South Florida

[kelly1258]

Anyone on this forum live in South Florida?  I'm going to start support group.

[evo123]

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  

[cathyst]

I am in Coral Springs.   Where are you living?

Cathy

[kelly1258]

No way! Parkland.  Kelly

[cathyst]

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!

[Jade1930]

We live in Lake Worth. My son was just diagnosed this week.

[kelly1258]

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.

[kelly1258]

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?

[cathyst]

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

[Jade1930]

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.