I’ve been following a thread in the National Ataxia Foundation’s facebook page. I’m finding it very upsetting. Lots of people are joining in and listing all the things that Ataxia has “taken away from them”! Oh give me a break! What is the benefit in doing this? This image was my response:
but it didn’t to make an impression. People still continued to mourn what they could no longer do the way they used to be able to.
I want this to be a place where members of our support groups can write about our experiences with Ataxia and their family and friends can comment. I want others to get a feel for what we go through and for others dealing with this, to know they are not alone.
I try to give my life with Ataxia a positive spin and hopefully those that read it will come away with a feeling of peace, acceptance and hope. Sometimes I feel that this Ataxia can be so depressing but by writing about my feelings, in public, I force myself to look at the positives. I know I don’t enjoy reading about depressing thoughts and listening to people whine (which is so easy to fall into with this condition) so I wanted to write about something different.
My hope for this blog is that it brings further awareness about what Ataxia is while providing support for those that are dealing with Ataxia.
John Mauro is creating a gingerbread Ice Castle at the Auburn Mall to support Ataxia research. Let’s SUPPORT him! The full article can be read here: http://yankeeshopper.net/content/john-mauro-create-gingerbread-ice-castle-auburn-mall
I have Ataxia! And I am not the only one. If you are reading this, this may also be what you are dealing with or someone you know may be dealing with this. So, how do I respond when people look and stare?
This blog has been set up to fill that gap in support that we all need. The last Boston area meeting was November 1st and it’s next meeting is February 7th. The NH and RI groups meet this Saturday. However, many people with Ataxia can not make it to these meetings. Therefore, this blog has been set up to serve as a way for all our NE members to keep in touch in between the times they can not meet face-to-face. So let’s share with each other those ideas we think others might benefit from, those questions we all have…Let’s not let anyone feel they’re alone in this. I know, for myself, that my biggest benefit from support groups has been learning the fact that “I am not the only one!”
Hey everyone welcome to the New England Ataxia Support Groups under the National Ataxia Foundation (NAF) blog. If you have signed on to this group, you have the ability to publish, comment, write, and upload pictures if you wish. You can share ideas, issues, concerns, research, or new findings on here. The general public can see all posts and comment on them.
Let’s start by introducing ourselves. Include a picture if you want, putting that post in the introductions category and then providing contact information under the Contact Info category. Just go to the top right and click “new post” and type away. Don’t forget to choose a category (on the right side). You can always start your own categories too! To invite other members of our support groups to this blog, click the globe on the top left, then ‘visibility’ then ‘users’ then ‘invite new’. Make sure to add all new people as ‘administrator’- Donna