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@...>
>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.
>
>
>