Our family went to a trip this week.
While he can move around... I know I am rushing. I want Hajime to do
as much as he can do now. But my restlessness may cause his heart
anxiety. So, as usual, the same as everyday we had....
During this trip, we went to the bowling. My son chose a smaller ball
because he could not use his left hand. Put it on his right hand, hold
it and throw it by his right hand... He seemed not being troubled
about this and enjoyed it. This sight does not leave my eyes.
I want him to have more joyful and playful time.
But one thing I care.
It is how he speak.
His disease progresses again. How he speaks is similar to a drunker's
way of speech. This has been noticed since this August, but by now
sometime we even do not understand what he says. I think my son is
afraid of admitting it by his own.
But he said this.
"I am talking as usual. But it sounds strange."
He noticed it by himself. He has told the saddest thing for him is not
being able to talk to. Now it comes true. It must be difficult for him
to accept the reality. I feel so sad seeing this. He is a boy, and
teenager. My son cannot talk straight and express things. He really
needs care for his heart.
This wednesday, he will have a counseling session again. I hope he can
express himself even a little bit.
It must be hard for him not being able to talk well...
Please God, do not take his words away!
Translated by STK
Nov 29, 2010
Nov 21, 2010
Nov 20, 2010
The 1st ALS Clinic
After we got announced of Hajime's ALS, we had the first ALS Clinic.
My son has been to counseling and he asked something to his therapist.
It was about his schooling. Because of ALS test, he had many absented
and belated days to his school in this few months. He worried about it
a lot.
The therapist informed it to the ALS main doctor of Hajime in the
hospital, so this time we could get earlier examination.
This ALS clinic is having many doctors of many specialities come to
one room to have examinations at once. By now, he had to skip his
classes many times, but we can finish these examination at one time.
It is really thankful for us.
The first clinic was with a Speech Therapist, a Physical Therapist, a
lung specialist, and an ALS doctor.
The Speech Therapist made Hajime eat and drink to check Hajime's
tongue movement. As my son already got some problem with talking, I
was worrying about this check, but so far, so good. When he got worse,
he has to talk with a machine.
The Physical Therapist checked Hajime's arms movement and muscle
conditions. He instructed us not doing rehabilitation like we have
done, but to try stop his arms and finger joints becoming hard because
of being unable to move. If the muscle does not move, it will be
harden gradually and will cause pain. Already my son has some pain
around his left shoulder. So we decided to let his arm move as much as
possible.
The lung specialist checked his breathing capacity. This is checked by
inhale and exhale with using a machine. Comparing to the usual
youngsters around his age, the rate was a little bit lower but so far,
no problem. This is the most significant issue we worry. We do not
know until when he can make his best, but we rely onto our God.
The ALS doctor gave us the similar instruction and explanation since
we had the announcement soon before. And he told us that there are
some possibility of medicine trial. This trial needs enough breathing
capacity. If the ALS progressed, it will be difficult to take. And
later we have heard, if we take this trial, the medicine to slow the
progress Hajime now has cannot be taken at the same time. The Trial
medicine is the infusion type, so it will be also difficult for him to
move. It is pity for Hajime while he can move around, but it will be
too late to take when he is no longer able to move. What an extreme
choice.
Also we asked about Kennedy Disease. Now, around 1% potential to this
disease. This is heritable disease and having medicine to treat it.
But in this clinic, the doctor told us Hajime cannot take it. He
explained us clearly. This disease has no difference from ALS other
than slow progress. We had although it was 1%, had some expectation of
cure. So when we got to know this, we had a huge shock again.
The result of test comes end of this month.
Anyway, the given information from ALS specialist is very heavy on our
shoulders. We had a contact from ALS association. It is good to have
some backup from those associations. With getting backups from
everyone, I am hoping doing many things to my son, and keep watching
Hajime over...
The next clinic is going to be 3months later, around January.
Translated by STK
My son has been to counseling and he asked something to his therapist.
It was about his schooling. Because of ALS test, he had many absented
and belated days to his school in this few months. He worried about it
a lot.
The therapist informed it to the ALS main doctor of Hajime in the
hospital, so this time we could get earlier examination.
This ALS clinic is having many doctors of many specialities come to
one room to have examinations at once. By now, he had to skip his
classes many times, but we can finish these examination at one time.
It is really thankful for us.
The first clinic was with a Speech Therapist, a Physical Therapist, a
lung specialist, and an ALS doctor.
The Speech Therapist made Hajime eat and drink to check Hajime's
tongue movement. As my son already got some problem with talking, I
was worrying about this check, but so far, so good. When he got worse,
he has to talk with a machine.
The Physical Therapist checked Hajime's arms movement and muscle
conditions. He instructed us not doing rehabilitation like we have
done, but to try stop his arms and finger joints becoming hard because
of being unable to move. If the muscle does not move, it will be
harden gradually and will cause pain. Already my son has some pain
around his left shoulder. So we decided to let his arm move as much as
possible.
The lung specialist checked his breathing capacity. This is checked by
inhale and exhale with using a machine. Comparing to the usual
youngsters around his age, the rate was a little bit lower but so far,
no problem. This is the most significant issue we worry. We do not
know until when he can make his best, but we rely onto our God.
The ALS doctor gave us the similar instruction and explanation since
we had the announcement soon before. And he told us that there are
some possibility of medicine trial. This trial needs enough breathing
capacity. If the ALS progressed, it will be difficult to take. And
later we have heard, if we take this trial, the medicine to slow the
progress Hajime now has cannot be taken at the same time. The Trial
medicine is the infusion type, so it will be also difficult for him to
move. It is pity for Hajime while he can move around, but it will be
too late to take when he is no longer able to move. What an extreme
choice.
Also we asked about Kennedy Disease. Now, around 1% potential to this
disease. This is heritable disease and having medicine to treat it.
But in this clinic, the doctor told us Hajime cannot take it. He
explained us clearly. This disease has no difference from ALS other
than slow progress. We had although it was 1%, had some expectation of
cure. So when we got to know this, we had a huge shock again.
The result of test comes end of this month.
Anyway, the given information from ALS specialist is very heavy on our
shoulders. We had a contact from ALS association. It is good to have
some backup from those associations. With getting backups from
everyone, I am hoping doing many things to my son, and keep watching
Hajime over...
The next clinic is going to be 3months later, around January.
Translated by STK
Nov 19, 2010
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