Just answering the question of: What brings you here? listed at the top of my page here.
Thanks Karen for helping me answer this question.
The internet and this wonderful place have been such a blessing to me and i'm sure everyone else that is here..it has brought all of us "lost souls" who have been wandering around hopelessly lost and alone..to a place where there are other's who are just like us and who can understand what it is that we are going thru and can share our feelings of dispare and helplessness..it has also brought us the opportunity to make wonderful friends.that take the time to let us know that we may feel alone at times but we aren't..there is always someone out there thinking of us!
All my love, Sisdailey
The internet and this wonderful place have been such a blessing to me and i'm sure everyone else that is here..it has brought all of us "lost souls" who have been wandering around hopelessly lost and alone..to a place where there are other's who are just like us and who can understand what it is that we are going thru and can share our feelings of dispare and helplessness..it has also brought us the opportunity to make wonderful friends.that take the time to let us know that we may feel alone at times but we aren't..there is always someone out there thinking of us!
All my love, Sisdailey
Tags: dystonia, friendship, sharing
Replies to This Discussion
-
Permalink Reply by noelv on -
Our new foundation, American Dystonia Society, plans to address patient loneliness. I know how it feels to feel alone when I was diagnosed. I am drafting an organizational plan to have a peer-to-peer or patient-to-patient mentoring program so no one will feel alone. We will be there for you but we will have a network of real people who understand how it feels to have Dystonia ready to help, answer questions, or just ne there.
-
Permalink Reply by onmom on -
I was hoping for the same thing, to share with, and ask questions of, those who have something in common with myself. Maybe I'm just having a hard few days, but it really seems hard to fit in. So, I guess my reason for coming to this site it just to find information.
-
Permalink Reply by beka on -
Now, why are you having a hard time fitting in ? There is plenty of information on this Forum. Nor are you alone. There always is someone here to help you along, move you along, guide you, support you and Love you. Just as you are.
beka
-
Permalink Reply by karen on -
onmom..sometimes coming to a new place where is so much going on and so many people it can feel a little overwheming..but if you have something you want to talk about..or an answer to something there is always someone who will be happy to talk to you..this group is full of wonderful people..all who have experienced some or all of what you are going thru and would be happy to talk to you..if there is something in particular that you want to talk about no matter what it might be all you have to do is the same thing that you did when you started the discussion "hobbies and dystonia" and someone will reply..i personally would be happy to talk with you one on one..just get ahold of my on my page..
don't give up on this wonderful place or the people that are in here..i have been to many dystonia sites and this one by far is the best one around!!
karen ;o)
-
Permalink Reply by Thorns on -
onmom; There are support groups in Ontario if you have not tried one of these maybe they will feel a need, I help run the one in Hamilton so if you are interested in sitting in on one of the meetings and meeting others with this disorder you are welcome. If we are to far from where you live you can find a group by going to dystonia-foundation.org and going to Ontario support groups and find one close to you. Sometimes physical contact helps to put a face on dystonia, I've met some great people at our meetings, this form is good too but it lacks the physical friendships which develope in a group setting. Thorns
-
Permalink Reply by onmom on
-
Sorry guys, I did not intend to have a pity party for myself. Like I said, maybe I was just having a tough couple of days and getting sensitive (a couple of my questions from previous went unanswered, and I guess it bothered me a little). Not important now though.
Thorns: I have contacted the local dystonia support group leader, and her meetings are held over 2 hours away from me (the areas are so huge!). Hamilton would be the same distance (at least). Haven't contacted London yet. I have a family member with dystonia, and she has been my main non-internet support.
Chris
© 2009 Created by Marie
