I was wondering if anybody has ordered or viewed these DVD's on Dysautonomia offered on this site and others:

NDRF Conference Video Set (1/2 way down the page)
http://www.ndrf.org/Reference.htm

"Goofy Slipper Lecture on Dysautonomia"
http://www.dynakids.org/social_lecture.jsp

I want to order something for my son's High School, and eventually his college, so they can understand what he goes through.

If you have, please post your review, helpful? informative? thanks

Hi, Melanie,

I have the Goofy Slippers one from dynakids.

It is pretty good. It starts with an intro from Debbie Dominelli and her son is the master of ceremonies. Then the dynakids come up to each give a statement about living with dys. Then it is on to the pros.

Dr. Fischer's talk is the most lively and informative. Dr. Stewart's was very technical with slides of charts and research results. And, I enjoyed seeing and listening to Dr. Grubb. It ends with a song sung by the dynakids montaged to snippets of the kids during the event.

My son and I watched it. Of course, he was bored watching the doctors, and wanted to see more of the kids. I thought it was a good DVD for someone who is interested in finding out the medical side of it all. It is not easy to see from the dvd how kids with dys actually live.

Hope that helps.

Judi

Thanks Judi, I guess my question really is: is this something that their High School or Middle School counselor, student advocate, homebound teacher, school board etc would watch?

Maybe they should make one from the kid's point of view, their everyday struggles, their symptoms, how it affects their daily life?

quote:

Originally posted by cybermom85:
Thanks Judi, I guess my question really is: is this something that their High School or Middle School counselor, student advocate, homebound teacher, school board etc would watch?

Maybe they should make one from the kid's point of view, their everyday struggles, their symptoms, how it affects their daily life?

I think it can be informative for different members of the school staff to watch. I am finding that hearing it from the pros is better received.

I wish DYNA would take some of their stories and make either a separate dvd or a part of another release. It really helps to hear it in their own words. For dys, it is as important to hear the kids as it is to hear from the docs. I found this link on youtube that is a news program covering POTS. I have it on a printout for my school. Hope it helps.

Judi

http://www.youtube.com/watch?v=9k3PIRMkLjU

Thanks Judi! I didn't even think of searching YouTube. Very good video. Easy enough to realize it's real, and to be taken seriously!

I will pass this along. Thanks!

Your welcome, Melanie,

Just to let you know, myspace has some blogs and pages from young people with dys. Also, here is a link I found today with pictures and quotes from different kids with dys. Very nicely done. If I come across anything else, I will let you know.

Judi

http://www.onetruemedia.com/shared?p=37a3b126ce1a494b8a...&utm_medium=text_url