to worry.

I am grateful to Dr. Hirai for letting us know about all this.

Beyond the light, there are limitless possibilities. I cannot express to you how much lighter our hearts feel.

We are so thankful that God led this one visitor to us. We are very happy because we had never imagined that we would be able to meet a doctor like Dr. Hirai who is so active in ALS in Japan.

I am planning to look for simulation games and shooting games that can be done with "eye gaze". I checked around a little, and there are games that I think Hajime will like, so I will have fun looking for them.

But the games are quite expensive. I am planning to do more fundraisers for Hajime, so please support us!

(Translated by MS)

Mar 17, 2012

Bedsore Problems

I noticed it yesterday when I was giving him a bed bath, and after Mary examined him, we learned that it was Stage 2.

I discovered that the bedsores around his buttocks area had opened. I realized that that was why he had recently been asking me to put more air in his mattress.
I had been moving his legs to the left and to the right, back and forth, quite often, but I had not been putting a pillow under his bottom every two hours, so maybe that's what caused it. Or, maybe I had scratched his skin when I pulled away his bed pan (the pan we put under his bottom when he needs to do No. 2).
Either way, I must be more careful from now on.

She also told me about his nails.
She said that his nails were too long, so I should at least cut the corners for him. To tell the truth, the skin underneath his nails have started to expand, so every time that I cut Hajime's nails, it hurts him. Because of that, I was always afraid to cut his nails and I neglected to do it.

Everything was my fault, so I was really disgusted with myself.
I should be taking better care of him. I am shocked at what a terrible mother I am!
They are both serious problems...

But, I will do better from today!
I've been telling myself quite a bit....You've got to take care of him right!

(Translated by MS)

Mar 15, 2012

Radiation Treatment

Mint's housebreaking is coming along pretty well.
But we have to leave the door to the backyard open, so we have had some problems. We put a pad out in the back so he can do his business there and get in the habit of going outside. But, there have been a lot of accidents too, because we had left the door closed.

Yesterday, we went to Kaiser on Sunset because Hajime had an appointment at the hospital, and this time we went to the radiation department. Hajime has been getting Botox injections once every three months because he produces a great deal of saliva, but they say that from now on, he will not need to have those painful injections anymore. We went because the doctor had recommended that Hajime have a procedure to decrease his saliva production with radiation.

If they do the radiation treatment and everything goes well, he will no longer produce saliva. The results vary from patient to patient, but they think it may be effective for Hajime. They will do the treatment around his cheek area, and the whole procedure will be done in about an hour. I have some concerns because they will use radiation, but one side effect is that because his saliva production will be stopped, he will get dry mouth.
And, depending on where they target the radiation, he may lose the tufts of hair under his temples...

I understand that, normally, they do this procedure only after taking a CT scan and they see the patient over many visits, but since Hajime cannot do all that, they will start the radiation treatment without doing the CT scan.
We made an appointment right away, so we will have the procedure done next Wednesday afternoon. Hajime has given us his consent. I hope everything goes well.

These past few weeks, Hajime has had to use the wheelchair about once a week on average. We have gotten quite used to maneuvering the wheelchair too.
But, it takes great skill to put Hajime in the wheelchair since he has no muscles left in his whole body. It's very important that I not let Hajime see how hard it is for me. I don't want to burden him with any unnecessary worries...
So, I will have to do my best next week too!

(translated by MS)

Mar 12, 2012

Mint Arrives

Mint finally arrived at our house.
Hajime and I waited expectantly at home, while the rest of my family went to go pick him up at the breeder's house less than two hours away, arriving there about noon.

I hope he gets used to Hajime right away, but he walked back and forth on top of Hajime, biting on his trache and sniffing around. It was his first time, so I guess it could not have been helped, but I was glad to see that Hajime liked him.

I am thinking we should put something with steps next to the bed so that Mint can get up to Hajime by himself. We couldn't find anything that worked, but little by little we'll get everything set up.

Mint is not housebroken yet, so we're having a hard time right now. During the day, I'm home by myself taking care of Mint on top of caring for Hajime, but I'm managing somehow. After I give Hajime his medications, I take Mint out to the backyard for his "business".

The past few days, Hajime has been losing muscle strength, so he has been unable to call for us. He can barely push the call light that my husband made for him.. There have been a few times when we did not notice that Hajime had been trying to call us, and when we looked, we saw that his eyes were filled with tears.
It would be nice if Mint could learn to call us for Hajime.

We're going to have to work hard at training Mint!

(Translated by MS)

Mar 10, 2012

I Was Able to Relax!

Yesterday turned out to be a very busy day.
First of all, we had a Botox appointment in the morning, so we went to Kaiser on Sunset. Just like the last time, a male doctor named Dr. Chang was in charge. It is an extremely specific procedure and he gave Hajime injections in two places again. The last time it went very well, so I am really hopeful about this time too.
I was very happy that Hajime felt very little pain and that he needed injections in only two places.
This time, I was able to borrow my friend's minivan which is specially designed for wheelchairs, but on the way to the appointment, the wheelchair unlocked and moved. I panicked, but I drew from my "mother's strength" and successfully avoided a big problem. But, thanks to all that, my muscles are sore today!
I felt sorry for Hajime to make him scared, but I am glad that we were able to get home safely.

Later, three of my friends came to visit Hajime.

Toru, Luke, and Akemi are really sweet friends, and they brought gifts for Hajime and my other children too. Among them was aroma oil for Hajime and a device that emits scents with ultrasonic waves. It smelled so good in the house. Hajime is always sensitive to odors and noises, so I thought this was a very good gift for him.

And, he also got a massage, so it looked like he was able to really relax. Watching him, we were able to relax too. Toru is a pilot, and Luke and Akemi own a spa called "Rirakuen". I was so happy that such busy people would take the time to come to our house to visit Hajime.
Thank you all for a wonderful time. Please come again!

After that, Mary came for a checkup.
She said that the color and odor of Hajime's recent secretions were not good, so she took back a sample. She said she would submit it for testing.
There was an area around the trach where his skin had cracked, so we had been putting cream on it and keeping an eye on it, and it has gotten much better.
And, it looks like his bedsores are completely healed, so the only area of concern now is the redness around the heels of his feet. We were told that we needed to support his legs with a pillow and keep his heels up above the bed as much as possible. And, since it seems he has been gaining a little weight, she will adjust his feeding amount. On the other hand, we do not want him to lose too much weight, either, because he may get bedsores, so we will have to adjust with that in mind too.

It was a busy day but a very happy day...

(translated by MS)

Mar 8, 2012

Police officers visit

Yesterday, Hajime had visitors from his very special and encouraging friends, Lauren and South Pasadena Police officers! Four police offices also with K9 dog came this time. Thank you so much everyone!

Hajime did not know about this visit so he was very surprised and of course he was very happy to have them.
Monday’s visitors and yesterday’s visitors made a very happy surprise to him. Lauren even helped watering our garden this time. People help us on so many things and so many ways and we just don’t know how to thanks them all.

Hajime breathing volume decreased and got an alert this morning. Last time when we used a course of breathing medication/Tobii Neb worked very well but this time it did not worked as good as last time.
Secretion’s color and odor is not so good, which worries me. We need to take a sputum sample for the lab.

Today, I was very surprised that he was using speaking device, Tobii with Xbox controller and trying to type some sentence.
It is such a wonderful thing to try something. I was very proud of him as a mom.

(Translated by HM)

Mar 7, 2012

Many visitors

We had many visitors as they had no school today.
It was about ten people.

Thank you all for coming.
Danny and his friends, Taylor, Sean and Michael.
They are friends from school and the church's youth group.
It was really cheerful around hajime's bed first time in a long time.

We also had a doctor's visit yesterday.
It was helpful to talk to the doctor about our concerns and possible solutions in the future .

He recommended a rage motion for his stiffened ankles.
Mary will take some samples of his secretions next time as the smell/color is not very good.
He will also take some urine samples as it has been dark for the last few days.
As for his eye discharge, he will try a new medicine.
We will wait to hear from the primary doctor regarding opening his eyes that may be affected by Botox in a rare case of ALS.
In order to control his increased weight, we will try to reduce nutritions by half a can or one whole can.

I think it is great to have a doctor's visit home as we have more time to talk unlike the hospital.
It helps to remove our anxiety greatly.
One thing that bothers me is that they switch doctors frequently and it makes me feel unsettled.

To change the subject, we had an interview at home from people of Zumbathon event held at the church. My husband I talked in front of a camera and I was a bit nervous. It was very meaningful.
I am looking forward to reading their article.
Thank you Animee, Nataly and Lily for spending a long time here.

It was a long day, but it was a happy cheerful day for Hajime.

Translated by Yoko B.

Mar 6, 2012

Ankle’s Range of Motion

Hajime is losing muscular strength day by day.

Now he cannot even move and exercise his ankles much. Because of this inactivity, his ankles are getting stiff and it is imperative to keep moving around. Otherwise, they will be further fixed… Everyday, we try to move his ankles and muscular around. Hajime cannot push the call-button by himself because of this and we are thinking about the alternative way.

Also, his mouth forms more saliva. We have an appointment for Botox for this coming Thursday. The Botox is supposed to reduce saliva. Just a little more patience.

Hajime is taking more juice lately, and I think his belly becomes somewhat fat. Because the nurse, Mary, told that there was no worry about and he could keep taking juice, we don’t take this serious and just follow. Nevertheless, it becomes harder to take care of as his weight grows. I am going to ask Doctor when he visits us later today.

We will have the interview this evening. At the church we go, there will be the Zamba event for fund-raising for MDA’s ALS Division. She is the one of the members to plan and coordinate the event. We will have the interview with Hajime and hope we, as the ALS patient, can be helpful somewhat.

(Translated by YM & RM)

Mar 3, 2012

In the hands of God

 Lately, I often look back when Hajime is doing fine,, and always make me cry. Nothing goanna help looking back but I’m just keep asking “Why?”.
Hajime must thinking same way and asking “Why to me?” to himself too.

I sometime even feel sad hearing about other families go out for vacation or such…

I know that God is always with Hajime but seeing in the reality what happening to Hajime, I just can’t stop asking “Why to him?”

Few days ago, one of a visitor told us an interesting story. When she touches to Hajime, she can saw a vision. The vision was around Hajime there are so many greens and beautiful natures, and many animals were surrounded him.

Hajime might already see something like a heaven. So many people coincidentally told us that Hajime is close to God.
Because so, I know I just need to give my heart to the Lord.
I tend to see just what is in front of me but I just need to give my worries to the Lord.

Everything is happening in the hand of God.

( Translated by HM )

Mar 1, 2012

Looking for your support/ fund-raising

We just designed Pen & T-shirts with Hajime’s smiling face printed for fund-raising.

T-Shirts is available at $10ea and we have 3 sizes, M, L and LX.
The pen is offered at $5ea.

Mr. Tetsuya Kawaguchi, an illustrator, drew this. I think Hajime’s smiling face is well-illustrated.

We also accept the donation by “PayPal” and “Check”.

Please send your “PayPal” to
Please send your “Check” can be sent to the following address:
     Hiromasa Miyasaka
     1107 Fair Oaks Ave. #160
     South Pasadena, CA

Thank you very much for always being kind and supportive.
Please feel free to send us the message.

(Translated by YM & RM)