So last Friday, a good friend of mine Christina, asked me to meet at her desk that she wanted me to meet someone. She introduced me to a lovely girl (woman) Betsy. Betsy was just Dx with Chiari 1! With the statistics what they are (1:1,000 have Chiari and only a fraction are dx or have symptoms) I never expected to work with someone else who had symptoms and was dx. I also have been in contact with a guy in a nearby city who is interested in a support group and doesn't currently know of any in MN. So I'm more pumped now than ever to get going on organizing this support group.
Thank you to everyone for your on going support and love!!
-AP
3 comments:
I have found your blog through Laci's Chiari blog. My son is actually laying in the bed right now recovering from the decompression. The dr's act like he will get over this and feel good in a week. I am questioning that. He is miseable. I am hoping you can help me.
I am intested in knowing what is the most comfortable way to sleep after surgery once you are home? He is scared to move his neck so I know he is going to be sore a long time. If there is any other helpful info I can do for my son I would love to know. Thanks for your time. yvetteoren@embarqmail.com
My blog: http://lifes2short-yvette.blogspot.com/
Hi Amanda,
Another Minnesotan Chiarian family here that would be very interested in a local support group! Have you found or started one? How can we get involved??
Thank you!
here is a support group in MN . cONTACT JUDY She lives in MN
Midwest ASAP Connection
Judy Hunt
763-795-9980
Judy_Hunt@ASAP.org
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