I'm so sorry to hear about your news. I agree, HD sucks and on so many levels.
No part is good. I just recently found this group also and just hearing and
knowing other people are going through it does help. It sounds like your mom is
actually doing quite well with the disease. I know you say you don't want to
live a life like hers but it is a life and I just keep praying a scientific
break through will happen and the longer we and our loved ones stick it through
the better chances we have.

  Jacey is an inspiration, thank you for your words and strength.

Also, my husband, like Patrick takes Provigil as well for his energy. He is a
completely different man with out it. It helps him tremendously. With out it he
would sleep all day.

We went in knowing full well the impact the diagnosis could have on our lives
(well maybe not fully but close) and that was after many counseling sessions and
sleepless nights contemplating if we wanted to know. I'm angry for you they
didn't explain better at the hospital or give you time to sleep on it AFTER
getting out of the hospital. I'm so disappointed in our health care community
and their lack of knowledge in this disease. Please stay strong.


--- In huntingtonsdiseasesupportclub@yahoogroups.com, "ben100110"
<ben100110@...> wrote:
>
> Hi,
> I'm 34 and I have Huntingdon's disease. It sucks. I just receive the diagnosis
last month and I can't conceive that I have this illness. I'd like to cry every
day. I don't know what to do to stop being worried abot the disease. I have
short-term memory problems and I need prosthetic to help me walk correctly. I
often said to myself "you're not alone other people are living the same thing
but all I have read on the Internet about this disease and people like me who
have it it helps me to hear their stories and their hints are very good but at
the end I'm with myself and I need more than that. It's because if it was to be
done again I wouldn't want to know the diagnosis (I was in a hospital for a
depression and they ran the test on me because it was my mother's illness I said
yes even if they didn't explain the consequences of saying yes to me and I think
now that I should have said no because now it's worse : I have suicidal thoughts
and I don't want to do anything because everything seems pointless to me. I will
see my neurologist for the first time december 8th. I will also see a support
group beginning december 9th.
> Take care everyone,
> Benoit
>

but there are still people in there at present.

Thanks to Kath, Letitia, Matt, Pam, Mia, Jen, Lynne, Jacey, Kayleigh, Teresa, Susan, Ben, Patrick, Destiny, Kerry and Carolanne for your attendance today. It was lovely to meet the new people... we look forward to getting to know you and helping in any way we can.

Wishing everyone the best weekend possible,

Love & hugs,

Sue & Kelly

Thank you Lucy and Jacey for your answers. I live in Quebec city Canada. I feel
like i'd rather have a terminal cancer right away so it could kill me very soon
because  if I'm like my mother she has Huntington and she's 64 and she can walk
with the help of someone, she can talk (but it's hard to pronounce), she's
dependable of others to take a bath or to eat, she has no teeth and she has
chorea but her memory is still good. I hope that she will be fine like that a
long time. But for myself I don't want to live a life like hers I don't want to
depend on someone and to be diminished by the  disease in a long period of time.
If I could chose I would chose terminal cancer over Huntington. I have been
depressed in my life but because of this disease I am now in a place darker than
I have ever been that I never experimented before.I try to exercise at  the gym
every day because I feel very good after. But these times I sleep a lot on the
morning, in the afternoon I go to the gym and if possible I don't take my car
but except that everything seems pointless. I only like to eat so in the evening
I watch t.v. with something to eat. I was not like that before but it's since I
know the diagnosis it makes me depressed and I live alone in my appartment so I
feel alone. I pray God that everything will be alright for me but all I can
think of is this disease. I hope I can accept the diagnosis because if I cannot
live with it life will be very long so... It is like each day I have to tell
myself that Im still there and that life can be beautiful at times but for sure
I felt better when I did not know about the diagnosis. If God could help us with
a cure... Presently I am out of work because of  the diagnosis and days are
long.
Take care everyone,
Benoit

 

 Hey, im sorry to hear about your diagnosis im 17 and was diagnosed about 4 years ago, my little sister, older sister, and dad are also sick... it sounds like alot of our symptoms are similar the short term memory, I use braces for my feet to walk without tipping, etc im glad your getting your support and neuro set up thats great, your never alone in this,  God and Jesus are always there and this is all meant for a bigger purpose, a life without pain, mourning, suffering is working way =) and thats how I survive is holding on to that and how beautiful life is it makes us so much stronger... if you ever need me im here
 
-Jacey-

 
 






 

---

To: huntingtonsdiseasesupportclub@yahoogroups.com
From: ben100110@yahoo.ca
Date: Thu, 3 Dec 2009 17:11:36 +0000
Subject: [Huntingtons Disease Support Club] I have Huntington's disease

 

Hi,
I'm 34 and I have Huntingdon's disease. It sucks. I just receive the diagnosis last month and I can't conceive that I have this illness. I'd like to cry every day. I don't know what to do to stop being worried abot the disease. I have short-term memory problems and I need prosthetic to help me walk correctly. I often said to myself "you're not alone other people are living the same thing but all I have read on the Internet about this disease and people like me who have it it helps me to hear their stories and their hints are very good but at the end I'm with myself and I need more than that. It's because if it was to be done again I wouldn't want to know the diagnosis (I was in a hospital for a depression and they ran the test on me because it was my mother's illness I said yes even if they didn't explain the consequences of saying yes to me and I think now that I should have said no because now it's worse : I have suicidal thoughts and I don't want to do anything because everything seems pointless to me. I will see my neurologist for the first time december 8th. I will also see a support group beginning december 9th.
Take care everyone,
Benoit

---

Windows Liveâ„¢ Hotmail is faster and more secure than ever. Learn more.

Hi. I agree, HD sucks.I am glad that you are in this group. You will find the
most awesome people here. Also, a lot of information and support. I have been a
part of this group since 1998. I refer to the members of this group as my "HD
Family". Keep reaching out. We are all here for you.

Where do you live? I hope the support group you have found gives you what you
need. If not, keep looking. Not every group is the "right" fit. Same advice
about the neurologist. You have to feel comfortable and confident in the doctor
that you are putting your trust in. I agree that the hospital should have
explained the impact that the results can have on a person/family. Sounds like
the timing maybe wasn't the best for this news.

Just remember that there are those of us out here that understand and care. You
are not alone, although it seems that way at times. Write down questions that
you have for your doctor. Questions about HD, resources, even ask about the
doctor's experience with HD. Don't be afraid to ask and demand answers. This is
your life and your disease. Feel free to post anytime. If I can ever help, just
ask. Take care and God bless.

Lucy



--- In huntingtonsdiseasesupportclub@yahoogroups.com, "ben100110"
<ben100110@...> wrote:
>
> Hi,
> I'm 34 and I have Huntingdon's disease. It sucks. I just receive the diagnosis
last month and I can't conceive that I have this illness. I'd like to cry every
day. I don't know what to do to stop being worried abot the disease. I have
short-term memory problems and I need prosthetic to help me walk correctly. I
often said to myself "you're not alone other people are living the same thing
but all I have read on the Internet about this disease and people like me who
have it it helps me to hear their stories and their hints are very good but at
the end I'm with myself and I need more than that. It's because if it was to be
done again I wouldn't want to know the diagnosis (I was in a hospital for a
depression and they ran the test on me because it was my mother's illness I said
yes even if they didn't explain the consequences of saying yes to me and I think
now that I should have said no because now it's worse : I have suicidal thoughts
and I don't want to do anything because everything seems pointless to me. I will
see my neurologist for the first time december 8th. I will also see a support
group beginning december 9th.
> Take care everyone,
> Benoit
>

Hi,
I'm 34 and I have Huntingdon's disease. It sucks. I just receive the diagnosis
last month and I can't conceive that I have this illness. I'd like to cry every
day. I don't know what to do to stop being worried abot the disease. I have
short-term memory problems and I need prosthetic to help me walk correctly. I
often said to myself "you're not alone other people are living the same thing
but all I have read on the Internet about this disease and people like me who
have it it helps me to hear their stories and their hints are very good but at
the end I'm with myself and I need more than that. It's because if it was to be
done again I wouldn't want to know the diagnosis (I was in a hospital for a
depression and they ran the test on me because it was my mother's illness I said
yes even if they didn't explain the consequences of saying yes to me and I think
now that I should have said no because now it's worse : I have suicidal thoughts
and I don't want to do anything because everything seems pointless to me. I will
see my neurologist for the first time december 8th. I will also see a support
group beginning december 9th.
Take care everyone,
Benoit

but we look forward to chatting again on Friday.

Thanks to Jen, Lynne, Kath, Matt, Mia, Jane, Teresa, Pam, Kayleigh, Letitia, and Cathy for your attendance today.

Love & hugs to all and all your loved ones,

Sue (& Kelly)

As I understand it every person has 2 HD genes (most are normal) those with HD
have at least one abnormal HD gene.

CAG (cytosine-adenine-guanine) is how many times that HD gene repeats itself.

Normal genes have less than 30 repeats (my husband has a 17 and a 43 - so his 17
is normal and his 43 is abnormal and therefore HD positive).

Those who have 30-39 repeats is what is considered a gray area. From what I
understand it's considered an abnormal gene with that many repeats but it's like
you're a carrier of the disease but may not ever actually get it....so you're
still stuck with the "wait and see" like before you tested.

If you have over 40 CAG repeats than you have an abnormal gene and will get HD
sometime in your lifetime. The age of onset varies from person to person. Two
people can have the same CAG and one person can begin symptoms at 30 while the
other not until 60.

In general, the higher your CAG the younger you usually are when you begin
showing symptoms.

Hope this helps.




--- In huntingtonsdiseasesupportclub@yahoogroups.com, "lepatrick3"
<lepatrick3@...> wrote:
>
> What is CAG?  Mine was 44.
>
> Patrick
>

What is CAG?  Mine was 44.

Patrick

My name is Patrick. I was diagnosed in Aug, and the Dr. said that Ive had it for
4-5 years. My wife is Le.

but there are still several people in the chat room.

Thanks to Teresa, Sunshine, Lynne, Jen, Letitia, Kayleigh, Tanya, Briggsy, Matt, Susan, Mary, Michelle, and Lucy for your attendance today.

Love & hugs to all and all your loved ones,

Sue & Kelly

We went to a genetic testing clinic and paid out of pocket as to not inform our
doctor or our insurance company. The blood test was $330 Hope that helps.

--- In huntingtonsdiseasesupportclub@yahoogroups.com, Terri girl <lbrown845@...>
wrote:
>
> teresa  how do you get a test without  your dr knowing ??
>
>
>
>
>
>  Terri girl
>
> --- On Sat, 11/21/09, mom2ax2 <tlsenart@...> wrote:
>
>
> From: mom2ax2 <tlsenart@...>
> Subject: Re: [Huntingtons Disease Support Club] Results came back
> To: huntingtonsdiseasesupportclub@yahoogroups.com
> Date: Saturday, November 21, 2009, 12:53 PM
>
>
>  
>
>
>
> Thank you Teresa. My husband just turned 30 this year and is already
experiencing early symptoms (so I was kind shocked his CAG was only 43). I'm not
sure what this means for him. I wish there was a more clear answer. Will
definitely take your advice and find a good neurologist though. Thank you.
>
> --- In huntingtonsdiseases upportclub@ yahoogroups. com, T J <tmlarkin74@ ...>
wrote:
> >
> > hi,
> >   I am so sorry about your husbands results. I am 53 and in the early
stages of HD. I take it you had the test "off the books" so that insurance
doesn't know. If i were you i would get your insurance in line all of it health
life long term ect. Then find yourselves a very good neurologist! There are
many meds out on the market and on the horizon now but you need to have a good
Dr. to help you. My cag count is 43 also if thats any comfort. let me know if
i can be of any help  my name is Teresa. take care!   
> >
> > --- On Sat, 11/21/09, mom2ax2 <tlsenart@ .> wrote:
> >
> >
> > From: mom2ax2 <tlsenart@ .>
> > Subject: [Huntingtons Disease Support Club] Results came back
> > To: huntingtonsdiseases upportclub@ yahoogroups. com
> > Date: Saturday, November 21, 2009, 8:49 AM
> >
> >
> >  
> >
> >
> >
> > My husband tested positive. :( His CAG is 43. He wasn't shocked and seems ok
but I'm not sure how much of that is a front. I've been searching online all
morning and am shocked at how little information there is on what to do next.
I'm so lost now. We want to get our "ducks in a row" but I don't even know where
to start. Should he see his own doctor, keep it a secret so insurance doesn't
know? Should we up our life insurance? How much is enough? What about long-term
disability from work. How do I learn about their policies? Ah...advice anyone on
where to start or what to do would be great. Thanks so much.
> >
>

Thank you Teresa. My husband just turned 30 this year and is already
experiencing early symptoms (so I was kind shocked his CAG was only 43). I'm not
sure what this means for him. I wish there was a more clear answer. Will
definitely take your advice and find a good neurologist though. Thank you.

--- In huntingtonsdiseasesupportclub@yahoogroups.com, T J <tmlarkin74@...>
wrote:
>
> hi,
>   I am so sorry about your husbands results. I am 53 and in the early stages
of HD. I take it you had the test "off the books" so that insurance doesn't
know. If i were you i would get your insurance in line all of it health
life long term ect. Then find yourselves a very good neurologist! There are
many meds out on the market and on the horizon now but you need to have a good
Dr. to help you. My cag count is 43 also if thats any comfort. let me know if i
can be of any help  my name is Teresa. take care!   
>
> --- On Sat, 11/21/09, mom2ax2 <tlsenart@...> wrote:
>
>
> From: mom2ax2 <tlsenart@...>
> Subject: [Huntingtons Disease Support Club] Results came back
> To: huntingtonsdiseasesupportclub@yahoogroups.com
> Date: Saturday, November 21, 2009, 8:49 AM
>
>
>  
>
>
>
> My husband tested positive. :( His CAG is 43. He wasn't shocked and seems ok
but I'm not sure how much of that is a front. I've been searching online all
morning and am shocked at how little information there is on what to do next.
I'm so lost now. We want to get our "ducks in a row" but I don't even know where
to start. Should he see his own doctor, keep it a secret so insurance doesn't
know? Should we up our life insurance? How much is enough? What about long-term
disability from work. How do I learn about their policies? Ah...advice anyone on
where to start or what to do would be great. Thanks so much.
>

My husband tested positive. :( His CAG is 43. He wasn't shocked and seems ok but
I'm not sure how much of that is a front. I've been searching online all morning
and am shocked at how little information there is on what to do next. I'm so
lost now. We want to get our "ducks in a row" but I don't even know where to
start. Should he see his own doctor, keep it a secret so insurance doesn't know?
Should we up our life insurance? How much is enough? What about long-term
disability from work. How do I learn about their policies? Ah...advice anyone on
where to start or what to do would be great. Thanks so much.

but there are still several people in there at present.

Thanks to Lynne, Matt, Jen, Anne, Teresa, Lauren, Sunshine, Kayleigh, Jacey, Kath, and Lulu for your attendance today. I look forward to getting to know the new people better soon.

Love & hugs to all and all your loved ones,

Sue & Kelly

and we look forward to chatting on Wednesday.

Love & hugs to all,

Sue & Kelly

but there are still several people in the room at present.

Thanks to Gillian, Teresa, Zena, Jane, Lynne, Jen, Kayleigh, Lauren, Jacey, Susan, Alison, Matt, and Teri for your attendance today.

Love & hugs to all and all your loved ones,

Sue (& Kelly)

but there are still several people in there at present.

Thanks to Lauren, Jen, Lynne, Teresa, Pete, Diane, Letitia, Pam, Jacey, Matt, Dave, Susan, and Liz for your attendance today.

Love & hugs to all and all your loved ones,

Sue & Kelly