Myotonic Chat Group
marciamellows (Dec 19, 2007 8:46:45 PM)
marciamellows (Dec 19, 2007 8:47:26 PM)
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marciamellows (Dec 19, 2007 8:48:03 PM)
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vdoman (Dec 19, 2007 8:48:19 PM)
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Fluffy (Dec 19, 2007 8:48:31 PM)
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marciamellows (Dec 19, 2007 8:48:38 PM)
Hi Corey. Whats new?
marciamellows (Dec 19, 2007 8:48:46 PM)
I fluffy. You are early today.
vdoman (Dec 19, 2007 8:48:52 PM)
Hi MM and Fluffy
marciamellows (Dec 19, 2007 8:48:55 PM)
I saw Alice and Ed today.
Fluffy (Dec 19, 2007 8:48:57 PM)
hello,
PaRay (Dec 19, 2007 8:48:59 PM)
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vdoman (Dec 19, 2007 8:49:09 PM)
How are they?
Fluffy (Dec 19, 2007 8:49:25 PM)
hi paray
PaRay (Dec 19, 2007 8:49:27 PM)
Hi girls and guy.
marciamellows (Dec 19, 2007 8:49:31 PM)
Today is my anniversary. I have been married for 42 years. PaRay, isn't your anniversary soon also. How long have you been married?
marciamellows (Dec 19, 2007 8:49:53 PM)
Alice is fine and Ed is the same.
bette (Dec 19, 2007 8:50:02 PM)
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PaRay (Dec 19, 2007 8:50:08 PM)
Last week. Been married all my life to the same broad.
marciamellows (Dec 19, 2007 8:50:15 PM)
Hi Bette
Fluffy (Dec 19, 2007 8:50:15 PM)
hi bette
vdoman (Dec 19, 2007 8:50:33 PM)
42 years and Jeff has been able to put up with you that long, LOL!
marciamellows (Dec 19, 2007 8:50:56 PM)
Jeff does not put up with me. He tunes me out and watches sports on the television.
bette (Dec 19, 2007 8:51:08 PM)
Hi all
vdoman (Dec 19, 2007 8:51:23 PM)
So that is his secret
PaRay (Dec 19, 2007 8:51:25 PM)
Hi Bette
lisaw (Dec 19, 2007 8:51:27 PM)
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vdoman (Dec 19, 2007 8:51:32 PM)
Hi Bette
marciamellows (Dec 19, 2007 8:51:39 PM)
I am going to Las Vegas on Sunday with my oldest and youngest daughter. My middle daughter is in Ohio celebrating Christmas with her husband's family.
bette (Dec 19, 2007 8:51:43 PM)
MM, that sounds familiar
Fluffy (Dec 19, 2007 8:51:47 PM)
hi lisaw
vdoman (Dec 19, 2007 8:51:52 PM)
Well Hi LisaW
lisaw (Dec 19, 2007 8:52:03 PM)
Hi everybody
marciamellows (Dec 19, 2007 8:52:27 PM)
Everybody is so early today. Does anyone have any special plans for Christmas?
vdoman (Dec 19, 2007 8:52:40 PM)
Xmas in ka-ching Las Vegas
vdoman (Dec 19, 2007 8:53:18 PM)
We go to a movie on xmas day a jewish tradition
marciamellows (Dec 19, 2007 8:53:41 PM)
vdoman, the tradition is a movie and Chinese food.
vdoman (Dec 19, 2007 8:53:57 PM)
Sounds Good
lisaw (Dec 19, 2007 8:54:16 PM)
You can find a restaurant open on Christmas Day?
bette (Dec 19, 2007 8:54:17 PM)
We'll either stay home or do some volunteer work/. I don't know where.
shabake (Dec 19, 2007 8:54:40 PM)
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aeras (Dec 19, 2007 8:54:40 PM)
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vdoman (Dec 19, 2007 8:54:51 PM)
How are you feeling Bette
Fluffy (Dec 19, 2007 8:55:08 PM)
hi shabake and aeras
aeras (Dec 19, 2007 8:55:08 PM)
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vdoman (Dec 19, 2007 8:55:25 PM)
Hi Shabake
bette (Dec 19, 2007 8:55:57 PM)
I'm doing O.K., still itching while I hear but all wounds are closed, now it's just a matter of the old skin peeling and the new skin showing up. It's a very slow process.
bette (Dec 19, 2007 8:56:36 PM)
Lisa, Chinese resturants are usually open on Christmas in L.A..
vdoman (Dec 19, 2007 8:56:48 PM)
What are you healing from Bette did
lisaw (Dec 19, 2007 8:56:55 PM)
Bette, were you burned?
bette (Dec 19, 2007 8:57:19 PM)
Yes Lisa and vod are am still healing from the burn.
vdoman (Dec 19, 2007 8:57:47 PM)
How did you burn urself?
bette (Dec 19, 2007 8:57:55 PM)
I mean I am still healing
shabake (Dec 19, 2007 8:59:04 PM)
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bette (Dec 19, 2007 8:59:08 PM)
CDO, this is old burn I got at the end of August. I feel down and spilled hot water and noodle all over me.
marciamellows (Dec 19, 2007 8:59:19 PM)
We are ordering in chinese food tonight for our anniversary and our oldest daughter is joining us. Pretty romantic, huh! My youngest daughter is in Laughlin (she comes home Friday and then goes to Vegas with us on Sunday) and my middle daughter is in Ohio.
marciamellows (Dec 19, 2007 9:00:03 PM)
vdo, are you leaving early and going to dinner tonight?
bette (Dec 19, 2007 9:00:20 PM)
Marcia, happy anniversary. Ours is on Christmas Eve and we will go out for dinner on the 27th. The 24th is too crowed.
vdoman (Dec 19, 2007 9:00:30 PM)
MM went to my Company Xmas Party yesterday with Susan we had a great time.
marciamellows (Dec 19, 2007 9:00:36 PM)
How many years bette?
vdoman (Dec 19, 2007 9:01:03 PM)
Yes I will leave for dinner at 6:30
marciamellows (Dec 19, 2007 9:01:03 PM)
vdo, what did they do at your company christmas party?
marciamellows (Dec 19, 2007 9:01:19 PM)
lisaw, how is your husband doing with his AFO's now?
bette (Dec 19, 2007 9:01:25 PM)
37 years. We are going to Mark's Union Party tomorrow. Really good food.
marciamellows (Dec 19, 2007 9:01:36 PM)
fluffy, what is new with you?
shabake (Dec 19, 2007 9:01:45 PM)
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shabake (Dec 19, 2007 9:01:56 PM)
hi all
lisaw (Dec 19, 2007 9:02:13 PM)
I have been talking to a writer for Quest. about sleep studies and NIV. She wants to E-mail someone who has successfully wore a full face mask for her article. (AS i Am still having trouble wearing a C-PAP) If interested, E-mail her at kweichsler@mdausa.org
Fluffy (Dec 19, 2007 9:02:15 PM)
nothing really my disability went up
marciamellows (Dec 19, 2007 9:02:42 PM)
fluffy, what is NIV?
vdoman (Dec 19, 2007 9:03:06 PM)
We had Filet Mignon at a local Country Club and than played some games and some of my cohorts did karoke
marciamellows (Dec 19, 2007 9:03:24 PM)
vdo, did you do karaoke?
shabake (Dec 19, 2007 9:03:32 PM)
anbody\
lisaw (Dec 19, 2007 9:03:34 PM)
Wrong person - my husband doesn't have MMD. I do.
Fluffy (Dec 19, 2007 9:03:58 PM)
Lisa I have trouble with my mask too I can;t sleep with it all night I wake up and take it off
shabake (Dec 19, 2007 9:04:01 PM)
anybody there?
vdoman (Dec 19, 2007 9:04:04 PM)
Are you kidding if I sang I would clear out the party
vdoman (Dec 19, 2007 9:04:13 PM)
Wb shabake
shabake (Dec 19, 2007 9:04:25 PM)
ty vdo
lisaw (Dec 19, 2007 9:05:06 PM)
I contacted her first because they were doing an article on sleep studies. I have been through numerous sleep studies.
bette (Dec 19, 2007 9:05:10 PM)
Flully, I usually do the same thing. I think I sleep through the night about 50% of the time.
marciamellows (Dec 19, 2007 9:05:11 PM)
We have a very funny DVD of Jeff and I doing "Do You Love Me" from Fiddler On the Roof many, many years ago when he was still healthy and also Da Do Run Run at a Karaoke party.
shelly (Dec 19, 2007 9:05:14 PM)
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shabake (Dec 19, 2007 9:05:24 PM)
I jusat want to wish everyone happy holidays
shabake (Dec 19, 2007 9:05:33 PM)
hi michelle
shelly (Dec 19, 2007 9:05:47 PM)
you too Sharon
shabake (Dec 19, 2007 9:05:52 PM)
ty
vdoman (Dec 19, 2007 9:05:53 PM)
Suzy always told me to sing solo "so low we can't hear you"
shabake (Dec 19, 2007 9:06:23 PM)
I'm home now with bronchotis
marciamellows (Dec 19, 2007 9:06:24 PM)
I like that vdo!!!!!! I have to remember that.
marciamellows (Dec 19, 2007 9:07:08 PM)
Did I tell you that Jeff fell a few weeks ago and I could not get him up and I had to call 911. Two of the most georgeous hunks came.
bette (Dec 19, 2007 9:07:10 PM)
Shabake, that is a terrible way to start the holidays. Hope you get will soon.
shabake (Dec 19, 2007 9:07:31 PM)
yu bette
vdoman (Dec 19, 2007 9:07:34 PM)
Sha how do you get bronchitis in sunny Florida
shelly (Dec 19, 2007 9:07:36 PM)
I say to someone who is singing badly, "Who sings that/" then the person names the singer. Then I say, "let ThEM sing it, ok?"
shabake (Dec 19, 2007 9:07:43 PM)
mm did he break anything?
shelly (Dec 19, 2007 9:07:48 PM)
I had it last week
shabake (Dec 19, 2007 9:08:16 PM)
vdo when the wesather changes i get it everyb winter
marciamellows (Dec 19, 2007 9:08:21 PM)
No he did not break anything. He fell very gracefully. In fact I told 911 when I called them that he was no hurt and they came without lights and siren.
shelly (Dec 19, 2007 9:08:23 PM)
I was worried it would turn in to a cough, but it didn't
iris1 (Dec 19, 2007 9:08:54 PM)
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shabake (Dec 19, 2007 9:08:56 PM)
thank god
shelly (Dec 19, 2007 9:09:26 PM)
MM- my uncle, who falls often, wears a life call lanyard around his neck. If he falls they come and get him back on his feet
shabake (Dec 19, 2007 9:09:49 PM)
we thought we had the plague. Everyone is coming down with it
vdoman (Dec 19, 2007 9:09:54 PM)
MM is going to call 911 everytime she wants some eye candy and may even push Jeff down so she can call
marciamellows (Dec 19, 2007 9:10:00 PM)
shelly, I keep intending to look into that and never get around to it.
marciamellows (Dec 19, 2007 9:10:12 PM)
You got that right vdo!!!!!!
iris1 (Dec 19, 2007 9:11:00 PM)
PaRay, Thank you for the e-mail I will be looking for the mail from you. What have I missed ? You fell?
bette (Dec 19, 2007 9:11:14 PM)
Anyone heard from Baby Kayla lately?
shelly (Dec 19, 2007 9:11:25 PM)
My aunt and cousin can't lift him anymore- my cousin has MMD, too. Only their son, who lives in Nashville can lift him up.
PaRay (Dec 19, 2007 9:11:33 PM)
Jeff fell
Fluffy (Dec 19, 2007 9:12:04 PM)
does anyone want to buy a spomgebob squarepants clock or screaming monkeys for a very low price?
PaRay (Dec 19, 2007 9:12:08 PM)
MM candy eyed the medics.....
shelly (Dec 19, 2007 9:12:16 PM)
My students gave me the cold- I knew I would get it sometime this season
vdoman (Dec 19, 2007 9:12:21 PM)
I had that for Suzy when I left the house in case she needed help
marciamellows (Dec 19, 2007 9:12:36 PM)
vdo, I left a message at Adele's. If they return my call I will let you know.
shelly (Dec 19, 2007 9:12:36 PM)
MM- I know those medics are some hotties!
vdoman (Dec 19, 2007 9:12:56 PM)
Ok thanks MM
barblion07 (Dec 19, 2007 9:13:05 PM)
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barblion07 (Dec 19, 2007 9:13:23 PM)
Hi new to the chat
iris1 (Dec 19, 2007 9:13:24 PM)
Where was Jeff when he fell? Is he Okay? I missed the info. about Jeff.
shabake (Dec 19, 2007 9:13:57 PM)
welcome barblino
vdoman (Dec 19, 2007 9:14:00 PM)
MM you are going to need a cold shower if you keep on thinking about those paramedics
bette (Dec 19, 2007 9:14:08 PM)
Welcome Barblion07, Tell us somethang about yourself.
marciamellows (Dec 19, 2007 9:14:23 PM)
welcome to our chat family barblion07. Could you please tell us a little about yourself. Do you or a family member have MMD?: Where you are from? etc., etc. etc.
barblion07 (Dec 19, 2007 9:14:55 PM)
I'm 38 I live in NY and I have an undiadnosed md
shelly (Dec 19, 2007 9:15:21 PM)
when are going to the neurologist?
shelly (Dec 19, 2007 9:15:35 PM)
what are your symptoms
barblion07 (Dec 19, 2007 9:15:36 PM)
I have been through 4 in 3 years
shelly (Dec 19, 2007 9:15:47 PM)
that must be frustrating
barblion07 (Dec 19, 2007 9:15:52 PM)
They are sending me to columbia
barblion07 (Dec 19, 2007 9:15:59 PM)
it is
marciamellows (Dec 19, 2007 9:16:01 PM)
Jeff does not walk much anymore. He basically rides his electric scooter so his legs are weak and he falls when he tries to transfer. He was transfering from his scooter into bed and fell very gracefully. I knew that he was not hurt, but my daughter was not home and it was too late to call a neighbor and i could not get him up so I called 911.
bette (Dec 19, 2007 9:16:26 PM)
Is there an MDA clinic anywhere around you? You should be able to get diagnosed there.
barblion07 (Dec 19, 2007 9:16:49 PM)
my muscles are weak, falls, chocking issuses,feeding tub, foot drop
shelly (Dec 19, 2007 9:17:07 PM)
what muscles are affected most?
barblion07 (Dec 19, 2007 9:17:22 PM)
twitching muscles, my muscule spasam bad
marciamellows (Dec 19, 2007 9:17:24 PM)
barblion, do you have a feeding tube?
shabake (Dec 19, 2007 9:17:24 PM)
bar I went for ears and everone thoght that all the falling I was doing was because I was a klutz
vdoman (Dec 19, 2007 9:17:27 PM)
Sounds like all the symtoms of MMD
barblion07 (Dec 19, 2007 9:17:41 PM)
lower legs face neck, eyes, lower arms
bette (Dec 19, 2007 9:17:49 PM)
What muscles got weak first?
shelly (Dec 19, 2007 9:18:00 PM)
sounds like symptoms of MMD, but I'm no expert
barblion07 (Dec 19, 2007 9:18:02 PM)
my feet I think
shabake (Dec 19, 2007 9:18:06 PM)
I fell so many times and I was always breaking my feet
shelly (Dec 19, 2007 9:18:12 PM)
ouch!
marciamellows (Dec 19, 2007 9:18:14 PM)
barblion, where in New York are you from?
barblion07 (Dec 19, 2007 9:18:22 PM)
middletown
bette (Dec 19, 2007 9:18:26 PM)
Mine started in my fingers but I really noticed it first in my fee.
bette (Dec 19, 2007 9:18:38 PM)
Feet
barblion07 (Dec 19, 2007 9:18:38 PM)
the cold makes my muscles very tight
shabake (Dec 19, 2007 9:18:47 PM)
I;m from Ronknoma
barblion07 (Dec 19, 2007 9:18:55 PM)
wheres that
shelly (Dec 19, 2007 9:19:03 PM)
I hyperextended my feet last year and it hurt so much- lots of bruising a swelling, but nothing broke
marciamellows (Dec 19, 2007 9:19:06 PM)
Are ronknoma and middletown near each other?
vdoman (Dec 19, 2007 9:19:12 PM)
You need to go to an MDA Clinic near you
shabake (Dec 19, 2007 9:19:22 PM)
It;s opn long island out east
barblion07 (Dec 19, 2007 9:19:33 PM)
ouch I have fallen 5 times this week
shelly (Dec 19, 2007 9:19:47 PM)
oh MY! Do you use a cane?
shabake (Dec 19, 2007 9:19:48 PM)
i;m not sure mm
zacsmom (Dec 19, 2007 9:19:57 PM)
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barblion07 (Dec 19, 2007 9:20:01 PM)
well i should
shabake (Dec 19, 2007 9:20:04 PM)
hi zac
vdoman (Dec 19, 2007 9:20:06 PM)
Hi Zac
zacsmom (Dec 19, 2007 9:20:08 PM)
hello all
bette (Dec 19, 2007 9:20:13 PM)
Has anyone suggested using AFO's
zacsmom (Dec 19, 2007 9:20:14 PM)
hey corey
shelly (Dec 19, 2007 9:20:23 PM)
please do-I hate to hear about one of us falling so much
zacsmom (Dec 19, 2007 9:20:24 PM)
whens your next meeting
barblion07 (Dec 19, 2007 9:20:28 PM)
my drs here are clueless
shelly (Dec 19, 2007 9:20:41 PM)
they seem like it
iris1 (Dec 19, 2007 9:20:54 PM)
Barbliono07, who do you live with? Are you married? My husband has MMD and I am his only caregiver.
barblion07 (Dec 19, 2007 9:21:04 PM)
I have to wait for an opening in columbia in nyc
shelly (Dec 19, 2007 9:21:05 PM)
I have not fallen since I got my AFO's
shabake (Dec 19, 2007 9:21:10 PM)
bar at least you are lucky you don't live in Florida
vdoman (Dec 19, 2007 9:21:12 PM)
I am going to try to have another support meeting mid January Zac
marciamellows (Dec 19, 2007 9:21:15 PM)
iris, how is you husband doing with his AFO's now?
zacsmom (Dec 19, 2007 9:21:27 PM)
ok i'll be there
barblion07 (Dec 19, 2007 9:21:33 PM)
I have my husband and daughter with me
zacsmom (Dec 19, 2007 9:21:54 PM)
does anyone know about those drug studies
barblion07 (Dec 19, 2007 9:21:59 PM)
i started this when I was 9
marciamellows (Dec 19, 2007 9:21:59 PM)
barblion, is your daughter affected with the disease?
barblion07 (Dec 19, 2007 9:22:05 PM)
yes
iris1 (Dec 19, 2007 9:22:07 PM)
He will not wear them. He went to his Lung Dr. today for a checkup and got a very good report.
vdoman (Dec 19, 2007 9:22:08 PM)
I will email you a date when I get one
zacsmom (Dec 19, 2007 9:22:15 PM)
ok
barblion07 (Dec 19, 2007 9:22:20 PM)
she has weakness and is always tired to
marciamellows (Dec 19, 2007 9:22:30 PM)
How old is your daughter?
zacsmom (Dec 19, 2007 9:22:33 PM)
is it onset
shabake (Dec 19, 2007 9:22:37 PM)
how old is she barb?
barblion07 (Dec 19, 2007 9:22:40 PM)
and she has the i dont care
barblion07 (Dec 19, 2007 9:22:45 PM)
16
zacsmom (Dec 19, 2007 9:22:57 PM)
so it is onset
sissy1 (Dec 19, 2007 9:22:59 PM)
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zacsmom (Dec 19, 2007 9:23:18 PM)
who all is new other then me
marciamellows (Dec 19, 2007 9:23:20 PM)
sissy, are you new to the chat?
vdoman (Dec 19, 2007 9:23:25 PM)
welcome sissy please intro yourself
barblion07 (Dec 19, 2007 9:23:26 PM)
i think she was age 4
sissy1 (Dec 19, 2007 9:23:32 PM)
yes new to this chat
PaRay (Dec 19, 2007 9:23:35 PM)
Hi Sissy
barblion07 (Dec 19, 2007 9:23:38 PM)
hi
shelly (Dec 19, 2007 9:23:38 PM)
Iris- what's wrong with his AFO's- rocking forward
sissy1 (Dec 19, 2007 9:23:39 PM)
hi all
zacsmom (Dec 19, 2007 9:23:40 PM)
hi sissy
shelly (Dec 19, 2007 9:23:46 PM)
hi sissy
zacsmom (Dec 19, 2007 9:24:06 PM)
i think im the youngest here
sissy1 (Dec 19, 2007 9:24:11 PM)
does everyone have md?
shabake (Dec 19, 2007 9:24:12 PM)
well feeling icky right now so I'm going to go reat. Hope you all have a Happy holiday season.
marciamellows (Dec 19, 2007 9:24:20 PM)
Any new people on the chat interested in receiving a chat reminder or our FREE publication called "Reaching Out" which has valuable MMD information in it? PaRay help me out here.
shelly (Dec 19, 2007 9:24:25 PM)
u2 sharon!
bette (Dec 19, 2007 9:24:26 PM)
Welcome sissy. Tell us a little about yourself. Do you have MMD or are you a chare giver? Where do you live
barblion07 (Dec 19, 2007 9:24:26 PM)
ty bye nc
shabake (Dec 19, 2007 9:24:44 PM)
ty
vdoman (Dec 19, 2007 9:24:44 PM)
We are either caregivers or have MMD
shabake (Dec 19, 2007 9:24:47 PM)
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zacsmom (Dec 19, 2007 9:24:58 PM)
yeah what he siad
sissy1 (Dec 19, 2007 9:24:59 PM)
my mom, sisters, two neices and a nephew. mom and oldest sister passed away, other sister not doing great, i have not been tested.
sissy1 (Dec 19, 2007 9:25:04 PM)
in bucks county pa
Fluffy (Dec 19, 2007 9:25:20 PM)
sissy what chat are you ,=mostly on
sissy1 (Dec 19, 2007 9:25:32 PM)
what fluffy?
barblion07 (Dec 19, 2007 9:25:34 PM)
sry for your loss
PaRay (Dec 19, 2007 9:25:35 PM)
Hi neighbor. I am from Lancaster.
bette (Dec 19, 2007 9:25:45 PM)
We all have MMD or someone who we take care of has it.. Barbilion has not be diagnosed yet.
sissy1 (Dec 19, 2007 9:25:51 PM)
this is my first time to MDA chat. I moderate for a glaucoma group.
sissy1 (Dec 19, 2007 9:26:03 PM)
hey neighbor! PaRay!
barblion07 (Dec 19, 2007 9:26:20 PM)
dose your face muscle always seem tighte
iris1 (Dec 19, 2007 9:26:29 PM)
Shelly, yes rocking forward. Welcome tonight to all our new chat members. You will find this chat very helpful.
zacsmom (Dec 19, 2007 9:26:36 PM)
do your family members have mmd
sissy1 (Dec 19, 2007 9:26:51 PM)
me? or anyone? I get a lot of headaches and eyeaches. yes family members have myotonic dystrophy
barblion07 (Dec 19, 2007 9:27:02 PM)
anyone
zacsmom (Dec 19, 2007 9:27:17 PM)
y haven't u been tested
barblion07 (Dec 19, 2007 9:27:31 PM)
i walked the dog and came in my face looked like i was scared it was funny
shelly (Dec 19, 2007 9:27:40 PM)
I have a friend who has trouble getting her meds, but she works, but can't afford insurance. I have researched for her- anyone know any avenues I can look up for her. I feel so bad because she has diabetes,glaucoma amnog her ailments.
sissy1 (Dec 19, 2007 9:27:49 PM)
no tightness for me. well, just a tight feeling around eye ball. not tested. drs at u of p said no objective signs so what diff will it make?
bette (Dec 19, 2007 9:28:17 PM)
I haven't had tightness in my face either.
shelly (Dec 19, 2007 9:28:22 PM)
It's just good to know
PaRay (Dec 19, 2007 9:28:31 PM)
Anyone that wants a email chat reminder email MDAASGchat@aol.com If you want our newsletter Reaching Out, provide your name and mailing address.
barblion07 (Dec 19, 2007 9:28:32 PM)
well it sucks
shelly (Dec 19, 2007 9:28:35 PM)
I've had weakness in my face
zacsmom (Dec 19, 2007 9:28:36 PM)
so its just your eyes
sissy1 (Dec 19, 2007 9:28:44 PM)
barb my sister now has bells palsy, cannot feel her right side of her face, toungue, eye, she is on drops, steroids for a couple more days....her breathing was bad the other weekend
barblion07 (Dec 19, 2007 9:29:05 PM)
wow hope she will do well
barblion07 (Dec 19, 2007 9:29:16 PM)
better
marciamellows (Dec 19, 2007 9:29:17 PM)
How long has she had bells palsy. The good thing is that it is usually temporary.
shelly (Dec 19, 2007 9:29:36 PM)
I wish your sister could see my eye doctor- I almost worship him
sissy1 (Dec 19, 2007 9:30:09 PM)
only recently after she was real tired, not able to even get out of bed, and having difficulty breathing, she sounded like gunk was stuck...the steroids helped but then she got the bells palsy or mabye it is the disease progressing really fast?
sissy1 (Dec 19, 2007 9:30:14 PM)
i have a great eye doc, too!
shelly (Dec 19, 2007 9:30:23 PM)
sissy- what age group are you in- over 35 or younger?
barblion07 (Dec 19, 2007 9:30:35 PM)
all the muscules in my neck and jaw are spasams i guess the muscle feel ke i just worked out for awhile
sissy1 (Dec 19, 2007 9:30:37 PM)
I am plus 40shelly
bette (Dec 19, 2007 9:30:39 PM)
I have weakness in my face too. That was one of the clues the doctor who sent me to a neuro saw.
PaRay (Dec 19, 2007 9:30:52 PM)
Shelly....Try needymeds.com
zacsmom (Dec 19, 2007 9:30:52 PM)
im am the youngest in here
sissy1 (Dec 19, 2007 9:30:57 PM)
my sister is 50. oldest sister passed at 51, mom at 70
shelly (Dec 19, 2007 9:31:00 PM)
I turn 35 in 3 weeks
barblion07 (Dec 19, 2007 9:31:03 PM)
bette is it hard to chew
sissy1 (Dec 19, 2007 9:31:09 PM)
well hb shelly!
barblion07 (Dec 19, 2007 9:31:13 PM)
I hate meat now
sissy1 (Dec 19, 2007 9:31:20 PM)
in advance sheelly that is
juliec (Dec 19, 2007 9:31:32 PM)
(This user has entered Myotonic Chat Group)
zacsmom (Dec 19, 2007 9:31:33 PM)
im only 25
Fluffy (Dec 19, 2007 9:31:45 PM)
why do you hate meat?
sissy1 (Dec 19, 2007 9:31:47 PM)
really barb why? do tell. I have belly pains, recently lost 30 lbs.
barblion07 (Dec 19, 2007 9:31:48 PM)
wow young
shelly (Dec 19, 2007 9:31:49 PM)
thanks Ray- she doesn't take some becuase she can't afford it- I'd help her out, but I have enough meds of my own I pay for
zacsmom (Dec 19, 2007 9:31:49 PM)
i feel young compared to everyone here
barblion07 (Dec 19, 2007 9:32:08 PM)
Its to hard to chew it now
juliec (Dec 19, 2007 9:32:10 PM)
wo here I am at last.... barry is typing for me
barblion07 (Dec 19, 2007 9:32:25 PM)
then swallow it I need a glass of water
sissy1 (Dec 19, 2007 9:32:28 PM)
bar how old r u?
barblion07 (Dec 19, 2007 9:32:37 PM)
38
sissy1 (Dec 19, 2007 9:32:43 PM)
bar where are you?
sissy1 (Dec 19, 2007 9:32:46 PM)
can I ask?
barblion07 (Dec 19, 2007 9:32:47 PM)
ny
vdoman (Dec 19, 2007 9:32:54 PM)
My wife passed away 7 months ago from MMD at 49 and her sis died 10 months earlier at 51 we think she may of had MMD also
bette (Dec 19, 2007 9:32:55 PM)
Yes Barblion. I am using a food proceessor when I don't I the energy to chdw or just can't. It doesn't look so hot but it does the job.
sissy1 (Dec 19, 2007 9:32:58 PM)
ny the big apple! just there the other weekend.
barblion07 (Dec 19, 2007 9:33:10 PM)
very sorry vd
shelly (Dec 19, 2007 9:33:19 PM)
Hi Julie and Barry- love the book- tell Terry too!
sissy1 (Dec 19, 2007 9:33:20 PM)
oh vdoman, I am sorry
zacsmom (Dec 19, 2007 9:33:34 PM)
corey how old r the people that usually go to the support group
Fluffy (Dec 19, 2007 9:33:36 PM)
I have trouble swallowing but not really with chewing
shelly (Dec 19, 2007 9:33:38 PM)
I did not know that vdoman-so sorry
vdoman (Dec 19, 2007 9:33:47 PM)
Thank You
barblion07 (Dec 19, 2007 9:33:49 PM)
mine is both
sissy1 (Dec 19, 2007 9:33:58 PM)
vdo, my sis passed at 51, my other sis is 50 and I am very worried. she is in NC, I am in PA
bette (Dec 19, 2007 9:34:04 PM)
The only meat I eat and that is rarely is pot roast. That is usually well good and soft.
barblion07 (Dec 19, 2007 9:34:13 PM)
yum
barblion07 (Dec 19, 2007 9:34:32 PM)
i was a cheff and loved food
juliec (Dec 19, 2007 9:34:45 PM)
shelly, glad you enjoyed the book
barblion07 (Dec 19, 2007 9:34:52 PM)
now it wears me out to eat so sad
zacsmom (Dec 19, 2007 9:34:56 PM)
i eat steak all the time and i have weakness in hte face
barblion07 (Dec 19, 2007 9:35:08 PM)
wish i could
vdoman (Dec 19, 2007 9:35:15 PM)
Kev and I have to get dinner bye everyone . Hi Barry
juliec (Dec 19, 2007 9:35:20 PM)
barblood.. wish you could cook... we NEED one!
barblion07 (Dec 19, 2007 9:35:20 PM)
i cant do the blender thing
sissy1 (Dec 19, 2007 9:35:21 PM)
by vdo
zacsmom (Dec 19, 2007 9:35:26 PM)
i find its best meidium rare
barblion07 (Dec 19, 2007 9:35:38 PM)
by vdo
zacsmom (Dec 19, 2007 9:35:43 PM)
by corey
shelly (Dec 19, 2007 9:35:51 PM)
barblion- have you worked with a swallowing specialist- usually a speech/language pathologist?
barblion07 (Dec 19, 2007 9:35:59 PM)
yes
vdoman (Dec 19, 2007 9:36:02 PM)
I be in touch with you zac
zacsmom (Dec 19, 2007 9:36:05 PM)
i still haven't
zacsmom (Dec 19, 2007 9:36:13 PM)
ok thanx
shelly (Dec 19, 2007 9:36:15 PM)
what was tgeir assessment?
shelly (Dec 19, 2007 9:36:20 PM)
their
zacsmom (Dec 19, 2007 9:36:20 PM)
by corey
vdoman (Dec 19, 2007 9:36:20 PM)
(This user has left DigiChat)
barblion07 (Dec 19, 2007 9:36:25 PM)
and for some reason i cant eat ground up food
bette (Dec 19, 2007 9:36:25 PM)
Sissy, don't worry, my more was 63 when she died and I am now 60. I plan to be around for at least 10 more years.
barblion07 (Dec 19, 2007 9:36:37 PM)
not sure what that is
barblion07 (Dec 19, 2007 9:36:51 PM)
had swallow study
barblion07 (Dec 19, 2007 9:37:00 PM)
had aspirations
shelly (Dec 19, 2007 9:37:05 PM)
sorry
juliec (Dec 19, 2007 9:37:10 PM)
bette... you are good for more than 10 years... we bet 20 plus
bette (Dec 19, 2007 9:37:33 PM)
I meant to say my mom
juliec (Dec 19, 2007 9:37:39 PM)
what are everyhone's plans for christmas and new year's...
marciamellows (Dec 19, 2007 9:37:39 PM)
Hi julie and barry. Jeff, me and 2 of our daughters are going to Las Vegas on Sunday.
sissy1 (Dec 19, 2007 9:37:45 PM)
well I tink I will be around til 60 or so and maybe I have it but my sister sounds like my mom did and i think it finally caught up with her. she says her legs are shrinking everyday
shelly (Dec 19, 2007 9:37:51 PM)
I plan on being around at least another 35 years or more- God willing
sissy1 (Dec 19, 2007 9:38:06 PM)
Marciamellows good luck in Vegas! Hard 8!
barblion07 (Dec 19, 2007 9:38:07 PM)
staying home
juliec (Dec 19, 2007 9:38:17 PM)
marcia... we knew you would hand in LV... where are you staying there?
zacsmom (Dec 19, 2007 9:38:21 PM)
black jack
barblion07 (Dec 19, 2007 9:38:36 PM)
slots are fun
shelly (Dec 19, 2007 9:38:42 PM)
I have to have faith in our researchers and hope for a cure or treatment that stops progression
marciamellows (Dec 19, 2007 9:38:52 PM)
Julie and Barry, what are you doing for Christmas and New Years. We will be in Las Vegas for Christmas. Generally do not do anything for New Years. Safest at home.
juliec (Dec 19, 2007 9:38:56 PM)
omen shelly
sissy1 (Dec 19, 2007 9:39:07 PM)
slots are one armed bandits, your worse odds. but hey my oldest sister used to love the slots, she would always win. have fun!
bette (Dec 19, 2007 9:39:13 PM)
Julie, Barry thanks. I'll take 20 depending on quality.
zacsmom (Dec 19, 2007 9:39:23 PM)
blak jack has the best
marciamellows (Dec 19, 2007 9:39:27 PM)
We have 3 free nights at the Sahara.
barblion07 (Dec 19, 2007 9:39:32 PM)
nice
marciamellows (Dec 19, 2007 9:39:37 PM)
Video poker machines.
sissy1 (Dec 19, 2007 9:39:38 PM)
craps is fun, in Vegas they will teach you...I tell you bet the Hard 8 in the middle of the table ;)
juliec (Dec 19, 2007 9:39:47 PM)
we are going to a nice place for dinner with friends in Tampa and then going to a movie... then coming home to see the ball come down.
shelly (Dec 19, 2007 9:40:07 PM)
We saw Penn and Teller(magicians-illusionist) in Vegas a coule of years ago-it was great!
marciamellows (Dec 19, 2007 9:40:08 PM)
Thats the safest. Be home before midnight.
marciamellows (Dec 19, 2007 9:40:19 PM)
julie, what movie are you going to see?
sissy1 (Dec 19, 2007 9:40:22 PM)
PaRay doyou have myotonic dystrophy?
shelly (Dec 19, 2007 9:40:30 PM)
Saw Celine Dion, too- but she isn't doing Vegas anymore
juliec (Dec 19, 2007 9:40:34 PM)
marcia.. how did you swing 3 free nights at peak season Must me you know someone or have connections...
PaRay (Dec 19, 2007 9:40:49 PM)
Sissy...I am the caregiver for my wife.
zacsmom (Dec 19, 2007 9:40:59 PM)
all right taking off see you all next wensday
zacsmom (Dec 19, 2007 9:41:05 PM)
goodnight
zacsmom (Dec 19, 2007 9:41:07 PM)
(This user has left DigiChat)
barblion07 (Dec 19, 2007 9:41:08 PM)
by nchat
bette (Dec 19, 2007 9:41:14 PM)
Julie, is that you or Barry tonight?
shelly (Dec 19, 2007 9:41:14 PM)
I am staying in town for the break- 2 weeks! A benefit of being a teacher!
shelly (Dec 19, 2007 9:41:37 PM)
I work 5 weeks in the summer, too.
iris1 (Dec 19, 2007 9:41:39 PM)
We do not go out on New Year's Eve. In fact we do not go out at night anymore. To much of a chance for my husband to fall after dark, not being able to see good.
juliec (Dec 19, 2007 9:41:43 PM)
bette... barry is typing and I am telling him what to type for me.... my typing is not good.
sissy1 (Dec 19, 2007 9:41:50 PM)
Oh I see PaRay. That is tough. My oldest sis had the BEST husband, on the other hand, my other sister is not so fortunate, he is in denail
shelly (Dec 19, 2007 9:42:06 PM)
Irs- you can have a tost at midnight-that's what we do.
shelly (Dec 19, 2007 9:42:14 PM)
toast
shelly (Dec 19, 2007 9:42:19 PM)
and a kiss
juliec (Dec 19, 2007 9:42:26 PM)
also barry's hard drive on his computer died.... we had a funeral last week.
barblion07 (Dec 19, 2007 9:42:27 PM)
my hubby is to
shelly (Dec 19, 2007 9:43:06 PM)
Where is Robyn?
bette (Dec 19, 2007 9:43:13 PM)
We'll either stay home or do some volunteering on Christmas. New Years Eve we stay home and on New Years day we watch the Rose Parade and football games all day.
barblion07 (Dec 19, 2007 9:43:39 PM)
do any of you have the muscle twitches
juliec (Dec 19, 2007 9:43:49 PM)
bette... love to see you on top of one of those floats in the Rose Parade! Why not?
shelly (Dec 19, 2007 9:43:59 PM)
I have had them under my eye- but a long time ago
sissy1 (Dec 19, 2007 9:44:04 PM)
I do, in my legs. at nite my feet cramp and I can feel like a pulling up the side of my lower leg.
barblion07 (Dec 19, 2007 9:44:21 PM)
oUCH I hate the cramps
sissy1 (Dec 19, 2007 9:44:29 PM)
what is everyones take on should i be tested or not?
marciamellows (Dec 19, 2007 9:44:54 PM)
Of course you should be tested. Why wouldn't you be? Don't you want to know?
bette (Dec 19, 2007 9:44:56 PM)
I haven't been invited. Maybe if MDA had a float I could try out.. We would at least try to help in the building of it.
barblion07 (Dec 19, 2007 9:44:57 PM)
well it will stop you from getting life ins so get it first
PaRay (Dec 19, 2007 9:45:31 PM)
Sissy...Be careful with your health insurance.
shelly (Dec 19, 2007 9:45:32 PM)
I think it's good to know what you're dealing with or going to possibly deal with. I wanted to be absolutely sure because I wanted children. I don't have any children.
barblion07 (Dec 19, 2007 9:45:40 PM)
just the mention on my records stoped me from getting it
juliec (Dec 19, 2007 9:45:42 PM)
for cramping, use a vibrator on the muscle for quick relief... for longer relief, do stretching, preferably with a therapist... if not, pick up stretching exercises and try them.
bette (Dec 19, 2007 9:45:59 PM)
I would be tested just so I would know what the problem is.
lisaw (Dec 19, 2007 9:46:04 PM)
When I was diagnosed DNA testing was not abailable. He used an EMG and compared my facial stucture to my mothers. They could at least do an EMG on you.
shelly (Dec 19, 2007 9:46:12 PM)
my insurance has been great-they paid for my afos
sissy1 (Dec 19, 2007 9:46:12 PM)
well marciamellows i went to univ of penn and the expert siad why would I want to know? what difference will it make? my partner wants me tested but to be honest, I don't want to know for sure. I think i have some form of it, mild.
juliec (Dec 19, 2007 9:46:23 PM)
I have a therapist who works with me twice a week on stetching... arms, legs, neck, you name it.
shelly (Dec 19, 2007 9:46:24 PM)
I had an EMG too..
sissy1 (Dec 19, 2007 9:46:30 PM)
oh and the doc said all my insruance and everything best be in place
barblion07 (Dec 19, 2007 9:46:53 PM)
i didn'tget the chance
sissy1 (Dec 19, 2007 9:47:04 PM)
lisaw my sis ws diagnosed with muscle bx and emg
barblion07 (Dec 19, 2007 9:47:14 PM)
i've had at least 3 emgs all abnormal
sissy1 (Dec 19, 2007 9:47:37 PM)
my nephew with the gene test. he is very depressed
shelly (Dec 19, 2007 9:47:40 PM)
I had EMG and DNA
sissy1 (Dec 19, 2007 9:47:50 PM)
he has a pituatary tumor and is always cold, too
barblion07 (Dec 19, 2007 9:48:01 PM)
i;m sry
shelly (Dec 19, 2007 9:48:07 PM)
is it affecting his growth?
PaRay (Dec 19, 2007 9:48:08 PM)
I had a TLC!!!
Fluffy (Dec 19, 2007 9:48:13 PM)
getting tired talk to you all next week.
barblion07 (Dec 19, 2007 9:48:16 PM)
whats that
barblion07 (Dec 19, 2007 9:48:21 PM)
by
sissy1 (Dec 19, 2007 9:48:36 PM)
he is a little guy, skinny, not too tall but not too short but thin, very thin. he is almost 30
barblion07 (Dec 19, 2007 9:49:01 PM)
poor thing
shelly (Dec 19, 2007 9:49:01 PM)
My bro was so thin and is finally putting on weight
shelly (Dec 19, 2007 9:49:12 PM)
he looks better
Fluffy (Dec 19, 2007 9:49:16 PM)
(This user has left DigiChat)
barblion07 (Dec 19, 2007 9:49:16 PM)
i was thin till i had kids
sissy1 (Dec 19, 2007 9:49:27 PM)
i was a skinny kid, long fingers and little
barblion07 (Dec 19, 2007 9:49:31 PM)
now forget it never thin again
shelly (Dec 19, 2007 9:49:33 PM)
I was thin until I went on Lithium
sissy1 (Dec 19, 2007 9:49:37 PM)
after loosing 30 lbs this year I am thin again
juliec (Dec 19, 2007 9:49:42 PM)
sissy,,,, knowing if you have MMD also means knowing if you do not hav MMD... and you can proceed further to evaluate your medical probllems... being in the dark won't help... what symptoms are you having?
shelly (Dec 19, 2007 9:50:20 PM)
I plan on losing some weight when we get our treadmill when we get our tax return
barblion07 (Dec 19, 2007 9:50:32 PM)
i need to loss
juliec (Dec 19, 2007 9:50:32 PM)
sissy... did you lose 30 pounds intentionally? That is a lot ot weight.
barblion07 (Dec 19, 2007 9:50:48 PM)
40 pounds
sissy1 (Dec 19, 2007 9:50:48 PM)
when my mom passed I raced to U of P, then after my sister passed, the same thing. Each time, I have no objective signs, so don't get tested.
shelly (Dec 19, 2007 9:51:12 PM)
I just want my BMI to be about 25
sissy1 (Dec 19, 2007 9:51:12 PM)
the wt loss was not on purpose, belly problems, turned out to be my gall bladder but I do have irriteble bowel now
barblion07 (Dec 19, 2007 9:51:33 PM)
mine is 26
barblion07 (Dec 19, 2007 9:51:50 PM)
needs to be 22
bette (Dec 19, 2007 9:51:52 PM)
Sissy, did they do autopsis on your mom and sis? That might give you some info.
sissy1 (Dec 19, 2007 9:52:03 PM)
misdiagnosed as basically crazy women in her 40s , ha ha...but really i presented with not typical gall bladder and it took two months to figure it out
sissy1 (Dec 19, 2007 9:52:13 PM)
no bette they did not
juliec (Dec 19, 2007 9:52:15 PM)
sissy... you may have other medical problems and not MMD.... ruling it out would also give you cause to look further.
shelly (Dec 19, 2007 9:52:17 PM)
I used to be in such good shape! I miss my kickboxing at the dojo! Can't kick with the AFos
bette (Dec 19, 2007 9:52:28 PM)
What is BMI?
barblion07 (Dec 19, 2007 9:52:42 PM)
shelly i miss hikking
sissy1 (Dec 19, 2007 9:52:44 PM)
my mom had sepsis, infection...chronic bronchial pneomonia...sister, I tink it was her heart and lungs not strong enough
barblion07 (Dec 19, 2007 9:52:55 PM)
body mass index
juliec (Dec 19, 2007 9:52:55 PM)
sissy.. do you have muscle weakness either in your extremities or large muscles?
sissy1 (Dec 19, 2007 9:53:03 PM)
body maxx index
shelly (Dec 19, 2007 9:53:24 PM)
Body Mass Index- a formula with height and weight and it gives you an number. For me I should weigh anywhere between 125 and 150 lbs
barblion07 (Dec 19, 2007 9:53:32 PM)
me to
barblion07 (Dec 19, 2007 9:53:33 PM)
lol
juliec (Dec 19, 2007 9:53:40 PM)
what is wrong with your gall bladder, sissy?
sissy1 (Dec 19, 2007 9:53:46 PM)
julie i don't think so. i have aches and cramps sometimes in my feet. no weakness on neuro exam
bette (Dec 19, 2007 9:53:53 PM)
Oh. I had a 26 about 5 years ago and I haven't had it checked latly.
sissy1 (Dec 19, 2007 9:54:13 PM)
i had sludge in it and then sludge after they took it out, it was a mess, in the hospital three times.
barblion07 (Dec 19, 2007 9:54:33 PM)
eww sry
bette (Dec 19, 2007 9:54:39 PM)
Shellu, how tall are you?
juliec (Dec 19, 2007 9:54:48 PM)
aches and cramps sometimes on your feet could be symtomatic of other problems... worth having a full medical workup.
barblion07 (Dec 19, 2007 9:54:57 PM)
I have pancreactic problems
shelly (Dec 19, 2007 9:54:58 PM)
sissy- you sure have been through a lot. How are you coping?
shelly (Dec 19, 2007 9:55:23 PM)
I am 5'5' bette
shelly (Dec 19, 2007 9:55:37 PM)
5'7 with afos
lisaw (Dec 19, 2007 9:55:38 PM)
I'm going to say goodnight.
barblion07 (Dec 19, 2007 9:55:41 PM)
lol
barblion07 (Dec 19, 2007 9:55:47 PM)
gn
shelly (Dec 19, 2007 9:55:52 PM)
night!
lisaw (Dec 19, 2007 9:56:02 PM)
(This user has left DigiChat)
bette (Dec 19, 2007 9:56:23 PM)
I'm about 4'll". I guess I should be between 100 and 120? If that is it, I am all right.
juliec (Dec 19, 2007 9:56:25 PM)
sissy... was anyone in your family diagnosed with MMD? remember, this is a heriditary disease.
sissy1 (Dec 19, 2007 9:56:26 PM)
Shelly ok now... but the othe rweek when dede sounded bad...I was a mess...I might travel down to see her
barblion07 (Dec 19, 2007 9:56:30 PM)
they made my afos so big i cant wear them
sissy1 (Dec 19, 2007 9:56:48 PM)
yes, julie, my two sisters were diagnosed, mom not but she had it, nephew diagnosed, neices diagnosed
bette (Dec 19, 2007 9:56:55 PM)
barb, take then back and have then adjusted.
sissy1 (Dec 19, 2007 9:57:12 PM)
my nephew also had has his heart shocked two times, the last time on the sisters memoraial day
juliec (Dec 19, 2007 9:57:12 PM)
bette... barry talking... you are a four ft elevan dynamo...
barblion07 (Dec 19, 2007 9:57:21 PM)
i have to wear a mans size 12 shoe over them
PaRay (Dec 19, 2007 9:57:28 PM)
I am 5' 8" Should be 7' 4"
sissy1 (Dec 19, 2007 9:57:32 PM)
Barb over braces?
shelly (Dec 19, 2007 9:57:43 PM)
I have relied on my faith in GOD and pray to him for strength-emotional.
bette (Dec 19, 2007 9:57:45 PM)
TY
barblion07 (Dec 19, 2007 9:57:51 PM)
my afos
juliec (Dec 19, 2007 9:58:03 PM)
ok sissy... I see why you think you might have MMD.... still worth testing for it... why stay in the dark? that cannot help matters.
shelly (Dec 19, 2007 9:58:07 PM)
barb- look at Trulife.com- I have those braces- the Matrix
barblion07 (Dec 19, 2007 9:58:08 PM)
thats why i dont wear them cant lift the heavy thing
shelly (Dec 19, 2007 9:58:17 PM)
mine are great
sissy1 (Dec 19, 2007 9:58:28 PM)
juile the experts say why and that if I do I might have trouble getting insurance
sissy1 (Dec 19, 2007 9:58:39 PM)
and would it play tricks on my mind?
shelly (Dec 19, 2007 9:58:43 PM)
Ray- you are a trip!
sissy1 (Dec 19, 2007 9:59:16 PM)
barb my sister wears them but is now using wheelchair and walker. she refuses to rest and now her body is making her rest
juliec (Dec 19, 2007 9:59:19 PM)
sissy... insurance is a hassle, but you can privately pay for the testing and use a fictitious name... that is what I did.
marciamellows (Dec 19, 2007 9:59:40 PM)
That is what my daughter did also.
barblion07 (Dec 19, 2007 9:59:43 PM)
well dr wanted a walker told me today I said no way
shelly (Dec 19, 2007 9:59:51 PM)
barb-my afos are made of carbon fiber-graphite and they are soooo light
bette (Dec 19, 2007 9:59:56 PM)
Sissy, I don't know about trips on your mind. My mind works best when it knows what is it up against.
sissy1 (Dec 19, 2007 9:59:56 PM)
oh juile, that is interesting.
juliec (Dec 19, 2007 10:00:16 PM)
sissy... I bet U of P would work with you, if you wanted to protect your identity and could not afford the testing...
shelly (Dec 19, 2007 10:00:17 PM)
I went up to a size 8 from a size 7 and now I have to have wide shoes
sissy1 (Dec 19, 2007 10:00:25 PM)
i guess i dont want to know for sure...all my friends suspect and ask my partner...we tell it like it is 50-50 chance
barblion07 (Dec 19, 2007 10:00:26 PM)
cool need a new pair
sissy1 (Dec 19, 2007 10:00:52 PM)
the doc said if I want to he will order it.
shelly (Dec 19, 2007 10:00:58 PM)
seriously check them out -they are great
juliec (Dec 19, 2007 10:01:15 PM)
if one of your parents have the disease, sissy, the chances are 50-50 you have it or not... my son has it... my daughter does not!
barblion07 (Dec 19, 2007 10:01:15 PM)
i will
sissy1 (Dec 19, 2007 10:01:38 PM)
the mda clinic near my sister closed, she will have to travel like three hours assuming her husband will take her
barblion07 (Dec 19, 2007 10:01:53 PM)
my ankle still hasn't healed from my last fall
sissy1 (Dec 19, 2007 10:01:55 PM)
how is your son julie
bette (Dec 19, 2007 10:02:03 PM)
Where does your sister live?
sissy1 (Dec 19, 2007 10:02:12 PM)
babs, sorry to hear that. my sisters fall/fell alot
sissy1 (Dec 19, 2007 10:02:17 PM)
she is NC, I am in PA
barblion07 (Dec 19, 2007 10:02:22 PM)
i hate falling
sissy1 (Dec 19, 2007 10:02:32 PM)
she went to Wilmington NC
juliec (Dec 19, 2007 10:02:37 PM)
sissy... you are right about being careful to protect your identify... insurance carriers will turn you down if they know you have MMD. Sooooo use a fictitious name and pay for it.
PaRay (Dec 19, 2007 10:02:42 PM)
Sissy...You may want to try Hershey. Dr Simmons
barblion07 (Dec 19, 2007 10:02:43 PM)
the stairs now scare me
juliec (Dec 19, 2007 10:03:05 PM)
marcia... any advise for sissy on the insurance game?
sissy1 (Dec 19, 2007 10:03:07 PM)
Hershey chocolates, yes, that will help! :)
shelly (Dec 19, 2007 10:03:09 PM)
I don't like steps at all
marciamellows (Dec 19, 2007 10:03:42 PM)
I agree with you. Pay for it (if you can afford it) and do it under a fictitious name.
barblion07 (Dec 19, 2007 10:03:47 PM)
i have to go up and down side ways
bette (Dec 19, 2007 10:03:51 PM)
I don't mind stelps as long as they have rails. it's curbs I'm afraid of.
sissy1 (Dec 19, 2007 10:03:53 PM)
PaRay for now I am just going to take it a day at time mwith my sister and not worry about me nknowing or not knowing
shelly (Dec 19, 2007 10:04:07 PM)
my ins. took preesisting conditions- I didn't know I had MMD when I got my ins- and they know now and there has not been a problem
barblion07 (Dec 19, 2007 10:04:14 PM)
lol i always fall up curves
juliec (Dec 19, 2007 10:04:37 PM)
sissy... marcia is our resident guru on MMD when she is not in Las Vegas gambling away her money.
shelly (Dec 19, 2007 10:04:38 PM)
sorry about my spelling
sissy1 (Dec 19, 2007 10:04:41 PM)
barb you seem to have a great spirit
sissy1 (Dec 19, 2007 10:04:48 PM)
typos dont count in chats!
shelly (Dec 19, 2007 10:04:56 PM)
thx!
sissy1 (Dec 19, 2007 10:04:56 PM)
i moderate a glucoma chat on wed nites
barblion07 (Dec 19, 2007 10:05:01 PM)
i have to i have 3 kids
sissy1 (Dec 19, 2007 10:05:12 PM)
true babs true!
marciamellows (Dec 19, 2007 10:05:17 PM)
julie and barry, I visited Alice and Ed today. They are doing well.
sissy1 (Dec 19, 2007 10:05:22 PM)
barb do they have it?
barblion07 (Dec 19, 2007 10:05:32 PM)
and i think my youngest have it
shelly (Dec 19, 2007 10:05:44 PM)
I've got to go get ready for bed- 2 more days 'til break!!!! Night y'all!
juliec (Dec 19, 2007 10:05:45 PM)
marcia...we are very glad to here that... how is Jeff feeling?
marciamellows (Dec 19, 2007 10:05:55 PM)
Jeff is also doing well.
barblion07 (Dec 19, 2007 10:05:56 PM)
i think my 14 year old son and 16 daughter
barblion07 (Dec 19, 2007 10:06:06 PM)
gn
juliec (Dec 19, 2007 10:06:20 PM)
glad to hear Jeff is doing well ... he is going to Vegas with you?
shelly (Dec 19, 2007 10:06:24 PM)
are we chatting next week?
sissy1 (Dec 19, 2007 10:06:29 PM)
nite shells
sissy1 (Dec 19, 2007 10:06:35 PM)
i will try to be here
barblion07 (Dec 19, 2007 10:06:39 PM)
yes
marciamellows (Dec 19, 2007 10:06:45 PM)
julie and barry, today is our 42nd anniversary and next week is Bette and marks 37th anniversary.
bette (Dec 19, 2007 10:06:49 PM)
As far as O lmpw/
sissy1 (Dec 19, 2007 10:06:49 PM)
just lost a job well not lost, chose not to accept terms
shelly (Dec 19, 2007 10:06:57 PM)
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sissy1 (Dec 19, 2007 10:07:00 PM)
nite!
bette (Dec 19, 2007 10:07:01 PM)
AS far as I know
sissy1 (Dec 19, 2007 10:07:08 PM)
ho ho ho everyone
sissy1 (Dec 19, 2007 10:07:10 PM)
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juliec (Dec 19, 2007 10:07:25 PM)
WOW... happy, happy anniversaries!!!!! Many more.
barblion07 (Dec 19, 2007 10:07:31 PM)
happy anvj
bette (Dec 19, 2007 10:07:35 PM)
TY
juliec (Dec 19, 2007 10:08:04 PM)
barry and I have been married 40 years... and the beat goes on.
barblion07 (Dec 19, 2007 10:08:11 PM)
cool
bette (Dec 19, 2007 10:08:17 PM)
And on and on....
barblion07 (Dec 19, 2007 10:08:21 PM)
been married 6 mnths
barblion07 (Dec 19, 2007 10:08:32 PM)
together 4 years
bette (Dec 19, 2007 10:08:46 PM)
Barb, congrats. Hope you have a long and happy marriage.
marciamellows (Dec 19, 2007 10:08:51 PM)
Jeff, me, my oldest daughter and my youngest daughters are going to Las Vegas. My middle daughter is in Ohio with her children spending christmas with her husband's family.
barblion07 (Dec 19, 2007 10:08:51 PM)
gn all ty
barblion07 (Dec 19, 2007 10:08:57 PM)
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juliec (Dec 19, 2007 10:09:03 PM)
wow, newly weds...stay happy, and enjoy...
juliec (Dec 19, 2007 10:09:54 PM)
we wish you all a happy holiiday and happy new year... from your FL friends... barry and julie.
juliec (Dec 19, 2007 10:10:00 PM)
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marciamellows (Dec 19, 2007 10:10:16 PM)
I do not know if I will be on the chat next Wednesday or not. It depends on what time we get home.
bette (Dec 19, 2007 10:10:29 PM)
I echo what Julie said.
marciamellows (Dec 19, 2007 10:10:46 PM)
Ditto
bette (Dec 19, 2007 10:11:05 PM)
Marcia just have a really good time. The rest of us will hold down the fort.
marciamellows (Dec 19, 2007 10:11:15 PM)
ty bette
bette (Dec 19, 2007 10:11:29 PM)
Make money for MMD
marciamellows (Dec 19, 2007 10:11:58 PM)
Well, I think that I am going to log off now. Everyone have a happy, healthy and wonderful week.
marciamellows (Dec 19, 2007 10:12:21 PM)
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bette (Dec 19, 2007 10:12:42 PM)
I need to go potty and try to get my bowels to move. See you next week.
bette (Dec 19, 2007 10:12:48 PM)
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PaRay (Dec 19, 2007 10:13:19 PM)
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iris1 (Dec 19, 2007 10:13:37 PM)
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