Dysautonomia (Autonomic Dysfunction) Community
South Florida
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

South Florida

Anyone on this forum live in South Florida?  I'm going to start support group.
Tags: florida
9 Comments Post a Comment
Blank
726204_tn?1285879778
That is a really good idea, unfortunately I am miles away but I would love there to be a support group in the UK, at least then we could actually meet people in person who have this to.

Good Luck x  
Blank
Avatar_f_tn
I am in Coral Springs.   Where are you living?

Cathy
Blank
Avatar_f_tn
No way! Parkland.  Kelly
Blank
Avatar_f_tn
That is hysterical!  I live off of University between Wiles and Westview - so close and same zip code!  I'm in Pine Ridge.  In fact, we just started using the new Publix on University, past the Parkland Golf Club.  It is so nice and quiet, like we are the only ones that know it is there.  So, you are a PHO!
Blank
1098097_tn?1258146072
We live in Lake Worth. My son was just diagnosed this week.
Blank
Avatar_f_tn
Hi, what was your son diagnosed with. I have a group of friends whose children have dysautonomia and POTS.  We just met for lunch to share info.  Maybe you would like to join us.  One is a 15 year old boy from Boca.  We meet in Boca which is 20 minutes from u.
Blank
Avatar_f_tn
How funny is that I live in Cypresshead!  I love that Publix.  My husband's office is right on Westview.  Do you have a dysautonomia?
Blank
Avatar_f_tn
My good friend, who lived next door to me when we moved in, was planning on moving to Cypresshead, but ended up in Whispering Woods.  Would you by any chance know Dina Ziegler?  She is a riot and knows everyone.  We moved here from Valley Forge six years ago.

I assume I fall under the umbrella of Dysautonomia.  I have had a probable case of Primary Progressive MS for the past four years.  I see an MS specialist at UM.  In May she ordered the EMG/nerve conduction test that showed I have autonomic large and small fiber neuropathy.  I have also seen a dr. at the Cleveland Clinic that did an additional test, showing the nerves to my heart are damaged.  The big problem, is that there are no doctors IN THE STATE that can seem to help me.  It is so frustrating.  I have so many unanswered questions.  Actually, I probably don't really want the answers.

I am married with three grown sons.  My oldest lives in Viscaya with his wife and two precious babies!  My middle son was recently married in PA (I was too sick to attend).  He lives in Tamarac and is a chef at Boca West, his wife is a nurse manager at Holy Cross.  My youngest is still home - taking the slow boat to China!

From what I read, it seems your son is the one with dysautonomia.  If so, that breaks my heart.  I am happy that you found someone in Boca.  Hopefully, you can help eachother.

Usually, my husband does all the food shopping alone.  If I am up to it, I go along either in Publix scooter or my power wheel chair.  Keep an eye out for me!

Keep me posted neighbor!
Cathy
Blank
1098097_tn?1258146072
They diagnosed him with POTS. I would love to meet up with other parents going through this and hopefully get some advice. Just tell me when and where and I'll try my best to come.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Dysautonomia (Autonomic Dysfunction) Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Arrhythmias Answerers
612876_tn?1355518095
Blank
Heiferly
Columbus, OH