Myotonic Chat Group

sweetheaven (Nov 11, 2009 6:59:06 PM)
(This user has moved to Living with ALS)

PaRay (Nov 11, 2009 7:42:20 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 7:44:00 PM)
(This user has entered Myotonic Chat Group)

PaRay (Nov 11, 2009 7:44:13 PM)
Hi Paper

paper (Nov 11, 2009 7:44:41 PM)
hi pa

paper (Nov 11, 2009 7:45:01 PM)
how are u

iris1 (Nov 11, 2009 7:45:06 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 7:45:11 PM)
hi iris

PaRay (Nov 11, 2009 7:45:18 PM)
Doing fine. Hi about you.

paper (Nov 11, 2009 7:45:23 PM)
ok here

PaRay (Nov 11, 2009 7:45:24 PM)
Hey Iris

iris1 (Nov 11, 2009 7:45:34 PM)
PaRay,

iris1 (Nov 11, 2009 7:45:43 PM)
PaRay,

PaRay (Nov 11, 2009 7:45:48 PM)
Getting any rain Iris?

iris1 (Nov 11, 2009 7:46:55 PM)
None here, but I had to drive in it for several hours yesterday on our way back to Louisiana, from my home in Georgia. My husband went with me, it took us 8 hours each way.

paper (Nov 11, 2009 7:47:22 PM)
i made some kick butt chocolate rice cripy treats and peanutbutter butterscotch ones too

PaRay (Nov 11, 2009 7:47:26 PM)
Long ride. What part of GA?

PaRay (Nov 11, 2009 7:47:41 PM)
I forgot!!!

gorgess25 (Nov 11, 2009 7:47:52 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 7:48:02 PM)
hi gorgess

PaRay (Nov 11, 2009 7:48:08 PM)
Hi Gorgess

iris1 (Nov 11, 2009 7:48:12 PM)
Canton, Ga. about 50 miles North of Atlanta off of 575 which is off 75

gorgess25 (Nov 11, 2009 7:48:15 PM)
hello

iris1 (Nov 11, 2009 7:49:08 PM)
gorgess25 and Paper would you please tell me a little about yourselves. I have not met you before. I am the Caregiver for my husband.

paper (Nov 11, 2009 7:49:41 PM)
i am 35 and me and my kids and dad all have central core md

Wes (Nov 11, 2009 7:49:58 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 7:50:03 PM)
hey wes

Wes (Nov 11, 2009 7:50:04 PM)
Hi all

PaRay (Nov 11, 2009 7:50:10 PM)
Hely Wes

Wes (Nov 11, 2009 7:50:32 PM)
How is everyone tonight?

PaRay (Nov 11, 2009 7:50:43 PM)
Good here.

gorgess25 (Nov 11, 2009 7:50:56 PM)
I have myotonic dystrophy with a repeat of 646 I am 28yrs old I am currently pregnant with my little girl who also inheriated my gene and she has 1100 repeats. It has been a while since i have been on the chat

Wes (Nov 11, 2009 7:51:26 PM)
Yay I'm now not the absolute youngest

Wes (Nov 11, 2009 7:51:40 PM)
I'm also 28

paper (Nov 11, 2009 7:51:41 PM)
lol wes

PaRay (Nov 11, 2009 7:51:47 PM)
You get the prize.

Wes (Nov 11, 2009 7:52:39 PM)
I been working more on my novel. It kinda changed genres though.

gorgess25 (Nov 11, 2009 7:52:53 PM)
wes i might have talked with u before last time i was on the chat i think ur my friend on myspace

Wes (Nov 11, 2009 7:53:03 PM)
Yeah. I think so

matt-p (Nov 11, 2009 7:53:26 PM)
(This user has entered Myotonic Chat Group)

Wes (Nov 11, 2009 7:53:30 PM)
HI matt

PaRay (Nov 11, 2009 7:53:36 PM)
Hey Matt

paper (Nov 11, 2009 7:53:36 PM)
hey matty

paper (Nov 11, 2009 7:53:47 PM)
brb

matt-p (Nov 11, 2009 7:53:48 PM)
ey allll

matt-p (Nov 11, 2009 7:54:09 PM)
what everybody doin

iris1 (Nov 11, 2009 7:54:10 PM)
"Happy Caregivers Month" to us Caregivers, since the month of November is Caregivers Month.

Wes (Nov 11, 2009 7:54:34 PM)
Just chillin' and taking a break from writing.

matt-p (Nov 11, 2009 7:54:40 PM)
hi iris

matt-p (Nov 11, 2009 7:54:53 PM)
dont think we have met

iris1 (Nov 11, 2009 7:56:20 PM)
Matt-P, I am the Caregiver for my husband who is 66 and I am 55.

iris1 (Nov 11, 2009 7:56:38 PM)
We live in South Louisiana.

matt-p (Nov 11, 2009 7:57:15 PM)
aawww

matt-p (Nov 11, 2009 7:57:28 PM)
hope he is well as he can be

matt-p (Nov 11, 2009 7:58:22 PM)
i am matt from indoiana with sci ,parkinsons

paper (Nov 11, 2009 7:58:29 PM)
ok bk

matt-p (Nov 11, 2009 7:58:43 PM)
hey paper

paper (Nov 11, 2009 7:58:48 PM)
hi

Wes (Nov 11, 2009 7:58:50 PM)
Ah I'm Wes from AZ 28/ MMD

matt-p (Nov 11, 2009 7:59:01 PM)
how is everybody there

Wes (Nov 11, 2009 7:59:02 PM)
WB paper

paper (Nov 11, 2009 7:59:11 PM)
ty

matt-p (Nov 11, 2009 8:00:30 PM)
paper how is everybody

paper (Nov 11, 2009 8:00:43 PM)
we are ok

matt-p (Nov 11, 2009 8:00:50 PM)
good

paper (Nov 11, 2009 8:00:50 PM)
how is broke foot

paper (Nov 11, 2009 8:01:01 PM)
your

matt-p (Nov 11, 2009 8:01:34 PM)
its doing ok when it rains it poors found out i have a sever uti now to

paper (Nov 11, 2009 8:01:44 PM)
gesh

matt-p (Nov 11, 2009 8:02:07 PM)
i dont know what they are going to do for that

matt-p (Nov 11, 2009 8:02:20 PM)
i am on meds

paper (Nov 11, 2009 8:02:21 PM)
antibotics

paper (Nov 11, 2009 8:02:34 PM)
thats about all you can do

paper (Nov 11, 2009 8:02:44 PM)
cranberry juice

matt-p (Nov 11, 2009 8:03:13 PM)
i been drinking it to

paper (Nov 11, 2009 8:03:18 PM)
good

beth (Nov 11, 2009 8:03:34 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 8:03:40 PM)
hi beth\

PaRay (Nov 11, 2009 8:03:45 PM)
Hi Beth

iris1 (Nov 11, 2009 8:03:49 PM)
Good Evening everyone. Have a good week

iris1 (Nov 11, 2009 8:03:52 PM)
(This user has left DigiChat)

matt-p (Nov 11, 2009 8:04:01 PM)
wish they would do something that would let me not get them

beth (Nov 11, 2009 8:04:02 PM)
hi everybody

paper (Nov 11, 2009 8:04:05 PM)
she didnt stay long

Wes (Nov 11, 2009 8:04:17 PM)
Hi Beth

paper (Nov 11, 2009 8:04:18 PM)
impossible matty

matt-p (Nov 11, 2009 8:05:05 PM)
there has to be something some kind of deversion

beth (Nov 11, 2009 8:05:36 PM)
what's going on

paper (Nov 11, 2009 8:05:40 PM)
you dont want a urostomy you will have more uti's with that

matt-p (Nov 11, 2009 8:05:56 PM)
really

matt-p (Nov 11, 2009 8:06:07 PM)
hey beth

paper (Nov 11, 2009 8:06:14 PM)
yep boss had one and he had a uti every 3 weeks

Wes (Nov 11, 2009 8:06:15 PM)
Not much Beth

matt-p (Nov 11, 2009 8:06:25 PM)
wow

beth (Nov 11, 2009 8:06:30 PM)
not much here either

matt-p (Nov 11, 2009 8:06:41 PM)
think i will stay this way then

paper (Nov 11, 2009 8:06:51 PM)
yep better off

paper (Nov 11, 2009 8:07:24 PM)
make sure they are all useing gloves that will cut down the uti's

sweetheaven (Nov 11, 2009 8:07:32 PM)
(This user has entered Myotonic Chat Group)

sweetheaven (Nov 11, 2009 8:07:37 PM)
hello everyone

paper (Nov 11, 2009 8:07:37 PM)
hey sweet

matt-p (Nov 11, 2009 8:07:38 PM)
i am going to goto p o y chat

Bette (Nov 11, 2009 8:07:40 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 8:07:50 PM)
k matt

sweetheaven (Nov 11, 2009 8:07:53 PM)
hey paper

beth (Nov 11, 2009 8:07:54 PM)
i have a tosus cruth on my glasses and have to go back one more time to get it finfished

matt-p (Nov 11, 2009 8:07:55 PM)
(This user has moved to Parents of Young Adults with DMD)

gypsy (Nov 11, 2009 8:07:59 PM)
(This user has entered Myotonic Chat Group)

sweetheaven (Nov 11, 2009 8:07:59 PM)
How are you doing Paper

Wes (Nov 11, 2009 8:08:22 PM)
Hi Gypsy

beth (Nov 11, 2009 8:08:27 PM)
a tosis cruth

PaRay (Nov 11, 2009 8:08:31 PM)
Hey Gypsy.

paper (Nov 11, 2009 8:08:33 PM)
ok didnt have the test today they screwed up it wont be till friday this week

Wes (Nov 11, 2009 8:08:35 PM)
HI Sweet

sweetheaven (Nov 11, 2009 8:08:36 PM)
Hello there Gypsy

gypsy (Nov 11, 2009 8:08:38 PM)
hi all

sweetheaven (Nov 11, 2009 8:08:50 PM)
o ok paper

beth (Nov 11, 2009 8:08:56 PM)
hi gypsy

sweetheaven (Nov 11, 2009 8:09:02 PM)
hi beth

beth (Nov 11, 2009 8:09:10 PM)
hi sweet

gorgess25 (Nov 11, 2009 8:09:15 PM)
(This user has left DigiChat)

sweetheaven (Nov 11, 2009 8:09:27 PM)
how is everyone

beth (Nov 11, 2009 8:09:38 PM)
i'm ok

Bette (Nov 11, 2009 8:09:49 PM)
Bette will be with you shortly. She has glassses equipped with Ptosis crutches too.

gorgess25 (Nov 11, 2009 8:09:51 PM)
(This user has entered Myotonic Chat Group)

sweetheaven (Nov 11, 2009 8:09:56 PM)
i am good too just have a head ache

sweetheaven (Nov 11, 2009 8:10:08 PM)
o ok

beth (Nov 11, 2009 8:10:12 PM)
i had a birthday last sat

sweetheaven (Nov 11, 2009 8:10:31 PM)
Gypsy you there

Bette (Nov 11, 2009 8:10:35 PM)
Happy Birthday, Betg.

sweetheaven (Nov 11, 2009 8:10:40 PM)
(This user has entered Myotonic Chat Group)

sweetheaven (Nov 11, 2009 8:10:40 PM)
(This user has moved to Myotonic Chat Group)

sweetheaven (Nov 11, 2009 8:10:42 PM)
(This user has entered Myotonic Chat Group)

sweetheaven (Nov 11, 2009 8:10:42 PM)
(This user has moved to Myotonic Chat Group)

beth (Nov 11, 2009 8:10:53 PM)
hi bette

sweetheaven (Nov 11, 2009 8:10:59 PM)
Happy B-day beth

beth (Nov 11, 2009 8:11:08 PM)
thankyou

Wes (Nov 11, 2009 8:11:19 PM)
Happy Birthday to you!

beth (Nov 11, 2009 8:11:34 PM)
i turned 47

sweetheaven (Nov 11, 2009 8:11:45 PM)
(This user has moved to Myotonic Chat Group)

Bette (Nov 11, 2009 8:12:08 PM)
Ah yes, I remember 47 well.

gypsy (Nov 11, 2009 8:12:20 PM)
yes sweet ?

beth (Nov 11, 2009 8:12:32 PM)
i go back to the ENT on friday

sweetheaven (Nov 11, 2009 8:12:49 PM)
oh my god how are you I have not been on in a few years i was hopping I would see people i knew

beth (Nov 11, 2009 8:13:06 PM)
he said i had some hearing loss in my left ear

sweetheaven (Nov 11, 2009 8:13:21 PM)
i am 35 total hearing lost

gypsy (Nov 11, 2009 8:13:39 PM)
struggling sweet how about you ?

sweetheaven (Nov 11, 2009 8:13:57 PM)
I am getting worse

beth (Nov 11, 2009 8:13:58 PM)
i had an MRI done tah i will take over there with me

gypsy (Nov 11, 2009 8:13:59 PM)
hi gorgess

sweetheaven (Nov 11, 2009 8:14:03 PM)
more illness now

gypsy (Nov 11, 2009 8:14:12 PM)
sorry to hear that sweet

sweetheaven (Nov 11, 2009 8:14:21 PM)
how you been

beth (Nov 11, 2009 8:15:03 PM)
ray you are quite tonight

PaRay (Nov 11, 2009 8:15:20 PM)
Taking it all in!!!!!

gypsy (Nov 11, 2009 8:15:20 PM)
i guess i am doing pretty well but if just so hard now i was hoping that good peolpe in chat might be able to show me ways to cope

sweetheaven (Nov 11, 2009 8:15:33 PM)
gypsy does pooh-bear still come into the chat and wings2rise

sweetheaven (Nov 11, 2009 8:15:42 PM)
I am here gyspy

paper (Nov 11, 2009 8:15:56 PM)
yes sweet they do

gypsy (Nov 11, 2009 8:16:08 PM)
i thnk pooh still has her postivie thinking chat sweet

beth (Nov 11, 2009 8:16:23 PM)
i am here for you to gyspy

gypsy (Nov 11, 2009 8:16:36 PM)
and beck is at md support and fshd

sweetheaven (Nov 11, 2009 8:16:43 PM)
good i miss all my old friends in this chat room I am so glad to see at lot of old screen names i am crying because i miss everyone

gypsy (Nov 11, 2009 8:16:50 PM)
is anyone else having this lag

paper (Nov 11, 2009 8:17:04 PM)
ya i am\

sweetheaven (Nov 11, 2009 8:17:07 PM)
man how are they gypsy

gypsy (Nov 11, 2009 8:17:30 PM)
i haven't been able to get to chats much either sweet and even when i do there is often no one else there

beth (Nov 11, 2009 8:17:38 PM)
i have fallen about 5 times in the last several weeks

gypsy (Nov 11, 2009 8:17:51 PM)
beth that is terrible are you ok

beth (Nov 11, 2009 8:17:59 PM)
i am fine

gypsy (Nov 11, 2009 8:18:01 PM)
do you have help

sweetheaven (Nov 11, 2009 8:18:02 PM)
yeah you ok

sweetheaven (Nov 11, 2009 8:18:20 PM)
brb

gorgess25 (Nov 11, 2009 8:18:28 PM)
hi sorry was distracted

beth (Nov 11, 2009 8:18:33 PM)
yes my husband and my sister in laws husband help me

matt-p (Nov 11, 2009 8:18:42 PM)
(This user has entered Myotonic Chat Group)

paper (Nov 11, 2009 8:18:51 PM)
wb matty

gypsy (Nov 11, 2009 8:18:54 PM)
hi matt

matt-p (Nov 11, 2009 8:19:12 PM)
anna was over there had to say hi to her

beth (Nov 11, 2009 8:19:12 PM)
hey guys i need to go for the nihgt

beth (Nov 11, 2009 8:19:20 PM)
(This user has left DigiChat)

matt-p (Nov 11, 2009 8:19:24 PM)
nite beth be safe

gypsy (Nov 11, 2009 8:19:33 PM)
i am really starting to hate this so much and what it is doing to everyone before it was a nucsince now it's stopping me doing everthing

gypsy (Nov 11, 2009 8:19:40 PM)
night beth tc

Bette (Nov 11, 2009 8:19:41 PM)
Hi all. It's Bette now.

Wes (Nov 11, 2009 8:19:48 PM)
HI Bette!

sweetheaven (Nov 11, 2009 8:19:56 PM)
ok back

gypsy (Nov 11, 2009 8:19:59 PM)
hi bette

matt-p (Nov 11, 2009 8:20:05 PM)
hey sweet

sweetheaven (Nov 11, 2009 8:20:15 PM)
hi matt

gorgess25 (Nov 11, 2009 8:20:33 PM)
(This user has left DigiChat)

Wes (Nov 11, 2009 8:20:49 PM)
Well, Its kilbasa and Tater tots for dinner tonight. I'f I finish early I'll BBL. If not LAters all.

Wes (Nov 11, 2009 8:20:59 PM)
(This user has left DigiChat)

Bette (Nov 11, 2009 8:21:03 PM)
Happy birthday Beth. Hi Gypsy.

sweetheaven (Nov 11, 2009 8:21:09 PM)
ok wes

matt-p (Nov 11, 2009 8:21:24 PM)
hey paper what was for supper

paper (Nov 11, 2009 8:21:39 PM)
homemade pixxa

paper (Nov 11, 2009 8:21:43 PM)
pizza

sweetheaven (Nov 11, 2009 8:21:48 PM)
hmmmmmm I 'm coming

matt-p (Nov 11, 2009 8:21:51 PM)
yummy

matt-p (Nov 11, 2009 8:22:12 PM)
do mine with no cheese

PaRay (Nov 11, 2009 8:22:23 PM)
(This user has left DigiChat)

paper (Nov 11, 2009 8:22:24 PM)
tomarrow is pork roast and taters

sweetheaven (Nov 11, 2009 8:22:31 PM)
me lots of cheese lol

matt-p (Nov 11, 2009 8:22:33 PM)
yummy

sweetheaven (Nov 11, 2009 8:22:38 PM)
can i come paper

paper (Nov 11, 2009 8:22:43 PM)
sure

sweetheaven (Nov 11, 2009 8:22:51 PM)
gyspy you still there

matt-p (Nov 11, 2009 8:22:52 PM)
sweet i choke on stringy cheese

sweetheaven (Nov 11, 2009 8:22:56 PM)
ok what time lol

paper (Nov 11, 2009 8:23:01 PM)
this weekend i think ill do one of my turkeys

sweetheaven (Nov 11, 2009 8:23:04 PM)
oh sorry matt

Bette (Nov 11, 2009 8:23:07 PM)
Sweet, I don't remember you. Can you remind me. What diseases and where do you live.

gypsy (Nov 11, 2009 8:23:33 PM)
yes sweet

sweetheaven (Nov 11, 2009 8:23:36 PM)
i have Myotonia MD and I live here in New Jersey

gypsy (Nov 11, 2009 8:23:41 PM)
why do you keep asking me ?

matt-p (Nov 11, 2009 8:24:13 PM)
hey paper hit your abc channel fast

matt-p (Nov 11, 2009 8:24:27 PM)
i like that song there

gypsy (Nov 11, 2009 8:24:42 PM)
bette how have you been you are quiet

paper (Nov 11, 2009 8:24:44 PM)
cant i have a show dvring

gypsy (Nov 11, 2009 8:24:56 PM)
the lag on this is going to drve me mad :(

matt-p (Nov 11, 2009 8:24:57 PM)
ok

gypsy (Nov 11, 2009 8:25:26 PM)
how do you all cope with this and what do you do to pass the time ?

sweetheaven (Nov 11, 2009 8:26:05 PM)
i just keep moving and keep busy to make time pass

matt-p (Nov 11, 2009 8:26:25 PM)
it is hard gypsy i dont have the md but parkinsons

gypsy (Nov 11, 2009 8:26:32 PM)
i can't find anything i can do to pass the time

gypsy (Nov 11, 2009 8:26:49 PM)
yes i know about that too matt my mum had it

matt-p (Nov 11, 2009 8:26:51 PM)
parkinsons makes me shake real bad

gypsy (Nov 11, 2009 8:27:11 PM)
it's a terrible thing to matt :(

Bette (Nov 11, 2009 8:27:44 PM)
I'm trying to catch up on the chat.

matt-p (Nov 11, 2009 8:27:45 PM)
dont know whats worse being fed or being cleaned up from the mess of feeding myself

sweetheaven (Nov 11, 2009 8:28:10 PM)
i get the shakes and i am on medication for it

gypsy (Nov 11, 2009 8:28:39 PM)
sorry matt mum eneded up haveing to be fed

matt-p (Nov 11, 2009 8:28:52 PM)
sweet i have tried lots of meds and they all made me to sleepy and a total zombie

sweetheaven (Nov 11, 2009 8:29:31 PM)
matt have you tryed NEURONTIN

matt-p (Nov 11, 2009 8:29:49 PM)
i try to feed myself but end up being fed cause i get to messy

gypsy (Nov 11, 2009 8:29:52 PM)
i would settle for being a zombie least you don't have to think

matt-p (Nov 11, 2009 8:30:16 PM)
i dont know what all they had me on

Bette (Nov 11, 2009 8:30:26 PM)
Gypsy, I spend time on the computer and I try to read or listen to books on tape. I also spend time visiting my mother-in-law at the rest home and take classes and go to services at the temple. When I am bored, I go to bed.

gypsy (Nov 11, 2009 8:30:27 PM)
i am woried that is going to be an issue for me soon to matt and i have no one to feed me

matt-p (Nov 11, 2009 8:30:29 PM)
i was a zombie

sweetheaven (Nov 11, 2009 8:30:42 PM)
because that is what i am on and man it works

matt-p (Nov 11, 2009 8:30:57 PM)
you should get home aides like me

gypsy (Nov 11, 2009 8:31:05 PM)
thanks bette that's good youare able to go visit you MIL i am sure she appreates that

gypsy (Nov 11, 2009 8:31:21 PM)
i don't have enough money or assitance to get them for ever meal matt

sweetheaven (Nov 11, 2009 8:31:22 PM)
who matt

gypsy (Nov 11, 2009 8:31:32 PM)
i could only get a coulpe or hours a week

gypsy (Nov 11, 2009 8:31:39 PM)
every

Bette (Nov 11, 2009 8:31:40 PM)
I'm with you about no having to think. I usually don't get up until about 11:00 a.m.just cause I have noting to do.

gypsy (Nov 11, 2009 8:32:04 PM)
same bette i hate haveing nothing to do i rarely get up before 12

sweetheaven (Nov 11, 2009 8:32:13 PM)
my dad has a home health aid that comes in twice a week and he has MMd and MS

gypsy (Nov 11, 2009 8:32:23 PM)
it's a pity these chats weren't open more

sweetheaven (Nov 11, 2009 8:32:41 PM)
i agree gyspy

matt-p (Nov 11, 2009 8:32:43 PM)
dang i must really be lucky

gypsy (Nov 11, 2009 8:32:44 PM)
i cam get several hours a week but that won't help if i need feeding

matt-p (Nov 11, 2009 8:33:32 PM)
i get nearly 18 hours a day

gypsy (Nov 11, 2009 8:33:35 PM)
i should be better about what i can do but right now i am missing what i can't do so much i had no idea my arms would get so bad so fast

sweetheaven (Nov 11, 2009 8:33:39 PM)
oh

gypsy (Nov 11, 2009 8:33:57 PM)
how are everyone elses arms

sweetheaven (Nov 11, 2009 8:34:14 PM)
gsypy I have no reflects in my right side now

sweetheaven (Nov 11, 2009 8:34:26 PM)
mine are getting worse

gypsy (Nov 11, 2009 8:34:31 PM)
sweet that would be difficult

sweetheaven (Nov 11, 2009 8:34:37 PM)
yeah

Bette (Nov 11, 2009 8:34:37 PM)
I know Gypsy, we hit a peak and every thing levels off, then just when we can handle what we have it gets worse. It is so tiring.

gypsy (Nov 11, 2009 8:34:54 PM)
yes it sure is bette that is exactly right

sweetheaven (Nov 11, 2009 8:35:07 PM)
I really can't do anything any more and it makes me mad

gypsy (Nov 11, 2009 8:35:23 PM)
yes i know about that too sweet i have been getting so mad latley too

gypsy (Nov 11, 2009 8:36:43 PM)
what esle do you do on the computer bette ?

sweetheaven (Nov 11, 2009 8:37:10 PM)
i have a 5month old granddaughter now and i can't do too much

matt-p (Nov 11, 2009 8:37:25 PM)
aawww sweet

gypsy (Nov 11, 2009 8:37:29 PM)
wow that's nice for you sweet

Bette (Nov 11, 2009 8:37:40 PM)
I'm not sure what I can do and what I just choose not to do because it is easier to ask Mark to take over.

gypsy (Nov 11, 2009 8:37:45 PM)
i have two nieces 1 and 3 and i can't do much with them either

gypsy (Nov 11, 2009 8:38:28 PM)
i don't have that option bette but i still question what i can't do and what i just can't be bothered doing

gypsy (Nov 11, 2009 8:38:43 PM)
is it really too hard or am i just making it too hard

Bette (Nov 11, 2009 8:38:53 PM)
Bypsy I usually read my e-mails and work on our checking accounts. That's enough time. Sometimes i'll lok for research being done that I might get involved in.

gypsy (Nov 11, 2009 8:39:07 PM)
thinks like getting dressed is it really that hard

gypsy (Nov 11, 2009 8:39:46 PM)
i am in a few on line gruops but there never seems to be anyone on line anywhere lately

gypsy (Nov 11, 2009 8:39:59 PM)
even this chat is very quiet compared to what is used to be

sweetheaven (Nov 11, 2009 8:40:09 PM)
yup

Bette (Nov 11, 2009 8:40:19 PM)
You're right about this chat.

gypsy (Nov 11, 2009 8:40:25 PM)
often no one show up at some of the others at all

sweetheaven (Nov 11, 2009 8:40:28 PM)
i agree gypsy

gypsy (Nov 11, 2009 8:40:46 PM)
it's such a shame bette do you have any idea why peolpe don't come now

Bette (Nov 11, 2009 8:40:52 PM)
We are a very lucky group in that respect.

sweetheaven (Nov 11, 2009 8:41:55 PM)
I agree bette

gypsy (Nov 11, 2009 8:42:43 PM)
i spend abotu 10 hours a day or more on the computer and peolpe don't have time for an hour chat i find that hard to understand even if they do have things to do

Bette (Nov 11, 2009 8:42:55 PM)
Some people arn't here because they have lost their partners, some because they have gotten too weak and some becajse they have changed jobs and their hours are no longer condusive.

sweetheaven (Nov 11, 2009 8:43:21 PM)
i lost my password lol

gypsy (Nov 11, 2009 8:43:24 PM)
that makes it very hard bette

gypsy (Nov 11, 2009 8:43:42 PM)
i am sorry for the losses i did see a coulpe in the transcrips

momma (Nov 11, 2009 8:43:49 PM)
(This user has entered Myotonic Chat Group)

gypsy (Nov 11, 2009 8:43:55 PM)
hi momma

matt-p (Nov 11, 2009 8:43:56 PM)
hey momma

momma (Nov 11, 2009 8:44:03 PM)
hello

sweetheaven (Nov 11, 2009 8:44:08 PM)
hello

momma (Nov 11, 2009 8:44:12 PM)
hi

matt-p (Nov 11, 2009 8:44:15 PM)
how is momma and the gang

momma (Nov 11, 2009 8:44:39 PM)
good i dozed off and missed dmd chat lol

matt-p (Nov 11, 2009 8:44:51 PM)
aawww

Bette (Nov 11, 2009 8:44:52 PM)
Hi Momma

sweetheaven (Nov 11, 2009 8:44:53 PM)
awww

matt-p (Nov 11, 2009 8:44:55 PM)
how is

momma (Nov 11, 2009 8:44:56 PM)
hi

matt-p (Nov 11, 2009 8:45:01 PM)
K

momma (Nov 11, 2009 8:45:09 PM)
he doing good

matt-p (Nov 11, 2009 8:45:13 PM)
good

matt-p (Nov 11, 2009 8:45:25 PM)
did he ever get his w/c

momma (Nov 11, 2009 8:46:18 PM)
nope i called them yesterday and thier were suppose to call me back and never did

matt-p (Nov 11, 2009 8:46:27 PM)
wow

sweetheaven (Nov 11, 2009 8:46:33 PM)
stay on top of it momma

Bette (Nov 11, 2009 8:46:44 PM)
Oh Momma, that is so frustrating.

momma (Nov 11, 2009 8:46:53 PM)
oh i will ;)

momma (Nov 11, 2009 8:47:02 PM)
yes it sure is

matt-p (Nov 11, 2009 8:47:36 PM)
hey momma take your sleeping bag and a cooelr of food and go camp in there office till you get an awnser

sweetheaven (Nov 11, 2009 8:47:49 PM)
lol

momma (Nov 11, 2009 8:47:51 PM)
like i have said primary ins says yes to 80% medciad wont agree to thier 20 % grrr

sweetheaven (Nov 11, 2009 8:48:18 PM)
i know my dad has been fighting with them for year now

momma (Nov 11, 2009 8:48:22 PM)
but im sure you all have been thier and done that

Bette (Nov 11, 2009 8:48:27 PM)
Momma, what about MDA, they say they will help.

sweetheaven (Nov 11, 2009 8:48:42 PM)
they did help my dad

sweetheaven (Nov 11, 2009 8:48:47 PM)
didn't

paper (Nov 11, 2009 8:48:58 PM)
hey if you need help getting meds pd for here is a number that you have to have a dr office call for you the dr office must know all your meds they are the only one that can call this number it is called the P M A HOTLINE 1800-762-4636

momma (Nov 11, 2009 8:49:00 PM)
oh yea they gaid theyd help i almost forgot about mda

sweetheaven (Nov 11, 2009 8:49:02 PM)
and he has MMD and MS

matt-p (Nov 11, 2009 8:49:06 PM)
20% is pocket change to them

momma (Nov 11, 2009 8:49:25 PM)
hey i was wondering

sweetheaven (Nov 11, 2009 8:49:34 PM)
i got that lastnight and gave it to my dad today Paper

paper (Nov 11, 2009 8:49:44 PM)
good

momma (Nov 11, 2009 8:49:48 PM)
did mda tell anyone not to get h1n1 shot?

sweetheaven (Nov 11, 2009 8:49:54 PM)
he also said thank you paper

Bette (Nov 11, 2009 8:50:02 PM)
MSA may also be able to help.

paper (Nov 11, 2009 8:50:05 PM)
tell him yw

sweetheaven (Nov 11, 2009 8:50:12 PM)
i will paper

paper (Nov 11, 2009 8:50:16 PM)
k

sweetheaven (Nov 11, 2009 8:50:29 PM)
I was not to get it because i have other illness on top of the MMD

Bette (Nov 11, 2009 8:51:02 PM)
MDA out here is suggesting we get it. I don't plan to having only had the flu once and that was mild.

gypsy (Nov 11, 2009 8:51:03 PM)
i didn't get it i don't usually get flu shots

matt-p (Nov 11, 2009 8:51:15 PM)
they would not give me the one that had live germs in it

momma (Nov 11, 2009 8:51:16 PM)
just woder a 28 yr old dmd patient was told not to take the shot

momma (Nov 11, 2009 8:51:31 PM)
yea the mist matt

paper (Nov 11, 2009 8:51:44 PM)
not to take the live version

momma (Nov 11, 2009 8:52:00 PM)
no the shot or the mist

sweetheaven (Nov 11, 2009 8:52:06 PM)
i refused all of them

paper (Nov 11, 2009 8:52:13 PM)
me ro sweet

paper (Nov 11, 2009 8:52:16 PM)
to

momma (Nov 11, 2009 8:52:33 PM)
i got the mist

sweetheaven (Nov 11, 2009 8:52:34 PM)
I am not getting it for anyone and make sicker then i already am

momma (Nov 11, 2009 8:52:51 PM)
my son got the shot

sweetheaven (Nov 11, 2009 8:53:22 PM)
you have to watch with what kind of shot you get because it can progress the md

gypsy (Nov 11, 2009 8:53:24 PM)
as i have little contact with peolpe hopefully it won't be a problem

paper (Nov 11, 2009 8:53:30 PM)
if you have md or live with a md pt you should not get live

sweetheaven (Nov 11, 2009 8:53:52 PM)
belive me i been keep up with it and i went threw nursing school

sweetheaven (Nov 11, 2009 8:54:07 PM)
to know what to take and not to take

momma (Nov 11, 2009 8:54:25 PM)
so you say no to h1n1 shot ?

sweetheaven (Nov 11, 2009 8:54:31 PM)
right

matt-p (Nov 11, 2009 8:54:37 PM)
they told me the any nuro and or mussledisease peoeple should not get the live version

momma (Nov 11, 2009 8:54:45 PM)
yea

matt-p (Nov 11, 2009 8:54:55 PM)
no

sweetheaven (Nov 11, 2009 8:54:57 PM)
don't do it momma

Bette (Nov 11, 2009 8:55:02 PM)
Which one is the live version?

momma (Nov 11, 2009 8:55:07 PM)
i got the mist

paper (Nov 11, 2009 8:55:08 PM)
mist

sweetheaven (Nov 11, 2009 8:55:15 PM)
that is the problem they don't tell you

momma (Nov 11, 2009 8:55:20 PM)
my son has dmd and he got the shot

matt-p (Nov 11, 2009 8:55:21 PM)
get the h1n1 just dont take the live verison

paper (Nov 11, 2009 8:55:31 PM)
the mist is the only live version

momma (Nov 11, 2009 8:55:40 PM)
yep paper

gypsy (Nov 11, 2009 8:55:41 PM)
they had shots here other night ihave no idea which one

sweetheaven (Nov 11, 2009 8:55:58 PM)
and they won't tell you

sweetheaven (Nov 11, 2009 8:56:26 PM)
belive me when i tell you , askk them to show you the paper or the shot and it well tell you

sweetheaven (Nov 11, 2009 8:56:34 PM)
but sometime it won't

paper (Nov 11, 2009 8:57:14 PM)
never take a live vaccine no matter what it is

sweetheaven (Nov 11, 2009 8:57:46 PM)
my dad was getting it for years and now he is down to one lung and i ask the dr's y and they told me it ws from the shots

matt-p (Nov 11, 2009 8:57:51 PM)
if its live it could hunt you

paper (Nov 11, 2009 8:57:54 PM)
ok sorry to say this but this chat is now closed

Bette (Nov 11, 2009 8:58:06 PM)
MDA or the Myotonic Foundation may have an update on their sites.

paper (Nov 11, 2009 8:58:13 PM)
(This user has moved to Wheelchair Gang)

gypsy (Nov 11, 2009 8:58:21 PM)
why paper ?

gypsy (Nov 11, 2009 8:58:31 PM)
i am confused here

sweetheaven (Nov 11, 2009 8:58:32 PM)
it's 10:00

gypsy (Nov 11, 2009 8:58:51 PM)
so chat stays open till 15 after ofte n a lot later

sweetheaven (Nov 11, 2009 8:59:03 PM)
oh ok

sweetheaven (Nov 11, 2009 8:59:06 PM)
thanks

gypsy (Nov 11, 2009 8:59:29 PM)
well alway used to have things change the room will kick us out when it closes

momma (Nov 11, 2009 8:59:39 PM)
well its shower night for my son goodnight to all

Bette (Nov 11, 2009 8:59:45 PM)
We don't really close until at lease 7:15. Gypsy is right. We have a class to go to so I need to say goodnight.

gypsy (Nov 11, 2009 8:59:48 PM)
night momma tc

momma (Nov 11, 2009 8:59:54 PM)
you too

momma (Nov 11, 2009 8:59:57 PM)
(This user has left DigiChat)

gypsy (Nov 11, 2009 8:59:58 PM)
night bette tc

Bette (Nov 11, 2009 9:00:07 PM)
You too gypsy.

Bette (Nov 11, 2009 9:00:11 PM)
(This user has left DigiChat)

sweetheaven (Nov 11, 2009 9:00:15 PM)
night all

sweetheaven (Nov 11, 2009 9:00:23 PM)
(This user has moved to Wheelchair Gang)

matt-p (Nov 11, 2009 9:00:26 PM)
good nite be safe all

matt-p (Nov 11, 2009 9:00:44 PM)
(This user has left DigiChat)

gypsy (Nov 11, 2009 9:00:47 PM)
is everyone going

gypsy (Nov 11, 2009 9:01:00 PM)
no point in staying now

gypsy (Nov 11, 2009 9:01:21 PM)
(This user has moved to Wheelchair Gang)