Hi I hope everyone is ok? My dad has had HD since I was 8 years old so
it has been a tough 15 years but recently it has come a lot more to
home as my partner has proposed and wants to marry but I keep asking
myself if I can put him through what might happen.....and could I give
him children not knowing if I am passing on HD again? (I have not had
the tests). My mum and dad divorced when I was about 6 years old (not
due to HD) and now my mum's house is being knocked down and as my
dad's name is on the deeds also and he is unable to sign his own
signature she could lose half of her house to the government....surely
this isn't right? Anyway, I thought I would contact people who have
been through the same thing and see if I can get any advice??

Thank you for reading,

Becca

Note: forwarded message attached.




____________________________________________________
Start your day with Yahoo! - make it your home page
http://www.yahoo.com/r/hs


[Non-text portions of this message have been removed]

Note: forwarded message attached.


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

_tara@..._ (mailto:tara@...) --- Thank you  so much! God
bless and take care!

Lori -Remember to live everyday to the fullest as if it's your  last because
you are not promised tomorrow!



[Non-text portions of this message have been removed]

Congrats on the results!!!
Most wonderful news~!!!

-----Original Message-----
From: onebighuntingtonsfamily@yahoogroups.com
[mailto:onebighuntingtonsfamily@yahoogroups.com] On Behalf Of mom71180
Sent: Tuesday, August 23, 2005 5:31 PM
To: onebighuntingtonsfamily@yahoogroups.com
Subject: [One Big Huntingtons Family] Test Results

I am writing to let you all know that I went to the Dr, today and got
my results.They were negative! I don't have it nor will I develop it
later in life.Thank you all for your thoughts and prayers as they were
heard and they were appreciated.God bless you all and take care!






Yahoo! Groups Links

Note: forwarded message attached.


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

I am writing to let you all know that I went to the Dr, today and got
my results.They were negative! I don't have it nor will I develop it
later in life.Thank you all for your thoughts and prayers as they were
heard and they were appreciated.God bless you all and take care!

Well today is my birthday,I am 25 now and I still have no test
results.I was looking foward to having something to celebrate,perhaps
a negative result.I am still getting a sitter tomorrow night though
and me and the hubby are going out.Hope everyone is doing good! God
bless!

Hello!
Get a quick glance of Healthcare News and Resources here
http://www.allinonedirectory.info/HealthUpdate/
Take care,
Kate



__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

[Non-text portions of this message have been removed]

For those interested:

http://www.ninds.nih.gov/apps/disorders/brochure_order_form.asp?
PageTitle=Huntington's%20Disease

for those of you who have lost a loved one:


_Eternal  Life Skills - Heaven Questions_
(http://www.eternallifeskills.com/heaven_questions.htm)


Lori -Remember to live everyday to the fullest as if it's your  last because
you are not promised tomorrow!


[Non-text portions of this message have been removed]

Hello!
Look at this healthcare information directory.
URL : http://www.hi-fiweb.com/users/anusha/
Cheers!
Amitha

Jennifer,

Hi! Thanks for writing me.I am sorry to hear that your Husband  is showing
signs of Huntington's especially at such a young age.But you are  right,God will
see us through it all.I know what it's like to worry about your  kids
too.They want to know everything and how do you tell them? Mine knew Great 
Grandma
was sick and my older son knows that I went Friday to have blood  drawn.He
asked me I f I had it did they need to stay away from me? Kids are  so funny
sometimes.I hope that I don't have it so I don't have to  worry about them and
that
my mom won't necessarily have it either. Please  feel free to write me as
often as you'd like.It's great to have friends that  know what you are going
through.God bless you and take care.

Lori

  (http://www.tickercentral.com/)

  (http://www.tickercentral.com/)

  (http://www.tickercentral.com/)









[Non-text portions of this message have been removed]

Hello Lori,
My name is Jennifer and I am so sorry that you are going through this.  My
husband is also showing signs of huntington's. We have not had testing done yet
so I don't know how long it takes. We have ond little boy and I worry all the
time about him.  My husband and I are 29 so he is showing signs early.  his
father passed away 4 years ago of huntington's.  We plan to have my husband
tested soon.  I know that nothing I can say will make this better but we find
comfort in God.  I don't know what you believe and I don't want to preach to you
but it makes us feel better knowing that we are not walking this road alone and
that when we feel that we can no longer walk under the weight of this burden
that God will carry us through.  I cannot imagine what you are going through but
I understand what your husband may be feeling. He proably doesn't want to face
the possibility of losing you to this disease but he dose need to talk to you
about it. There are alot of great support groups for people with hunnington's
and their family.  I know that I had a hard time talking to my husband about
hunnington's but he came to me and said that he really needed me to talk to me
and I had to get over what i was feeling because no matter how i felt it could
never be as bad as what he was feeling.  I am very scared for our future and I
know that you are too.  Please feel free to email me back if you want to talk
again I will do whatever I can. I will be praying for you.
Jennifer

Hi everyone! I just joined.Let me tell you about myself.My name is
Lori and I am 24 years old.I will be 25 in August.I have 2 beautiful
boys ages 3 and 7.My grandmother passed away 6-1-05 of this horrible
disease.She was 69.My mother may have it(God I pray she doesn't)
because she is starting to show some signs like balance problems and
such.Okay,one of my aunt's have it and we think another one may have
it.My great grandfather and great aunt(2-05) also passed away of this
too.Also 2 of my 2nd cousins have it.Anyhow,I got my blood drawn today
for Huntington Disease Genetic Testing  and sent to a lab in Baylor
Texas.I am praying I don't have it but Deep down I know me and my mom
do.If it comes back positive then I know my mom has it since it
doesn't skip a generation.Then I worry about my children having it.My
mother and children are my world and don't want this to be true.Does
anyone know how long it takes to get test results back?I'm sorry to
ramble on but I need to talk to someone as my Husband just don't
understand.Please feel free to comment and/or e-mail me.Thanks!

Just to answer a few of the hundreds of emails I received, the company
http://savemorethanever.com said they will extend the special offers through
Monday 7/18/05. Their "new and improved" wholesale mall/tv superstore they will
include free with all orders other than single coupon book purchases. Since I am
not part of their company please direct all future questions to them and not me.
Thanks!

a story about stem cells is a story about hope. which my dictionary
tells me is to cherish a desire. for paul gallagher a 26 year old
from edinburgh he found out 5 years ago he had huntington's disease.
huntington's is a genetic condition that attacks nerve cells in the
brain. usually sufferers find out between the ages of 30 and 50 that
they have been given a death sentence. but dispite being so young
paul is already showing some of the classic signs of huntington's.
uncontrollable twitches and forgetfulness. huntington's has plagued
pauls family for generations. he was 8 when his mum hellen first
found out she had inherited huntington's from her father.for more
than 10 years paul helped nurse his mother through the condition. his
mum was only 42 when she died just a couple of months later pauls
uncle who also had huntington's died too.the symptoms can vary but
usually sufferers only have around 15 to 20 years to live after
diagnosis. pauls sister has just had the test to see if she has the
hd gene and it was very sad news for her and her  family. she had it
too.but dispite lots of research into the condition there still no
sign of a cure.however a private american foundation (the high q
foundation) dicided to sponsor the huntington's project with over
$57.000.000. the euro-hd network aims to provide a platform for
professionals and people affected by h.d to assist working together
throughout europe. it aims to facilitate natural history studies and
interventional trials meeting high standards thus helping on the road
towards a cure for h.d. paul is among the first in scotland to
registar for euro hd this month.but i think stem cells will bring
hope and not only to people with hd. if debilitating illness can be
conquered with stem cell therapy why is it so controversial. isn't it
a medical miracle to be celebrated ? yes and no. though we stand on
the threshold of the realm of possibility we are not yet inside it.
the door opened by science include one marked moral dilemma. many
scientists believe that stem cells from human embryos offer even more
hope for cures than the ones found in bonemarrow. yet to destroy
embryos to create stem cell therapies is an unforgivable obstacle for
many people.hope must break through the rhetoric. my own hope the
disire i cherish is that we can freely discuss the complex sometimes
uncomfortable,friction between science and ethics. that is what this
stem cell story is about.
http://groups.msn.com/scottishhuntingtons

I have to admit, just like others I was very suspicious of this woman  that was
boasting so much about the company at http://savemorethanever.com I figured that
she must being making something (money, etc.) by posting about this company. So
I did my research and very surprisingly there is no way that she would make a
cent by talking about this company simply because she doesn't know who is
reading her messages and moreover who is signing up. Then I realized this woman
is making a sincere recommendation so I signed up and sure enough the savings
that I have experienced are even more than what she said. I am sorry for having
doubted your intentions and want to thank you for this golden tip.

Some of you may or may not have heard that Karen Milek was in an accident
on Sunday.



She fell from a horse and hit her head, while visiting her cousin in
Syracuse, NY.  She suffered a brain injury and has been in Intensive Care.



I just returned from Syracuse and I am glad to report that she is doing much
better than originally
expected.  It was such a relief to see her.  Sunday evening they were
telling me they didn't know if she would make it through the night, and
yesterday she was able to sit up and drink part of a smoothie.  The doctors
wanted her to try to walk with the physical therapist this afternoon.  Her
recovery will take some time and readjustment.

Her brain has been bruised in two places.  Originally, the neurologists said
that she may need brain surgery, but now they have decided to allow the
blood remaining on her brain to dissipate on its own.  She is having a
little trouble moving her right leg because the injury is on the left side
of her head, but it is still to early to know what are long term affects and
what will remedy itself once the swelling subsides.  Her long term memory is
good, but her short term is not its best.  There has been talk of 24-7
nursing care after she returns home, as well as physical and occupational
therapy.  Her close friends and family are all preparing to assist her at
home when she returns.

Pam, Brenda, and their brother Paul are all staying with her in Syracuse
until she is released from the hospital.  She was to be moved from ICU to a
regular room this afternoon.  The doctors say she will need time to rest and
recover.  They will continue to assess the extent of the her injury as the
swelling decreases.  It is difficult for them to give any definite answers
right now, but the prognosis has greatly improved each day since the day of
the accident.

Karen is the strongest person I know, mentally and physically ... as with
most things she does in her life she continues to amaze the doctors with her
progress.  I have been passing along all the prayers and well wishes to her
family and friends in Syracuse.  They are so thankful for the support of the
HD family.

They hope to release Karen from the hospital by Monday, but I will try to
keep you informed when I talk to Pam tomorrow.



Best,
Michelle L. Pattee

Send cards or well wishes to:



State University of New York
Upstate Medical University
750 East Adams Street
Syracuse, NY 13210-2375

315-464-5540







[Non-text portions of this message have been removed]

Absolutely one of the most valuable television spots I have ever
witnessed. The show began by stating: Did you know that you can
legally stop paying for everything in the supermarket? You are about
to learn some of the longest held secrets in our nation's history!
Rather than get into every detail, the company has a website at:
http://www.wrldofproducts.com - as soon as the show was finished I
went to the website and checked out the company's program. The next
day I called the better business bureau and spoke with Paypal (the
company that has verified this company) They checked out on all
fronts so on 6/20/05 I ordered their program. On 6/27/05 I received
the complete sampler package and decided to try it out immediately.
The results were astonishing! The very first time I went shopping I
picked up $219.61 worth of goods and only had to pay $12.88! I could
not believe my eyes! This program is indeed worth its weight in gold!!

have a look at our scottish group
http://groups.msn.com/scottishhuntingtons

Yeah I know, I never thought this stuff would work either, but honestly I stand
corrected. This place http://www.pickuppoint.info/alta is actually very awesome.
I hooked mycam up and within no time I was talking to a few great ladies over
it. Anyway, I recommend it to everyone here!

Hello,

I am new to this group and thought I'll share the Health Listing of
hi-fiweb.
To get the complete health listing you may go to
http://www.hi-fiweb.com/health

Good day!
Kathy

hello. im new

I am 23 years old and for some reason i think i may be at risk or have hd.
There is no history of this in my family though but i have read on different
websites that in some cases people have developed hd with no family history and
this is due to a loss of contact through adoption or because previous
generations who had the hd gene died early from other causes before showing
signs of it.

My mum and dad are both 43 years old.
My mums mum is 62 years old and my mums dad is 65 years old.
My dads mum is 68 years old and my dads dad died aged 70 from cancer
My dad has a brother who is 48 years old and 2 sisters who are 41 and 45 years
old.
My mum has 2 sisters who are 36 and 42 years oild and another sister who died
aged 32 from cancer.

Now i was wondering whether my dads dad who died aged 70 from cancer could have
maybe had the hd gene but died before showing symptoms? i know 70 years old and
above is not a typical age to develope hd as i know it normally develops between
the ages of 35-50 years old in most cases.

But i never noticed anything unusual when i saw him afew years before he died,
but if he did have the hd gene then surely my dad or one of his brothers or
sisters would be showing symptoms by now?

Is it usual for a child to show signs and symptoms of hd before the parent does?
it looks like my mums mum and dad dont have hd as they are in their 60's and
have no signs and my dads mum is 68 and shes fine as well so as long as my dads
dad didnt have the gene i should be fine but obviously no-one can know for sure
if he did chances are that he didnt have the gene.

None of my other grandparents are showing any unusual signs and they are all in
their mid 60's so does this mean i am totally safe and will not ever develop hd?

I have also read that in very rare cases the CAG count in males can expand so my
dad could have a CAG count of say 30 and could pass on a higher CAG count to me
of around 45 so that means i could develop hd but does this ever happen or is it
very uncommon? i have read that in 97% cases there is a family history when
someone develops hd and only 3% where there is unexplained hd due to adoption or
previous generations dying early before showing symptoms.

I just want some opinions on all this what i have said and whether there is any
chance that i may have hd at all.

Am i too young to develop hd? as im past the age to get juvenile hd but ive
never seen anyone on here at my age devleop hd.

These are the symptoms that i currently have:-

Feel tired all the time, pins and needles alot of the time in different places,
lack of motivation dont want to do much, shaky hands, sometimes get slowed or
trouble thinking about something, short-term memory lapses and forgetfulness,
Some slight 1 second sort of jumpy movement in my arm and leg but i dont get a
chance to try and control this as it lasts for a second just alittle slight jump
i can hardly notice this maybe this is due to depression or stress or my
anti-depressants that i am on.

I have been suffering from depression, anxiety and panic attacks for around 8
months now and i am currently taking anti-depressants for this which have helped
with my panic attacks certainly but i was wondering whether anxiety depression
or the antidepressants could cause the symptoms that i am having or whether it
is the start of hd.

I know you get alack of conentration, stumbling and clumsiness, behavioural
changes, depression and slight uncontrollable movements in the early stages of
hd but i have to be honest, my concentration must be ok as i have been
decorating 6-7 hours a day recently and on the pc for a good 4-5 hours, i dont
get no uncontrollable movements i dont think sometimes my finger or arms or legs
might slightly move or jump for a second but only slightly i dont know if you
could class that as uncontrollable movement, i dont stumble and im not clumsy,
my behavioural seems ok, but i do have depression and i know this is an early
sign of hd.

I wouldnt be able to get tested for hd as there is no history of it in my family
so doctors would say there is no reason to test me and they would probably laugh
at me.

I would really appreciate some good advice and for someone to tell me the facts
and explain questions that i have asked, i really do hope that i am not at risk
for hd and i hope i dont have to worry about it again.

Thank you for reading this, take care everyone.

Karl.




Send instant messages to your online friends http://uk.messenger.yahoo.com

[Non-text portions of this message have been removed]

sarah,

i completly undersand how you feel me and my younger siser both have
it i had prayed for her not to have and for me to have when he didn't
listen so i gave up on the whole thing

terri

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.
> >
> >
> >

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.
>
>
>

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.

Thanks for the info Kat,, this just stinks!~  a Parent SHOULD BE ALLOWED to have
their child tested just they can have their child tested for ANY OTHER disease.
Sorry to hear about your positive results.  ((((((((((( Kat )))))))))))))

terrijerome82 <no_reply@yahoogroups.com> wrote:
hi again my mom got it court ordered because they kept telling her i
was a delinquet and all these other things that were not true they
kept telling her that huntington's is only in adults i had ended up
in jail for a while plus i was showing signs when i was 13 i do live
in MA the labs and the doctor were against iti had anted to get
tested when i first knew about it







--- In onebighuntingtonsfamily@yahoogroups.com, Pat Dushkewich
<mrsdus@y...> wrote:
> hmmmmmmmmm I find it very interesting that you're Mom had your
testing court ordered.  I wasn't aware that could be done.. do you
mind telling me if you live in the states or not?? I think parents
SHOULD be able to have their kids tested if they want to, but it's so
difficult.  Was it the labs or Dr that wouldn't test you?? Or were
you against it?? Just curious, Thanks, Pat
>
> terrijerome82 <no_reply@yahoogroups.com> wrote:
> it takes a while to accept this disease i know i was diagnosed at
17
> my mom had it court ordered i know it sucks but if you keep a
> positive attitude it will help
>
> sincerly
> terri
>
>
>
>
>
>
>
>
> --- In onebighuntingtonsfamily@yahoogroups.com, "kat_artis"
> <dave@d...> wrote:
> >
> > Hi I'm Kat I received my positive test results in Dec04 and am
> trying
> > to get on with m life.  The past couple of months haven't been
easy
> > but I'm finally getting there.  I'm not new to this disease my
Dad
> > was dignoised when I was 11.
> >
> > Just really wanted to say hi
> > kat
>
>
>
>
> Yahoo! Groups SponsorADVERTISEMENT
>
>
> ---------------------------------
> Yahoo! Groups Links
>
>    To visit your group on the web, go to:
> http://groups.yahoo.com/group/onebighuntingtonsfamily/
>
>    To unsubscribe from this group, send an email to:
> onebighuntingtonsfamily-unsubscribe@yahoogroups.com
>
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
>
>
>
>
> Pat Wolf
>                                Harrison Twp, Mich (16 NE of Detroit)
>                                          CURE HD
>
> ---------------------------------
> Do you Yahoo!?
>  Yahoo! Mail - Find what you need with new enhanced search. Learn
more.
>
> [Non-text portions of this message have been removed]




Yahoo! Groups SponsorADVERTISEMENT


---------------------------------
Yahoo! Groups Links

    To visit your group on the web, go to:
http://groups.yahoo.com/group/onebighuntingtonsfamily/

    To unsubscribe from this group, send an email to:
onebighuntingtonsfamily-unsubscribe@yahoogroups.com

    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.




Pat Wolf
                                Harrison Twp, Mich (16 NE of Detroit)
                                          CURE HD

---------------------------------
Do you Yahoo!?
  Yahoo! Mail - Find what you need with new enhanced search. Learn more.

[Non-text portions of this message have been removed]