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Hi, Valerie! Be assured that you are not alone. The listing of
Graves’ Disease support groups is at http://www.ngdf.org/groups.htm
Unfortunately, Montana is among the states that currently do not
have a support group. Nancy, our NGDF director, would love to add
one more to the list. Here’s how:Get in touch with Nancy at ngdf@citcom.net. She will mail you the
initial information. There should be little or no cost to start a
support group. What it “costs” is TIME. You will need a doctor
to act as “resource physician”, and the doctor can most likely help
you get a place to meet at the hospital. You also need another
person to help you. Check it out. I’ve heard that being a support
group facilitator is more rewarding than attending the group meetings.Wishing you health and happiness, Debby
If you are interested in starting a group in your area, you can also get myriads of information and tons of help from the NGDF (National Graves Disease Foundation). that’s what THEY are there for.
Mitakuye Oyasin
ValValerie, I contacted that particular org. yesterday and was referred
to another org. where I got a recording and no help.My lovely wife Jan answered the question very well. Finding a doctor to
help was the easy part. The hospital was very helpful too as Jan stated.
The hard part was making a commitment by us to carry through with this.
Yes we get more work to do than the average support group becase we also
run the BB and the Wed night Chats. If you can find a co-leader it really
helps to keep you from getting burned out.I have talked to many of the support group leaders over the years and we
do not require warm fuzzies to keep doing what we do. It is nice to know
once in awhile that we make a difference. I will be honest with you all there
have been days that I did not want to deal with the BB or mail because I was
having problems of my own. But I always read the BB and try to answer my mail.
I remember when I was going through BAD eye problems and had no one to talk
to because this BB did not exist and I did not know the NGDF existed. I put
my family through hell. I used to be able to go from zero to a@@hole in about
half a second. Not any more!!We go to our support group meeting every month for only one or for thirty. As
long as one needs help we will be there. I know I needed it before and there
was no one but my family and I took things out on them. They have been very
supportive and when you start a support group invite the families so they know
what is going on too.As for bulletins, you will receive the full set (free) and I make copies for
my folks that request them (no charge for bulletins in my group) so they can
leave the meeting feeling better than when they got there (I hope).What do we get out of it? A sense on oneness with each other since we all know
we are in the same boat. Nancy said we would like to see zero suicides due to
Graves disease. My cousin killed himself at age 23 because he had Graves disease.
I spent hours on the phone with him when he was diagnosed to help him out. In
Tiger’s case he was raised that asking for help was unmannly and to walk it off
so to speak. If there had been someone local to talk to things may have been
different. Tiger knew what I went through and he had no one else to compare
his disease to. A support group lets you see others in the same boat and you
begin to understand Graves disease is not a death sentance. It just makes us
try a little harder to get through the day.Start a group where you live. The commitement is the hard part. The rest
falls into place once you have mad the choice.Love to all,
Jake
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