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Messages from JHDN friends 

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KimMoe Miho Kaori Setsu Shuko

 

    Well, many things have happened to me, Kim, and now I am a divorcee with two kids.
The younger one, 8-year-old Tom, had quite suddenly started to be ill and his
condition got worse very rapidly since May 1999. At first he was well enough
to run around, but now he is completely bedridden. From the start, since he
was small, I felt he was a little backward, but for outsiders he looked
pretty normal. So he entered the normal elementary school. But in the same year
during the summer vacation, Tom had an epileptic fit for the first time, and
since then, his condition got worse and worse, with frightening speed.
I had no idea what was going on, and I looked after him day and night. My
ex-husband didn't even lift a finger to help. even when our child was having
a fit. It was all the same thing whether we lived with or without this guy,
since he never helped me, so I divorced him---Well, there were some more reasons.
Like his domestic violence. Such awful things!
Later on, Tom changed to a school for handicapped children, and he did his best.
but it got to the stage that his shudder and involuntary movement got so bad
that he couldn't walk by himself any more.
To find out what was really wrong with him, I took him to the hospital, where
we were diagnosed as HD. That was last November.
After this diagnose, I realized that I couldn't look after him by myself, so
that now he is being looked after in the nursing center for orthopedically
impaired kids since last April.
I feel all my tears have now been drained out, so from now on I would like
to keep going only ahead, rather than looking back. Tom's HD won't get any
better by my just "worrying", the treatment is given only for the temporary
measure, as his symptoms change.
Crying and shouting ain't gonna change anything! You'll never know, a miracle
might just happen! We might discover some fantastically effective medications!
Rather than being miserable, I want to be a cheerful Mum in front of my
child, so I try to make him laugh. I heard that laughing is good for HD kids.
Tom laughs a lot. When he smiles, he is so cute! Now his condition seems to
be more stable and developing slower, despite of the rapid decline in
the beginning.
At the moment, eating is proving to be difficult. In the care center Tom
can eat sitting upright in his wheelchair with the help of these marvelouss
nurses who are so good to him. But at home, I can't feed him unless he is
lying down because his meals drips down from his mouth.
Today Tom is here with me, spending the weekend at home. I am the
breadwinner of my family, so I have to work, and that means I pick him up
from the care centre after work. I'm sure I'd be happier if the place was a
little nearer than where it is. The whole journey is about 100 km.
This week was a bit different from the normal routine, so I picked Tom up
yesterday. He's going back tomorrow. I gotta go work straight after that!
Don't you think, that no matter what, since we are given the chance to be
alive, it's better to have as much fun as we can? Albeit Tom has become like
this, I take him out to play, or to restaurants,while being careful not to
stress him out.
It must be so hard for those of you who take care of your loved ones at
home. My heart goes out for you. And I hope we shall be friends.
    

 


 

    I am 38 years of age, married with a daughter who is at the elementary school.
My father was about 50 when he started to be ill from HD, and 17years have
past since then. He is now completely bedridden, being looked after by
visiting nurses, visiting bathing facility service, home helping service and
respite care services, day by day.
The other day, his urine started to contain traces of blood, which led
him to be hospitalized for an operation. He was diagnosed as suffering from
malignant tumor in his bladder. The tumor has been removed as much as possible,
but they told us that a risk of reappearance still remained. As you know, it
makes it so difficult to carry out any check-ups and test when the patient has
so much involuntary movements, so as the result my father's operation was a bit
of a gamble. Despite the risks we had to take, his condition is now more or
less stable. He is so resilient! That's the important evidence that he is MY dad!
I've read Kim's e-mail. I am so surprised to hear that it is her young
son who is already affected, for I assumed that HD started only at one's
midlife or later. I am lost for words when I read her mail and think how
terribly hard life must be. But children are amazing, aren't they? I could feel
that Tom was giving his Mum so much energy for life. It's true that there is no
cure for HD at the moment, and we have treatments and medications for relieving
each symptom. But I say never EVER give up! We'll never know what kind of
miracle is at hand in this life!
Also, I think it's very true about laughter being the best medicine of all.
If you like, I can show you our very famous and ridiculous joking techniques in
our area, Osaka and Kansai region, to assist you to laugh heartily! As I always
act as a comedian, my neighbors affectionately tell me that I am so happy-go-lucky!
Maybe your son will have fun.
There is my father, me, and my daughter. I never try to deny that linkage:
I never did, and never will -whether we have HD or not is not important- this
linkage itself has given me my life.
Well, I think it's enough for today, by for now, but hope to talk to you soon.
    

 


 

    Welcome to JHDN from Miho!
Hi, I am an at-risk woman, Miho.
I am happy to contact you here. I have been waiting for this website for a long time,
longing for discussing on HD with you.
I hope isolated HD families could be tied with JHDN website.
Thinking about HD is ONLY one step to think about your future. But this step
might make your life more significant and fruitful.
    

 


 

    Hi, guys! I am a president of JHDN, Kaori.
Since 1994, I have involved with work for setting up
a new association in Japan. Those years were great tough for me because I was alone.
But I have joined IHA meeting twice, Sydney and Den Haag, where I got a lot of
energy from many wonderful guys from all over the world. The IHA meeting is like my home.
Last April, JHDN officially started. We issued a newsletter and started our website
here. HD families now contact each other and discuss by a mailing list. Our trial has
just started. However, we believe ourselves and our future.
    

 


 

    How are you guys, this is Setsu.
How are you doing? I am teaching for students who want
to be nursery school teachers, and helping JHDN activities.
JHDN could start as a WWW based self-help group. What will happen next?
It's entirely up to HD families, folks!
         

 


 

    Hello Everyone, I am Shuko.
I live in London. A friend of mine in Japan died two years ago, from HD.
I help translating the Japanese section of the JHDN website into English, to
open up our world and communicate with you. It's my dream to see Japanese HD
family reaching out to the world, and find you among their friends.
         

 


 

 

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