huntingtonsdiseasesupportclub : Messages : 10640-10660 of 10660

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#10660

From: tom boy <tjchesterville@...>
Date: Sat Nov 21, 2009 9:42 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

tjchesterville

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Hi mom2ax2, I just joined this group myself, I will be 40 next mth and have had HD for 2 years, it was bad at first but with the doctors help and all kinds of drugs (I have lost track on what I take now) I have had 3 neurologist and found one I like. I live in Boston some of the best Dr around but found the don't spend any time ex planing what may be next, I live on my own for now and hope for a lot longer, i have not worked for about a year now. I'm turning my house that I busted my but to pay off to my sister so I wont lose it if things get worse. i did get very depressed about 6 mths ago and took some pills and hoped not to wake up but my family jumped in and saved me ( thank god) the depression is hardest to work out so far, I get mad with my sisters all the time and your husband will be the same with you its not your fault TRUST ME. well good luck and good health. Tom

--- 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, 9:49 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.

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#10659

From: Terri girl <lbrown845@...>
Date: Sat Nov 21, 2009 7:09 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

lbrown845

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what is the CAG count I read the # of teters is how its determined how soon systems show up ..Is that correct? Terri

Terri girl

--- On Sat, 11/21/09, Terri girl <lbrown845@...> wrote:

From: Terri girl <lbrown845@...>
Subject: Re: [Huntingtons Disease Support Club] Results came back
To: huntingtonsdiseasesupportclub@yahoogroups.com
Date: Saturday, November 21, 2009, 1:08 PM

teresa how do you get a test without your dr knowing ??

Terri girl

--- On Sat, 11/21/09, mom2ax2 <tlsenart@gmail. com> wrote:

From: mom2ax2 <tlsenart@gmail. com>
Subject: Re: [Huntingtons Disease Support Club] Results came back
To: huntingtonsdiseases upportclub@ 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,
> Â 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 lifeÂ 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 alsoÂ if thats any comfort. let me know if i can be of any helpÂ my name is Teresa. take care!Â Â Â
>
> --- 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
>
>
> Â
>
>
>
> 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.
>

Reply | Forward | Messages in this Topic (9)

#10658

From: Terri girl <lbrown845@...>
Date: Sat Nov 21, 2009 7:07 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

lbrown845

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yes thank you My dr told me there was only 1 place to get HD test and he would have to send it to calif I think he says I don`t have any systems so he doesn`t want to mess with it...

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, 1:13 PM

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 huntingtonsdiseases upportclub@ yahoogroups. com, Terri girl <lbrown845@. ..> wrote:
>
> teresaÂ how do you get a test withoutÂ your dr knowing ??
>
>
>
>
>
> Â Terri girl
>
> --- On Sat, 11/21/09, mom2ax2 <tlsenart@.. .> wrote:
>
>
> From: mom2ax2 <tlsenart@.. .>
> Subject: Re: [Huntingtons Disease Support Club] Results came back
> To: huntingtonsdiseases upportclub@ yahoogroups. com
> Date: Saturday, November 21, 2009, 12:53 PM
>
>
> Â
>
>
>
> 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,
> > Ã‚Â 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 lifeÃ‚Â 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 alsoÃ‚Â if thats any comfort. let me know if i can be of any helpÃ‚Â my name is Teresa. take care!Ã‚Â Ã‚Â Ã‚Â
> >
> > --- 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
> >
> >
> > Ã‚Â
> >
> >
> >
> > 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.
> >
>

Reply | Forward | Messages in this Topic (9)

#10657

From: "mom2ax2" <tlsenart@...>
Date: Sat Nov 21, 2009 6:13 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

mom2ax2

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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,
> > Â  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
lifeÂ 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 alsoÂ if thats any comfort. let me know if
i can be of any helpÂ  my name is Teresa. take care!Â Â Â 
> >
> > --- 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
> >
> >
> > Â 
> >
> >
> >
> > 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.
> >
>

Reply | Forward | Messages in this Topic (9)

#10656

From: Terri girl <lbrown845@...>
Date: Sat Nov 21, 2009 6:08 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

lbrown845

Offline

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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,
> Â 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 lifeÂ 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 alsoÂ if thats any comfort. let me know if i can be of any helpÂ my name is Teresa. take care!Â Â Â
>
> --- 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
>
>
> Â
>
>
>
> 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.
>

Reply | Forward | Messages in this Topic (9)

#10655

From: "mom2ax2" <tlsenart@...>
Date: Sat Nov 21, 2009 5:53 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

mom2ax2

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Send Email

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.
>

Reply | Forward | Messages in this Topic (9)

#10654

From: E G <orginaltigger@...>
Date: Sat Nov 21, 2009 5:11 pm
Subject: RE: [Huntingtons Disease Support Club] Results came back

paljorj

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Send Email

So sorry about your husband. How old is he now? The good news is they are making progress all the time on meds for hd. Yes, get all the insurance you can afford, if you tested off the books so the insurance companies can't find the results. If they can prove you knew about the hd, they are mostly likely going to fight on paying. I know AFLAC at one time excluded hd, but check on that before you sign up for anything.
Not sure where you live, but check of Center of Excellence near you. HDSA maybe able to help you find a doctor. They did have information for doctors who weren't knowledgeable about hd. The more educated you become the more you can help in the future. Be prepared for a lot of ignorance in the medical field. With study you will often find yourself with a lot more knowledge than many medical people. It's unfortunate, but hd is something of an orphan disease. So many know so little and a lot that has been written about it is wrong. So arm yourself with knowledge and don't hesitate to ask for help.
For government disability go over the forms with a fine tooth comb. Otherwise, you will doing them over and over. The more information you have the stronger you will be with both the government workers and medical people.
Most likely your husband will go through many mood swings adjusting to the news.
Most important of all, keep in mind whatever happens it is the disease not your husband.
Along with every thing else I strongly suggest you both go for therapy to deal with hd. He may or not be willing but it will help you too.
Also make sure in the future to take care of yourself. It is very easy for caretakers to fall into the trap of ignoring their own health and wellbeing. Trust me on this fact, please, I am having to force myself to take care of me, right now. My wife has cancer and is not going through chemo.
Yeah some of us have all the luck. lol My sister has hd, my father and oldest brother died from it and now wife with cancer.
But, as I keep remind myself, I am not facing any of this alone. With out the support group I have I know I wouldn't survive, so be ready to ask for help and to accept it. You are not superwoman and please don't try to be.
One other thing, this site has so many great ppl on it, use it, cry, scream, ask questions, just do whatever helps.
Good luck and God Bless,
Edward

Cure HD

EMAILING FOR THE GREATER GOOD
Join me

To: huntingtonsdiseasesupportclub@yahoogroups.com
From: tlsenart@...
Date: Sat, 21 Nov 2009 14:49:52 +0000
Subject: [Huntingtons Disease Support Club] Results came back

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.

Reply | Forward | Messages in this Topic (9)

#10653

From: T J <tmlarkin74@...>
Date: Sat Nov 21, 2009 3:11 pm
Subject: Re: [Huntingtons Disease Support Club] Results came back

tmlarkin74

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Send Email

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.

Reply | Forward | Messages in this Topic (9)

#10652

From: "mom2ax2" <tlsenart@...>
Date: Sat Nov 21, 2009 2:49 pm
Subject: Results came back

mom2ax2

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Send Email

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.

Reply | Forward | Messages in this Topic (9)

#10650

From: "sue_twin2" <sue_twin2@...>
Date: Wed Nov 18, 2009 8:11 pm
Subject: I've left the chat room....

sue_twin2

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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