Hi Henry,
What do i believe in spiritually? Nothing, i believe in
nothing. I don't believe in God, i've been an athiest for years now.
Its good you have christ in your lives, people have a right to
believe in what they want and i respect that.
In my oppinion if God existed, my mum and uncle wouldn't have this
terrible disease. And me not inheriting the disease was science,
nothing to do with anything else. Sorry but this is what i believe.
Its good that you have such a positive attitude, wish i could be
more positive about things. Alot of the time i feel anger, angry that
this disease is in the family. I wish i had a magic wand so that i
could make this disease disappear. On a positive note though, i am a
stronger person because of all of this. I have to stay strong for my
mums sake. I still cry at times, i think you have to, but i cry when
i'm alone, when no one is around to see me.
Yes your're right, i shouldn't feel guilty, i can't help it
though. Some days i wish i had been tested positive instead of my
sister. That way she wouldn't be suffering. Then i look at my
daughter and realise i should be thankful, she is free, she won't
inherit it.
Thank you for your reply, it meant alot to me. I hope you and your
family stay happy, you deserve it.

sarah

In onebighuntingtonsfamily@yahoogroups.com, "Henry Butcher"
<hbutcherjr@h...> wrote:
> Sara, you should not feel guilt for your not having HD. This was
God's
> choice. Thankfully you have been spared wich makes you available
to be an
> advocate for you mom and your sister when the time comes. Your mom
needs to
> be able to live her life to her fullest potential. As of right now
there is
> no cure only palliative treatments to manage the symptoms, some of
wich
> could help your mom with her anger. I don't know what you believe
> spiritually but for me I believe in Christ. My mother in law has
HD and she
> is deteriorating quickly. That means my wife has the potential to
get it
> also along with our 4 children. My wife struggled alot and still
does to
> some degree. I have always said that HD does not have to be a
horrible
> monster. And with Christ in our lives it is not. Don't get me
wrong HD is
> a difficult and emotional disease to deal with but through Christ
it has
> been a blessing also. People die from all kinds of reasons some
more tragic
> then others, but as christians our Hope is Christ for through him
we recieve
> eternal life. Through eternal life we are made new again. No more
sorrow,
> no more pain, and no more suffering. We have a peace in knowing
that in
> Heaven we will all be made new. We all suffer in life and all for
different
> reasons. some are made stronger to carry the others through,
sometimes we
> suffer so we can help someone else later, but we all suffer to lead
us to
> the Lord. without him we have no true strength. The path we chose
when we
> suffer decides if God will be glorified or not. if we depend on
Him then he
> will be glorified and through his glory we are given strength.
strength
> that surpasses all understanding, strength that keeps us living,
strength
> that carries us through. Love and remember your mom for who she is
and was,
> not for what HD has done. HD is not who she is at heart and
spirit. It
> breaks my heart that she must suffer but you must remember who she
really
> is. We have come to accept our fate with HD and whatever path it
may take
> us. We can now enjoy our time with my mother in law and even
laugh. We
> have left the life of being victims and joined the life of
fighters. We
> find it a great honor to care for someone who gave so much to us.
The worse
> she becomes the more we can give. This has become a blessing for
our
> family. At times we laugh and at times we cry, and in all times we
rejoice
> because we know that in the end our reward will be that much
greater. It is
> only natural to care more and appreciate more the things we work
for. I
> look forward to the day when my family will all be together in
heaven and we
> will all be made new, never to suffer again. I hope you might find
some
> encouragement from what I have said. We will pray for you and your
family.
>
> God Bless,
> Bill ><>
>
> >From: "sarah" <sarahshore6@m...>
> >Reply-To: onebighuntingtonsfamily@yahoogroups.com
> >To: onebighuntingtonsfamily@yahoogroups.com
> >Subject: [One Big Huntingtons Family] HI I'M NEW
> >Date: Sat, 12 Mar 2005 20:52:46 -0000
> >
> >
> >Ok i'll tell a bit about myself. I'm 28 years old,married and i
have
> >a 3 year old daughter. I have a sister, she is 26 years old. My
> >sister tested positve for H.D and i tested negative.
> > For years me and my sister knew there was something wrong with
our
> >mum. She changed, she got more angry, she walked differently,
> >hesitated when she tried to pick things up. All this time we didn't
> >know what was wrong with her.
> > We found out 3 years ago that there was H.D in the family. Our
mum
> >told us this herself, she said that my uncle had it and she thought
> >we should know. We asked if it was hereditory, she said yes, but
her
> >exact words were " you two are ok, u won't get it, because i
haven't
> >got it". We knew she had got it though, she had all the classic
> >symtoms. We didn't argue with her at the time, we were too scared
to.
> > Me and my sister decided to have the test done, we needed to
know.
> >Waiting for the results was agony though. I was negative but my
> >sister tested positive. It was heartbreaking seeing my sister cry
the
> >way she did as we are so close. Don't get me wrong i was relieved
to
> >be negative, mainly for my daugters sake. For 3 years i have had
such
> >guilt because i was negative, i think this has been a main factor
in
> >why i suffer with depression.
> > None of the family know we had the test, including our mum. My
> >sister just doesn't want anyone knowing and i have to respect her
> >decision. Sometimes the secrecy gets to me though.
> > My mum is in denial, she won't admit shes got H.D, we tried
> >confronting her about 12 months ago but she still insisted she
hadn't
> >got it. We have to stand by watching her get worse, we are
powerless
> >to do anything.We have been told that when the time comes and she
> >can't look after herself, we'll have no choice but to get her
> >sectioned. Every time i see my mum shes getting worse, shes very
> >unsteady, her speech is terrible,she chokes and has trouble
> >swallowing. Two days ago she fell down a few steps and sprained her
> >ankle.
> >At times i feel so alone, like i have no one to talk to. I can't
talk
> >to my mum for obvious reasons and i don't like raising the subject
to
> >my sister because of her positive result. Every now and then i
have a
> >cry, it makes me feel better, letting my emotions go
> > I need help, i don't know what to do about my mum. Should i try
> >confronting her again? Or let her carry on living her life till she
> >has no choice but to go into care? I'm so scared of confronting her
> >though, afraid she will turn on me or worse never speak to me
again.
> >
> >
> >