Search  | Login | Register
Friday, November 21, 2008

To post a message in our discussion forum, you must register with this website. To register, please create a username and password.  If you have already registered, please login.

Please note, your real name will not be shown to other users in this forum.  Other users will only see your "username" that you create.

 

REACH OUT.  JOIN A SUPPORT GROUP .  HELP YOURSELF AND SOMEONE ELSE.

In a support group or with a counslor, people will not judge you or try to tell you what to do. They are there to listen and share feelings and experiences in a confidential setting.

You can click on "SUPPORT" on this site's home page to find a support group near you.  You may also contact the NE Center of Excellence to meet with the social worker for counseling If you do not live in New England go to the national HDSA website www.hdsa.org  to find the closest support group or Center of Excellence near you.   You DO NOT have to go this road alone. Support is all around you. 

     
  Community Discussions  At Risk  Someone please ...
 Someone please respond!
 
annmarieoco
7 posts
Joined
8/1/2006

Someone please respond!
Posted: 01 Aug 06 12:20 PM

Hello-- I just found out my mother has HD.  I am 23 years old and at first I was ok.  Then, lately I have been putting myself "under the microscope".  I began noticing things that I have never noticed proir to finding out about my mom.  I have been twitching bad for the last couple of weeks.  I don't know if it is stress or HD.  I know stress can cause a lot of these symptoms and I am VERY stressed out.  I also feel shaky and weak at times and this is really all that I can think about.  Does anyone know if someone can start showing signs this early?  Or, does anyone experience any of this?  Thank you....

charlie
3 posts
Joined
1/25/2006

Re: Someone please respond!
Posted: 20 Aug 06 6:42 AM

People can show signs of HD as early as childhood ("early-onset HD").   There is a bit of a "bell-curve" in the onset age of HD.  I am no expert but from what I remember the peak was somewhere in the 40-50 year old area.  Early onset (childhood) being on the left of the bell curve and very rare...and late onset (70's, 80's) being on the right of the bell curve and not quite as rare as early-onset.  So you're 23, that would be on the rare side...I mean it's possible of course, but given the timing of just finding out about your mom, this could be psychosomatic.  Finding out about about a parent having HD is traumatic (whether you know it or not, whether it has hit you yet or not).

How was your mom diagnosed?  Was it part of a "program" where they offer her and your family support after the diagnosis?  I know this is available in many states...an HD program that has "family support" as part of the follow-up for diagnosis.  If this is the case, you could find benefit in leveraging the help that is offered there.

Otherwise, a neurologist would likely be able to tell you whether you are experiencing HD symptoms or not.  They has specific tests that would validate what you are experiencing as either HD related or not.

Charlie

welsh girl
4 posts
Joined
10/7/2006

Re: Someone please respond!
Posted: 07 Oct 06 2:58 PM
hiya i also recently found out that my mum has HD,i was 15 when i found out,and i wasnt sure what to think at first, my brother has been tested and it was negative, at the moment im thinking of getting tested when im 18,how do you feel about getting tested, if ur on msn my address is passmore43@hotmail.com
annmarieoco
7 posts
Joined
8/1/2006

Re: Someone please respond!
Posted: 07 Oct 06 3:48 PM
Hello - I am happy that you have responded on-line today. My advice to you-- which is only advice-- is that you need to think about this very CLEARLY. Clearly-- meaning that you are emotionally ready for this. It would help for you to go and see a counselor (doesnt have to be an HD counselor) to talk about it-- it helps! But, I would tell you that you are young and you have your whole life ahead of you. You should try to live each day to the fullest and dont let this disease take over your life. And, if you find that after you have spoken w/ someone (a counselor) for a little while, and you still fill like getting the test is a good idea-- do it. But, I would definetly suggest waiting it out because you are young and your future is bright. How old was your mother when she was first diagnosed? That could help to know to. Please respond and let me know and I could give you more advice further. Thanks again for your response. Feel free to e-mail whenever you need to! annmarie_oco@yahoo.com Annmarie
welsh girl
4 posts
Joined
10/7/2006

Re: Someone please respond!
Posted: 07 Oct 06 4:04 PM
yeah thank you its definately something im not going to rush into, i mean i know im only 16, my mum was roughly 41 when she first found out that was about 4 years ago now, when did you first find about your mum?
welsh girl
4 posts
Joined
10/7/2006

Re: Someone please respond!
Posted: 07 Oct 06 4:05 PM
do you have msn?
  Community Discussions  At Risk  Someone please ...
©2005 HDSA - Website Credits