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#5413 From: VADA MERCER <vadamercer@...>
Date: Tue Mar 14, 2006 3:17 pm
Subject: Re: [huntington's at risk] My Hero! 		vadamercer
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Dear Brandie,
You honestly made my day !  Sometimes I get down, and it's people like you that keep my spirits up. 
Thank you, Thank you, Thank you.
Love,
Vada

Brandie <rainbowstar_2003@...> wrote:
If you are a cargiver to a person with HD, I personally want to say,
thank you! It is probably the one of the hardest tasks in life, if not
the most painstaking. Its not something that you plan on doing with
your life, but you take on the task for the person that you love. It
isnt about you anymore it is for the wellbeing of that other person,
who, even though they might say that they hate you to your face, could
not live without you. God deffenatly knew that you would have to face
these trials, but He knew that He could trust you to handle it. Jesus
said, "for if you do to the Least of these, you have done unto me".

I wanted to let all of you if you are a caregiver like my father, you
are my hero! I love you!





Reply | Forward | Messages in this Topic (3)
#5412 From: Jennifer Duell <fred_rica@...>
Date: Tue Mar 14, 2006 12:57 pm
Subject: Re: [huntington's at risk] I knew this day would come....... 		fred_rica
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Rhonda,
 
I think the first step would be for you to be tested.  If your test came back negitive then there is really no need for him to be tested.  ANd, yes, before either of you get tested you will need to get things in order (ie: life insurance, health insurance, etc).
 
Jennifer

Rhonda Holscher <sawedoffrunt69@...> wrote:
....but I did not expect it to come so soon. Caleb wants to get tested! He will be 13 this summer.
 
We talked about it. I asked him why? He said because he wanted to live his life differently or something like that. So I asked him questions about that. You know what would he do different if he had HD? And we talked about those things and how he could and should do those things anyway.
 
We talked about the possibility of it being positive and him not being able to handle the results. What if it depressed him and he couldn't deal with it? He thinks he can handle it?
 
We also talked about the things that you normally don't think about until you are grown up and that is life insurance, etc., and I told him that IF and before he was tested I would want to get some things in order for him just in case he was positive. I also explained to him that there are some things that I need to get in order for myself before this is done, and right now I am not financially in a position to do this. I am still awaiting my court date for my social security hearing and it's really starting drag out
 
Basically I ended it with this. "Let me get my things in order and I'll get tested. If my test comes back positive then we will talk about you getting tested."
 
The question is is he to young to let him to be tested should it come to that? Is he old enough to make that decision for himself? This is a very difficult one he seemed very mature about the whole thing and certain about what he wanted, and he wants to know. I'm pretty sure he wants to know one way or another he wants to know. The things that scares me is that he is just entering his teenage years and you all know how the emotional roller coaster of hormones can be through these years, and what if he does want to know today and maybe even tomorrow and he's fine whatever the outcome, but then he hits a low point and he's not fine with it anymore. The teen years are so touch and go for some teens I don't know if it's worth the risk.
 
Just wanted some feedback from you all on this. Especially the YOUNGER crowd and those who have been through this with the younger crowd. And the pro's are welcome to give some feedback here as well.
 
Thanks,
Rhonda
 


  Rhonda Holscher 
(513) 257-9609
 
 
 
 
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Reply | Forward | Messages in this Topic (5)
#5411 From: Rhonda Holscher <sawedoffrunt69@...>
Date: Tue Mar 14, 2006 7:53 am
Subject: I knew this day would come....... 		sawedoffrunt69
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....but I did not expect it to come so soon. Caleb wants to get tested! He will be 13 this summer.
 
We talked about it. I asked him why? He said because he wanted to live his life differently or something like that. So I asked him questions about that. You know what would he do different if he had HD? And we talked about those things and how he could and should do those things anyway.
 
We talked about the possibility of it being positive and him not being able to handle the results. What if it depressed him and he couldn't deal with it? He thinks he can handle it?
 
We also talked about the things that you normally don't think about until you are grown up and that is life insurance, etc., and I told him that IF and before he was tested I would want to get some things in order for him just in case he was positive. I also explained to him that there are some things that I need to get in order for myself before this is done, and right now I am not financially in a position to do this. I am still awaiting my court date for my social security hearing and it's really starting drag out
 
Basically I ended it with this. "Let me get my things in order and I'll get tested. If my test comes back positive then we will talk about you getting tested."
 
The question is is he to young to let him to be tested should it come to that? Is he old enough to make that decision for himself? This is a very difficult one he seemed very mature about the whole thing and certain about what he wanted, and he wants to know. I'm pretty sure he wants to know one way or another he wants to know. The things that scares me is that he is just entering his teenage years and you all know how the emotional roller coaster of hormones can be through these years, and what if he does want to know today and maybe even tomorrow and he's fine whatever the outcome, but then he hits a low point and he's not fine with it anymore. The teen years are so touch and go for some teens I don't know if it's worth the risk.
 
Just wanted some feedback from you all on this. Especially the YOUNGER crowd and those who have been through this with the younger crowd. And the pro's are welcome to give some feedback here as well.
 
Thanks,
Rhonda
 


  Rhonda Holscher 

(513) 257-9609

rrholscher@...

sawedoffrunt69@...

 

 

 

 

Relax. Yahoo! Mail virus scanning helps detect nasty viruses!

Reply | Forward | Messages in this Topic (5)
#5410 From: "Sue Adams" <angelrose@...>
Date: Tue Mar 14, 2006 5:04 am
Subject: Re: [huntington's at risk] My Hero! 		susie_que_56
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Brandie, what a lovely thing to say, it really makes a heart fill with  joy
knowing someone has thanked caregivers for the thankless job they do for or
out of love.
Thank you Brandie for remembering all the Caregivers.

Susie

Sue Adams
WIU Student
MAT 105 KM88
HHS 300 K8D9
angelwhisper@...
----- Original Message -----
From: "Brandie" <rainbowstar_2003@...>
To: <huntingtonsatrisk@yahoogroups.com>
Sent: Monday, March 13, 2006 9:49 PM
Subject: [huntington's at risk] My Hero!


> If you are a cargiver to a person with HD, I personally want to say,
> thank you! It is probably the one of the hardest tasks in life, if not
> the most painstaking. Its not something that you plan on doing with
> your life, but you take on the task for the person that you love. It
> isnt about you anymore it is for the wellbeing of that other person,
> who, even though they might say that they hate you to your face, could
> not live without you. God deffenatly knew that you would have to face
> these trials, but He knew that He could trust you to handle it. Jesus
> said, "for if you do to the Least of these, you have done unto me".
>
> I wanted to let all of you if you are a caregiver like my father, you
> are my hero! I love you!

Reply | Forward | Messages in this Topic (1)
#5409 From: "Brandie" <rainbowstar_2003@...>
Date: Tue Mar 14, 2006 3:49 am
Subject: My Hero! 		rainbowstar_...
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Send Email Send Email
  
If you are a cargiver to a person with HD, I personally want to say,
thank you! It is probably the one of the hardest tasks in life, if not
the most painstaking. Its not something that you plan on doing with
your life, but you take on the task for the person that you love. It
isnt about you anymore it is for the wellbeing of that other person,
who, even though they might say that they hate you to your face, could
not live without you. God deffenatly knew that you would have to face
these trials, but He knew that He could trust you to handle it. Jesus
said, "for if you do to the Least of these, you have done unto me".

I wanted to let all of you if you are a caregiver like my father, you
are my hero! I love you!

Reply | Forward | Messages in this Topic (3)
#5408 From: "sukipea" <sukipea@...>
Date: Fri Mar 10, 2006 5:46 pm
Subject: Re: [huntington's at risk] Birthday Reminder 		sukipea
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Oops, I'm late! Belated happy birthday to you both!

--- In huntingtonsatrisk@yahoogroups.com, Kelly Goodwill
<kelmcg@...> wrote:
>
> HAPPY BIRTHDAY ALL!!!!!!!!!!!!!!!!!!
>
> Kelly,
> "Laugh it up fuzzball"
> Han Solo, Star Wars ESB.
>
> On Mar 9, 2006, at 7:04 AM, Michelle Routhieaux wrote:
>
> > Hey!  Today's my birthday too!  I'm 20!  Yeah!
> >
> > Michelle R :D
> >
> > -- huntingtonsatrisk@yahoogroups.com  wrote:
> >
> >
> > Reminder from the Calendar of huntingtonsatrisk
> > Papaws Birthday
> >
> > Thursday March 9, 2006
> > All Day
> > This event repeats every year.
> > Yahoo! Greetings
> > Send a Yahoo! GreetingFind Gifts
> > Browse Yahoo! Shopping's Gift Guide
> > ADVERTISEMENT
> >
> >
> > Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
> > Privacy Policy - Terms of Service
> >
> >
> > SPONSORED LINKS
> > 9;s disease Huntingtons disease
> >
> > YAHOO! GROUPS LINKS
> >
> >  Visit your group "huntingtonsatrisk" on the web.
> >
> >  To unsubscribe from this group, send an email to:
> >  huntingtonsatrisk-unsubscribe@yahoogroups.com
> >
> >  Your use of Yahoo! Groups is subject to the Yahoo! Terms of
Service.
> >
> >
>

Reply | Forward | Messages in this Topic (99)
#5407 From: Kelly Goodwill <kelmcg@...>
Date: Fri Mar 10, 2006 1:39 am
Subject: Re: [huntington's at risk] Birthday Reminder 		stekgrl
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HAPPY BIRTHDAY ALL!!!!!!!!!!!!!!!!!!

Kelly,
"Laugh it up fuzzball"
Han Solo, Star Wars ESB.

On Mar 9, 2006, at 7:04 AM, Michelle Routhieaux wrote:

> Hey!  Today's my birthday too!  I'm 20!  Yeah!
>
> Michelle R :D
>
> -- huntingtonsatrisk@yahoogroups.com  wrote:
>
>
> Reminder from the Calendar of huntingtonsatrisk
> Papaws Birthday
>
> Thursday March 9, 2006
> All Day
> This event repeats every year.
> Yahoo! Greetings
> Send a Yahoo! GreetingFind Gifts
> Browse Yahoo! Shopping's Gift Guide
> ADVERTISEMENT
>
>
> Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
> Privacy Policy - Terms of Service
>
>
> SPONSORED LINKS
> 9;s disease Huntingtons disease
>
> YAHOO! GROUPS LINKS
>
>  Visit your group "huntingtonsatrisk" on the web.
>
>  To unsubscribe from this group, send an email to:
>  huntingtonsatrisk-unsubscribe@yahoogroups.com
>
>  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>

Reply | Forward | Messages in this Topic (99)
#5406 From: VADA MERCER <vadamercer@...>
Date: Thu Mar 9, 2006 5:07 pm
Subject: Re: [huntington's at risk] Birthday Reminder 		vadamercer
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Happy Birthday Pawpa!!!

huntingtonsatrisk@yahoogroups.com wrote:

Birthday Reminder from the Calendar of huntingtonsatrisk
Papaws Birthday

Thursday March 9, 2006
All Day
This event repeats every year.
Yahoo! Greetings
Send a Yahoo! Greeting		 Find Gifts
Browse Yahoo! Shopping's Gift Guide
ADVERTISEMENT
Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
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Reply | Forward | Messages in this Topic (99)
#5405 From: VADA MERCER <vadamercer@...>
Date: Thu Mar 9, 2006 4:58 pm
Subject: Re: [huntington's at risk] Birthday Reminder 		vadamercer
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Happy Birthday Michelle R!!!   Hope the day is a GREAT one!
Vada

Lauren <angeleyesforyou@...> wrote:
Happy Birthday!

--- In huntingtonsatrisk@yahoogroups.com, "Michelle Routhieaux"
<whatnomuffins@...> wrote:
>
> Hey!  Today's my birthday too!  I'm 20!  Yeah!
> Michelle R :D
>
> -- huntingtonsatrisk@yahoogroups.com  wrote:
>
>
> <!-- |**|begin egp html banner|**| -->My Groups | huntingtonsatrisk
Main Page
> <!-- |**|end egp html banner|**| -->Reminder from the Calendar of
huntingtonsatriskPapaws Birthday
>
> Thursday March 9, 2006
> All Day
> This event repeats every year.
> Yahoo! Greetings
> Send a Yahoo! GreetingFind Gifts
> Browse Yahoo! Shopping's Gift Guide<!-- adstart -->ADVERTISEMENT
>      <!-- adend -->Copyright ?  2006  Yahoo! Inc. All Rights Reserved.
> Privacy Policy - Terms of Service  <!-- |**|begin egp html
banner|**| -->
> YAHOO! GROUPS LINKS
>  Visit your group "huntingtonsatrisk" on the web.
>    To unsubscribe from this group, send an email to:
>  huntingtonsatrisk-unsubscribe@yahoogroups.com
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>
> <!-- |**|end egp html banner|**| -->
>






Reply | Forward | Messages in this Topic (99)
#5404 From: "Lauren" <angeleyesforyou@...>
Date: Thu Mar 9, 2006 1:43 pm
Subject: Re: [huntington's at risk] Birthday Reminder 		yourbabydoll...
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Happy Birthday!

--- In huntingtonsatrisk@yahoogroups.com, "Michelle Routhieaux"
<whatnomuffins@...> wrote:
>
> Hey!  Today's my birthday too!  I'm 20!  Yeah!
> Michelle R :D
>
> -- huntingtonsatrisk@yahoogroups.com  wrote:
>
>
> <!-- |**|begin egp html banner|**| -->My Groups | huntingtonsatrisk
Main Page
> <!-- |**|end egp html banner|**| -->Reminder from the Calendar of
huntingtonsatriskPapaws Birthday
>
> Thursday March 9, 2006
> All Day
> This event repeats every year.
> Yahoo! Greetings
> Send a Yahoo! GreetingFind Gifts
> Browse Yahoo! Shopping's Gift Guide<!-- adstart -->ADVERTISEMENT
>      <!-- adend -->Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
> Privacy Policy - Terms of Service  <!-- |**|begin egp html
banner|**| -->
> YAHOO! GROUPS LINKS
>  Visit your group "huntingtonsatrisk" on the web.
>    To unsubscribe from this group, send an email to:
>  huntingtonsatrisk-unsubscribe@yahoogroups.com
>    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>
> <!-- |**|end egp html banner|**| -->
>

Reply | Forward | Messages in this Topic (99)
#5403 From: "Michelle Routhieaux" <whatnomuffins@...>
Date: Thu Mar 9, 2006 7:04 am
Subject: Re: [huntington's at risk] Birthday Reminder 		mrouthieaux
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Hey!  Today's my birthday too!  I'm 20!  Yeah!

Michelle R :D

-- huntingtonsatrisk@yahoogroups.com  wrote:

Birthday Reminder from the Calendar of huntingtonsatrisk
Papaws Birthday

Thursday March 9, 2006
All Day
This event repeats every year.
Yahoo! Greetings
Send a Yahoo! Greeting		 Find Gifts
Browse Yahoo! Shopping's Gift Guide
ADVERTISEMENT

Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
Privacy Policy - Terms of Service

Reply | Forward | Messages in this Topic (99)
#5402 From: huntingtonsatrisk@yahoogroups.com
Date: Thu Mar 9, 2006 5:03 am
Subject: Birthday Reminder 		huntingtonsatrisk@yahoogroups.com
Send Email Send Email
 
Birthday Reminder from the Calendar of huntingtonsatrisk
Papaws Birthday

Thursday March 9, 2006
All Day
This event repeats every year.
Yahoo! Greetings
Send a Yahoo! Greeting		 Find Gifts
Browse Yahoo! Shopping's Gift Guide
ADVERTISEMENT

Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
Privacy Policy - Terms of Service

Reply | Forward | Messages in this Topic (99)
#5400 From: huntingtonsatrisk@yahoogroups.com
Date: Wed Mar 8, 2006 6:00 am
Subject: Birthday Reminder 		huntingtonsatrisk@yahoogroups.com
Send Email Send Email
 
Birthday Reminder from the Calendar of huntingtonsatrisk
Papaws Birthday

Thursday March 9, 2006
All Day
This event repeats every year.
The next reminder for this event will be sent in 22 hours, 59 minutes.
Yahoo! Greetings
Send a Yahoo! Greeting		 Find Gifts
Browse Yahoo! Shopping's Gift Guide
ADVERTISEMENT

Copyright ©  2006  Yahoo! Inc. All Rights Reserved.
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Reply | Forward | Messages in this Topic (99)
#5399 From: Kelly Goodwill <kelmcg@...>
Date: Tue Mar 7, 2006 2:02 am
Subject: Re: [huntington's at risk] Re: SVU 		stekgrl
Offline Offline
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It's good to hear that it is being mentioned in many shows. It helps
get it around.


"I can't keep track of her when she not incoporeally possesing a
spaceship, don't look at me...."

Simon, Objects in Space, Firefly


On Mar 6, 2006, at 2:57 PM, Scott and Alicia Slawson wrote:

> Waita minute...  You're right! I think it was House
> that I saw it on, not Gray's.  Gotem' mixed up.  How
> typical. LOL
>
> --- elric428 <no_reply@yahoogroups.com> wrote:
>
> > It was also mentioned recently in a recent episode
> > of "House"
> >
> > --- In huntingtonsatrisk@yahoogroups.com, Scott and
> > Alicia Slawson
> > <theslawdawgs@...> wrote:
> > >
> > > I didn't see it on SVU but it was mentioned on
> > Gray's
> > > Anatomy a couple of weeks ago too...
> > >
> > > --- Lauren <angeleyesforyou@...> wrote:
> > >
> > > > Kelly,
> > > >
> > > > I saw that and was amazed!! I looked at my
> > husband
> > > > and asked him "Did
> > > > they really just mention HD?!" Glad to know I'm
> > not
> > > > the only one who
> > > > saw it.
> > > >
> > > > Lauren
> > > >
> > > > --- In huntingtonsatrisk@yahoogroups.com, Kelly
> > > > Goodwill <kelmcg@>
> > > > wrote:
> > > > >
> > > > > I don't know if anyone would acually know this
> > but
> > > > in Law and
> > > > > Order:SVU HD is mentioned. I thought this was
> > > > awesome. I had to
> > > > > acually do a double take on it. Ok, I know I
> > don't
> > > > post much knowing
> > > > > my luck this has already been mentioned. I
> > just
> > > > thought it was cool.
> > > > > Kelly,
> > > > > "Laugh it up fuzzball"
> > > > > Han Solo, Star Wars ESB.
> > > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > >
> > >
> > > __________________________________________________
> > > Do You Yahoo!?
> > > Tired of spam?  Yahoo! Mail has the best spam
> > protection around
> > > http://mail.yahoo.com
> > >
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>
>
> SPONSORED LINKS
> 9;s disease Huntingtons disease
>
> YAHOO! GROUPS LINKS
>
>  Visit your group "huntingtonsatrisk" on the web.
>
>  To unsubscribe from this group, send an email to:
>  huntingtonsatrisk-unsubscribe@yahoogroups.com
>
>  Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
>
>

Reply | Forward | Messages in this Topic (6)
#5398 From: Scott and Alicia Slawson <theslawdawgs@...>
Date: Mon Mar 6, 2006 7:57 pm
Subject: Re: [huntington's at risk] Re: SVU 		theslawdawgs
Offline Offline
Send Email Send Email
  
Waita minute...  You're right! I think it was House
that I saw it on, not Gray's.  Gotem' mixed up.  How
typical. LOL

--- elric428 <no_reply@yahoogroups.com> wrote:

> It was also mentioned recently in a recent episode
> of "House"
>
> --- In huntingtonsatrisk@yahoogroups.com, Scott and
> Alicia Slawson
> <theslawdawgs@...> wrote:
> >
> > I didn't see it on SVU but it was mentioned on
> Gray's
> > Anatomy a couple of weeks ago too...
> >
> > --- Lauren <angeleyesforyou@...> wrote:
> >
> > > Kelly,
> > >
> > > I saw that and was amazed!! I looked at my
> husband
> > > and asked him "Did
> > > they really just mention HD?!" Glad to know I'm
> not
> > > the only one who
> > > saw it.
> > >
> > > Lauren
> > >
> > > --- In huntingtonsatrisk@yahoogroups.com, Kelly
> > > Goodwill <kelmcg@>
> > > wrote:
> > > >
> > > > I don't know if anyone would acually know this
> but
> > > in Law and
> > > > Order:SVU HD is mentioned. I thought this was
> > > awesome. I had to
> > > > acually do a double take on it. Ok, I know I
> don't
> > > post much knowing
> > > > my luck this has already been mentioned. I
> just
> > > thought it was cool.
> > > > Kelly,
> > > > "Laugh it up fuzzball"
> > > > Han Solo, Star Wars ESB.
> > > >
> > >
> > >
> > >
> > >
> > >
> > >
> >
> >
> > __________________________________________________
> > Do You Yahoo!?
> > Tired of spam?  Yahoo! Mail has the best spam
> protection around
> > http://mail.yahoo.com
> >
>
>
>
>
>
>


__________________________________________________
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Reply | Forward | Messages in this Topic (6)
#5397 From: elric428
Date: Mon Mar 6, 2006 7:49 pm
Subject: [huntington's at risk] Re: SVU 		elric428
Offline Offline
  
It was also mentioned recently in a recent episode of "House"

--- In huntingtonsatrisk@yahoogroups.com, Scott and Alicia Slawson
<theslawdawgs@...> wrote:
>
> I didn't see it on SVU but it was mentioned on Gray's
> Anatomy a couple of weeks ago too...
>
> --- Lauren <angeleyesforyou@...> wrote:
>
> > Kelly,
> >
> > I saw that and was amazed!! I looked at my husband
> > and asked him "Did
> > they really just mention HD?!" Glad to know I'm not
> > the only one who
> > saw it.
> >
> > Lauren
> >
> > --- In huntingtonsatrisk@yahoogroups.com, Kelly
> > Goodwill <kelmcg@>
> > wrote:
> > >
> > > I don't know if anyone would acually know this but
> > in Law and
> > > Order:SVU HD is mentioned. I thought this was
> > awesome. I had to
> > > acually do a double take on it. Ok, I know I don't
> > post much knowing
> > > my luck this has already been mentioned. I just
> > thought it was cool.
> > > Kelly,
> > > "Laugh it up fuzzball"
> > > Han Solo, Star Wars ESB.
> > >
> >
> >
> >
> >
> >
> >
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>

Reply | Forward | Messages in this Topic (6)
#5396 From: Scott and Alicia Slawson <theslawdawgs@...>
Date: Mon Mar 6, 2006 7:04 pm
Subject: Re: [huntington's at risk] Re: SVU 		theslawdawgs
Offline Offline
Send Email Send Email
  
I didn't see it on SVU but it was mentioned on Gray's
Anatomy a couple of weeks ago too...

--- Lauren <angeleyesforyou@...> wrote:

> Kelly,
>
> I saw that and was amazed!! I looked at my husband
> and asked him "Did
> they really just mention HD?!" Glad to know I'm not
> the only one who
> saw it.
>
> Lauren
>
> --- In huntingtonsatrisk@yahoogroups.com, Kelly
> Goodwill <kelmcg@...>
> wrote:
> >
> > I don't know if anyone would acually know this but
> in Law and
> > Order:SVU HD is mentioned. I thought this was
> awesome. I had to
> > acually do a double take on it. Ok, I know I don't
> post much knowing
> > my luck this has already been mentioned. I just
> thought it was cool.
> > Kelly,
> > "Laugh it up fuzzball"
> > Han Solo, Star Wars ESB.
> >
>
>
>
>
>
>


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

Reply | Forward | Messages in this Topic (6)
#5395 From: "Sue Adams" <angelrose@...>
Date: Mon Mar 6, 2006 1:06 pm
Subject: NEWS 		susie_que_56
Offline Offline
Send Email Send Email
 
This Group  or the people who own / moderate it does not endorse any treatment this NEWS is for information only!
 
########################################################################################
PITTSBURGH and NEW YORK, Feb. 23 /PRNewswire/ -- Cellumen, Inc. (Cellumen)
and CHDI, Inc. (CHDI), announced today collaborative research agreements to
build a Systems Cell Biology model of Huntington's Disease (HD). The cellular
model, based on Cellumen's proprietary approach to Systems Biology, will serve
as the foundation of a broadly applicable neurotoxicity profiling panel that
will be used to characterize pre-clinical candidate molecules.
    "Cellumen's approach to Systems Biology starts with the cell, the basic
unit of life, an integrated and interacting network of genes, proteins and
biochemical reactions which give rise to function," stated Kate Johnston,
Ph.D., VP of Discovery Programs at Cellumen.  "Neuro-toxicity must be
considered a Systems Biology challenge, not just the response of a few
cellular constituents.  There is great potential to create a Systems Cell
Biology profile of the cytotoxic effects of mutant Huntington expression which
will facilitate the development of new therapies for Huntington's disease".
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/02-23-2006/0004288142&EDATE=
(Copy and Paste as the = didn't work)
=====================================================
Alzheimer's Scientists Find New Tool

University of Florida scientists say they can pinpoint and identify tiny iron oxide particles associated with Alzheimer's and similar brain diseases.

They say their technique is likely to accelerate research on the cause of neurodegenerative brain diseases, and could lead to the first diagnostic procedure for Alzheimer's in patients while they are alive.

We're the first to be able to tell you both the location of the particles and what kind of particles they are, said Mark Davidson, a University of Florida materials science engineer.

Alzheimer's, Huntington's and Parkinson's diseases affect millions of Americans and cost billions of dollars annually for patient treatment and care. Alzheimer's is the most common of the three, afflicting 4.5 million Americans -- with numbers projected to grow as baby boomers age.

=========================================================
Please do not think this is a CURE, talk with your doctor about this procedure.
 
=========================================================

White Matter Degeneration In Huntington's Disease Patients Shown By Combination Of PET And MR Imaging

Main Category: Huntingtons Disease News
Article Date: 20 Feb 2006 - 8:00am (UK)

Using both brain function (PET) and anatomical structure (MR) imaging studies, Italian researchers--within the context of an Italian-British collaboration--discovered that degenerative and dysfunctional events occur in individuals many years before the onset of Huntington's disease--particularly in the brain's white matter--an area not previously considered primarily involved with the disease. In fact, the brain's white matter "progressively reduced" as individuals approached the first disease symptoms, according to a study published in February's Journal of Nuclear Medicine.
=========================================================
Straight from the heart
A WOMAN who is fighting to save her daughter's life was left speechless when a reader gave her £50 she won in a Tele competition.

Last week we revealed how Isabella Fields was planning a series of events to raise money for her daughter Julie to go to America for potentially life-saving treatment for Huntington's disease.

http://www.greenocktelegraph.co.uk/readstory.php?id=6936
I have no idea what life saving potential in America she was refering to. Maybe the next article which was an abstract.)
========================================================

Brain cell transplant slows advance of fatal disease

By Jeremy Laurance, Health Editor

Published: 27 February 2006

A controversial operation involving the transplant of foetal brain cells into sufferers from a devastating brain disease has slowed the patients' decline.

Three patients who had holes drilled in their skulls and millions of cells extracted from aborted foetuses inserted into their brains were still benefiting from the treatment six years later, a study has shown.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~More on this Topic ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tissue Grafts Slow Progression of Huntington's Disease
By Neil Osterweil, Senior Associate Editor, MedPage Today
Reviewed by Robert Jasmer, MD; Assistant Professor of Medicine, University of California, San Francisco
February 27, 2006
MedPage Today Action Points

  • Let interested patients know that this highly experimental study indicates that neural tissue grafts from electively aborted fetuses can slow but not stop the progression of Huntington's disease.

Review
PARIS, Feb. 27 - Fetal neural tissue grafts can buy at least some Huntington's disease patients a few years of improvement, followed by more years of stable disease, before progressive loss of motor function, reported researchers here.

In 2000, Anne-Catherine Bachoud-Lévi, M.D., and colleagues of the French national institute of health and medicine reported in The Lancet that three of five patients with Huntington's disease who previously received intracerebral fetal neural grafts had improvements in both motor and cognitive function at two years.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Stem Cell Therapy Helps Huntington's

Researchers Say Stem Cell Transplant May Offer Several Years of Improvement
By Jennifer Warner
WebMD Medical News 		Reviewed By Louise Chang, MD
on Monday, February 27, 2006

Feb. 27, 2006 - Stem cell transplants may provide benefits in treating Huntington's disease, according to a new study.

Researchers found the benefits of experimental stem cell therapy in reducing symptoms -- such as muscle stiffness and memory loss -- peaked after two years and then faded four to six years after the procedure in people with Huntington's disease.

While not a cure for the rare and difficult-to-treat condition, the study suggests that transplanting healthy stem cells to replace those brain cells damaged by Huntington's disease may offer patients long-term improvements and stability. The progressive neurological disorder causes rapid, jerky movements, loss of memory, and behavior problems.

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

Study implicates potassium channel mutations in neurodegeneration and mental retardation

For the first time, researchers have linked mutations in a gene that regulates how potassium enters cells to a neurodegenerative disease and to another disorder that causes mental retardation and coordination problems. The findings may lead to new ways of treating a broad range of disorders, including Alzheimer's and Parkinson's diseases. The study was funded in part by the National Institutes of Health's National Institute of Neurological Disorders and Stroke (NINDS).

"This type of gene has never before been linked to nerve cell death," says Stefan Pulst, M.D., of Cedars-Sinai Medical Center at the University of California, Los Angeles, who led the new study. The report will appear in the February 26, 2006, advance online publication of Nature Genetics.*

http://www.eurekalert.org/pub_releases/2006-02/nion-sip022206.php

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

'Potent medicine' effective in reducing chorea

Tetrabenazine better tolerated than expected among patients with Huntington's disease, U.S. study finds

By Nancy Deutsch

CHICAGO | Tetrabenazine effectively reduces the involuntary movement of patients with Huntington's disease by close to 25%, a new study suggests.

Tetrabenazine has been available in Canada under the trade name Nitoman since 2004, but is not approved for use in the U.S.

Tetrabenazine caused five serious side-effects among four of 54 patients who received it, according to the study appearing in Neurology.

"It's a pretty potent medicine," said Dr. Kathleen Shannon, a neurologist at Rush University Medical Centre who led the study. "I actually thought it was going to be harder for patients to tolerate the medicine."

This surprised her more than the effects of the medicine, which were somewhat expected, she said.

The more common side-effects included sleepiness, restlessness, slow movement and depression.

http://www.medicalpost.com/mpcontent/article.jsp?content=20060227_201656_1964

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

Autophagy-mediated clearance of huntingtin aggregates triggered by the insulin-signaling pathway

Ai Yamamoto, M. Laura Cremona, and James E. Rothman

The Judith P. Sulzberger Columbia Genome Center, Department of Physiology and Cellular Biophysics, Columbia University, New York, NY 10032

Correspondence to James E. Rothman: jr2269@...

Conditional mouse models of polyglutamine diseases, such as Huntington's disease (HD), have revealed that cells can clear accumulated pathogenic proteins if the continuous production of the mutant transgene is halted. Invariably, the clearance of the protein leads to regression of the disease symptoms in mice. In light of these findings, it is critical to determine the pathway responsible for alleviating this protein accumulation to define targets to fight these diseases. In a functional genetic screen of HD, we found that activation of insulin receptor substrate-2, which mediates the signaling cascades of insulin and insulin-like growth factor 1, leads to a macroautophagy-mediated clearance of the accumulated proteins. The macroautophagy is triggered despite activation of Akt, mammalian target of rapamycin (mTOR), and S6 kinase, but still requires proteins previously implicated in macroautophagy, such as Beclin1 and hVps34. These findings indicate that the accumulation of mutant protein can lead to mTOR-independent macroautophagy and that lysosome-mediated degradation of accumulated protein differs from degradation under conditions of starvation.

http://www.jcb.org/cgi/content/abstract/172/5/719

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

Medivation Receives FDA Comments on Huntington's Disease IND

SAN FRANCISCO--(BUSINESS WIRE)--March 1, 2006--Medivation, Inc. (OTCBB:MDVN) today announced that late yesterday it received telephonic comments from the FDA regarding the Company's investigational new drug application (IND) filed on January 31, 2006 to begin human clinical development of Dimebon for Huntington's disease. In the call, the FDA stated Medivation would be required to conduct additional toxicology studies prior to receiving approval to start its proposed human clinical trial. The FDA also informed Medivation that it would be sending a written comment letter shortly.

David Hung, M.D., President and Chief Executive Officer of Medivation, stated: "We have not yet received the FDA's comment letter or had the opportunity to discuss our IND with the FDA staff. Once we receive the letter and have the opportunity to consult with the FDA staff, we will formulate a plan in consultation with the staff. Based on the information we have from FDA thus far, we believe we can complete the requested studies in a few months. Obviously our Huntington's disease program will be delayed somewhat and, if resource reallocation is required, our prostate cancer program may also be delayed. We remain on track for the previously disclosed milestones for our lead clinical program in Alzheimer's disease."

http://home.businesswire.com/portal/site/google/index.jsp?ndmViewId=news_view&newsId=20060301005695&newsLang=en

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

 
Susie
 
 

Reply | Forward | Messages in this Topic (4)
#5394 From: "Sue Adams" <angelrose@...>
Date: Mon Mar 6, 2006 11:43 am
Subject: New Memberships 		susie_que_56
Offline Offline
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newbystac and mattsnider2000
 
Welcome to At Risk, here we do our best at helping each other through difficult, happy, wondering and normal times. Actually we are all just one big family who understands HD without explanations of the disease. The goal here is to keep what sanity one has left in order to make it through life, to look at bad times and find a good memory in it, to laugh in the face of sadness, and find a place where you can get support. When I first moderated this group my goal was to help at least one person, I am satisfied that goal was met, but now my drive is to keep information out there to make it easy to read and try to understand HD if that is possible. I believe through the LINKS I have enough bookmarks to start off any one on their trip to  better learning and understanding HD.
 
I am late getting things around because I have went back to school with the hopes of getting the education to back up my experiences I have been trough. I usually attack things backwards! LOL I was a caregiver to my late husband, Frank who had HD, my Grandmother who has since passed on and now I care for my youngest son Scott who had ADHD combine type, Oppositional Defiant Disorder (ODD) and Bipolar. I also check on my parents quite often, so you can see life is not slow here for me. Just bear with me and as I try to get the news updates posted to the group.
 
Never feel a topic has been discussed completely or that you question is silly or stupid, every question, concern, and situation is important to you we will discuss it. No matter how many times it might of been hashed out before. You are here to receive support and we all do our best at providing that. We all draw from our experience through HD as there are no professionals on this group. If you get a post or email that disturbs you, stop and thing before going off the deep end. Talk to others to get a feel of what might be better for you. Please know that every post in here, it is up to you to gain and use the information wisely. Not everyone situation is the same or is all information set in stone.  Good luck in your quest through this disease.
 
Susie
 

Reply | Forward | Messages in this Topic (1)
#5393 From: "Lauren" <angeleyesforyou@...>
Date: Mon Mar 6, 2006 1:45 am
Subject: Re: SVU 		yourbabydoll...
Offline Offline
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Kelly,

I saw that and was amazed!! I looked at my husband and asked him "Did
they really just mention HD?!" Glad to know I'm not the only one who
saw it.

Lauren

--- In huntingtonsatrisk@yahoogroups.com, Kelly Goodwill <kelmcg@...>
wrote:
>
> I don't know if anyone would acually know this but in Law and
> Order:SVU HD is mentioned. I thought this was awesome. I had to
> acually do a double take on it. Ok, I know I don't post much knowing
> my luck this has already been mentioned. I just thought it was cool.
> Kelly,
> "Laugh it up fuzzball"
> Han Solo, Star Wars ESB.
>

Reply | Forward | Messages in this Topic (6)
#5392 From: Kelly Goodwill <kelmcg@...>
Date: Mon Mar 6, 2006 1:16 am
Subject: SVU 		stekgrl
Offline Offline
Send Email Send Email
  
I don't know if anyone would acually know this but in Law and
Order:SVU HD is mentioned. I thought this was awesome. I had to
acually do a double take on it. Ok, I know I don't post much knowing
my luck this has already been mentioned. I just thought it was cool.
Kelly,
"Laugh it up fuzzball"
Han Solo, Star Wars ESB.

Reply | Forward | Messages in this Topic (6)
#5391 From: elric428
Date: Mon Mar 6, 2006 1:07 am
Subject: Re: Special Video 		elric428
Offline Offline
  
--- In huntingtonsatrisk@yahoogroups.com, "Sue Adams"
<angelrose@...> wrote:
>
> Please take the time to view this video of residents at Leisure
Chateau Nursing Home who have Huntington's Disease. A teacher and
his students compiled this as a school project  Gary Spinner and I
believe it is worth watching and sharing with everyone. I will place
the link in our links so that it is easily found for viewing.
Huntington's Disease Helping Hands Video  is the title and is not in
any folders, it is on the front page for easy finding.
>
>  It is in this email as an attachment and I know Yahoo looks down
on attachments, so go the LINKS in this group to click on a workable
link.
>
> Gary Spinner (elric428 [yahoo id]) is who told me about this video
as his late wife Rhoda was at this facility. Gary has gotten
permission to place this on the net from Leisure Chateau Nursing
Home. Please let us know what you thought of it.
>
> If you have dial up it takes forever to download, but please be
patient as it is worth the wait or I felt it was.
>
> Susie
>
Here is the actual link for the video for those who want it...

http://media.putfile.com/Huntingtons-Disease-Helping-Hands

Reply | Forward | Messages in this Topic (2)
#5390 From: "Sue Adams" <angelrose@...>
Date: Sun Mar 5, 2006 8:02 pm
Subject: Special Video 		susie_que_56
Offline Offline
Send Email Send Email
 
Please take the time to view this video of residents at Leisure Chateau Nursing Home who have Huntington's Disease. A teacher and his students compiled this as a school project  Gary Spinner and I believe it is worth watching and sharing with everyone. I will place the link in our links so that it is easily found for viewing. Huntington's Disease Helping Hands Video  is the title and is not in any folders, it is on the front page for easy finding. 

 It is in this email as an attachment and I know Yahoo looks down on attachments, so go the LINKS in this group to click on a workable link.
 
Gary Spinner (elric428 [yahoo id]) is who told me about this video as his late wife Rhoda was at this facility. Gary has gotten permission to place this on the net from Leisure Chateau Nursing Home. Please let us know what you thought of it.
 
If you have dial up it takes forever to download, but please be patient as it is worth the wait or I felt it was.
 
Susie
 
 

Reply | Forward | Messages in this Topic (2)
#5389 From: "sukipea" <sukipea@...>
Date: Fri Mar 3, 2006 9:26 am
Subject: Re: [huntington's at risk] My dad, an update... 		sukipea
Offline Offline
Send Email Send Email
  
Thank you, Susie. And thank you for this site! It's great to
actually have somewhere to talk, get things off my chest, vent,
share and get advice at last! Bless you all.

Tasha

--- In huntingtonsatrisk@yahoogroups.com, "Sue Adams"
<angelrose@...> wrote:
>
> Tasha, I am glad to hear it has worked so far, what a relief and a
blessing
> for now. One step at a time is all any of us can do.
>
> Susie
>
> ----- Original Message -----
> From: "sukipea" <sukipea@...>
> To: <huntingtonsatrisk@yahoogroups.com>
> Sent: Thursday, March 02, 2006 6:25 AM
> Subject: Re: [huntington's at risk] My dad, an update...
>
>
> > Hey again. I wrote and sent my letter, which my dad recieved
> > yesterday. He has just been to visit me. Maybe it's denial, but
he
> > assured me that if he thinks he ever has symptoms (maybe he
doesn't
> > notice?!) he'll go straight to the doctor. I told him there's
> > treatments now, and he doesn't ever need to suffer like his
mother
> > did. I tried not to push the issue too much, as it's easier to
keep
> > an eye on a friend, than an enemy! He still maintains he was too
> > unwell to have me round at the beginning of the week, and has
> > promised to clean up and acknowledges that the house is a mess.
He
> > even told me his plan and how he intends to start and where. At
> > least this is possitive and we have at least touched on the
subject
> > now, instead of never mentioning the great taboo. I told him I'll
> > visit next Friday after work and see how he's getting on. I also
> > told him that if he does nothing then I have no choice but to
think
> > he's not well. I guess I think that if he can show me that he can
> > cope and manage things acceptably for the time being, then I can
> > keep a closer eye on him and maybe we can eventually discuss this
> > more openly and he'll be less of a worry. The good thing is that
he
> > didn't "blow up" at me, and he says he'll do something about it
all.
> > It's a start, I need to give him the benefit of the doubt. After
> > all, I can't force him to go to the doctors all the while he is
able
> > to function on his own. So, hopefully he won't let me down, and
I'll
> > be happier to let him deal with things in his own time if he at
> > least seems to cope with his domestic life better. Here's hoping.
>

Reply | Forward | Messages in this Topic (4)
#5388 From: "Jean E. Miller" <jemiller@...>
Date: Thu Mar 2, 2006 11:48 pm
Subject: Medivation Receives FDA Comments on Huntington's Disease IND - Dimebon 		hdcureit
Offline Offline
Send Email Send Email
 
Medivation also expects to initiate a US phase I/II study of Dimebon in Huntington's disease patients in Q2 2006.

 
March 01, 2006 11:14 AM US Eastern Timezone
Medivation Receives FDA Comments on Huntington's Disease IND
SAN FRANCISCO--(BUSINESS WIRE)--March 1, 2006--Medivation, Inc. (OTCBB:MDVN) today announced that late yesterday it received telephonic comments from the FDA regarding the Company's investigational new drug application (IND) filed on January 31, 2006 to begin human clinical development of Dimebon for Huntington's disease. In the call, the FDA stated Medivation would be required to conduct additional toxicology studies prior to receiving approval to start its proposed human clinical trial. The FDA also informed Medivation that it would be sending a written comment letter shortly.

David Hung, M.D., President and Chief Executive Officer of Medivation, stated: "We have not yet received the FDA's comment letter or had the opportunity to discuss our IND with the FDA staff. Once we receive the letter and have the opportunity to consult with the FDA staff, we will formulate a plan in consultation with the staff. Based on the information we have from FDA thus far, we believe we can complete the requested studies in a few months. Obviously our Huntington's disease program will be delayed somewhat and, if resource reallocation is required, our prostate cancer program may also be delayed. We remain on track for the previously disclosed milestones for our lead clinical program in Alzheimer's disease."

About Medivation

Medivation, Inc. acquires promising pharmaceutical and medical device technologies in the late preclinical development phase, develops those technologies quickly and cost-effectively through human first proof-of-efficacy studies (generally the end of Phase 2 clinical trials), and seeks to sell or partner successful programs with larger pharmaceutical, biotechnology and medical device companies for late-stage clinical studies and commercialization. The Company intends to build and maintain a portfolio of 4 to 6 development programs at all times, targeting technologies with the potential to generate returns on investment of at least 6 fold within 3 years.

Medivation's current portfolio consists of small molecule drugs in development to treat 3 large, unmet medical needs -- Alzheimer's disease, Huntington's disease and hormone-refractory prostate cancer, the last two of which are likely Orphan Drug indications. Dimebon(TM), with a 20-year record of human use and demonstrated efficacy in animal studies of both Alzheimer's disease (AD) and Huntington's disease (HD) and in a pilot clinical study of AD, is in a randomized, double-blind, placebo-controlled Phase 2 study in AD patients in Russia, the results of which are expected to be available in Q3 2006. Medivation also expects to initiate a U.S. Phase 1-2 study of Dimebon in HD patients. The MDVN 300 series compounds are in development for the treatment of hormone-refractory prostate cancer. Further information about Medivation can be found on its website (www.medivation.com).

Safe Harbor Statement

This press release contains forward-looking statements, including statements regarding the anticipated timing of regulatory and clinical milestones on the Company's Dimebon Alzheimer's disease and Huntington's disease programs, and the Company's MDVN300 family of small molecules for the treatment of hormone-refractory prostate cancer, which are made pursuant to the safe harbor provisions of the Private Securities Litigation Reform Act of 1995. Forward-looking statements involve risks and uncertainties that could cause actual results to differ significantly from those projected. You are cautioned not to place undue reliance on the forward-looking statements, which speak only as of the date of this release. Our filings with the Securities and Exchange Commission, including our Annual Report on Form 10-KSB for the year ended December 31, 2004 and our Quarterly Reports on Form 10-QSB for the quarters ended March 31, 2005, June 30, 2005, and September 30, 2005 include more information about factors that could affect our financial and operating results.

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

Company:  Medivation
Ticker Symbol & Exchange: MDVN.OB  (OTC bulletin board)
Investor Relations Contact: Pat Machado, 415.543.3470
Web: www.medivation.com
Date of Presentation: March 1, 2006

Medivation, Inc. seeks to acquire, develop and sell or partner biomedical technologies in the early-development stage of the research
and development process - the stage beginning with the identification of a specific biomedical product candidate with a demonstrated
scientific rationale for further development, and ending upon the completion of Phase II clinical trials designed to provide evidence of
potential safety and efficacy in patients.

Medivation currently is developing Dimebon(TM) for Alzheimer's disease (AD) and Huntington's disease (HD). Dimebon is a small molecule that has a 20-year record of human use, has demonstrated improvement in cognition/memory in a pilot AD clinical trial, and has demonstrated preclinical evidence ofefficacy in animal models of both AD and HD.

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

2001 study/PDF on Alzheimer's http://neurochem.ipac.ac.ru/articles/Lerm-Redkozub-Art.pdf


Reply | Forward | Messages in this Topic (1)
#5387 From: "Sue Adams" <angelrose@...>
Date: Thu Mar 2, 2006 10:05 pm
Subject: Re: [huntington's at risk] My dad, an update... 		susie_que_56
Offline Offline
Send Email Send Email
  
Tasha, I am glad to hear it has worked so far, what a relief and a blessing
for now. One step at a time is all any of us can do.

Susie

----- Original Message -----
From: "sukipea" <sukipea@...>
To: <huntingtonsatrisk@yahoogroups.com>
Sent: Thursday, March 02, 2006 6:25 AM
Subject: Re: [huntington's at risk] My dad, an update...


> Hey again. I wrote and sent my letter, which my dad recieved
> yesterday. He has just been to visit me. Maybe it's denial, but he
> assured me that if he thinks he ever has symptoms (maybe he doesn't
> notice?!) he'll go straight to the doctor. I told him there's
> treatments now, and he doesn't ever need to suffer like his mother
> did. I tried not to push the issue too much, as it's easier to keep
> an eye on a friend, than an enemy! He still maintains he was too
> unwell to have me round at the beginning of the week, and has
> promised to clean up and acknowledges that the house is a mess. He
> even told me his plan and how he intends to start and where. At
> least this is possitive and we have at least touched on the subject
> now, instead of never mentioning the great taboo. I told him I'll
> visit next Friday after work and see how he's getting on. I also
> told him that if he does nothing then I have no choice but to think
> he's not well. I guess I think that if he can show me that he can
> cope and manage things acceptably for the time being, then I can
> keep a closer eye on him and maybe we can eventually discuss this
> more openly and he'll be less of a worry. The good thing is that he
> didn't "blow up" at me, and he says he'll do something about it all.
> It's a start, I need to give him the benefit of the doubt. After
> all, I can't force him to go to the doctors all the while he is able
> to function on his own. So, hopefully he won't let me down, and I'll
> be happier to let him deal with things in his own time if he at
> least seems to cope with his domestic life better. Here's hoping.

Reply | Forward | Messages in this Topic (4)
#5386 From: "sukipea" <sukipea@...>
Date: Thu Mar 2, 2006 12:25 pm
Subject: Re: [huntington's at risk] My dad, an update... 		sukipea
Offline Offline
Send Email Send Email
  
Hey again. I wrote and sent my letter, which my dad recieved
yesterday. He has just been to visit me. Maybe it's denial, but he
assured me that if he thinks he ever has symptoms (maybe he doesn't
notice?!) he'll go straight to the doctor. I told him there's
treatments now, and he doesn't ever need to suffer like his mother
did. I tried not to push the issue too much, as it's easier to keep
an eye on a friend, than an enemy! He still maintains he was too
unwell to have me round at the beginning of the week, and has
promised to clean up and acknowledges that the house is a mess. He
even told me his plan and how he intends to start and where. At
least this is possitive and we have at least touched on the subject
now, instead of never mentioning the great taboo. I told him I'll
visit next Friday after work and see how he's getting on. I also
told him that if he does nothing then I have no choice but to think
he's not well. I guess I think that if he can show me that he can
cope and manage things acceptably for the time being, then I can
keep a closer eye on him and maybe we can eventually discuss this
more openly and he'll be less of a worry. The good thing is that he
didn't "blow up" at me, and he says he'll do something about it all.
It's a start, I need to give him the benefit of the doubt. After
all, I can't force him to go to the doctors all the while he is able
to function on his own. So, hopefully he won't let me down, and I'll
be happier to let him deal with things in his own time if he at
least seems to cope with his domestic life better. Here's hoping.

Tasha

--- In huntingtonsatrisk@yahoogroups.com, "Sue Adams"
<angelrose@...> wrote:
>
> Hi Tasha I have read this post a few times and every time I do a
flag goes
> up. This flag says Dad might understand  he has HD, but if he
stays in
> denial no one else will see or feel what he does. This way reality
is how
> ever he sees it. I am sure he is ashamed in his own way that you
have to
> come clean up his house, I am betting he doesn't see it as dirty.
They
> process information totally different than we do. They see things
we will
> never see or hear, at least it was that way when Frank (my late
husband) was
> alive.
>
> This will be a touchy thing to bring Dad into this world -if you
can.
> Writing him a letter might work, but it might make his mood swings
worse
> too. It is really hard to say what will work with someone with HD
diag or
> not as what works one day won't tomorrow, or next week, or next
year. Sit
> down make a list of what you would like to help Dad out with, then
put it in
> a priority order, then go from there. You can play the denial game
with him
> if you want, that isn't easy believe you and me!
>
> You can show up Monday morning, knock on his door or walk in how
ever you do
> it, state you are here to help him by organizing his house, now
mind you
> once it is done, it will go back to  the way it was, it is how he
is, he
> cannot help it. Make no mention about HD and symptoms unless he
brings it
> up. But beware the moods will shift while cleaning too.
>
> This will be a very touchy thing to have to handle, but it can be
done. It
> will have to be you I am betting that will have to bring up the
symptoms and
> going to the dr.  Take things in small steps and know that there
is some way
> around him to get done what needs to be done. Then there is the
flip side
> that he stands firm and will allow no help.
>
> If I can be of any help Tasha please email me at angelrose@...
> place HD in the subject line and I will do what I can.
>
>
> Susie
>
>
> ----- Original Message -----
> From: "sukipea" <sukipea@...>
> To: <huntingtonsatrisk@yahoogroups.com>
> Sent: Friday, February 24, 2006 11:49 AM
> Subject: [huntington's at risk] My dad, an update...
>
>
> > Thanks again for accepting me into this HD affected family, it is
> > nice to be able to vent a bit to a wider audience at last! This
is
> > what this message is, a bit of a rant really. I went to my
fathers
> > house a couple of weeks ago and arranged with him to come and
help
> > him clean up and spend some time working on this together. I was
> > supposed to be going on this Monday coming.
> >
> > I haven't yet mentioned his symptoms or HD at all. However, he's
> > called my house today and told my partner that he's got a cold
and
> > that I can't come. I'm so frustrated. On one hand I want to call
him
> > up and scream at him that he's selfish and worrying me silly, but
> > I'm totally aware of why he's behaving this way so I can't do
this.
> > I've taken a week off work to sort this out and it's upsetting
for
> > my partner who had my dad shouting down the phone at him and
ended
> > up hanging up. He now feels terrible too. I don't blame him at
all,
> > I've seen this disease first hand with my nan, he hasn't and is
> > dealing with it first time around and I feel blessed to have
such a
> > man beside me. Yet we both know we have to stay strong and placid
> > now.
> >
> > I never got around to sending the letter before, I thought I'd
sort
> > out his home first. Now this option (or plan of attack!) has been
> > taken away from me, I'm back to square one and I have to send a
> > letter. One day, the whole thing is going to have to blow up, so
> > maybe that one day is now. I feel he needs to know how this is
> > affecting me and my partner, and we need to deal with the
tantrums
> > and stress to come so things can improve. I'm re-writing my
letter
> > tomorrow, after I have calmed down, and I intend to focus on any
> > positives that this may bring. Any advice is greatly
appreciated, as
> > I'm feeling pretty isolated dealing with this. I know he needs
to be
> > diagnosed, but I can't figure out how to get him to the doctor.
> > Thank you for reading.
> >
> > Tasha
> >
> >
> >
> >
> >
> >
> >
> > Yahoo! Groups Links
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > --
> > No virus found in this incoming message.
> > Checked by AVG Free Edition.
> > Version: 7.1.375 / Virus Database: 267.15.11/264 - Release Date:
2/17/2006
> >
> >
>

Reply | Forward | Messages in this Topic (4)
#5385 From: "Sue Adams" <angelrose@...>
Date: Thu Mar 2, 2006 2:57 am
Subject: Re: [huntington's at risk] chat 		susie_que_56
Offline Offline
Send Email Send Email
  
I was there early and stayed an hour, two was there but not talking, they
left later on by boot or how ever, I had to run an errand I forgot about and
left at 7:30. Thanks for showing up and sticking around a while

Susie


----- Original Message -----
From: "Kelly Goodwill" <kelmcg@...>
To: <huntingtonsatrisk@yahoogroups.com>
Sent: Wednesday, March 01, 2006 8:35 PM
Subject: [huntington's at risk] chat


> Is anyone going to be in the chat room. I am in there at least for a
> little while.
>
> "I can't keep track of her when she not incoporeally possesing a
> spaceship, don't look at me...."
>
> Simon, Objects in Space, Firefly
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>
> --
> No virus found in this incoming message.
> Checked by AVG Free Edition.
> Version: 7.0.375 / Virus Database: 268.1.1/271 - Release Date: 2/28/2006
>
>

Reply | Forward | Messages in this Topic (1)
#5384 From: Kelly Goodwill <kelmcg@...>
Date: Thu Mar 2, 2006 2:35 am
Subject: chat 		stekgrl
Offline Offline
Send Email Send Email
  
Is anyone going to be in the chat room. I am in there at least for a
little while.

"I can't keep track of her when she not incoporeally possesing a
spaceship, don't look at me...."

Simon, Objects in Space, Firefly

Reply | Forward | Messages in this Topic (7)
#5383 From: "Jean E. Miller" <jemiller@...>
Date: Thu Mar 2, 2006 1:16 am
Subject: Arizona HD and JHD Retreat - June 2-4, 2006 		hdcureit
Offline Offline
Send Email Send Email
 
I mean to send this out the other day. I also put the below into the attached. My relatives are still visiting, and too many other things going on and apologize, because I haven't read any messages.  I wish I could go but with the convention the next week, and so many JHD sessions planned for the national conventions, I'll have to miss the Arizona one!
 
You'll have to call Phil for the registration form itself.  Phil asked the notice be put on the HDL and HDAC, I haven't checked to see if it may be there.
Love
Jean
 

7th Annual HDSA Arizona Affiliate HD & JHD Family Retreat
June 2-4, 2006 - Prescott, Arizona

WHEN: The Retreat starts at noon on Friday June 2nd and ends at about 2:00 pm on Sunday June 4th.

WHERE: Beautiful Chapel Rock Conference Center in Prescott, Arizona. Maps will be mailed to everyone before the retreat.

WHY: To have fun and make new friends while learning how to cope positively with HD in a beautiful, cool, green mountain setting!REGISTRATION: A $20 Registration Fee is required for each person attending the retreat. Please enclose your Registration Fee(s) with your completed Registration Form(s).

RETREAT COSTS: For the person with HD and 1 primary caregiver the registration fee is $20 each thanks to the generosity of a loving couple in our Arizona Affiliate. This fee is limited to 90 individuals total on a first come first serve basis.

Other retreat participants, friends, and additional family member(s) will pay the regular Retreat fee of $100 per person. This includes 2 nights and
3 days lodging and 7 delicious meals and all program handouts and arts & crafts supplies (quite a bargain)!

Additional financial gifts to support the retreat are also welcomed.

ACCOMMODATIONS: Accommodations are beautiful private rooms and some are handicap accessible if needed. If you or your loved one is in a wheelchair please let me know. The meeting and sleeping rooms are non-smoking. Attire is casual; however, bring a jacket as it usually gets chilly in the morning and evening.

Everyone will pick up their room assignment and activity schedule at the Registration table when you arrive.

Space is limited so don't hesitate.

Checks should be made out to: HDSA AZ Affiliate. All registration forms and checks should be mailed immediately to:

HDSA Arizona Affiliate
P.O. Box 7666
Phoenix, AZ 85011RETREAT SPEAKERS:

  • Dr. Jane Paulsen, HD Author, Researcher
  • Doctors from the Mayo Clinic in Scottsdale
  • Doctors from Barrow Neurological Institute in Phoenix
  • Doctors from the University of California at San Diego HD Clinical Research Center in San Diego
  • Professors from the University of Arizona will report on world's first Hearing/ Comprehension Study findings
  • Phil Hardt will report on his advocacy trip to Columbia, South America, to help those with HD.

ACTIVITIES: Arts & Crafts, Name Tags, Relaxing, Singing, Playing Games, Physical Therapy, Massages, Manicures, Pedicures & Hair Styling, Educational Speakers, Pinecone Ceremony

TRANSPORTATION: For person’s with HD transportation is available for those who cannot drive, on a first come first serve basis. Transportation is limited to those in the greater Tucson and Phoenix metropolitan areas.

OTHER:

  • A certified nurse will be available in case any emergencies arise.
  • Animals are NOT allowed.

CONTACT:Phil Hardt

1-602-309-3118 or

Email: phardt1@...

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