huntingtonsatrisk : Messages : 6998-7027 of 7027

Rhonda,

I am sorry that it is taking you so long to find a job. I am also sorry that you have to go through this during the Christmas season. I will be keeping you in my prayers. Hopefully you will find something soon. Good luck.

Brandie

On Dec 3, 2009, at 3:44 PM, Rhonda Holscher <sawedoffrunt69@...> wrote:

<--static--greencircles_tl.gif>

Please say a special prayer for us! As many of you know I have been caregiver for many years and did not work. Since my mom's passing the only income I receive is a few hundred dollars a month in chid support. This is not enough to pay our monthly bills. I did have some money that was getting us by, but once my electric bill and insurance bill clear those funds will be pretty much depleted. I still have not found a job.

I currently took some tests with a temporary angency, and she told me I passed all the tests and she is working on trying to find me employment but apparently the temporary angency does not have anything to offer at this time either. She has flagged my file to call me immediately when something arises, and she is going to work on trying to find me a permament FT assignment. But this has not happened yet.

I have been looking for employment since April, and I have been looking extremely hard. I have put many, many hours into searching, and applying for jobs. Even jobs I really do not want to do. Still to no avail I am unable to find employment. Ohio's job market really stinks right now, and I am at the point where something needs to happen.

So please prayer that my job need is met immediately. This is urgent for me, and has me feeling worried and desperate and I hate that feeling.

Rhonda Holscher

(513) 309-8335

rholscher2@...

sawedoffrunt69@...

<--static--greencircles_br.gif>

#7026

From: Rhonda Holscher <sawedoffrunt69@...>
Date: Thu Dec 3, 2009 9:44 pm
Subject: Need prayers

sawedoffrunt69

Online Now

Please say a special prayer for us! As many of you know I have been caregiver for many years and did not work. Since my mom's passing the only income I receive is a few hundred dollars a month in chid support. This is not enough to pay our monthly bills. I did have some money that was getting us by, but once my electric bill and insurance bill clear those funds will be pretty much depleted. I still have not found a job.

I currently took some tests with a temporary angency, and she told me I passed all the tests and she is working on trying to find me employment but apparently the temporary angency does not have anything to offer at this time either. She has flagged my file to call me immediately when something arises, and she is going to work on trying to find me a permament FT assignment. But this has not happened yet.

I have been looking for employment since April, and I have been looking extremely hard. I have put many, many hours into searching, and applying for jobs. Even jobs I really do not want to do. Still to no avail I am unable to find employment. Ohio's job market really stinks right now, and I am at the point where something needs to happen.

So please prayer that my job need is met immediately. This is urgent for me, and has me feeling worried and desperate and I hate that feeling.

Rhonda Holscher

(513) 309-8335

rholscher2@...

sawedoffrunt69@...

#7025

From: Cindy Diogo <cindy_diogo@...>
Date: Wed Dec 2, 2009 9:08 pm
Subject: Re: [huntington's at risk] Father-in-law with disease, Husband at risk

cindy_diogo

Offline

Rebecca,

Non-disclosure in vitro is a good place to start. A friend did selective gene in vitro (she already knew she was positive for HD). Her twins are adorable and gene negative.

Until your husband is ready to decide, there is little you will be able to do. Hang in there, love him, appreciate every day you have. Often we forget to do that.

Cindy

--- On Wed, 12/2/09, rebeccaschultz_927 <no_reply@yahoogroups.com> wrote:

From: rebeccaschultz_927 <no_reply@yahoogroups.com>
Subject: Re: [huntington's at risk] Father-in-law with disease, Husband at risk
To: huntingtonsatrisk@yahoogroups.com
Date: Wednesday, December 2, 2009, 10:26 AM

No childern yet, I've been trying to push for non-disclosure invitro

--- In huntingtonsatrisk@ yahoogroups. com, Cindy Diogo <cindy_diogo@ ...> wrote:
>
> Hi Rebecca,
> This is a loaded question. An at-risk person needs to be ready to be tested and talk about it. I did not get tested til my daughter told me she was ready to start a family. Denial is a great tool. Hang in there. Do you have any children?
> Cindy
>
> --- On Tue, 12/1/09, rebeccaschultz_ 927 <no_reply@yahoogroup s.com> wrote:
>
>
> From: rebeccaschultz_ 927 <no_reply@yahoogroup s.com>
> Subject: [huntington' s at risk] Father-in-law with disease, Husband at risk
> To: huntingtonsatrisk@ yahoogroups. com
> Date: Tuesday, December 1, 2009, 8:18 PM
>
>
> Â
>
>
>
> My father-in-law has had been diagnosed with huntington's for 15-20 years and is now in his mid 50's. My husband has recently turned 30 is at risk and has not been tested. Myself and several family members are concerned he is starting to show early signs of huntington's but my husband refuses to talk about the disease at all let alone that he may be showing syptoms. I'm becoming increasingly concerned and am looking for suggestions on how to approach the subject with him.
>

#7024

From: rebeccaschultz_927
Date: Wed Dec 2, 2009 3:26 pm
Subject: Re: [huntington's at risk] Father-in-law with disease, Husband at risk

rebeccaschul...

Offline

No childern yet, I've been trying to push for non-disclosure invitro


--- In huntingtonsatrisk@yahoogroups.com, Cindy Diogo <cindy_diogo@...> wrote:
>
> Hi Rebecca,
> This is a loaded question. An at-risk person needs to be ready to be tested
and talk about it. I did not get tested til my daughter told me she was ready to
start a family. Denial is a great tool. Hang in there. Do you have any children?
> Cindy
>
> --- On Tue, 12/1/09, rebeccaschultz_927 <no_reply@yahoogroups.com> wrote:
>
>
> From: rebeccaschultz_927 <no_reply@yahoogroups.com>
> Subject: [huntington's at risk] Father-in-law with disease, Husband at risk
> To: huntingtonsatrisk@yahoogroups.com
> Date: Tuesday, December 1, 2009, 8:18 PM
>
>
>  
>
>
>
> My father-in-law has had been diagnosed with huntington's for 15-20 years and
is now in his mid 50's. My husband has recently turned 30 is at risk and has not
been tested. Myself and several family members are concerned he is starting to
show early signs of huntington's but my husband refuses to talk about the
disease at all let alone that he may be showing syptoms. I'm becoming
increasingly concerned and am looking for suggestions on how to approach the
subject with him.
>

#7023

From: "Jean E. Miller" <jemiller@...>
Date: Wed Dec 2, 2009 1:38 pm
Subject: 12-7-2009 Curtains Up for a Cure Concert NYC

hdcureit

Offline

For anyone in the NYC area here's a great upcoming event that was started by NYAer Katie Moser in honor of the NYA's Michigan Mukka sisters on-going battle to create awareness to Juvenile HD!

3rd Annual Curtains Up for a Cure Concert to Feature Kimball, Murney, Von Essen, Champlin and More
http://www.playbill.com/news/article/134702-Curtains-Up-for-a-Cure-Concert-to-Feature-Kimball-Murney-Von-Essen-Champlin-and-More

and http://www.theatermania.com/new-york/news/11-2009/judy-gold-chad-kimball-julia-murney-meredith-patte_22991.html

Emmy Award winner and Comic Judy Gold will host the Huntington's Disease Society of America's annual Curtains Up for a Cure concert, which will be held Dec. 7 at Playwrights Horizons in Manhattan.

Produced by actress Meredith Patterson, who has lost family members to Huntington's Disease, the concert will feature Broadway artists performing their favorite holiday tunes. Jamie McGonnigal will direct the concert, which will feature musical direction and piano accompaniment by Devin Ilaw. Performers are currently scheduled to include Chad Kimball, Julia Murney, Max von Essen, Donna Lynne Champlin, Billy Stritch, Erin Mackey, Betsy Wolfe, Tom Deckman, Alina Faye, Jeremy Schonfeld and Patterson.

The evening will also include a cocktail hour, hors d'oeuvres and a silent auction. Cocktails at 6:30 PM, Performance at 7:30 PM. Tickets are $50 including pre-show cocktails, or $30 for the performance alone. Playwrights Horizons is located at 416 W. 42nd Street in Manhattan. For ticket information e-mail Chenell Tannure (ctannure@...), or call (212) 242-1968 ext. 221, or visit www.hdsa.org/gny.

Picture Source HDSA: http://www.hdsa.org/events/

#7022

From: "Jean E. Miller" <jemiller@...>
Date: Wed Dec 2, 2009 1:30 pm
Subject: Sat. 12-5 Louisiana's Rock for Hope Concert and Jambalaya Dinner

hdcureit

Offline

For anyone living in Louisiana or near Baton Rouge, this sounds like fun!

Saturday, December 05, 2009

Rock For Hope Concert and Jambalaya Dinner
North Gate Tavern
136 West Chimes St.

Baton Rouge, Louisiana - 70802 (adjacent to the LSU campus)
7 p.m. until ?
Admission: $10

High school friends of Cathy Paterson formed a committee called �Cathy Cares� to show their support of her battle with Huntington's Disease. Their �Rock for Hope� fundraiser on December 5^th is to raise awareness in the Baton Rouge area and funds to support the HDSA mission.

For only a $10 admission fee, you can hear some of Baton Rouge�s favorite local bands rock out and enjoy a great jambalaya dinner. What a way to kick off the holiday season!

For more information about the concert, contact Barbara Lacour at stephenlacour@....

If you cannot attend but want to show support for Cathy and all Louisianans affected by HD, you can make a donation through firstgiving at http://www.firstgiving.com/brandonveach.

Source HDSA: http://www.hdsa.org/events/

#7021

From: Cindy Diogo <cindy_diogo@...>
Date: Wed Dec 2, 2009 3:30 am
Subject: Re: [huntington's at risk] Father-in-law with disease, Husband at risk

cindy_diogo

Offline

Hi Rebecca,

This is a loaded question. An at-risk person needs to be ready to be tested and talk about it. I did not get tested til my daughter told me she was ready to start a family. Denial is a great tool. Hang in there. Do you have any children?

Cindy

--- On Tue, 12/1/09, rebeccaschultz_927 <no_reply@yahoogroups.com> wrote:

From: rebeccaschultz_927 <no_reply@yahoogroups.com>
Subject: [huntington's at risk] Father-in-law with disease, Husband at risk
To: huntingtonsatrisk@yahoogroups.com
Date: Tuesday, December 1, 2009, 8:18 PM

My father-in-law has had been diagnosed with huntington's for 15-20 years and is now in his mid 50's. My husband has recently turned 30 is at risk and has not been tested. Myself and several family members are concerned he is starting to show early signs of huntington's but my husband refuses to talk about the disease at all let alone that he may be showing syptoms. I'm becoming increasingly concerned and am looking for suggestions on how to approach the subject with him.

#7020

From: Rhonda Holscher <sawedoffrunt69@...>
Date: Wed Dec 2, 2009 4:15 am
Subject: Re: [huntington's at risk] Father-in-law / Rebecca and not to Rhonda

sawedoffrunt69

Online Now

rholscher2@cinci. rr.com

Scott I think this is an excellent suggestion for Rebecca.

Rhonda Holscher

(513) 309-8335

rholscher2@...

sawedoffrunt69@...

From: Scott <scott_v1963@...>
To: huntingtonsatrisk@yahoogroups.com
Sent: Tue, December 1, 2009 11:07:58 PM
Subject: Re: [huntington's at risk] Father-in-law / Rebecca and not to Rhonda

Been following you lately Rhonda. Another tragic story to tell. Unbelievable, it seems, yet so familiar.

I'm in the middle of a biography on Woody Guthrie. Hard to read, harder to put down. His mother and her father. The falls, the temper, sadness and anguish. I read of his family and it is mine. Woody's behavior even before the disease took hold could be my own father. Smart, clever, talented.

As for the the husband in the issue you were addressing. The husband knows, plain and simple. He knows. If he is like me, (and I'm sure he is), he's been waiting for the symptoms to show. Waiting for someone to say, "Hey, I noticed ..."

Give him time and support. Reassure him you intend to see him through the entire process. No doubt he fears you will desert him. Make certain he knows you have his back now and in the future. Tell the husband you will see the doctor together. You will make the appointment and take him yourself. If you are certain he has symptoms, tell him its time to find out for sure.

Then give him the night of his life. Hold him close. Let him know you are frightened as well, but will not desert him.

...At age 46 @risk. I think that is how I 'd like it addressed to me.

Scott Hagen

Omaha

From: Rhonda Holscher <sawedoffrunt69@ yahoo.com>
To: huntingtonsatrisk@ yahoogroups. com
Sent: Tue, December 1, 2009 8:57:09 PM
Subject: Re: [huntington' s at risk] Father-in-law with disease, Husband at risk

I wish there was a full proof way to do this, but there isn't. You may need to give him more time, or you may need to push on forward and deal with it head on. Only you know your circumstances and only you can decide if this benefit your family to have that talk with him right now/later.

When my Aunt Lisa was under my care I remember we had to go to court to get her SS approved by a judge. The judge was asking her questions about what she could and could not do and of course she lied, well in her state of denial I don't know if you can really call it lying it is what she let herself believe/all she was capable of believing. At anyrate it came about the judge finally got around to me and ask me similar questions and I remember when answering the judge each time I would say something she didn't approve of she would give me these looks and say things "yes I can", "that's not true", "I don't have Hungtingtons Disease", and at one point she kicked me so hard I practically jumped out of my chair, and since we were sitting under a table and judge was directly in front of us he saw the whole thing. LOL. Anyway, she was in denial the whole time. She was tested positive, her kids were taken from her, she had to go through some horrible stuff that I won't get into now, and she still denied she had Huntingtons. Falling down all the time, staggering like a drunk everywhere, burning herself everytime she smoked a cigarette, cutting herself up pretty bad everytime she shaved, becoming really hateful and violent, telling lies, paranoia, not bathing, roaming the house all night and lying in bed all day, stealing, this was not my Aunt and one would think that a person would notice that at the very least they stopped bathing themselves, or they were getting hurt all the time, but it is amazing at how they pass it off with some lame excuse/with the wave of a hand as if this is normal and okay.

I truly wish you the best in whatever decision you make. It would be nice if you had support when you did this, but be careful about having other people around as he may feel as if he is being ganged up on and just resist. Good luck.

Rhonda Holscher

(513) 309-8335

sawedoffrunt69@ yahoo.com

From: rebeccaschultz_ 927 <no_reply@yahoogroup s.com>
To: huntingtonsatrisk@ yahoogroups. com
Sent: Tue, December 1, 2009 8:18:37 PM
Subject: [huntington' s at risk] Father-in-law with disease, Husband at risk

My father-in-law has had been diagnosed with huntington's for 15-20 years and is now in his mid 50's. My husband has recently turned 30 is at risk and has not been tested. Myself and several family members are concerned he is starting to show early signs of huntington's but my husband refuses to talk about the disease at all let alone that he may be showing syptoms. I'm becoming increasingly concerned and am looking for suggestions on how to approach the subject with him.

#7019

From: Scott <scott_v1963@...>
Date: Wed Dec 2, 2009 4:07 am
Subject: Re: [huntington's at risk] Father-in-law / Rebecca and not to Rhonda

scott_v1963

Offline

rholscher2@cinci. rr.com

Been following you lately Rhonda. Another tragic story to tell. Unbelievable, it seems, yet so familiar.

Then give him the night of his life. Hold him close. Let him know you are frightened as well, but will not desert him.

...At age 46 @risk. I think that is how I 'd like it addressed to me.

Scott Hagen

Omaha

From: Rhonda Holscher <sawedoffrunt69@...>
To: huntingtonsatrisk@yahoogroups.com
Sent: Tue, December 1, 2009 8:57:09 PM
Subject: Re: [huntington's at risk] Father-in-law with disease, Husband at risk

Rhonda Holscher

(513) 309-8335

sawedoffrunt69@ yahoo.com

#7018

From: Rhonda Holscher <sawedoffrunt69@...>
Date: Wed Dec 2, 2009 2:57 am
Subject: Re: [huntington's at risk] Father-in-law with disease, Husband at risk

sawedoffrunt69

Online Now

Rhonda Holscher

(513) 309-8335

rholscher2@...

sawedoffrunt69@...

From: rebeccaschultz_927 <no_reply@yahoogroups.com>
To: huntingtonsatrisk@yahoogroups.com
Sent: Tue, December 1, 2009 8:18:37 PM
Subject: [huntington's at risk] Father-in-law with disease, Husband at risk

#7017

From: rebeccaschultz_927
Date: Wed Dec 2, 2009 1:18 am
Subject: Father-in-law with disease, Husband at risk

rebeccaschul...

Offline

My father-in-law has had been diagnosed with huntington's for 15-20 years and is
now in his mid 50's. My husband has recently turned 30 is at risk and has not
been tested. Myself and several family members are concerned he is starting to
show early signs of huntington's but my husband refuses to talk about the
disease at all let alone that he may be showing syptoms. I'm becoming
increasingly concerned and am looking for suggestions on how to approach the
subject with him.

#7016

From: Debra Ward <debra.ward@...>
Date: Mon Nov 30, 2009 11:57 pm
Subject: Re: [huntington's at risk] Sammy

debra.ward

Offline

Hi Sweetie,

You are brave !!!! HD is the dirtiest word in your home...you lost your Mom to it and I am so sorry for your loss. Let your family know that you needed to find out if you COULD have the same fate as your Mom that's why you did it. My son-in-law wanted to know and he tested positive too...he's 42. He quit his job to go to school full-time to become a Doctor, his life is going on. Due to his bravery my daughter will not have any children she has no regrets being with him she loves him so very much. Family is so important let them know. A while a go, that doesn't matter now, little bit ago, there's no need to tell them 3 years if you feel that will hurt them. The important thing here is you need your family, they will not be mad at you....I promise....if they do get mad it's the disease not you Sweetie. Your sister might not give you the support you are looking for at first, she too will be scared. I wish you all the luck in the world.

My God bless you and your family

Debra

From: lauren steffan <laurensteffan39@...>
To: huntingtonsatrisk@yahoogroups.com
Sent: Sat, November 28, 2009 3:32:49 PM
Subject: [huntington's at risk] Sammy

Hey Sammy,

My name is Lauren and my situation is very similiar to yours. It is difficult having Huntingtons Disease in my life. I believe that you know the exact thing to do in order to get through this difficult delima of getting tested for this disease at such a young age. I think you are brave. I think you will find peace with what you are dealing with as soon as you let go. I read your original posting and thought that what you wrote was extremly powerful. If you do not mind I wolud like to quote you in a paper I am writing. If you need anything you can always email me at laurensteffan39@ yahoo.com. I hope to hear from you soon!
--- On Sat, 11/28/09, Michelle Routhieaux <whatnomuffins@ juno.com> wrote:

From: Michelle Routhieaux <whatnomuffins@ juno.com>
Subject: Re: [huntington' s at risk] Re: I need your help
To: huntingtonsatrisk@ yahoogroups. com
Date: Saturday, November 28, 2009, 6:52 AM

Sammy,

You are very strong to have done it alone for so long. I agree very much that you need a support system, but I don't think telling your family is a necessity if you don't want to or if it would negatively impact YOU. Recognize that I did not say negatively impact THEM. Because it's not about them. It sounds like it's important to you to tell them though. It's eating away at your soul.

You're right. They might be angry. And that's okay. You can't force them to deal with their own HD issues, but you have every right to let them know what yours are. Your feelings matter too. You may have done it behind their backs, but you did what you needed to do to take care of you. That's important. I think the expectations you go into the conversation with are key. If you're expecting unconditional non-angry love and support, you might have a problem. But if your goal is just to be heard, to let them know whatever it is that you need them to know, it might be easier. I-statements tend to help with that. What I mean by that is phrasing everything so it relates to you and not them, even though it really still does.

I just read back through your email and I was thinking about letters. Much of it would be good for them to hear. When I have to, or choose to, tell people things that are hard for me or things I'm really emotionally charged about it really helps me to write a letter, and then read it to them. It sounds kind of odd to some people but it helps me to know what I want to say in advance and to be able to have it in front of me, to not have to make it up on the spot or think on my feet. I may not prepare how to react to their reactions, but being able to just get through reading the letter and know that no matter what happens I at least got to say it helps tremendously. You can't predict or control the outcome, but you can be heard. I hope that helps. We're all here for you.

Michelle

PS - I wouldn't feel ashamed about not telling your family. It sounds like a matter of survival. And I understand the life of secrets. It's horrible feeling like such a huge part of your life is taboo, even within your own family. Telling those secrets is scary but oddly liberating. The people who taught me to keep secrets don't like it but it makes me feel a little more free, less ashamed, less caged. And isn't it odd how the HD that was your family's secret has now become your own. Let it go. You can do it. And the guilt of testing behind their backs? I think telling them will help that too.

>
> As I am sat here just thinking about what I am about to set in motion i feel physically sick.
>
> I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i wa
17 and from then on Huntington's was never spoken about in the family - it's like the dirtiest word you could ever bring up and buried so deep down under the ground that sometimes you daren't even think the word "Huntington' s". I tried to broach the subject that I wanted to be tested with my Dad and sister and they wanted nothing to do with it. I however, couldn't exist not knowing if I had it or not - it was all I could think about - so I decided to get tested against the wishes/knowledge of my family. I had the idea in mind that surely i would test negative and then i could deliver the happy news... WRONG; i tested positive and hence have found myself in a pickle. How to tell my family.
>
> Much to my shame it is now 3 and a half years down the line and for want of not hurting anybody i have not told them i have it. I have hidden this secret so deep down and it's slowly eating away at my soul now.
>
> What do i do? How do i tell them? They will be so angry when i tell them how long i've known for - but also - i did it behind their backs... even though i felt like they left me no choice.
>
> I appreciate any feedback.
>
> Sammy
>

____________ _________ _________ _________ _________ _________ ___
Can you Cook as a Career?
Free info on Le Cordon Bleu chef certification degree courses near you

#7015

From: lauren steffan <laurensteffan39@...>
Date: Sat Nov 28, 2009 8:32 pm
Subject: Sammy

laurensteffan39

Offline

Hey Sammy,

My name is Lauren and my situation is very similiar to yours. It is difficult having Huntingtons Disease in my life. I believe that you know the exact thing to do in order to get through this difficult delima of getting tested for this disease at such a young age. I think you are brave. I think you will find peace with what you are dealing with as soon as you let go. I read your original posting and thought that what you wrote was extremly powerful. If you do not mind I wolud like to quote you in a paper I am writing. If you need anything you can always email me at laurensteffan39@.... I hope to hear from you soon!
--- On Sat, 11/28/09, Michelle Routhieaux <whatnomuffins@...> wrote:

From: Michelle Routhieaux <whatnomuffins@...>
Subject: Re: [huntington's at risk] Re: I need your help
To: huntingtonsatrisk@yahoogroups.com
Date: Saturday, November 28, 2009, 6:52 AM

Sammy,

You are very strong to have done it alone for so long. I agree very much that you need a support system, but I don't think telling your family is a necessity if you don't want to or if it would negatively impact YOU. Recognize that I did not say negatively impact THEM. Because it's not about them. It sounds like it's important to you to tell them though. It's eating away at your soul.

You're right. They might be angry. And that's okay. You can't force them to deal with their own HD issues, but you have every right to let them know what yours are. Your feelings matter too. You may have done it behind their backs, but you did what you needed to do to take care of you. That's important. I think the expectations you go into the conversation with are key. If you're expecting unconditional non-angry love and support, you might have a problem. But if your goal is just to be heard, to let them know whatever it is that you need them to know, it might be easier. I-statements tend to help with that. What I mean by that is phrasing everything so it relates to you and not them, even though it really still does.

I just read back through your email and I was thinking about letters. Much of it would be good for them to hear. When I have to, or choose to, tell people things that are hard for me or things I'm really emotionally charged about it really helps me to write a letter, and then read it to them. It sounds kind of odd to some people but it helps me to know what I want to say in advance and to be able to have it in front of me, to not have to make it up on the spot or think on my feet. I may not prepare how to react to their reactions, but being able to just get through reading the letter and know that no matter what happens I at least got to say it helps tremendously. You can't predict or control the outcome, but you can be heard. I hope that helps. We're all here for you.

Michelle

PS - I wouldn't feel ashamed about not telling your family. It sounds like a matter of survival. And I understand the life of secrets. It's horrible feeling like such a huge part of your life is taboo, even within your own family. Telling those secrets is scary but oddly liberating. The people who taught me to keep secrets don't like it but it makes me feel a little more free, less ashamed, less caged. And isn't it odd how the HD that was your family's secret has now become your own. Let it go. You can do it. And the guilt of testing behind their backs? I think telling them will help that too.

>
> As I am sat here just thinking about what I am about to set in motion i feel physically sick.
>
> I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i wa
17 and from then on Huntington's was never spoken about in the family - it's like the dirtiest word you could ever bring up and buried so deep down under the ground that sometimes you daren't even think the word "Huntington' s". I tried to broach the subject that I wanted to be tested with my Dad and sister and they wanted nothing to do with it. I however, couldn't exist not knowing if I had it or not - it was all I could think about - so I decided to get tested against the wishes/knowledge of my family. I had the idea in mind that surely i would test negative and then i could deliver the happy news... WRONG; i tested positive and hence have found myself in a pickle. How to tell my family.
>
> Much to my shame it is now 3 and a half years down the line and for want of not hurting anybody i have not told them i have it. I have hidden this secret so deep down and it's slowly eating away at my soul now.
>
> What do i do? How do i tell them? They will be so angry when i tell them how long i've known for - but also - i did it behind their backs... even though i felt like they left me no choice.
>
> I appreciate any feedback.
>
> Sammy
>

____________ _________ _________ _________ _________ _________ ___
Can you Cook as a Career?
Free info on Le Cordon Bleu chef certification degree courses near you

#7014

From: "Michelle Routhieaux" <whatnomuffins@...>
Date: Sat Nov 28, 2009 12:52 pm
Subject: Re: [huntington's at risk] Re: I need your help

mrouthieaux

Online Now

Sammy,

You are very strong to have done it alone for so long. I agree very much that you need a support system, but I don't think telling your family is a necessity if you don't want to or if it would negatively impact YOU. Recognize that I did not say negatively impact THEM. Because it's not about them. It sounds like it's important to you to tell them though. It's eating away at your soul.

You're right. They might be angry. And that's okay. You can't force them to deal with their own HD issues, but you have every right to let them know what yours are. Your feelings matter too. You may have done it behind their backs, but you did what you needed to do to take care of you. That's important. I think the expectations you go into the conversation with are key. If you're expecting unconditional non-angry love and support, you might have a problem. But if your goal is just to be heard, to let them know whatever it is that you need them to know, it might be easier. I-statements tend to help with that. What I mean by that is phrasing everything so it relates to you and not them, even though it really still does.

I just read back through your email and I was thinking about letters. Much of it would be good for them to hear. When I have to, or choose to, tell people things that are hard for me or things I'm really emotionally charged about it really helps me to write a letter, and then read it to them. It sounds kind of odd to some people but it helps me to know what I want to say in advance and to be able to have it in front of me, to not have to make it up on the spot or think on my feet. I may not prepare how to react to their reactions, but being able to just get through reading the letter and know that no matter what happens I at least got to say it helps tremendously. You can't predict or control the outcome, but you can be heard. I hope that helps. We're all here for you.

Michelle

PS - I wouldn't feel ashamed about not telling your family. It sounds like a matter of survival. And I understand the life of secrets. It's horrible feeling like such a huge part of your life is taboo, even within your own family. Telling those secrets is scary but oddly liberating. The people who taught me to keep secrets don't like it but it makes me feel a little more free, less ashamed, less caged. And isn't it odd how the HD that was your family's secret has now become your own. Let it go. You can do it. And the guilt of testing behind their backs? I think telling them will help that too.

>
> As I am sat here just thinking about what I am about to set in motion i feel physically sick.
>
> I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i wa
17 and from then on Huntington's was never spoken about in the family - it's like the dirtiest word you could ever bring up and buried so deep down under the ground that sometimes you daren't even think the word "Huntington's". I tried to broach the subject that I wanted to be tested with my Dad and sister and they wanted nothing to do with it. I however, couldn't exist not knowing if I had it or not - it was all I could think about - so I decided to get tested against the wishes/knowledge of my family. I had the idea in mind that surely i would test negative and then i could deliver the happy news... WRONG; i tested positive and hence have found myself in a pickle. How to tell my family.
>
> Much to my shame it is now 3 and a half years down the line and for want of not hurting anybody i have not told them i have it. I have hidden this secret so deep down and it's slowly eating away at my soul now.
>
> What do i do? How do i tell them? They will be so angry when i tell them how long i've known for - but also - i did it behind their backs... even though i felt like they left me no choice.
>
> I appreciate any feedback.
>
> Sammy
>

____________________________________________________________
Can you Cook as a Career?
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#7013

From: "brandie.derusha" <brandie.derusha@...>
Date: Sat Nov 28, 2009 2:34 am
Subject: Re: I need your help

brandie.derusha

Offline

Hey girl. I am sorry that you tested positive. I can't believe that you are
having to live with that news alone. I am also sorry to hear about your mom.

I am not really good at giving advice but I hope that what I say helps a little.

You need some kind of support system. I know that it is going to be hard. But
you need to tell them and make them acknoledge the huge white elephant in the
room. They may be hurt that you haven't told them yet or even involved them. But
really it is time to face some facts. I know that it us scary and hard, this
disease doesn't make anything easy. Just sit them down and talk about it. If
they don't want to hear it, then find a good way to get some kind of support.
Like join an HD advocacy group these people will know what you are feeling and
going through. Also talking to a counselor is probably a great idea.
  I am so sorry that this is happening to you. I will be keeping you in my
thoughts and prayers. Just know that you aren't alone. We are all here for you.

Good luck
brandie




>
> As I am sat here just thinking about what I am about to set in motion i feel
physically sick.
>
> I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i
wa
17 and from then on Huntington's was never spoken about in the family - it's
like the dirtiest word you could ever bring up and buried so deep down under the
ground that sometimes you daren't even think the word "Huntington's". I tried to
broach the subject that I wanted to be tested with my Dad and sister and they
wanted nothing to do with it. I however, couldn't exist not knowing if I had it
or not - it was all I could think about - so I decided to get tested against the
wishes/knowledge of my family. I had the idea in mind that surely i would test
negative and then i could deliver the happy news... WRONG; i tested positive and
hence have found myself in a pickle. How to tell my family.
>
> Much to my shame it is now 3 and a half years down the line and for want of
not hurting anybody i have not told them i have it. I have hidden this secret so
deep down and it's slowly eating away at my soul now.
>
> What do i do? How do i tell them? They will be so angry when i tell them how
long i've known for - but also - i did it behind their backs... even though i
felt like they left me no choice.
>
> I appreciate any feedback.
>
> Sammy
>

#7012

From: Scott <scott_v1963@...>
Date: Sat Nov 28, 2009 4:53 am
Subject: Re: [huntington's at risk] I need your help

scott_v1963

Offline

pickle is good word for it.

They don't want to knw so you owe nothing to them in terms of telling them.

On the other hand there is always a chance that they will more supportive than you think.

Broach the subject with only one first. that may help relieve some of the pressure you feel while also giving you another point of view when deciding when and whether or not to tell the other.

Just one @risker's opinion. Good Luck!

scott

From: dancingangelssammy <dancingangelssammy@...>
To: huntingtonsatrisk@yahoogroups.com
Sent: Fri, November 27, 2009 4:36:15 PM
Subject: [huntington's at risk] I need your help

Hello everybody.

I need your help.

As I am sat here just thinking about what I am about to set in motion i feel physically sick.

I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i was 17 and from then on Huntington's was never spoken about in the family - it's like the dirtiest word you could ever bring up and buried so deep down under the ground that sometimes you daren't even think the word "Huntington' s". I tried to broach the subject that I wanted to be tested with my Dad and sister and they wanted nothing to do with it. I however, couldn't exist not knowing if I had it or not - it was all I could think about - so I decided to get tested against the wishes/knowledge of my family. I had the idea in mind that surely i would test negative and then i could deliver the happy news... WRONG; i tested positive and hence have found myself in a pickle. How to tell my family.

Much to my shame it is now 3 and a half years down the line and for want of not hurting anybody i have not told them i have it. I have hidden this secret so deep down and it's slowly eating away at my soul now.

What do i do? How do i tell them? They will be so angry when i tell them how long i've known for - but also - i did it behind their backs... even though i felt like they left me no choice.

I appreciate any feedback.

Sammy

#7011

From: "dancingangelssammy" <dancingangelssammy@...>
Date: Fri Nov 27, 2009 10:36 pm
Subject: I need your help

dancingangel...

Offline

Hello everybody.

I need your help.

As I am sat here just thinking about what I am about to set in motion i feel
physically sick.

I am 24 and when i was 20 i tested positive for HD. My Mum died of HD when i was
17 and from then on Huntington's was never spoken about in the family - it's
like the dirtiest word you could ever bring up and buried so deep down under the
ground that sometimes you daren't even think the word "Huntington's". I tried to
broach the subject that I wanted to be tested with my Dad and sister and they
wanted nothing to do with it. I however, couldn't exist not knowing if I had it
or not - it was all I could think about - so I decided to get tested against the
wishes/knowledge of my family. I had the idea in mind that surely i would test
negative and then i could deliver the happy news... WRONG; i tested positive and
hence have found myself in a pickle. How to tell my family.

Much to my shame it is now 3 and a half years down the line and for want of not
hurting anybody i have not told them i have it. I have hidden this secret so
deep down and it's slowly eating away at my soul now.

What do i do? How do i tell them? They will be so angry when i tell them how
long i've known for - but also - i did it behind their backs... even though i
felt like they left me no choice.

I appreciate any feedback.

Sammy

#7010

From: huntingtonsatrisk@yahoogroups.com
Date: Mon Nov 23, 2009 6:04 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		Dominics Birthday

Date:		Tuesday November 24, 2009
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

Reply | Forward | Messages in this Topic (98)

#7009

From: "Michelle Routhieaux" <whatnomuffins@...>
Date: Wed Nov 18, 2009 7:33 am
Subject: Message from Matty Ellison about new HD website

mrouthieaux

Online Now

Hey,

I got this message from Matty Ellison this morning on FB and thought it would be great to pass along to the lists. You can send your reply to him directly at just1moreperson@....

Michelle

Fw-----

Hi everyone!

There are plans to make a new international HD website for the whole community to use. Before anything is done they want to know what the HD community wants to see on the site.

One of the things brought up is the need of HD research in an language all of us non scientists can understand. But we need lots of ideas from you guys to make the website worth making.

So what would you like to see on an HD website that you don't feel is properly covered right now?

____________________________________________________________
Save $10 on Flowers and Gifts!
Shop now at www.ftd.com/16714

#7008

From: "Michelle Routhieaux" <whatnomuffins@...>
Date: Thu Nov 12, 2009 6:45 am
Subject: Non-HD: Help for a Friend in Need

mrouthieaux

Online Now

Hi Guys,

I posted this on my Facebook tonight but wanted to send it to you too. I have a friend from way back who's going to lose to his mother's house if he can't find/raise/beg/borrow/steal $600 by Nov. 22nd to make one extra payment on the mortgage. Details below. So he set his status on FB to say he was dreaming of finding 40 friends to give him $15, and friends started to help. So now he only needs $210 more and they'll be safe.

I know none of you know him but I'm asking anyway for your help in helping this friend. I know I send money to feed children in Africa I've never met and have sent many letters myself soliciting funds for charities, HD, etc. If you can, please send something. If not, maybe just a prayer. Thanks. I know he and his mother will appreciate it. :)

Michelle

My Facebook Blurb:
Okay, here's the deal. Great friend Daniel needs help. Short version: Mom had stroke, now they're broke, need $210 to save the house and save the day. Info for how to send money through Paypal and more details are in the note. Please send whatever you can. He did the math for $15 a person but every penny counts! Be part of a miracle today. Thanks! :)

A Pleading Plea for Help Please!
Daniel Baca

I know this is becoming and old song for some, and I expect never to have to sing it again so often,; however, A situation arose last week that is both hopeful and stressful for my mother and me. To resolve it, I need 14 friends to give my mother $15.00 each by the 23rd to make a second, one-time only payment to her mortgage lender to stop foreclosure. Here is the back story.

Since my mother came home from the nursing facility, after her stroke, we have been paying smaller amounts on our mortgage to keep up with the increased bills. Well, the mortgage lender decided to start foreclosure on the house and I have been trying to get them to work with us. Last Wednesday, I finally reached a person who had the authority to do just that.

As it happens, all the help we have received has worked miracles to get us on an even keel again. The original expenses, like my mother's liquid food and equipment rentals, have all been paid down to levels where we can not only afford to pay the full mortgage payment every month, but also have her supplies delivered, pay the utilities, and still have some left over for a few groceries, and incidental expenses. After going over all our expenses with the lender, he offered to let us pay one extra (EXTRA) full payment this month (that is in addition to the regular payment we already made) and our account would be marked as current. The amounts we owed from the smaller payments would be tacked onto the end of the loan, meaning we would have another couple of decades to pay them. This is great news. He made this deal because we DID send smaller payments before, instead of sending nothing at all.

The payment is just shy of $600 and we certainly did not have that in the bank. After a while thinking about it, I posted a single status message here on FaceBook : Daniel Baca Is daydreaming about finding 40 friends who will donate $15 each to help me save the house.

The response was heartwarming. As of today, 24 people, many of them people I met only on FaceBook, have sent money to my mother's PayPal account.two more have pledged help, and so I am looking for 14 final friends to help me make this payment and save my mother's house.

Once this payment is made, we will be in a position to meet all her bills and still have a little bit left over to survive every month. It will be tight living, but I have applied for help that should give us breathing room. The help just isn't going to come in time for this.

I know that some of you have helped me materially in the past, and I am loathe to ask for more help. But if you know of anyone who wants to help me and hasn't had the chance, for whatever reason, please, forward this note to him or her.

Just a few days ago, I was given a number of pledges, but then informed by almost all of the people that circumstances arose in their own lives that required them to withdraw their pledges. While disappointing, I was not going to begrudge them taking care of their own. But it does require me to ask for help once again. That is the stressful part.

How to Help:
We have been using PayPal for the gift campaign, and it takes 4 days for funds withdrawn from PayPal to be deposited into the bank account. The 27th is the due date to pay, so I am hoping to get as many transfers done by the 23rd as possible to have complete funds available on the due date.

Anyone who wants to send a gift through PayPal simply put odellnet@... as the recipient. If a person wants to send a physical check through the mail, please make it out to Wilma J. Odell, and send it to 32974 Mesa Dr, Lake Elsinore, CA 92530.

I have been updating campaign news in my status message, so as we get closer to the goal, fewer people need to respond. that way, we don't have more money coming in than we absolutely need.

____________________________________________________________
Doctorate Degrees Online
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#7007

From: Brandie DeRusha <brandie.derusha@...>
Date: Sun Nov 8, 2009 6:44 pm
Subject: Nov. 10-11th San Antonio, TX - Wexler's to speak at UTSA on Huntington's Disease

brandie.derusha

Offline

Wow. Is there any way that those of us  not able to attend can get an audio
recording of it? It sounds like a great opportunity.

Sent from my iPhone

#7006

From: "Jean E. Miller" <jemiller@...>
Date: Sun Nov 8, 2009 2:14 pm
Subject: Nov. 10-11th San Antonio, TX - Wexler's to speak at UTSA on Huntington's Disease

hdcureit

Offline

http://www.utsa.edu/today/2009/11/wexlerlectures.html

For those in the area, these events are hosted on by the University of Texas at San Antonio and are open to the public. For more information, contact Salma Quraishi at (210) 458-7493.

Tuesday Nov.10 5PM - Alice Wexler will speak on "Stigma, Secrecy and Medical History: What Can We Learn from Huntington's Disease?" at University Center Retama Auditorium (2.02.02) on the Main Campus. Free and open to the public, a reception will precede the lecture at 4:30 p.m.

Wednesday Nov.11th 6PM - Nancy Wexler will speak on "Expansions on a Dream: From Cause to Cure of Huntington's Disease" in the Main Building Auditorium (0.104) on the Main Campus. Free and open to the public, a 5:30 p.m. reception will precede the lecture.

Sibling researchers on Huntington's disease to speak at UTSA Nov. 10-11

By Christi Fish Public Affairs Specialist

(Nov. 5, 2009)--The UTSA Neurosciences Institute will present two lectures Nov. 10-11 by sibling scholars Alice Wexler and Nancy Wexler, who are researching different aspects of Huntington's disease, which also has directly affected their family. The evening lectures are free and open to the public.

UCLA historian Alice Wexler will speak on "Stigma, Secrecy and Medical History: What Can We Learn from Huntington's Disease?" at 5 p.m., Tuesday, Nov. 10 in the University Center Retama Auditorium (2.02.02) on the Main Campus. Free and open to the public, a reception will precede the lecture at 4:30 p.m.

Columbia University Professor Nancy Wexler will speak on "Expansions on a Dream: From Cause to Cure of Huntington's Disease" at 6 p.m., Wednesday, Nov. 11 in the Main Building Auditorium (0.104) on the Main Campus. Free and open to the public, a 5:30 p.m. reception will precede the lecture.

The joint lectures highlight two academic perspectives on Huntington's disease from gifted scholars who have had excruciatingly personal experience with the malady. Sisters Nancy Wexler and Alice Wexler are at risk of Huntington's disease, a degenerative disorder of the nervous system that took their mother's life.

Subsequently, both women have committed their personal and professional lives to advocacy and study of the fatal disease. Alice's work pursues the disease from historical and sociological perspectives; Nancy's work focuses on its biological basis and developing a cure.

In a compelling twist, Nancy Wexler's scientific quest led her to a remote jungle region of Venezuela, where she had the opportunity to live among and study the genes of a large, isolated family with a high instance of Huntington's disease. This seminal work led to the 1983 discovery of a genetic marker for Huntington's disease and to the 1993 discovery of the gene that causes the disease.

Alice Wexler, who is a fellow at the UCLA Center for the Study of Women accompanied her sister on this mission and wrote about it in her memoir, "Mapping Fate: A Memoir of Family, Risk and Genetic Research." Her subsequent work has focused on detailing the history and lived experience of the disease in the context of expanding medical knowledge.

The lecture by Alice Wexler is sponsored by the UTSA Neurosciences Institute in the College of Sciences, the UTSA American Studies Program and the UTSA Honors College. The lecture by Nancy Wexler is part of the UTSA Neurosciences Institute Distinguished Public Lecture Series.

For more information, contact Salma Quraishi at (210) 458-7493.

About the speakers

Nancy Wexler, president of the Hereditary Disease Foundation, is the Higgins Professor of Neuropsychology in the Departments of Neurology and Psychology at Columbia University's School of Physicians and Surgeons. She is the recipient of numerous awards, including the Albert Lasker Public Service Award in 1993. Her research has led to the development of a pre-symptomatic test for Huntington's disease and ultimately to the identification of the gene that causes the disease.

Historian Alice Wexler is the author of "Mapping Fate: A Memoir of Family, Risk and Genetic Research" and "The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease," both historical texts about Huntington's disease. For the latter, she won the 2009 American Medical Writers Association Medical Book Award. She is a research scholar at the UCLA Center for the Study of Women.

About the UTSA Neurosciences Institute

The UTSA Neurosciences Institute is a multidisciplinary research organization for integrated brain studies. The institute's mission is to foster a collaborative community of scientists committed to studying the biological basis of human experience and behavior, and the origin and treatment of nervous system diseases. Its areas of focus include nervous system development; neuronal and network computation; sensory, motor and cognitive function; learning and memory and the disease processes that impact them; implementing mathematical and computational tools in experimental neurobiology; and mathematical theory of neurons and nervous systems. Learn more or make a gift at the UTSA Neurosciences Institute Web site.

#7005

From: michelle wooley <michwooley@...>
Date: Fri Nov 6, 2009 8:11 pm
Subject: Re: [huntington's at risk] Prayer for Stephanie at Fort Hood

michwooley

Offline

prayers are going out right now!!

Michelle

--- On Fri, 11/6/09, Terry Hagopian <rxforlife@...> wrote:

From: Terry Hagopian <rxforlife@...>
Subject: [huntington's at risk] Prayer for Stephanie at Fort Hood
To: "Aunt Alice" <lizoldham@...>, "Barbara Maldonado" <bmaldonado@...>, "Barbara T. Boyle" <mperez@...>, "Betsy Verhoeven" <heybets@...>, "Bud Paine" <dj_skribb@...>, "CPhT Joe Medina" <joemedina@...>, "Craig Liu" <craig@...>, "Dan and Carolyn Copeland" <dccopes@...>, "Dave and Juli Van Essen" <dvanessen@...>, "Denise Tamminga" <dtamminga@...>, "dianne wise" <diannewise2003@...>, e-cards@..., "Esurance" <quote@...>, "Facebook" <notification+iozloiv1@...>, garyswilhite@..., "Gloria Allred" <notify@...>, "GvtPackage" <gvtpackage@...>, hagopianra@..., health@..., "HP Registration" <registration@...>, "Human Resources" <humanresources@...>, "huntingtonsatrisk@yahoogroups.com" <huntingtonsatrisk@yahoogroups.com>, "In Touch" <e-newsletter@...>, "James Vreeke" <jkvreeke5@...>, jjoreid@..., johnsthetaxman@..., "Joyce Meyer Ministries" <joycemeyerministries@...>, "Kraft Kitchens" <kraft.kitchens@...>, "Kris Paine" <realninjuz@...>, landonv@..., "Lanell Darnell" <ldarnall@...>, "Lannis Perucci" <peruccifam@...>, "Legal Advice" <legaladvice@...>, lgriffin2005@..., "Linda White" <lwhit@...>, "lisa bryant" <lisa@...>, "Lou Jacobs" <ljacobs@...>, "LOU JACOBS" <lousmc@...>, "Luxury Portfolio" <communications@...>, "Margaret Streelman" <mstreelman@...>, "Marilyn and Sarah" <listserv@...>, "Mark Massey" <mark-massey@...>, "mike berreyesa" <mikeberreyesa@...>, "National MS Society Southern California Chapter" <ms@...>, "Pam dinnen" <pamdinnen@...>, "Pastor Bonnie Mulder-Behnia" <bmulderbehnia@...>, "Pastor Dan & Cheri" <thebrinkfamily@...>, "Pat Verhoeven" <patvz3@...>, ralphnclaudia@..., rcswear@..., "Rochelle" <dr.rocket@...>, rxforlife@..., "Sabrina Roberts" <sebiecat57t@...>
Date: Friday, November 6, 2009, 1:07 PM

Praying for Protection for my daughter Stephanie currently Stationed at Fort Hood , Texas.

Keep your eye on the miracle !!!!!!!!!!!! !!

Love

Terry

Hotmail: Trusted email with powerful SPAM protection. Sign up now.

#7004

From: Terry Hagopian <rxforlife@...>
Date: Fri Nov 6, 2009 6:07 pm
Subject: Prayer for Stephanie at Fort Hood

whynotandwha...

Offline

Praying for Protection for my daughter Stephanie currently Stationed at Fort Hood , Texas.

Keep your eye on the miracle !!!!!!!!!!!!!!

Love

Terry

Hotmail: Trusted email with powerful SPAM protection. Sign up now.

#7003

From: huntingtonsatrisk@yahoogroups.com
Date: Thu Oct 29, 2009 5:08 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com

Reminder from:		huntingtonsatrisk Yahoo! Group

Title:		Steves Birthday

Date:		Friday October 30, 2009
Time:		All Day
Repeats:		This event repeats every year.

Yahoo! Greetings:		Send a Yahoo! Greeting
Yahoo! Shopping:		Browse Yahoo! Shopping Gift Guide

Get reminders on your mobile, Yahoo! Messenger, and email. Edit reminder options

Reply | Forward | Messages in this Topic (98)

#7002

From: "Jean E. Miller" <jemiller@...>
Date: Mon Oct 26, 2009 1:07 pm
Subject: North Carolina HD Patients & Family Getting A Virtual Care Center

hdcureit

Offline

http://durhamcounty.mync.com/site/durhamcounty/news%7CSports%7CLifestyles/story/43574/huntingtons-patients-and-families-will-get-help-through-virtual-care-center

For those that aren't aware of this excellent new program for HD families in North Carolina! Note this part - "All NC-CCHD programs are free of charge and funded entirely by charitable donations." Wouldn't it be wonderful to see this type of facility opened up in all major cities in the US!

You can watch the video of this exciting news coverage of this story on the below link to learn how they are pulling together experts from several North Carolina medical facilities to work together to help HD patients and family.

Huntington�s Patients And Families Will Get Help Through Virtual Care Center

By Julie Henry, NBC17 Oct. 23, 2009

DURHAM, N.C. - There are fewer than 600 diagnosed Huntington's Disease patients in North Carolina, but doctors believe there could be many more who go undiagnosed for years. A new virtual care center promises better access to knowledgeable doctors and to help for families strained, financially and emotionally, by the fatal brain disorder.

Because Huntington's is inherited, most people find out they have it after someone else in their family is diagnosed. Will Brown of Raleigh found out six years ago after his brother was diagnosed. "By process of elimination, we're quite sure it came from my father's side," said Brown. "But he died with no visible symptoms, so it really snuck up on both myself and my brother."

Experts say the onset of symptoms varies from person to person. Brown's brother, who is three years younger, is much more advanced in his disease. Brown, who is running his 33rd Marine Corps Marathon on Sunday, credits his continued good health to being informed about the disease. "As soon as I decided to test, that's when I went looking for information," said Brown.

Dr. Mary Edmondson sees a number of HD patients in her psychiatric practice and at Duke University Medical Center. As part of the leadership team for the new North Carolina Center for the Care of Huntington's Disease, she is looking forward to having a single point of contact to offer patients and their families. "The center is going to bring together professionals who have specific expertise, including movement disorder specialists, psychiatrists and others who can address the physical, nutritonal and language deficits of Huntington's," she said.

Edmondson said the number of specialists able to provide care has grown over the 28 years since she got involved, but they are scattered across the state. The center will offer access via the web as well as a telephone advice line to provide referral information. Find out more about the new center at www.nc-cchd.org.

-----------------

North Carolina Center for the Care of Huntington's Disease

Website - www.nc-cchd.org.

Thank you for your interest in the NC-CCHD. We are currently in the process of building our website to serve Huntington's patients, their families, and the medical community. Please check back soon! If you would like to make a donation, please click the Donate Now button.

The North Carolina Center for the Care of Huntington's Disease is a non-profit organization dedicated to providing access to medical care and assistance to any individual or family in North Carolina affected by Huntington's Disease.

Access to knowledgeable health care has always been a problem for HD families in North Carolina. NC-CCHD will provide crisis intervention services, streamlined access to expert care and genetic testing services, information about research opportunities, family support and caregiver education. As needs arise, NC-CCHD will create partnerships with other organizations that help HD patients and family members - from specialized HD clinics, to support groups, hospitals, nursing care facilities, public charities, government programs and local community resources.

All NC-CCHD programs are free of charge and funded entirely by charitable donations.. Email us at hdinfo@nc-cchd

=======

FYI - Dr. Mary C. Edmondson, M.D. - Psychiatry

Board Certified - American Board of Internal Medicine and Psychiatry/Neurology
Residency: Duke UNIV. Medical Ctr. 1998-2002
1004 Dresser Court Suite 107
Raleigh, NC 27609
Phone: (919)876-3330 / Fax: (919)876-3325

1 of 1 Photo(s)

Norther Carolina Center for the Care of Huntington's Disease.jpg

#7001

From: "Jean E. Miller" <jemiller@...>
Date: Mon Oct 5, 2009 4:21 pm
Subject: New On-Line Suport Group, HD-SOUL, For Young-Adult Carers

hdcureit

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This message is to make you aware of a new on-line support group, "HD-SOUL" [Significant Others United in Love], that is specifically for young-adults [18 to 40] who are involved in a long term relationship with a young adult who has been diagnosed as HD positive. I apologize for the length of this message, but first we'd like to provide you with a little background:

We all know that Huntington disease is commonly diagnosed in young to middle adulthood and most us are aware that HD is discussed more openly in families today then ever before in the past. In recent years there have been many studies on the emotional aspects to HD caregivers that contribute to overall problems in the family. Most recently was a 2009 study Dr. Jane Paulsen and others at the University of Iowa, "The emotional experiences of family carers in Huntington disease" where the findings were that being a carer was described as experiencing disintegration of one's life. That study reported that spousal carers were distressed by the loss of their relationship with their spouse and dealt with this by no longer regarding the person as an intimate partner. Carers were concerned about the disease risk for children in their families and hoped for a cure. The study concluded that the emotional distress can compromise the well-being of family carers who attempt to maintain multiple roles and recommends that professionals monitor carer mental health, identify sources of emotional distress and support effective strategies used by carers to mediate distress. However, neither this nor other studies have addressed the specific environment for young-adult carers.

As the Adult Advocates to the HDSA NYA, in the past few years Dave, Susie and I have witnessed more young adults members enter into in a relationship with someone who has tested HD positive with full intentions of staying in those relationships with a strong commitment for the long-haul. In addition, before the convention, a couple of people from different HDSA Chapters had talked to me about the need they

were seeing for education and support for young adults who are involved with a partner with HD. As the 'significant other' of someone who has tested HD positive, these young carers are attending HDSA Conventions, HDSA Chapter Educational symposiums and any other resource they can find to help them.

We have discussed that HDSA Chapters might not be drawing young-adults in as new members with National, because their needs are different. From some of the feedback we have gotten from young adults carers, they don't feel that a Chapter can relate to their life-situations. Because they are of a younger generation, their needs are different then what most of us 'old-timers' consider a 'typical' HD carer is looking for in information. We have suggested that HDSA consider sessions geared to the needs of these young-adult caregivers at future conventions. This is also something that HDSA Chapter's might want to consider including in their own educational programs.

Today's young-carers are typically involved with someone who is non-symptomatic or whose symptoms may have recently started. They're not looking for education and support on the mid-to-later stages of HD. They're looking for considerations and options on having children, for suggestions on how they can best help their young-significant other stay active, pro-active and involved in helping to manage their HD symptoms; they want to know, besides Advance Directives, what should young couples in a committed long-term relationship be seeking? For recommendations on how to handle conflicts of interest, advice on handling financial responsibilities....and the list goes on.

Until more education and resources written specifically for these young-adult carers, there is a real need for a safe haven where they can offer support to each other and share their experiences on what has and hasn't worked in their relationships. This past week, after I talked to yet another parent who told me that her HD positive married young-adult's spouse was in dire needed support, Dave, Susie and I had a conference call and decided to start an on-line support group for these young-adult carers.

After we agreed on a name for the group yesterday, Dave opened up the HD-SOUL on Yahoo. Below is the message Dave posted to the HDSA National Youth Alliance members on Yahoo about the new HD-SOUL on-line group. It is our hopes you will share this message with any young-adults in your HDSA Chapter or Support Groups, 19 to 40 years of age, who are either engaged, have a partner or are married to a young adult [i.e. significant other] who have tested HD positive and are looking for support.

If you have any questions about the HD-SOUL group, please feel free to contact any one of us:

Dave Hodgson - HD-SOUL Group Owner spiketdog@...

Sue Hodgson - sue_angels@... or Jean Miller - jemiller@... - HD-SOUL Group Moderators

Thank you!

===========================================

From: "Dave Hodgson" <spiketdog@...>
To: <HDSAyouth@yahoogroups.com>
Sent: Sunday, October 04, 2009 8:38 PM
Subject: New On-Line Support Group

I've just created a new on-line support group, called HD-SOUL. The HD is obvious, the SOUL stands for Significant Others United in Love. HD-SOUL is a group for the significant others of those at-risk for Huntington's Disease or who have tested positive for HD. It was created to be a safe haven where a significant other could post questions, share care-giving tips, or vent without fear of hurting the feelings of their loved one. The age range of this group is 19 to 40 years of age. The goal is to provide a POSITIVE supportive environment. Go to http://groups.yahoo.com/group/hdsoul and join!

Some felt a need for a group of SO's who are younger than those who subscribe to HDCaregivers. Many of our NYA youth have grown up in the NYA and gotten married, had kids, and are now beginning to show symptoms. This may be an unusually hard time for their significant other and so this group hopefully will provide support to that significant other as they care for their affected loved one.

As the moderator of this group, I will have to *approve* each membership request, based upon you submitting your first and last name, your date of birth, and how you are related to someone who is either at-risk for or has tested positive for HD. The age restrictions, as stated above, may be loosened up as needed, on a case by case basis. The important thing is that this is a SAFE place where you may talk about anything related to HD, whether it be care giving problems, care giving suggestions, specific problems in your relationship with your affected loved one, but is not a place to discuss politics or religion, without worry that your loved one will know what you are talking about.

If you are at risk or have tested positive for HD and are in a relationship or are married, please let your SO know about this new support group.

Both Susie Hodgson, Jean Miller, and I will, from time to time, add our two cents to postings when we feel we might be able to help solve a caregiving problem or add insight to what your affected loved one is going through. Having traveled the entire path from beginning to end of this horrible disease that affects all of us, we may be able to help your SO better understand their feelings and emotions as they caregive for their affected loved one. Please keep in mind that we are ALL volunteers and any information or help anyone provides is based upon THEIR experience and may not work for your SO.

In Peace and Love
Dave Hodgson

#7000

From: "Dave Hodgson" <SpikeTDog@...>
Date: Mon Oct 5, 2009 4:32 am
Subject: HD and Tele-medicine, Rockford Illinois

spketdog

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For those of you in the greater Chicagoland area (Milwaukee to Munster) you
are invited to the Illinios Chapter-HDSA Rockford mini-convention on October
17, 2009.  Please click on this link, http://www.hdsa-il.org/id34.html to
register.  The mini-convention is free and will introduce tele-medicine to
the attendees.  We are hopeful that tele-medicine will be a way to reach out
to those who cannot make the sometimes tedious drive to a Center of
Excellence.  We need your pre-registration in order to plan the food for the
lunch.
Peace and love
Dave Hodgson

Illinois Chapter TEAM HOPE-Walk For A Cure
http://www.HDWalk.org
Ill. Chapter-HDSA Web Page
http://www.hdsa-il.org
Sponsor Dave & Susie's Walk
http://www.firstgiving.com/DaveandSusie

#6999

From: "c_rhook" <c_rhook@...>
Date: Thu Oct 1, 2009 11:33 am
Subject: hi im new

c_rhook

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hi im Cassie im married with three children.. i am at risk as my mother has HD.
i already had my first 2 children b4 we knew about HD in our family.
my aunty was diagnosed in 2005 and it was ther first time we had heard of HD..
my grandfather (mothers dad) had died when my mum was 8 and my grandmother never
met his family..
anyway my mum was tested positive in 06.. my aunt passed away in 2008.. and my
mum is going down hill very quickly.. i think she may have given up..
when i fell pregnant in 2008 i was very confused as what to do so we had the
baby tested for HD and it came back neg!! but now i worry about my other 2
children :(
i really want to find out i dont have HD but dont think i cound handle finding
out i do..
my family dont like talking about anything and my husband is great but he doesnt
really understand. my mum is one of five children three had HD and two dont..
they all have kids apart from one she doesnt have kids and doesnt have HD..
anyways enough about me..
i would like to know every thing i posibly could about this horrible diease and
to talk to others in the same situation as me
  thanks
cassie

#6998

From: huntingtonsatrisk@yahoogroups.com
Date: Sun Sep 27, 2009 5:06 am
Subject: Birthday Reminder

huntingtonsatrisk@yahoogroups.com