Video Entry For Neuro Film Festival - Please Read

[HopeSprings]

I passed on a message a little while ago about a dysautonomia/POTS video entry to the Neuro Film Festival. The instructions previously given were to vote for the video on YouTube, but there has been a change. This new message came in today from the founder of Dysautonomia International and I wanted to pass it along. Participating in little things like this makes me feel good, like I'm contributing in some small way to help raise awareness for dysautonomia. It's a quick registration and then you can vote. Thanks!

New message:

"Here's a great way to spread awareness about dysautonomia! Please visit the Neuro Film Festival website and cast your vote for the film titled "Autonomic Function Disorders." We had previously asked everyone to vote for this video on YouTube, but just found out that a new voting system on the Film Festival website opened up yesterday. The YouTube votes will not count towards the Film Festival awards. Please help spread the word and ask your friends and family to vote for the "Autonomic Function Disorders" video as well, through this website:"

http://patients.aan.com/go/about/neurofilmfestival

Part of the original message:

"Dr. Lawrence Kinsella and POTS patient Darren Rosener have submitted this outstanding video to the 2013 Neuro Film Festival. The winning video will be shown during the 2013 American Academy of Neurology Conference in March, the largest gathering of neurologists in the world. If this video is shown to a massive gathering of neurologists, it could do wonders for spreading awareness about autonomic disorders and POTS to the physician community. Please circulate this around to all of your friends and family, and other dysautonomia groups." Darren & Dr. Kinsella need as many votes as possible to win.

[arizona girl]

Well, this is interesting! I just have one question, "Why aren't we entering our own video, "Changes". It goes much further then this particular doctor's video does.

[HopeSprings]

I don't know details on the contest (entry requirements etc). - just passing on info that came my way. You could look into it for Changes.

[Christy_D]

When I went to the website, there was also another video on POTS. It showed more how debilitating this womans life had become.

[HopeSprings]

I saw that video, Christy - it was beautiful and heartbreaking. Made me want to cry. So two dysautonomia videos, even better - one informative, one emotional. My understanding is neurologists will be watching these and voting - maybe Doctors who have never heard of our illness will learn something. Oh and the video had to be under 5 minutes, so Changes would have been too long.

[arizona girl]

Oh, that's too bad. Thanks for looking into that. BTW, my comment wasn't directed at you, just an out loud thought. So consider this just my take on things. Maybe I'm biased but, I think our changes video though longer really gives a bigger more informative and balanced picture. I thought this neuros video, while it is good, and it's good to get the pub, it was a bit short sited and gives the impression that patients recover some what quickly, with just exercise and salt loading, and some do. Many don't.

I just worry about those of us who could get dismissed because of this video, when we don't respond as expected. There can be among doctors that only know a little bit about Pots, a kind of "Oh, it's just Pots, it's not serious." type of attitude. Many still think it is only found in young women who will out grow it. That attitude happened to me. I didn't give up and we eventually found out my pots was a secondary symptom and was due to several serious disease states, that left untreated could have become life threatening. It took over 20 years to get properly diagnosed. Thanks in a huge part to Dinet. As it was I have had a few close calls, but I'm doing better with my current treatment plan. I might note because I'm hyper the salt loading did not help me. I went through a load of bp meds which did not help including beta blockers. Most made me worse. Labetalol has been the most effective. I agree exercise is important as it does keep your muscle pumps strong which helps counter Pots. I've gone through two PT rounds and got worse after both. I realize that the exercise plan I will need has to be done more carefully like they are doing with CFS and hypermobility.

As most of us who have spent any time on the forum know, it really depends on why we have pots. That pots should be a diagnosis of exclusion. Which is why in spite of medical interventions some of us don't get better with just treating pots. If we stick with it and keep trying to figure it out we will get to a better place as we do the best we can to manage our treatment plans. I feel lucky to be one of the ones recovering, not cured, but for sure better then I was. We are a tenacious bunch!!!

[HopeSprings]

I agree with everything you said, Arizona. And I'm the last person who would want a rosey picture portrayal of POTS. He does say it's not curable and the goal is to at least get us to 50% of our previous functioning. I think that says a lot about how challenging this can be to manage. I do wish there was more emphasis on how debilitating the condition is though. It's not perfect, but it's a start. Maybe for the next one, some talented person here could take Changes (which I love), condense it into 5 minutes and submit that.