Why You Might Consider
An On-Line Support Group
From first learning about Huntington's Disease in your family, and
through the course of living with the disease day-to-day, most of us find that friends, co-workers, and even some family members
aren't willing to discuss your life with HD in any great detail.
Whether you are At-Risk, are HD positive, are a caregiver for a person
with HD, or a caring friend, there are times you need support for your questions, concerns and even a little
humor.
The first place to go to is your local HDSA Chapter or Support
Group [check out State By State HD Support Info. However, most of these only
meet once a month or less. When you need support daily, or at 3AM in the morning, more then likely someone will be on
the On-Line Support group for you on! There is always someone with a little more experience in living
with HD who can offer you advice, guidance or just a shoulder to lean on when there isn't one close by.
If there currently isn't a support group in your area, you might want to consider starting one yourself! Here's
an 8 page article in Word 97 that will give you some excellent ideas on how to start a group: How To Start Your Own HD Support Group
On-Line Groups - A word of caution:
Although some professionals monitor these groups, the members
typically are not. Most are family members, many with years of HD experience. Information provided to you on medications or
treatments options for Huntington's Disease should be discussed with your personal physician.
If you are concerned with privacy issues, it is recommended
you sign on to one of these (free) lists with a code name. Temporary email addresses can be obtained from places like www.yahoo.comor www.hotmail.com for this purpose.
That being said.....I hope you'll consider joining one of these
groups!I could have never made it through my years of caring
for my daughter, Kelly, without the support given to me on Hunt-Dis.
Some Symbols You Might See On Line:
<BG> Big grin
<G> Grin
BIL
Brother-in-law
BTY By the way
FAQ Frequently Asked Questions
FIL
Father-in-law
FOTCL Falling Off The Chair Laughing
FWIW For What It's Worth
FYA
For Your Amusement
FYI For Your Information
HD Huntington's
Disease
IMHO In My Humble Opinion
IMNSHO In My Not So Humble Opinion
IMO
In My Opinion
KISS Keep It Simple Stupid
LOL Laughing
Out Loud
MIL Mother-in-law
OTF On the Floor (short for
ROTFL)
OTOH On the Other Hand
pHD or Phd Person with Huntington's Disease
ROTFL
Rolling on the Floor Laughing
ROTFLMAO Rolling on the floor laughing my a** off
SIL
Sister-in-law
TIA Thanks in Advance
TNX Thanks
Click Any Group For Instructions
These groups require you join before you're allowed to post or read
messages. This is to protect your identity. Communication is by email which you can either receive as
individual messages are sent, or choice the option for digest or no-mail once you join.
2006 Icor site. Click on: Join
or leave the list (or change settings), make changes and hit save changes. This is an inter-active email group for discussing all aspects of life
as it is affected by HD with one or more family members. Discussions of any topic directly related to how
HD has, is or will be affecting your life are welcomed. All family members are invited to join including spouses, parents,
and children of a Huntington's individual as well as any person afflicted with or at risk for HD. |
Yahoo On-Line Groups:
If you're not a current member of Yahoo you will be asked to sign on first before you can access the messages.
The NYA is a dynamic group of
young people, ages 9 through 29, living with HD. Find out how you
can join the NYA mailing list.
Huntington's Disease - An International
Rare Disease Support Network (IRDSN) eGroup open to anyone interested in making friends, sharing information and providing
support for persons affected by
By approval only/for caregivers only. HD Care-givers is designed to be a safe haven for care-givers
of those with Huntington's Disease. Members are encouraged to honestly express their feelings and situations with others.
To join, send a message to Carmen, subject HD Caregivers Membership, and provide her a little bio about yourself.
A place for parents to discuss the special needs of children with Juvenile Huntington's
Disease.
This group is for anyone to speak honestly and and open-heartedly about this devastating
disease.
At place for those at-risk for HD to discuss issues in their lives and offer support.
For anyone and everyone who has any knowledge of, contact with, or involved with Huntingtons
Disease in anyway.
This group offers support to people and families affected
by Huntington's Disease, started by one with the disease.
For everyone connected to Huntington's Disease: those affected, tested positive, at-risk, tested negative, caregivers,
family members, and friends.
When you feel completely isolated and need someone to talk to come here and find someone who has been there.
Message Boards & Chat Rooms
A Message Board is where you post or answer a message on the board. There
is no email involved. A Chat Room is when you have someone join you there for one-on-one or groups "chats", one line
messages.
Learn about all of the other HD support Chat Rooms, Message Boards, etc. available on line on this HDAC
site.
Huntington's Disease Advocacy Center
The HD Lighthouse forum.
This is the new MGH forums. You must register then go
to Huntington's Disease. The old message can be found here MGH HD Forum. This is one of the first HD on-line groups and is hosted by
Department of Neurology at Massachusetts General Hospital through Braintalk.com. |
