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Florida CMT

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  • 2 weeks later...
Guest guest

Hi Bob, I'm in Florida too, and I would like to find a doctor that has some

knowledge in this. What part of our huge state are you in? Thanks and take

care,

Elaine

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  • 3 months later...
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Faye-

I'm down in south Florida. I live in Lake Worth in Palm Beach County.We've

been here since 1979. My late son went to school at the school for the Deaf and

Blind (he was deaf) up by you in St.Augustine.,

Barb

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Barb,

I need to see if I can find a support group in ville. It sure is

frustrating for our 14yr old to deal with this. It is hard for me also. I want

to push her, but know I can only a little bit. It sure is frustrating.

My niece was deaf and went to St. Augustine. She learned alot and did well.

Thanks for the reply.

Faye in Fla

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  • 1 year later...

Hi Elaine,

I have been living in Naples for seven years now. I came from

Toronto area and of course the cold was effecting CMT, so warmth is

better. I too bicycle,workout on gym machine, and used to swim in my

pool, but I sold that home, now my neighbor lets me use his pool. I

haven't worked in few years, I tried partime just driving a car for

2 days week, but became so fatigued i couldnt get my energy back in

the 5 days off, I had to quit. Your right you have to do the best

with what you have. Thank You.

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  • 8 months later...
Guest guest

Hi Barb,

So your in Orange Park? Wow what a small world... My daughter lives in

ville and going up 301 I see signs of Orange Park. We too like North Fl.

We are in Central Fl. just north of Tampa. 3 1/2 hours from Jax. What part of

S. Fl. did you live? I don't like south Fl either to hot and crowded for sure.

Anyway,, I really want to make sure the AFOisn't gong to bother my yucky veins.

Thanks for you answer... :)

Elaine in Port Richey

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Hi Elaine,

I was reading your e-mail and broke down once in Port St.Richey and I

thought it was beautiful. I live in the Keys and thank God, I have a great

neurologist, she only has two other patients down here with CMT and she is

wanted by so many people, her list is full.

If you could get down here, her name is Dr. Brown-Soltero and has saved me

in more ways than one. She even cut me a break on my electric test (I forgot

what the Real name it's called) by 1,000. She's a lifesaver and knew what I had

before I did. If you need anymore info e-mail me. Take care.

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Hi Elaine-

I lived in Lake Worth which is next to West Palm Beach in Palm

Beach County for 26 yrs. My daughter and I just went down there this past

weekend for a visit. We definitely like it up here much better. I know the area

where you are too.My husbands aunt recently moved to Punta Gorda.

I think the west coast of Fl is way too hot in the summer.

When you wear your AFO do you wear a support hose for your " yucky " veins? I do

hope you can adjust to it.

Barb

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Hi ,

Wow, small world for sure... You never know if I take a trip down there to the

Keys. This is so unbelievable to meet, via email all these wonderful people with

CMT.

Never did I know what it was, and know it sure answers alot of questions. May I

contact you at your home email address?

Take care, and thanks.

Elaine

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Hi Elaine,

Sure, I thought I gave it to you. It's spoolie4@.... I did a

classic CMT move yesterday. I was walking back from the mailbox and my ankle

felt like it was going to give out, then I looked up for a second to see how

nice my windows looked (I had cleaned them) and my ankle did give and I fell

over a huge coral rock and scraped up my arm and leg really bad.

Besides worrying about getting coral rock poisoning, I guess cause of the CMT I

can't even get near my leg because it hurts so bad, the nerve endings I guess.

Oh yeah, then there was the embarrassment, hoping no one saw me!!!....lol

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Hi ,, Boy I know just what you mean... I sure hope your leg and scrapes

feel better and heal just fine for you... :(

I took a bad fall a few months ago at Goodwill dropping some things off for

them and started to walk backwards to get out of their way as they were emptying

my car, and and down I went, backwards, my you... on my back and thank goodness

I didn't hit my head on the concrete... Of course everyone comes and asks if I

am ok, and wanted to help me up right away.. I asked them to just let me sit for

a few minutes and then I got my self up... Nothing broke, whewww, but my

backside was BRUISED,,,I mean bigtime... Oh I just have to remind myself

that I cannot walk as fast as the next person and can't do some of the moves

others do.

I am going to write more to you at home... Take care,, and be careful... :)

Elaine

Jeff & <spoolie4@...> wrote:

Hi Elaine,

Sure, I thought I gave it to you. It's spoolie4@.... I did a

classic CMT move yesterday. I was walking back from the mailbox and my ankle

felt like it was going to give out, then I looked up for a second to see how

nice my windows looked (I had cleaned them) and my ankle did give and I fell

over a huge coral rock and scraped up my arm and leg really bad.

Besides worrying about getting coral rock poisoning, I guess cause of the CMT I

can't even get near my leg because it hurts so bad, the nerve endings I guess.

Oh yeah, then there was the embarrassment, hoping no one saw me!!!....lol

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  • 9 months later...
  • 4 weeks later...
Guest guest

Hi there Lloyd,

I live in the central part just north of Tampa. CMT with foot drop and boy do

people like to watch me walk.. LOL I wear an AFO on my left foot. Write when

you can.

Elaine

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  • 1 month later...
Guest guest

Hi Anne, my name is Lainie and I live in Delray Beach area should be down there

in a few months,if you are interested I would love to meet - if not don't worry

I won't take it personal,if you like you can e-mail me.

Thank You

Lainie

(PS 4 kids,honey you need a medal just for that)

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  • 3 weeks later...
Guest guest

Hey Lainie! Thanks for getting back to me. Guess what, we are thinking about

moving to Florida in August; What part of Florida are you? We are looking at

West Coast this time.

Jackie

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Hi Jackie- I'm not Lainie but I live outside ville, Fl. That's the

northeast part of the state. I lived down in Palm Beach County for over 26 yrs.

I've been to the west coast of Fl for trips. It is very hot there in the summer

but I believe cheaper than Palm Beach County. Florida in general is no longer a

cheaper state to live in. Good luck.........

Barb

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Guest guest

Hey Jackie...pardon me for sticking my nose in but where are you moving from???

Just wondering as I just moved out of Fla. not to long ago, couldn't handle the

hot,humid weatherwith my CMTand could not find help with health care...I was one

of the millions that was uninsured.Nearly died!

Geri

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Guest guest

If you're moving to Florida, consider that the east coast is generally somewhat

cooler than the west coast and the center of the state was the model for Dante's

Inferno. In all it's a good CMT place, few steps lots of handicapped parking,

only 2 weeks of winter per year. Like winter up north don't expect to venture

out very much from June to October while the sun is out anyway. It'll often be

over 95 and 90+% humidity after dark as well. Personally as long as the A/C is

working I handle heat better than winter cold.

I had to finally move away, there are just too many people down there for me,

I'm not a line person, and there are lines for everything down there. I miss

bike riding in the Everglades though and New Year's Eve in Key West.

Laine

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Guest guest

Geri,

I am moving from land. Wierd, because heat and humidity do not bother me,

but the cold really does. It really is going to depend on the type of job my

husband gets regarding the health care situation.

I am sorry to hear about your experience. Where did you move to?

Jackie

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Guest guest

Laine,

Where did you move to? Last we spoke I thought you lived in Florida.

Funny, heat does not bother me. Last summer my husband cracked up at me because

I was laying outside taking a nap when it was 100 degrees. We also honeymooned

in Mexico in August and have traveled to the desert in July, so I am not worried

about heat or sun. My husband on the other hand complains all the time about the

heat, so I am surprised that he is the one pushing to move down south. For me,

Florida is the only way I can get my dream home. Ranchers up North are very few

and far between and when there is one they are so expensive.

I do wonder if I will really miss the change of seasons and the scenery up here,

but I have always been happier in the sun and heat and I hate wearing clothes or

coats (LOL). My biggest problem with Florida is how freezing the restaurants

are!

Jackie

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I moved back to Northern Minnesota..I couldn't handle the heat or all the

people..the cost of everything was unreal, in Fort Walton Fla..When I did try to

get health care the woman said if you think its bad now wait! We are going to

get lots of people from other countries and they get heath care first....that

was enough for me!

I was Minnesota bound ..winter or not! One has to be on S.S Disability, Rich or

have very good insurance...no excuse for be poor and disabled!!That's the way it

is in so many states not just Fla. Sorry Fla people but I never care to see the

state again.

I nearly died and the health care system didn't give a damn. The doctor I did

find there was over $100 for a visit, didn't know what CMT was and didn't care,

gave me the wrong meds ended up in ER for two hours at a cost of well over

$4,000.

The hospital discharge papers said I had fatigue... " NOT " . I think I had a small

stroke...the meds the doctor gave me had a recall that caused

strokes!!.........nothing like protecting one another a the expense of a another

human being....so be very careful when moving be picky with your health

care...if you can. I'm so glad to be out of there.

Geri

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