MD Support Group

beckdildal (Jun 14, 2009 6:13:38 PM)
hello and welcome to md support chat

joeS (Jun 14, 2009 6:25:06 PM)
(This user has entered MD Support Group)

beckdildal (Jun 14, 2009 6:25:27 PM)
hello joe

joeS (Jun 14, 2009 6:25:27 PM)
(This user is now known as joe)

joe (Jun 14, 2009 6:25:39 PM)
hello

beckdildal (Jun 14, 2009 6:26:00 PM)
how are you doing today?

joe (Jun 14, 2009 6:26:31 PM)
I'm doing good..Thanks

joe (Jun 14, 2009 6:26:41 PM)
how are you?

beckdildal (Jun 14, 2009 6:27:13 PM)
I'm doing good...is this your first time on MDA chat?

joe (Jun 14, 2009 6:27:34 PM)
in this one yes..

beckdildal (Jun 14, 2009 6:28:13 PM)
i'm beck, and i have FSHD

joe (Jun 14, 2009 6:28:30 PM)
useally i am here wesday and fridays

joe (Jun 14, 2009 6:29:05 PM)
hi Beck

beckdildal (Jun 14, 2009 6:29:09 PM)
LGMD?

joe (Jun 14, 2009 6:29:25 PM)
i am sloejoe on myMDA

joe (Jun 14, 2009 6:29:48 PM)
i have SMA

joe (Jun 14, 2009 6:29:56 PM)
they think

beckdildal (Jun 14, 2009 6:30:12 PM)
ok

beckdildal (Jun 14, 2009 6:30:34 PM)
i enjoy the music that you post

joe (Jun 14, 2009 6:30:51 PM)
thanks

beckdildal (Jun 14, 2009 6:31:13 PM)
do you sing?

joe (Jun 14, 2009 6:31:24 PM)
oh no

joe (Jun 14, 2009 6:31:59 PM)
i did in school long tim ago

beckdildal (Jun 14, 2009 6:32:19 PM)
that is when i started...in school

joe (Jun 14, 2009 6:32:36 PM)
music helps me cope

beckdildal (Jun 14, 2009 6:32:48 PM)
then for a long time i didn't sing, and now i do again

joe (Jun 14, 2009 6:33:01 PM)
nicce

beckdildal (Jun 14, 2009 6:33:04 PM)
it's also very good for you

beckdildal (Jun 14, 2009 6:33:26 PM)
are you the only one in your family with md?

joe (Jun 14, 2009 6:33:36 PM)
yep

beckdildal (Jun 14, 2009 6:34:10 PM)
is your family understanding?

joe (Jun 14, 2009 6:34:26 PM)
in 1974 i was dx witth lgmd

joe (Jun 14, 2009 6:34:45 PM)
family is very close

beckdildal (Jun 14, 2009 6:34:48 PM)
it's harder to get a dx when you are the first one

beckdildal (Jun 14, 2009 6:35:10 PM)
that's good. so is mine. it helps alot.

joe (Jun 14, 2009 6:35:13 PM)
then in 94 changed it sma

beckdildal (Jun 14, 2009 6:35:35 PM)
did they do dna tests?

joe (Jun 14, 2009 6:36:06 PM)
yes long time ago in early 70's

joe (Jun 14, 2009 6:36:31 PM)
family?

beckdildal (Jun 14, 2009 6:36:45 PM)
youve had it for a long time!

joe (Jun 14, 2009 6:36:57 PM)
i have been testing every year

joe (Jun 14, 2009 6:37:07 PM)
all my life

beckdildal (Jun 14, 2009 6:37:15 PM)
yes, i'm married, but no kids

joe (Jun 14, 2009 6:37:36 PM)
in 74 i was md postter child

beckdildal (Jun 14, 2009 6:37:37 PM)
and i live close to my sister and her family

joe (Jun 14, 2009 6:37:59 PM)
i am youngest of 5

beckdildal (Jun 14, 2009 6:38:14 PM)
i never knew i had it till i was 20

beckdildal (Jun 14, 2009 6:38:28 PM)
youngest of 3 here

joe (Jun 14, 2009 6:39:54 PM)
where you live

beckdildal (Jun 14, 2009 6:40:01 PM)
seattle area

joe (Jun 14, 2009 6:40:09 PM)
oh ok

joe (Jun 14, 2009 6:40:26 PM)
i'm in minnesota

beckdildal (Jun 14, 2009 6:40:42 PM)
i have a cousin who lives there

joe (Jun 14, 2009 6:40:48 PM)
close tto minneapolis

beckdildal (Jun 14, 2009 6:41:13 PM)
do you live in the city?

joe (Jun 14, 2009 6:41:34 PM)
hour north of the cties

joe (Jun 14, 2009 6:41:54 PM)
about

beckdildal (Jun 14, 2009 6:42:11 PM)
does the MDA have a clinic there?

joe (Jun 14, 2009 6:42:45 PM)
i drive into st paul to tthe U of M

beckdildal (Jun 14, 2009 6:43:15 PM)
are you driving?

joe (Jun 14, 2009 6:43:43 PM)
no nott for 5 years now

beckdildal (Jun 14, 2009 6:44:49 PM)
do you know any of the other members of myMDA from MN?

joe (Jun 14, 2009 6:45:38 PM)
yes..Robert..

joe (Jun 14, 2009 6:45:47 PM)
thrillsonwheels

joe (Jun 14, 2009 6:45:58 PM)
and Tim

beckdildal (Jun 14, 2009 6:46:02 PM)
he has FSH like i do

joe (Jun 14, 2009 6:46:09 PM)
yep

joe (Jun 14, 2009 6:47:21 PM)
he is a amazing guy...very nice

beckdildal (Jun 14, 2009 6:47:31 PM)
he seems like it

beckdildal (Jun 14, 2009 6:47:36 PM)
and busy too

joe (Jun 14, 2009 6:47:51 PM)
lol...yes

beckdildal (Jun 14, 2009 6:48:26 PM)
how did you meet him?

joe (Jun 14, 2009 6:49:12 PM)
on myMDA..hen att Black and Blue Ball.

joe (Jun 14, 2009 6:49:19 PM)
tthen

joe (Jun 14, 2009 6:49:44 PM)
and we have had lunch ttogetther

beckdildal (Jun 14, 2009 6:50:54 PM)
Black and Blue ball? is that dress up?

joe (Jun 14, 2009 6:51:21 PM)
itt can be

beckdildal (Jun 14, 2009 6:51:43 PM)
a fund raiser for MDA?

joe (Jun 14, 2009 6:52:04 PM)
it is also known for biker fund raiser

joe (Jun 14, 2009 6:52:20 PM)
yes mda

beckdildal (Jun 14, 2009 6:52:21 PM)
oic ok

beckdildal (Jun 14, 2009 6:52:59 PM)
this chat is slowing down during the summer

joe (Jun 14, 2009 6:53:27 PM)
oh i see

beckdildal (Jun 14, 2009 6:53:45 PM)
we've had 26 days of sunny weather here, which is almost the record

joe (Jun 14, 2009 6:53:55 PM)
lol

beckdildal (Jun 14, 2009 6:54:16 PM)
you think i jest?!lol

joe (Jun 14, 2009 6:54:17 PM)
finally gettin warm here

beckdildal (Jun 14, 2009 6:54:48 PM)
you had a terrible winter from accounts i heard

beckdildal (Jun 14, 2009 6:54:58 PM)
with flooding etc.

joe (Jun 14, 2009 6:55:07 PM)
ya

beckdildal (Jun 14, 2009 6:55:52 PM)
once it warms up there how hot does it get?

joe (Jun 14, 2009 6:56:20 PM)
oh it can get in the 90's

joe (Jun 14, 2009 6:56:48 PM)
you been in seattle all your life?

beckdildal (Jun 14, 2009 6:57:36 PM)
no, just since the 1980s. but i went to college in the midwest

beckdildal (Jun 14, 2009 6:58:24 PM)
i like it out here weatherwise

joe (Jun 14, 2009 6:59:24 PM)
if it wasnt for family i would move to warmer place i tink

beckdildal (Jun 14, 2009 6:59:53 PM)
my aunt and uncle used to go to arizona in the winters

joe (Jun 14, 2009 7:00:52 PM)
nice and warm down there

beckdildal (Jun 14, 2009 7:01:18 PM)
my folks used to go to FL, but now they live here too

beckdildal (Jun 14, 2009 7:01:57 PM)
i can't handle the snow and ice, and we usually don't get that to much here

beckdildal (Jun 14, 2009 7:02:31 PM)
are you using a powerchair to get around?

joe (Jun 14, 2009 7:02:49 PM)
yes i do

beckdildal (Jun 14, 2009 7:03:16 PM)
does your have the tilt/recline feature?

joe (Jun 14, 2009 7:03:29 PM)
yes

beckdildal (Jun 14, 2009 7:03:46 PM)
do you use that alot?

joe (Jun 14, 2009 7:04:06 PM)
oh yes...lol

joe (Jun 14, 2009 7:04:10 PM)
lot

joe (Jun 14, 2009 7:04:35 PM)
keeps pressure off my rear

beckdildal (Jun 14, 2009 7:05:01 PM)
do you have to have help with transfers?

joe (Jun 14, 2009 7:05:15 PM)
yes

joe (Jun 14, 2009 7:05:40 PM)
i can stand with asstistance

beckdildal (Jun 14, 2009 7:05:47 PM)
ok

joe (Jun 14, 2009 7:06:00 PM)
i also use a vent

beckdildal (Jun 14, 2009 7:06:23 PM)
24/7

joe (Jun 14, 2009 7:06:29 PM)
yesu

joe (Jun 14, 2009 7:06:34 PM)
yes

joe (Jun 14, 2009 7:07:03 PM)
i met Roy and his mother

beckdildal (Jun 14, 2009 7:07:06 PM)
i use non-invasive vent, but only at night

beckdildal (Jun 14, 2009 7:07:12 PM)
how?

joe (Jun 14, 2009 7:07:15 PM)
do you know them

beckdildal (Jun 14, 2009 7:07:23 PM)
from chats

joe (Jun 14, 2009 7:07:27 PM)
chatting

beckdildal (Jun 14, 2009 7:07:31 PM)
i've yet to met them

joe (Jun 14, 2009 7:07:54 PM)
he is on wensday chats

beckdildal (Jun 14, 2009 7:08:02 PM)
wheel chair gang

joe (Jun 14, 2009 7:08:10 PM)
yep

beckdildal (Jun 14, 2009 7:08:13 PM)
i know hen well

joe (Jun 14, 2009 7:08:32 PM)
ok..i have chatted with hen

beckdildal (Jun 14, 2009 7:08:38 PM)
he's got a full time job now. does he still have time for chats?

joe (Jun 14, 2009 7:09:08 PM)
ya he is been on

beckdildal (Jun 14, 2009 7:09:18 PM)
did you fiund out about these chats after you joined myMDA?

joe (Jun 14, 2009 7:09:27 PM)
yes

joe (Jun 14, 2009 7:10:08 PM)
wish i would have known sooner...lol

beckdildal (Jun 14, 2009 7:10:11 PM)
i've been chatting here many yrs

beckdildal (Jun 14, 2009 7:10:27 PM)
it really helped me not to feel so isolated

beckdildal (Jun 14, 2009 7:10:55 PM)
i think having myMDA will help get the word out

joe (Jun 14, 2009 7:11:15 PM)
ya i think so

beckdildal (Jun 14, 2009 7:11:46 PM)
back when you and i were dx there wasn't internet. i did go to a local support group for a while.

joe (Jun 14, 2009 7:12:29 PM)
wish i would have

beckdildal (Jun 14, 2009 7:12:42 PM)
did you go to summer camp?

joe (Jun 14, 2009 7:12:53 PM)
i hid behind drugs for many years

joe (Jun 14, 2009 7:13:10 PM)
i did when i was a kid

beckdildal (Jun 14, 2009 7:13:35 PM)
sorry to hear it

joe (Jun 14, 2009 7:13:58 PM)
been clean for 9 years now'

beckdildal (Jun 14, 2009 7:14:20 PM)
great

beckdildal (Jun 14, 2009 7:15:30 PM)
btw this chat ends soon

joe (Jun 14, 2009 7:15:48 PM)
well it's shift change for my nurses and need to give her report

beckdildal (Jun 14, 2009 7:15:57 PM)
i'm goign to sayy goodnight and hope to chat again

beckdildal (Jun 14, 2009 7:16:09 PM)
take care

joe (Jun 14, 2009 7:16:15 PM)
yes thank you

joe (Jun 14, 2009 7:16:24 PM)
tc...talk soon

beckdildal (Jun 14, 2009 7:16:24 PM)
(This user has left DigiChat)

joe (Jun 14, 2009 7:16:32 PM)
(This user has left DigiChat)