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Research Project On Pots


Iamcertain
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I'm new to this forum.

So i'm doing an illustrated talk on POTS but I need help coming up with a really good tiltle and websites for more information. It's hard to find good reliable websites to use. Any other ideas to incorporate into my project would be helpful.

Also this project would require me to stand for 20 minutes or so when i'm presenting it any ideas on how to prevent my symptoms from overwhelming me while I present wouldl be helpful.

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Compression hose and abdominal binder. Have a chair handy and throw it into your presentation that you may have to sit down and if you start to get dizzy - they will know that you must ---or you won't be able to keep your head clear enough to present your info.

Hope things go well for you. Brave of you to try to stand that long in one place. Keep shifting your weight and bend your ankles alot.

Issie

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I agree with Issie, keep a chair nearby and shift your weight. Also have water with you. Can I ask why you are presenting this? Just wondering.

Here are some websites that I use and/or have heard of:

Of course I use...http://www.dinet.org/

http://dysautonomiasos.org/

http://ndrf.org/

Look up Dr. Blair Grubb, he is a leading doctor in dysautonomia

Other than the above, I've found lots of information on the blog: http://bobisdysautonomia.blogspot.com/ and she finds humor (much of the time) in dealing with this chronic illness.

Hope this helps :)

Good luck!!

Bebe

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Illustrated talk? Some ideas to include are: diagrams of the autonomic nervous showing all the bodily functions it controls, pictures depicting pooling in the legs/feet, pictures of people getting tilt testing. You can easily incorporate the chair you'll have next to you (for your use and as part of your discussion) because once you describe the mechanisms and symptoms in POTS, they'll understand why you need to sit!

Pooling pictures:

http://www.ipej.org/0602/raj.htm

http://www.nymc.edu/fhp/centers/syncope/pots.htm

http://dysautonomiasos.tumblr.com/POTS

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Hi Iamcertain! One thing to help you get through the presentation will be to move around. I am trained in public speaking and corporate training, and one of the things we are taught is not to stand in one place (lucky for POTSies). Walking across your stage/front of class room from side to side (slowly...not so fast it is distracting) actually keeps everyone focused on you better than standing still. If you are in a classroom setting and not on a raised stage, you can even set your visual displays such as posters or use of an overhead in different areas of the room. It gives you opportunity to move and gives the people watching a chance to stay focused. Moving around helps your body continue to pump blood out of your lower body and up to your heart and brain. Of course, the others are correct, you should have a chair available in case you need it. Good luck on your presentation!

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Yes, bebe I was diagnosed with POTS and Neurocardiogenic syncope in November by Dr. Svetlana Blitshteyn after being sick for about a year. I am limited in the activities I can do but I hope others learning about POTS will help people being diagnosed faster and treated faster. We had to search out a doctor familiar with POTS once we figured out that what might be making me sick. I've lost almost all of my summer and sophmore year of high school from being too sick to participate in typical teen activities.

For one of my visuals, I am drawing a outline of the body on one half i'm going to color the blood flow of a POTS patient and the other half is going to be blood flow of an average person. I was thinking about making a mini tilt table out of wood (which shouldn't be too hard) to show what it looks like as another visual. Still not sure though

I had never been on dynakids before but it is a really good site i'm going to use.

Thank you for the advice katybug, it is much easier for me to stand up when I am moving around. But things like standing in line or standing in lab class for even 15 minutes is difficult. I will try to remember to move around a little, keep the blood flowing.

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Cool! Good for you.

I'd definitely use a stool or chair and incorporate into presentation. Any other helpful devices you use would be good visuals too! Salt, gatorade, folding stool, etc.

Vanderbilt also has a great section for on their website for patient information about various autonomic disorders.

Let us kow how it goes! Maybe you can video it and post on You Tube.

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If you want it want a care givers point of view. I have told our story on survivingpots.com.

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