Living with CMT

philanthropest (Jan 31, 2007 6:47:13 PM)
(This user is now known as Heather)

Heather (Jan 31, 2007 6:49:26 PM)
(This user has entered Living with CMT)

Heather (Jan 31, 2007 6:49:26 PM)
(This user has moved to Living with CMT)

EZgoing (Jan 31, 2007 6:49:30 PM)
(This user has entered Living with CMT)

Heather (Jan 31, 2007 6:49:47 PM)
hey ez

Heather (Jan 31, 2007 6:49:57 PM)
this is the cmt chat right

EZgoing (Jan 31, 2007 6:50:02 PM)
Hi there Heather... how ya doing tonight

Heather (Jan 31, 2007 6:50:03 PM)
starts at 8?

EZgoing (Jan 31, 2007 6:50:07 PM)
yep and ype

Heather (Jan 31, 2007 6:50:08 PM)
doing ok

Heather (Jan 31, 2007 6:50:11 PM)
thanks

Heather (Jan 31, 2007 6:50:22 PM)
so have you done this chat before?

EZgoing (Jan 31, 2007 6:50:31 PM)
yep... a few times..

EZgoing (Jan 31, 2007 6:50:37 PM)
I take it your new?

Heather (Jan 31, 2007 6:50:41 PM)
i've only done it a time or so

Heather (Jan 31, 2007 6:50:44 PM)
nice people in here

Heather (Jan 31, 2007 6:50:49 PM)
where ya from

EZgoing (Jan 31, 2007 6:51:10 PM)
upstate NY..

EZgoing (Jan 31, 2007 6:51:12 PM)
and U

Heather (Jan 31, 2007 6:51:19 PM)
austin, tx

Heather (Jan 31, 2007 6:51:35 PM)
how's the weather there this time of year?

EZgoing (Jan 31, 2007 6:51:43 PM)
you guys had a bit of a chill a bit ago.. now we are in for a freeze here

Heather (Jan 31, 2007 6:51:52 PM)
we had snow and all

Heather (Jan 31, 2007 6:52:00 PM)
it's suppose to get cold again on friday

EZgoing (Jan 31, 2007 6:52:01 PM)
low for monday is due to be -4

Heather (Jan 31, 2007 6:52:06 PM)
down to the teens here

Heather (Jan 31, 2007 6:52:15 PM)
-4 there --- what am i complaining about

Heather (Jan 31, 2007 6:52:18 PM)
holy cow

EZgoing (Jan 31, 2007 6:52:20 PM)
yep... strange for you guys..

Heather (Jan 31, 2007 6:52:22 PM)
that's nuts

Heather (Jan 31, 2007 6:52:31 PM)
i'm originally from florida

Heather (Jan 31, 2007 6:52:37 PM)
so i thought the teens were cold

Heather (Jan 31, 2007 6:52:38 PM)
hehe

EZgoing (Jan 31, 2007 6:52:40 PM)
with chill I'm sure that will drop down a bit more.. LOL

EZgoing (Jan 31, 2007 6:52:50 PM)
brb..

Heather (Jan 31, 2007 6:52:55 PM)
k

Heather (Jan 31, 2007 6:53:07 PM)
me too - i'm burning dinner

Heather (Jan 31, 2007 6:53:09 PM)
just a sec

Heather (Jan 31, 2007 6:57:24 PM)
(This user has left DigiChat)

philanthropest (Jan 31, 2007 6:57:24 PM)
(This user has entered Living with CMT)

philanthropest (Jan 31, 2007 6:57:34 PM)
i'm back

philanthropest (Jan 31, 2007 7:04:02 PM)
(This user is now known as Heather)

Heather (Jan 31, 2007 7:04:24 PM)
(This user has entered Living with CMT)

Heather (Jan 31, 2007 7:04:41 PM)
(This user has left DigiChat)

philanthropest (Jan 31, 2007 7:04:53 PM)
(This user has entered Living with CMT)

philanthropest (Jan 31, 2007 7:05:20 PM)
(This user is now known as Heather)

EZgoing (Jan 31, 2007 7:09:29 PM)
Hi there..

EZgoing (Jan 31, 2007 7:09:42 PM)
I take it your Phil?

EZgoing (Jan 31, 2007 7:09:56 PM)
Heather, you around still?

Heather (Jan 31, 2007 7:10:54 PM)
hey

Heather (Jan 31, 2007 7:10:57 PM)
i'm still here

Heather (Jan 31, 2007 7:11:03 PM)
still burning dinner

Heather (Jan 31, 2007 7:11:06 PM)
what's up

Heather (Jan 31, 2007 7:11:11 PM)
yes i am phil

EZgoing (Jan 31, 2007 7:11:20 PM)
LOL on burning dinner... hehehe

Heather (Jan 31, 2007 7:11:32 PM)
philanthropest -- lover of mankind -- a do-gooder if you will

EZgoing (Jan 31, 2007 7:11:48 PM)
ok...

Heather (Jan 31, 2007 7:11:50 PM)
my family doesn't see the humor in that

Heather (Jan 31, 2007 7:11:51 PM)
hehe

Heather (Jan 31, 2007 7:12:03 PM)
so where is everybody

EZgoing (Jan 31, 2007 7:12:16 PM)
my list says that you left but phil showed up.. but the users in the room say that heather is still here and no Phil

Heather (Jan 31, 2007 7:12:32 PM)
that's because we are one and the same

Heather (Jan 31, 2007 7:12:39 PM)
my silly pc is having a day

EZgoing (Jan 31, 2007 7:12:40 PM)
I have no clue where they all are... It's been awhile since I've been around here

Heather (Jan 31, 2007 7:13:04 PM)
there's usually a lady named K something and a guy named matt

Heather (Jan 31, 2007 7:13:23 PM)
i'm not too savvy with smooth spontaneous chat

EZgoing (Jan 31, 2007 7:13:31 PM)
Just so you know, we have a 6 yr old and it's bath time and book reading time here shortly, so if I happen to leave ya, I am not ignoring ya.. but will be back soon..

Heather (Jan 31, 2007 7:13:33 PM)
i'm more of a listener

Heather (Jan 31, 2007 7:13:40 PM)
THANK YOU

Heather (Jan 31, 2007 7:13:42 PM)
meeee tooooo

Heather (Jan 31, 2007 7:13:49 PM)
got a 4 and 6 and it

Heather (Jan 31, 2007 7:13:56 PM)
is bath and story and dinner

Heather (Jan 31, 2007 7:13:58 PM)
hehe

Heather (Jan 31, 2007 7:14:01 PM)
that's great

Heather (Jan 31, 2007 7:14:05 PM)
boy or girl

EZgoing (Jan 31, 2007 7:14:15 PM)
the little one is a girl..

EZgoing (Jan 31, 2007 7:14:19 PM)
got 5 kids

EZgoing (Jan 31, 2007 7:15:01 PM)
28, 26, 24, 22 and 5... someone couldn't wait for g-kids... got one of them now and another on the way...

Heather (Jan 31, 2007 7:16:19 PM)
HOLY COW

Heather (Jan 31, 2007 7:16:25 PM)
are you serious

Heather (Jan 31, 2007 7:16:27 PM)
good for you

Heather (Jan 31, 2007 7:16:36 PM)
that's great

Heather (Jan 31, 2007 7:16:41 PM)
so what's your name

sandyc (Jan 31, 2007 7:17:14 PM)
(This user has entered Living with CMT)

EZgoing (Jan 31, 2007 7:17:15 PM)
I'm sorry.. Ernie

Heather (Jan 31, 2007 7:17:18 PM)
sorry i'm in and out too -- trying to get them to eat their blackened chicken -- and i do mean blackened

EZgoing (Jan 31, 2007 7:17:24 PM)
Hi Sandy...

Heather (Jan 31, 2007 7:17:29 PM)
nice to meet you ernie

Heather (Jan 31, 2007 7:17:32 PM)
and sandy

Heather (Jan 31, 2007 7:17:42 PM)
i'll be right back

EZgoing (Jan 31, 2007 7:17:49 PM)
LOL on the blackened

EZgoing (Jan 31, 2007 7:17:52 PM)
k

sandyc (Jan 31, 2007 7:17:58 PM)
Hello

EZgoing (Jan 31, 2007 7:17:59 PM)
So, how is sandy doing tonight

sandyc (Jan 31, 2007 7:18:21 PM)
Tierd..

EZgoing (Jan 31, 2007 7:18:28 PM)
I"m Ernie btw.. Heather is in and out with kids and dinner...

EZgoing (Jan 31, 2007 7:18:36 PM)
Staying warm?

sandyc (Jan 31, 2007 7:18:41 PM)
LOL I remember those days

EZgoing (Jan 31, 2007 7:18:57 PM)
I thought we were done with them..

sandyc (Jan 31, 2007 7:19:00 PM)
Trying too its cold here in connecticut

EZgoing (Jan 31, 2007 7:19:17 PM)
or kids are 28, 26, 24, 22 and 6

matt-c (Jan 31, 2007 7:19:18 PM)
(This user has entered Living with CMT)

sandyc (Jan 31, 2007 7:19:27 PM)
Cant complain though no snow to speak of

sandyc (Jan 31, 2007 7:19:37 PM)
Mine are 23 and 19

EZgoing (Jan 31, 2007 7:19:38 PM)
I'm in upstate NY.. and heather is in Tx..

EZgoing (Jan 31, 2007 7:19:44 PM)
Howdy Matt..

sandyc (Jan 31, 2007 7:19:59 PM)
Hi Matt

EZgoing (Jan 31, 2007 7:20:02 PM)
we have had a mild winter in the north east so far..

matt-c (Jan 31, 2007 7:20:11 PM)
howdy where is k ?

sandyc (Jan 31, 2007 7:20:13 PM)
Yes We are lucky

EZgoing (Jan 31, 2007 7:20:13 PM)
but might just pay for it before it's all over with..

sandyc (Jan 31, 2007 7:20:26 PM)
Thats what I was thinking today too

EZgoing (Jan 31, 2007 7:20:33 PM)
No clue.. just the 4 of us here tonight so far

sandyc (Jan 31, 2007 7:20:52 PM)
Mother nature always evens things out

matt-c (Jan 31, 2007 7:20:54 PM)
okay hi heather

EZgoing (Jan 31, 2007 7:20:55 PM)
Where are you from Matt?

matt-c (Jan 31, 2007 7:21:12 PM)
Winchester, va

EZgoing (Jan 31, 2007 7:21:20 PM)
Heather is dealing with dinner and chatting when she can...

sandyc (Jan 31, 2007 7:21:33 PM)
My inlaws are from Va

matt-c (Jan 31, 2007 7:21:42 PM)
okay thanks

EZgoing (Jan 31, 2007 7:21:48 PM)
so you have been getting colder than your usual winter then

sandyc (Jan 31, 2007 7:21:56 PM)
Rural Retreat Va outside of Wytheville

EZgoing (Jan 31, 2007 7:22:33 PM)
Does the cold weather bother your CMT?

sandyc (Jan 31, 2007 7:22:49 PM)
Oh YES it does how about you?

EZgoing (Jan 31, 2007 7:22:50 PM)
^that was for all... sorry

matt-c (Jan 31, 2007 7:23:09 PM)
we are supposed to have snow night i don't know how much

EZgoing (Jan 31, 2007 7:23:10 PM)
Hands quit working in the cold.. and get real painful

sandyc (Jan 31, 2007 7:23:23 PM)
Cold and rain and dampness

EZgoing (Jan 31, 2007 7:23:34 PM)
feet and legs don't like it either..

sandyc (Jan 31, 2007 7:23:53 PM)
My legs and hands and back dont like it at all

matt-c (Jan 31, 2007 7:23:59 PM)
i have that happen to me too. so don't fell bad

EZgoing (Jan 31, 2007 7:23:59 PM)
takes for ever to warm up from a bone chilling cold too.. found the water bed or a hot bath helps that

EZgoing (Jan 31, 2007 7:24:46 PM)
did find that if I take some of those pocket warmers if I'm going to be stuck outside for any length of time helps...

sandyc (Jan 31, 2007 7:24:53 PM)
Yup it does take alot to warm up I have to do the same thing but then have to be careful I have lost all sensory in hands lehs and feet

EZgoing (Jan 31, 2007 7:25:23 PM)
I usually have my wife chek the temp first..

matt-c (Jan 31, 2007 7:25:25 PM)
not ffun\

sandyc (Jan 31, 2007 7:25:26 PM)
I cant feel hot ot cold water anymore

sandyc (Jan 31, 2007 7:25:52 PM)
I have to use my arm up by my elbow to test temp

matt-c (Jan 31, 2007 7:25:52 PM)
me either

EZgoing (Jan 31, 2007 7:26:06 PM)
when the baby bottles were boiling, I could take them out with tongs, and grab them to put them in the rack and never feel it..

sandyc (Jan 31, 2007 7:26:15 PM)
Yup

EZgoing (Jan 31, 2007 7:26:40 PM)
be happy you don't feel the cold water.. cold water and ice really hurt my fingers..

sandyc (Jan 31, 2007 7:27:00 PM)
I have pulled things out of the oven and not felt the potholders move and grabbed the pan and not know til I set it on top of stove

sandyc (Jan 31, 2007 7:27:13 PM)
The its like YOWWWWWWW too late

sandyc (Jan 31, 2007 7:27:35 PM)
now I only use the oven mitts

EZgoing (Jan 31, 2007 7:28:03 PM)
yeah... you figure out you should be yelling, only a long time ago..

EZgoing (Jan 31, 2007 7:28:12 PM)
the mitts are a good idea..

sandyc (Jan 31, 2007 7:28:22 PM)
I have even cut my fingers chopping veggies and not realize it till I look and see blood all over

Heather (Jan 31, 2007 7:28:31 PM)
me too sandy

sandyc (Jan 31, 2007 7:28:32 PM)
LOL thats soo true

matt-c (Jan 31, 2007 7:28:33 PM)
i agree

Heather (Jan 31, 2007 7:28:37 PM)
happy birthday matt

sandyc (Jan 31, 2007 7:28:45 PM)
Scarey at first

matt-c (Jan 31, 2007 7:28:45 PM)
thank you

sandyc (Jan 31, 2007 7:28:55 PM)
HAPPY BIRTHDAY!

matt-c (Jan 31, 2007 7:29:01 PM)
thsnks

EZgoing (Jan 31, 2007 7:29:15 PM)
Happy day of birth Matt...

sandyc (Jan 31, 2007 7:29:21 PM)
I just got AFOs 2 weeks ago

matt-c (Jan 31, 2007 7:29:29 PM)
thanks

matt-c (Jan 31, 2007 7:29:34 PM)
really

EZgoing (Jan 31, 2007 7:29:38 PM)
have you broke into them yet sandy?

sandyc (Jan 31, 2007 7:30:20 PM)
They make me walk somewhat better but they have my ankles locked at 90 degree angle so I dont know if I can drive with them

EZgoing (Jan 31, 2007 7:30:27 PM)
I'm due for new ones this fall.. and really looking forward to them.. my feet have gotten worse and they just don't fit right any more

matt-c (Jan 31, 2007 7:30:37 PM)
ok

sandyc (Jan 31, 2007 7:31:09 PM)
Yes I wear them if I go out with my husband shopping or what have you they DO make my legs feel stonger

sandyc (Jan 31, 2007 7:31:35 PM)
BUT I really notice how weak they are after I take AFOs off

EZgoing (Jan 31, 2007 7:31:42 PM)
depending on your progression level, they really are a big help..

EZgoing (Jan 31, 2007 7:32:18 PM)
help to keep you from turning your ankle... support for your feet, stability that you just don't have anymore due to CMT

EZgoing (Jan 31, 2007 7:32:36 PM)
I take it you have fixed ankle joints?

matt-c (Jan 31, 2007 7:32:44 PM)
(This user has left DigiChat)

sandyc (Jan 31, 2007 7:32:44 PM)
Yup..when I take them off i cant believe how diffrent that my legs and ankles feel

sandyc (Jan 31, 2007 7:33:03 PM)
Yes they are fixed

EZgoing (Jan 31, 2007 7:33:13 PM)
Do you wear afo's Heather?

sandyc (Jan 31, 2007 7:33:13 PM)
I wonder if I could drive?

EZgoing (Jan 31, 2007 7:33:20 PM)
I can..

sandyc (Jan 31, 2007 7:33:37 PM)
You can are yours fixed like mine?

matt-c (Jan 31, 2007 7:33:37 PM)
(This user has entered Living with CMT)

EZgoing (Jan 31, 2007 7:34:02 PM)
mine are from Townsend design... the ankles are made articulated but I've had to lock them out due to getting worse.. and I still drive..

matt-c (Jan 31, 2007 7:34:09 PM)
how are you?\

EZgoing (Jan 31, 2007 7:34:10 PM)
welcome back Matt.. lol

sandyc (Jan 31, 2007 7:34:22 PM)
lost ya!!LOL

EZgoing (Jan 31, 2007 7:34:27 PM)
do you wear AFO's Matt?

matt-c (Jan 31, 2007 7:34:31 PM)
thanks

sandyc (Jan 31, 2007 7:34:37 PM)
Mine are a solid piece on both legs

matt-c (Jan 31, 2007 7:34:49 PM)
yes i do

EZgoing (Jan 31, 2007 7:34:51 PM)
do you have the plastic type sandy?

sandyc (Jan 31, 2007 7:34:56 PM)
yes

EZgoing (Jan 31, 2007 7:35:37 PM)
I am heavy, and was planning on trying to continue to work at the time they were ordered, so I got the carbon graphite ones.. much stronger...

sandyc (Jan 31, 2007 7:35:52 PM)
they are molded from the back of my knees down my legs to the bottom of my feet to my toes

EZgoing (Jan 31, 2007 7:36:08 PM)
full support... that's good.

EZgoing (Jan 31, 2007 7:36:37 PM)
Most say that you should try to wear them a few hours at first, and work your way up to a level that works for you

matt-c (Jan 31, 2007 7:37:01 PM)
I have the pllastic afos

sandyc (Jan 31, 2007 7:37:01 PM)
i thinkThats what mine are from..carbon graphite but feel like a heavy plastic I remember them saying carbon something! LOL

EZgoing (Jan 31, 2007 7:37:02 PM)
I can still go with out them at home, but have to wall walk...most of the time

EZgoing (Jan 31, 2007 7:37:16 PM)
LOL sandy

EZgoing (Jan 31, 2007 7:37:38 PM)
when I'm out of the house, I use the afo's and a cane full time..

Heather (Jan 31, 2007 7:37:42 PM)
(This user has left DigiChat)

philanthropest (Jan 31, 2007 7:37:45 PM)
(This user has entered Living with CMT)

EZgoing (Jan 31, 2007 7:37:52 PM)
trying to hold off the next step as long as I can..

EZgoing (Jan 31, 2007 7:37:56 PM)
WB Heather

matt-c (Jan 31, 2007 7:38:00 PM)
ok

philanthropest (Jan 31, 2007 7:38:01 PM)
hey sorry

philanthropest (Jan 31, 2007 7:38:11 PM)
this pc has a mind of it's own

philanthropest (Jan 31, 2007 7:38:19 PM)
so what did i miss?

EZgoing (Jan 31, 2007 7:38:38 PM)
don't feel like the lone ranger Heather.. all of ours have their own mind

EZgoing (Jan 31, 2007 7:38:42 PM)
brb guys..

sandyc (Jan 31, 2007 7:38:42 PM)
I dont wear them at home seems like alot of work to get them on and off pulling up my pant legs and trying to insert my foot into my shoes..so I wall walk when home unless I am having a really bad day

matt-c (Jan 31, 2007 7:39:23 PM)
hi phil

philanthropest (Jan 31, 2007 7:39:29 PM)
what's up matt

philanthropest (Jan 31, 2007 7:39:37 PM)
it's heather by the way

sandyc (Jan 31, 2007 7:39:39 PM)
I dont like not feeling my feet anymore though

matt-c (Jan 31, 2007 7:39:46 PM)
nothing

philanthropest (Jan 31, 2007 7:39:48 PM)
(This user is now known as heather)

matt-c (Jan 31, 2007 7:40:07 PM)
hi heather

heather (Jan 31, 2007 7:40:30 PM)
hey sandy --- my friend suggests the shoes CROCS - with afo's

sandyc (Jan 31, 2007 7:40:48 PM)
is that like a walking shoe?

heather (Jan 31, 2007 7:40:59 PM)
got any big birthday plans matt

heather (Jan 31, 2007 7:41:04 PM)
yeah

sandyc (Jan 31, 2007 7:41:16 PM)
Hmmm never heard of them

heather (Jan 31, 2007 7:41:19 PM)
it's those colorful shoes you see everybody wearing these days

heather (Jan 31, 2007 7:41:28 PM)
they look like gardening shoes

sandyc (Jan 31, 2007 7:41:33 PM)
LOL well I would be styling!

heather (Jan 31, 2007 7:41:44 PM)
they are less expensive than custom shoes

heather (Jan 31, 2007 7:42:03 PM)
yeah - they come in every color and work incredibly well with afos

sandyc (Jan 31, 2007 7:42:07 PM)
I insert mine into my new balance walking shoe

sandyc (Jan 31, 2007 7:42:21 PM)
I will have to look into them thanks!

heather (Jan 31, 2007 7:42:22 PM)
i like new balance

heather (Jan 31, 2007 7:42:41 PM)
also a good running shoe seems to help as far as support

heather (Jan 31, 2007 7:42:50 PM)
but those get pricey

matt-c (Jan 31, 2007 7:42:55 PM)
heather not really

sandyc (Jan 31, 2007 7:43:01 PM)
me too the ones with the graphite roll bar the 811 its the only one that I was able to walk in when I was working

heather (Jan 31, 2007 7:43:02 PM)
why not matt

matt-c (Jan 31, 2007 7:43:23 PM)
I just don't

heather (Jan 31, 2007 7:43:39 PM)
acics just put out a high end running shoe that is pretty good

heather (Jan 31, 2007 7:43:47 PM)
but it's about $100

heather (Jan 31, 2007 7:43:50 PM)
pricey

sandyc (Jan 31, 2007 7:44:01 PM)
O know mine are pricey too

heather (Jan 31, 2007 7:44:10 PM)
matt - you should celebrate your birthday

heather (Jan 31, 2007 7:44:20 PM)
have a little fun matt

sandyc (Jan 31, 2007 7:44:39 PM)
what birthday is this Matt?

heather (Jan 31, 2007 7:44:42 PM)
sandy - help me get on matt here about celebrating his bday

heather (Jan 31, 2007 7:44:46 PM)
he's just a youngin

heather (Jan 31, 2007 7:44:53 PM)
feb 5th?

sandyc (Jan 31, 2007 7:44:56 PM)
Want me to sing!! LOL

heather (Jan 31, 2007 7:45:03 PM)
YES _ SING!!!

matt-c (Jan 31, 2007 7:45:04 PM)
no

heather (Jan 31, 2007 7:45:05 PM)
mee too

heather (Jan 31, 2007 7:45:07 PM)
hehe

matt-c (Jan 31, 2007 7:45:17 PM)
funny heather

heather (Jan 31, 2007 7:45:20 PM)
aw comon matt - you sound a bit down tonight

sandyc (Jan 31, 2007 7:45:22 PM)
My dog howls and the neibors shut their windows!!!

heather (Jan 31, 2007 7:45:24 PM)
what's the deal

heather (Jan 31, 2007 7:45:30 PM)
hahaha i love it sandy

sandyc (Jan 31, 2007 7:45:56 PM)
Matt its your birthday !!!! Thats a speical day!!

heather (Jan 31, 2007 7:46:29 PM)
take yourself out to dinner with a good friend -- have a drink and cheer the moment -- then off to a movie

sandyc (Jan 31, 2007 7:46:40 PM)
Im gonnnnnnnnna start singing!!!

matt-c (Jan 31, 2007 7:46:42 PM)
i am not down at all

heather (Jan 31, 2007 7:46:43 PM)
and take yourself out for an ice cream or a pina colada

heather (Jan 31, 2007 7:46:49 PM)
do it sandy

heather (Jan 31, 2007 7:46:51 PM)
yeah

sandyc (Jan 31, 2007 7:46:58 PM)
yummmmm ice cream

heather (Jan 31, 2007 7:47:21 PM)
well then tell us just what you'll do for your bday -- and make it fun

heather (Jan 31, 2007 7:47:31 PM)
let's have a cyber party

heather (Jan 31, 2007 7:47:45 PM)
sandy - whip us up a cake and some music please

sandyc (Jan 31, 2007 7:47:45 PM)
happy Brithday to you Happy birthday to YOU haPPY BirthDAY dear MAttttttttttttttt Happy Birthday to you!!!!!!!!!!!!!!!!!!!!!!

heather (Jan 31, 2007 7:47:53 PM)
AND MANY MORE

sandyc (Jan 31, 2007 7:48:05 PM)
Are you smiling yet?

heather (Jan 31, 2007 7:48:10 PM)
hehehe i am

heather (Jan 31, 2007 7:48:15 PM)
laughin my butt offf

sandyc (Jan 31, 2007 7:48:16 PM)
I can sing some more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

heather (Jan 31, 2007 7:48:21 PM)
do it

hope2_7 (Jan 31, 2007 7:48:24 PM)
(This user has entered Living with CMT)

heather (Jan 31, 2007 7:48:30 PM)
hi hope

sandyc (Jan 31, 2007 7:48:33 PM)
Matt Are you there!!!!

heather (Jan 31, 2007 7:48:45 PM)
we were just having a cyber bday party for matt

sandyc (Jan 31, 2007 7:48:49 PM)
Matt.........

hope2_7 (Jan 31, 2007 7:48:50 PM)
Hello everyone

matt-c (Jan 31, 2007 7:48:51 PM)
yes i am

kitt (Jan 31, 2007 7:48:52 PM)
(This user has entered Living with CMT)

heather (Jan 31, 2007 7:48:57 PM)
he's having a hard time coming up with something fun to do

heather (Jan 31, 2007 7:49:00 PM)
hi kitt

sandyc (Jan 31, 2007 7:49:02 PM)
Did you like our song!

matt-c (Jan 31, 2007 7:49:05 PM)
hi

matt-c (Jan 31, 2007 7:49:14 PM)
yes i do

kitt (Jan 31, 2007 7:49:19 PM)
Hi Everyone.

matt-c (Jan 31, 2007 7:49:25 PM)
hi

hope2_7 (Jan 31, 2007 7:49:26 PM)
Hi Kitt

heather (Jan 31, 2007 7:49:33 PM)
hope - i was just telling sandy about your shoe suggestion of crocs with afo's

hope2_7 (Jan 31, 2007 7:49:44 PM)
It works well

sandyc (Jan 31, 2007 7:49:46 PM)
GOOD!!! Thats the spirit

sandyc (Jan 31, 2007 7:50:00 PM)
I am going to look into them

sandyc (Jan 31, 2007 7:50:18 PM)
Your Afos fit right in nicely?

hope2_7 (Jan 31, 2007 7:50:49 PM)
Yes. Finally, choices of colors and cute, too

sandyc (Jan 31, 2007 7:50:59 PM)
Sounds nice

hope2_7 (Jan 31, 2007 7:51:24 PM)
Just try on a size a little bigger than what you wear. They are wide enough.

heather (Jan 31, 2007 7:51:45 PM)
hope - sign in

hope2_7 (Jan 31, 2007 7:51:47 PM)
I always had the hardest time with shoes

sandyc (Jan 31, 2007 7:51:48 PM)
I still have to work up the nerve to try and drive with them on..I dont want to wipe out a small town or anything cause I couldnt move my legs fast enough

EZgoing (Jan 31, 2007 7:52:08 PM)
hey guys.. it's book reading time for the little one.. I'll be back shortly...

sandyc (Jan 31, 2007 7:52:25 PM)
Give little one kisses!!!

hope2_7 (Jan 31, 2007 7:52:29 PM)
I have hand controls. Voc. ehab paid for them

sandyc (Jan 31, 2007 7:52:42 PM)
thats wonderful..

matt-c (Jan 31, 2007 7:52:51 PM)
yes

sandyc (Jan 31, 2007 7:53:20 PM)
I just go without my afos if I drive anywhere myself but I dont drive anywhere really anymore

hope2_7 (Jan 31, 2007 7:53:27 PM)
I couldn't continue to drive with my feet--I couldn't feel them, so I couldn't judge how fast I was going or how suddenly I'd stop.

sandyc (Jan 31, 2007 7:53:30 PM)
BRB

hope2_7 (Jan 31, 2007 7:54:02 PM)
It was a riot to be in the car woth me.

hope2_7 (Jan 31, 2007 7:54:58 PM)
If my foot fell off the pedal, I had to look to get it back on. that's when I went to hand contreols. they are easy to use and fun. Voc. Rehab even paid for a driving lesson

hope2_7 (Jan 31, 2007 7:55:51 PM)
Does anyone else have troube driving? or use hand controls

kitt (Jan 31, 2007 7:56:16 PM)
I don't have trouble driving and I don't use hand controls.

heather (Jan 31, 2007 7:56:17 PM)
i do - but it's just my eye-sight - hehe

hope2_7 (Jan 31, 2007 7:56:36 PM)
that's good, Kitt

hope2_7 (Jan 31, 2007 7:56:51 PM)
I like my independence.

kitt (Jan 31, 2007 7:57:07 PM)
Yup, I know. I like my independence too.

heather (Jan 31, 2007 7:58:13 PM)
hey hope - how's the weather in florida

hope2_7 (Jan 31, 2007 7:58:14 PM)
Do you have or use anything to make daily life easier?

hope2_7 (Jan 31, 2007 7:58:34 PM)
good

heather (Jan 31, 2007 7:58:51 PM)
it's supposed to be down in the teens here in texas next week

matt-c (Jan 31, 2007 7:59:00 PM)
ok

hope2_7 (Jan 31, 2007 7:59:14 PM)
I'm cold with 50 degrees

heather (Jan 31, 2007 7:59:17 PM)
i.m.

heather (Jan 31, 2007 7:59:29 PM)
chilled to the bone

heather (Jan 31, 2007 7:59:38 PM)
i dread the cold

heather (Jan 31, 2007 8:00:09 PM)
i.m.

hope2_7 (Jan 31, 2007 8:00:17 PM)
How are you, Matt

matt-c (Jan 31, 2007 8:00:28 PM)
i am fine

hope2_7 (Jan 31, 2007 8:01:07 PM)
(This user has left DigiChat)

hope2_7 (Jan 31, 2007 8:01:32 PM)
(This user has entered Living with CMT)

heather (Jan 31, 2007 8:03:17 PM)
hi hope

matt-c (Jan 31, 2007 8:03:47 PM)
(This user has left DigiChat)

heather (Jan 31, 2007 8:04:07 PM)
sandy and kitt are you all still here?

kitt (Jan 31, 2007 8:04:17 PM)
I am.

matt-c (Jan 31, 2007 8:04:22 PM)
(This user has entered Living with CMT)

heather (Jan 31, 2007 8:04:31 PM)
what's on your mind -- anybody? anyone?

kshank (Jan 31, 2007 8:04:34 PM)
(This user has entered Living with CMT)

kitt (Jan 31, 2007 8:04:41 PM)
Are you having trouble getting booted off Matt?

hope2_7 (Jan 31, 2007 8:04:44 PM)
Somehow I messed up and got offline

kitt (Jan 31, 2007 8:04:54 PM)
Hi kshank.

kshank (Jan 31, 2007 8:05:18 PM)
Hi everyone sorry I'm later again

hope2_7 (Jan 31, 2007 8:05:25 PM)
Hi

heather (Jan 31, 2007 8:05:26 PM)
hi kshank

kitt (Jan 31, 2007 8:05:29 PM)
That's O.K.

matt-c (Jan 31, 2007 8:05:35 PM)
i just got booted off it told me that the connectilon was reset

kitt (Jan 31, 2007 8:05:47 PM)
I see.

kshank (Jan 31, 2007 8:06:02 PM)
It take me like 15 mins to get on

hope2_7 (Jan 31, 2007 8:06:22 PM)
It takes me a while

matt-c (Jan 31, 2007 8:06:23 PM)
hi k

kitt (Jan 31, 2007 8:06:41 PM)
(This user has left DigiChat)

kshank (Jan 31, 2007 8:06:48 PM)
How is everyone tonight

heather (Jan 31, 2007 8:06:54 PM)
good thanks

heather (Jan 31, 2007 8:06:56 PM)
and you?

matt-c (Jan 31, 2007 8:07:07 PM)
fine

kshank (Jan 31, 2007 8:07:16 PM)
I'm doing pretty good

matt-c (Jan 31, 2007 8:07:28 PM)
what's going on k

hope2_7 (Jan 31, 2007 8:07:31 PM)
I'm good, how are you?

kitt (Jan 31, 2007 8:07:52 PM)
(This user has entered Living with CMT)

kshank (Jan 31, 2007 8:07:58 PM)
Heather is your friend in tonight. I see you Hope!!!

heather (Jan 31, 2007 8:08:10 PM)
yes

heather (Jan 31, 2007 8:08:13 PM)
kshank

heather (Jan 31, 2007 8:08:18 PM)
that's my pal

kitt (Jan 31, 2007 8:08:19 PM)
They booted me off.

hope2_7 (Jan 31, 2007 8:08:26 PM)
My sister just got diagnosed with CMT a few weeks ago at age 51.

kshank (Jan 31, 2007 8:08:55 PM)
Sorry to hear that Hope. How is she doing ?

matt-c (Jan 31, 2007 8:08:58 PM)
k you may get booted off

kshank (Jan 31, 2007 8:09:27 PM)
Is that happening to everyone tonight

kitt (Jan 31, 2007 8:09:31 PM)
What kind of symptoms does she have Hope?

hope2_7 (Jan 31, 2007 8:09:31 PM)
ok. I am taking her and her husband to a seminar given by a local neurologist affiliated with MDA

matt-c (Jan 31, 2007 8:09:44 PM)
yes[

hope2_7 (Jan 31, 2007 8:09:52 PM)
numb feet up to her calves, falling

kitt (Jan 31, 2007 8:10:02 PM)
I see.

kshank (Jan 31, 2007 8:10:12 PM)
ooo Hope that will be great

matt-c (Jan 31, 2007 8:10:22 PM)
everyone is getting booted off

kitt (Jan 31, 2007 8:10:32 PM)
Yes, I think so too Matt.

hope2_7 (Jan 31, 2007 8:10:43 PM)
He's been treating a woman I met who has lots of symptoms, dx at an early age.

kshank (Jan 31, 2007 8:10:58 PM)
I will have to see I know it took me a long time to get on

kitt (Jan 31, 2007 8:11:16 PM)
What type of CMT do you and your sister have?

hope2_7 (Jan 31, 2007 8:12:28 PM)
My sister, my mom , and me all have type 2, but that's all I know. I just showed symptoms earlier and have more symptoms than they do.

hope2_7 (Jan 31, 2007 8:12:43 PM)
What about all of you?

matt-c (Jan 31, 2007 8:13:03 PM)
k you arerd probably going to get booted off

kshank (Jan 31, 2007 8:13:18 PM)
my daughter ab=nd I both have 1_a

kitt (Jan 31, 2007 8:13:19 PM)
O.K. The type that one has is the same that everyone will have in the same family. Symptoms might vary greatly even within the same family.

kitt (Jan 31, 2007 8:13:58 PM)
Don't know for sure what type I have but I pretty much think it's the most common type. CMT 1A.

hope2_7 (Jan 31, 2007 8:14:06 PM)
I didn't know that, Kitt about having the same kind.

hope2_7 (Jan 31, 2007 8:14:28 PM)
What are the symptoms of 1-a

matt-c (Jan 31, 2007 8:14:35 PM)
i have cmt type1

kitt (Jan 31, 2007 8:14:39 PM)
Yes, that's how it is. So if one is diagnosed, that's what the others will have.

matt-c (Jan 31, 2007 8:15:03 PM)
how are you?

matt-c (Jan 31, 2007 8:15:08 PM)
kitt

kitt (Jan 31, 2007 8:15:23 PM)
I'm doing O.K. but it's cold here:(

hope2_7 (Jan 31, 2007 8:15:33 PM)
Yet, there's a 50-50 chance some sibs won't have it. I have 1 sister and 1 brother with no signs

kitt (Jan 31, 2007 8:16:01 PM)
Yes, that's true. Each child has a 50/50 chance of having it.

kshank (Jan 31, 2007 8:16:19 PM)
yes Kitt that is right. Because I was going to havce my daughter tested but they said she will have the same kind has I do no need to test

hope2_7 (Jan 31, 2007 8:16:26 PM)
What is different about 1-a

kitt (Jan 31, 2007 8:16:46 PM)
You can develop symptoms when you are young, old or in-between. Or sometimes symptoms aren't evident but you still can pass it on.

hope2_7 (Jan 31, 2007 8:17:18 PM)
that's news to me , too

kitt (Jan 31, 2007 8:17:44 PM)
Did you know that there are around 20 types of CMT that they can do a DNA blood test for?

kshank (Jan 31, 2007 8:17:44 PM)
I was dx at the age of 2 and my daughter was dx at 9 on her 9 birthday

kitt (Jan 31, 2007 8:18:08 PM)
And there are over 40 types that they do not have a DNA blood test for.

hope2_7 (Jan 31, 2007 8:18:51 PM)
I didn't see the point of DNA testing, and insurance wouldn't pay for it. since I couldn't see how it would change anything.

hope2_7 (Jan 31, 2007 8:19:18 PM)
really? It's all so curious to me

matt-c (Jan 31, 2007 8:19:38 PM)
(This user has left DigiChat)

kitt (Jan 31, 2007 8:19:57 PM)
One place that the testing is sent to is http://www.athenadiagnostics.com I do believe they have a program to help with the cost.

hope2_7 (Jan 31, 2007 8:20:30 PM)
what good does the testing do, if you've already had children?

kshank (Jan 31, 2007 8:20:48 PM)
oo Kitt I didn't now that

kitt (Jan 31, 2007 8:20:53 PM)
I don't see the point of testing either unless you really want to know. And then, like I said, it only takes one from the family who probably has CMT.

hope2_7 (Jan 31, 2007 8:21:16 PM)
I was the first one disgnosed.

kitt (Jan 31, 2007 8:21:23 PM)
There really isn't anything a person can do right now other than take care of things as they come along.

sandyc (Jan 31, 2007 8:22:01 PM)
The mda clinic paid for my genetic blood testing nothing out of my pocket

matt-c (Jan 31, 2007 8:22:14 PM)
(This user has entered Living with CMT)

kitt (Jan 31, 2007 8:22:28 PM)
As far as having children, that's a good subject. I always say there are a lot worse things than having CMT.

hope2_7 (Jan 31, 2007 8:22:30 PM)
yes, that's what I heard. And look for easy living tools as needed. I use the AFO's and a cane

matt-c (Jan 31, 2007 8:22:43 PM)
did you all get booted off?

kshank (Jan 31, 2007 8:22:53 PM)
well I think its better to be tested early becaud=se you now you need to take care of your self better

kitt (Jan 31, 2007 8:23:00 PM)
Yes, I use a cane on unfamiliar ground. I imagine I will have AFO's one day.

kshank (Jan 31, 2007 8:23:03 PM)
I'll be right back

kshank (Jan 31, 2007 8:23:14 PM)
Oscar needs to go out

matt-c (Jan 31, 2007 8:23:21 PM)
okay

hope2_7 (Jan 31, 2007 8:23:36 PM)
Whos Oscar? Dog...what kind?

kitt (Jan 31, 2007 8:23:36 PM)
I try to eat healthy and just try and take care of myself as I always have tried to do.

hope2_7 (Jan 31, 2007 8:24:07 PM)
I'm probably not as good at that. I do too much nd push myself

sandyc (Jan 31, 2007 8:24:11 PM)
I had no idea anything was wrong til my late 30s I was diadnosed Dec 2005

matt-c (Jan 31, 2007 8:24:26 PM)
it

matt-c (Jan 31, 2007 8:24:27 PM)
it's a dog

kitt (Jan 31, 2007 8:24:51 PM)
I can't remember what kind of dog. Do you remember Matt?

EZgoing (Jan 31, 2007 8:25:17 PM)
I'm back finally... Here is a link to a good site that shows all of the current sub-types of CMT known so far.. http://www.neuro.wustl.edu/neuromuscular/time/hmsn.html

matt-c (Jan 31, 2007 8:25:19 PM)
no i don't

sandyc (Jan 31, 2007 8:25:35 PM)
within 5 or six years all sensation in hands feet and legs were gone

kitt (Jan 31, 2007 8:25:38 PM)
Hi EZ :)

EZgoing (Jan 31, 2007 8:26:30 PM)
As far as testing, at the current moment, you all are right, it really doesn't make a difference.. but not sure if you know that clinical trials are going on right now for 1A... there IS hope..

matt-c (Jan 31, 2007 8:26:36 PM)
Has anyone else on here got booted off

EZgoing (Jan 31, 2007 8:26:40 PM)
Hi Kitt.. and everyone else

matt-c (Jan 31, 2007 8:26:46 PM)
hi

kitt (Jan 31, 2007 8:26:50 PM)
Yes, I know about those trials.

EZgoing (Jan 31, 2007 8:26:55 PM)
I have a good stable connection tonight for some reason Matt..

EZgoing (Jan 31, 2007 8:27:12 PM)
ok.. just putting it out there Kitt..

kitt (Jan 31, 2007 8:27:25 PM)
Yup :)

hope2_7 (Jan 31, 2007 8:27:42 PM)
Hi and thanks for all the info everyone. It's nice to hear about others and what people know

EZgoing (Jan 31, 2007 8:27:56 PM)
if they find good results with this trial, and the next few that they will do, then knowing that you have 1A will be a BIG advantage... there will be help out there for you

matt-c (Jan 31, 2007 8:28:06 PM)
for some rewason i keep getting booted off

hope2_7 (Jan 31, 2007 8:28:25 PM)
Sorry, Matt.

EZgoing (Jan 31, 2007 8:28:30 PM)
Not a good thing on your B-day Matt...

kitt (Jan 31, 2007 8:28:32 PM)
Matt do you hit the enter or send message?

hope2_7 (Jan 31, 2007 8:28:42 PM)
In that case, it would be beneficial to know. I never hear about trials

heather (Jan 31, 2007 8:28:51 PM)
are you running any extra programs in the background matt - maybe close all of the programs you aren't working with - that may help

kitt (Jan 31, 2007 8:29:26 PM)
That's what happened to me a bit ago.

EZgoing (Jan 31, 2007 8:29:34 PM)
things are coming along quickly Hope... not as fast as we would like them... but they are just around the corner.... Our kids will benefit from the tests going on now

matt-c (Jan 31, 2007 8:29:48 PM)
i am not runningf any extra progrsams heather

matt-c (Jan 31, 2007 8:29:51 PM)
kitt i hit the enter kiey

EZgoing (Jan 31, 2007 8:30:02 PM)
enter key here too..

kitt (Jan 31, 2007 8:30:04 PM)
Matt, try send message.

sandyc (Jan 31, 2007 8:30:07 PM)
I need to buy one of those thingys that help with buttons my fingers just dont work

EZgoing (Jan 31, 2007 8:30:41 PM)
Are you talking about Dragon Naturally Speaking type of thing Sandy?

sandyc (Jan 31, 2007 8:30:53 PM)
hard to button my grandaughters clothes..I tell her mommy to pack only strechy things

matt-c (Jan 31, 2007 8:30:56 PM)
try sending a message to who kitt?

hope2_7 (Jan 31, 2007 8:31:11 PM)
I saw a button hook in a catalog and a thing for zippers. I have a hard time with buttons and doors

sandyc (Jan 31, 2007 8:31:21 PM)
I dont know what its called..LOL the PT showed me one

kitt (Jan 31, 2007 8:31:30 PM)
Matt, you have send message on the right hand side. So when you post here, try that.

matt-c (Jan 31, 2007 8:32:04 PM)
okay

sandyc (Jan 31, 2007 8:32:11 PM)
wish I could find something to help open jars too I have no hand strength left either

hope2_7 (Jan 31, 2007 8:32:25 PM)
me, too

kitt (Jan 31, 2007 8:32:34 PM)
Don't they make something to open jars? Seems like they do.

matt-c (Jan 31, 2007 8:32:41 PM)
i tryed the send message

hope2_7 (Jan 31, 2007 8:32:41 PM)
The gadgets sold in stores do not help me

EZgoing (Jan 31, 2007 8:32:48 PM)
Sandy, there is a jar opener made by Black and Decker I believe... was looking at them at x-mas time

matt-c (Jan 31, 2007 8:33:09 PM)
you are right

sandyc (Jan 31, 2007 8:33:15 PM)
has anyone tried those suction cup bathroom rails for the tub? are they any good..

kitt (Jan 31, 2007 8:33:24 PM)
O.K. Matt maybe it will work now and not kick you off.

matt-c (Jan 31, 2007 8:33:27 PM)
i have

kitt (Jan 31, 2007 8:33:54 PM)
I've seen those rails for the tub and thought they would be good when traveling too.

sandyc (Jan 31, 2007 8:34:07 PM)
I am not to stable getting in and out of the shower its like I am a drunk

kshank (Jan 31, 2007 8:34:21 PM)
Ok Sorry I need to take Oscar out and get Ami in the shower

kitt (Jan 31, 2007 8:34:28 PM)
Our local big drug store has all those type of things for handicapped people.

sandyc (Jan 31, 2007 8:34:32 PM)
I was wondering if they are any good

kitt (Jan 31, 2007 8:34:43 PM)
I think they are Sandy.

hope2_7 (Jan 31, 2007 8:35:01 PM)
I had my husband and dad install a metal bar in the shower and by the toilet. I hate trying to figure out how to get out of the tub, so I gave up baths.

kitt (Jan 31, 2007 8:35:36 PM)
I think those suction cup ones are not good for ceramic or glass walls. Not sure. It says on them I'm sure.

sandyc (Jan 31, 2007 8:35:38 PM)
Yup I gave up baths too I miss them so but its such a struggle getting up and down now its kinda scarey for me

matt-c (Jan 31, 2007 8:35:39 PM)
okay

matt-c (Jan 31, 2007 8:35:41 PM)
hi

kitt (Jan 31, 2007 8:36:07 PM)
Me too. I only do showers anymore.

hope2_7 (Jan 31, 2007 8:36:11 PM)
I thought I could kind of fall out of the tub, but it scared me to try

sandyc (Jan 31, 2007 8:36:29 PM)
its funny how sooo many things just start to slip away from us we just have to keep adjusting

kitt (Jan 31, 2007 8:36:35 PM)
I could get in the tub but I don't think I'd ever get out.

EZgoing (Jan 31, 2007 8:36:35 PM)
Sandy, they are ok just to help steady yourself, but if you really NEED it to help keep you from a fall, they are not that good

kshank (Jan 31, 2007 8:36:37 PM)
We love the metal rods in the showers we have them in both bathrooms

hope2_7 (Jan 31, 2007 8:36:45 PM)
that's me, Kitt

kitt (Jan 31, 2007 8:37:18 PM)
We have metal rods on our tub wall where we shower.

sandyc (Jan 31, 2007 8:37:22 PM)
so they are good just to stablize ..that would be help ful I didnt think they would be for full pulling

hope2_7 (Jan 31, 2007 8:37:27 PM)
When I have fallen, it's very awkward to have someone try to help you up, too

hope2_7 (Jan 31, 2007 8:37:45 PM)
It's a comedy routine

sandyc (Jan 31, 2007 8:38:04 PM)
I know I always say NO I can do it myself and I crawl to the nearest couch or chair and struggle like a giant whale

EZgoing (Jan 31, 2007 8:38:08 PM)
Kitt, try leaving the tub full of water when trying to get out.. it helps in making you more bouyant. Easier to get out

kitt (Jan 31, 2007 8:38:08 PM)
:) :) :)

kshank (Jan 31, 2007 8:38:09 PM)
no not at all Sandy

kitt (Jan 31, 2007 8:38:34 PM)
No, I won't be doing baths EZ.

sandyc (Jan 31, 2007 8:38:53 PM)
I have the hardest time to ask someone to help I always try and show them I can do it

hope2_7 (Jan 31, 2007 8:38:58 PM)
I'm stubborn and say I can do things that I struggle with. My husband gets mad at me

kshank (Jan 31, 2007 8:38:58 PM)
Really EZ I didn't know that

hope2_7 (Jan 31, 2007 8:39:44 PM)
Asking for help is extremely difficult for me, too

kitt (Jan 31, 2007 8:39:53 PM)
Same here.

EZgoing (Jan 31, 2007 8:39:54 PM)
We all get a bit stubborn at times... not wanting to admit that CMT has taken the next thing away from us..

sandyc (Jan 31, 2007 8:40:03 PM)
but its so stupid of me I end up hurting myself more..plus I have 2 ruptured disks in my spine and advanced degenrative disk disease so when I sturggle or fall the pain is soooooooooo severe then I get mad and cry

hope2_7 (Jan 31, 2007 8:40:05 PM)
Sometimes I think I can do things and then find out I can't

EZgoing (Jan 31, 2007 8:40:11 PM)
Yep Kshank.. try it.. it does help

kshank (Jan 31, 2007 8:40:13 PM)
I think it is with everyone with CMT

EZgoing (Jan 31, 2007 8:41:11 PM)
I think we all know that feeling Sandy... same issues herre, minus the ruptured disks

kshank (Jan 31, 2007 8:41:12 PM)
I will after chat tonight thank you EZ

hope2_7 (Jan 31, 2007 8:41:28 PM)
Sandy, walking and compensating make other parts of our body injured

sandyc (Jan 31, 2007 8:41:44 PM)
yup

TipaCow (Jan 31, 2007 8:41:45 PM)
(This user has entered Living with CMT)

EZgoing (Jan 31, 2007 8:41:49 PM)
there are a lot of tricks that many can use to help to keep doing what we need to do.. just have to be creative at times

hope2_7 (Jan 31, 2007 8:42:02 PM)
I had a disk removed in my lower back, shoulder surgery, wrist surgery

kshank (Jan 31, 2007 8:42:03 PM)
Hi tipacow

EZgoing (Jan 31, 2007 8:42:06 PM)
Hi Tipa..

sandyc (Jan 31, 2007 8:42:09 PM)
LOL aint that the truth!!

matt-c (Jan 31, 2007 8:42:20 PM)
k what is ez talking to you about

kshank (Jan 31, 2007 8:42:23 PM)
NICE NAME TIPACOW hahahahaha

TipaCow (Jan 31, 2007 8:42:25 PM)
hi

sandyc (Jan 31, 2007 8:42:25 PM)
we certainly learn to improvise

EZgoing (Jan 31, 2007 8:42:27 PM)
Hope, you are so right... it's the cause of much of our back pain, hip strain etc..

kitt (Jan 31, 2007 8:42:41 PM)
Hi TipaCow.

EZgoing (Jan 31, 2007 8:43:10 PM)
I've said that having CMt makes us efficency experts... LOL

matt-c (Jan 31, 2007 8:43:10 PM)
hi tipacow

hope2_7 (Jan 31, 2007 8:43:26 PM)
I agree and creative is right, too

sandyc (Jan 31, 2007 8:43:27 PM)
I never get a great nites sleep either my back scatica is just awful and all my pains seem to intensify at nite when I just ant to sleep

EZgoing (Jan 31, 2007 8:43:38 PM)
Matt, I was just trying to explain that if you leave the tub full of water, it makes it easier to get out of is all..

matt-c (Jan 31, 2007 8:44:17 PM)
okay

EZgoing (Jan 31, 2007 8:44:34 PM)
doesn't always work, but try sleeping with a pillow under your knees Sandy.. helps mine some of the time

EZgoing (Jan 31, 2007 8:44:59 PM)
many of us with CMT, also have an issue of Sleep Apnea... ever been tested?

matt-c (Jan 31, 2007 8:45:19 PM)
hi tipacow

sandyc (Jan 31, 2007 8:45:22 PM)
I do that but I cant seem to lay on my back to long or side to long I usally end up on the couch with a heating pad

hope2_7 (Jan 31, 2007 8:45:34 PM)
I am a school social worker with 3 schools--carrying things- folder, laptop, books is so hard. i got a pull a long brief case, but that's hard, too. any ideas to make it easier

sandyc (Jan 31, 2007 8:45:37 PM)
No whats that?

kshank (Jan 31, 2007 8:46:27 PM)
EZ my hubby said thats not for me the way I roll in my sleep he said the pillow would be under hes knees not mine.lol

TipaCow (Jan 31, 2007 8:46:50 PM)
hope, get a pull cart on wheels - kinda like baggage pull caryt

hope2_7 (Jan 31, 2007 8:47:00 PM)
what cuses the sleep apnea

matt-c (Jan 31, 2007 8:47:00 PM)
Well hope i have an idea for you?

hope2_7 (Jan 31, 2007 8:47:14 PM)
thanks. I will

sandyc (Jan 31, 2007 8:47:22 PM)
yup I drive my husband crazy he says I toss and turn like every few minutes and that I always am kicking my legs like I am running he hates it

EZgoing (Jan 31, 2007 8:47:32 PM)
Sleep Apnea is when you actually stop breathing during your sleep.. due to a restriction, or obstruction or can be due to your CMT due to Phrenic nerve involvement...

matt-c (Jan 31, 2007 8:47:36 PM)
hope what are the 3 schools you work at?

EZgoing (Jan 31, 2007 8:47:41 PM)
LOL Kshank..

hope2_7 (Jan 31, 2007 8:48:05 PM)
an elementary, middle and high school

EZgoing (Jan 31, 2007 8:48:09 PM)
I've seen a crate.. like a milk crate with a handle and wheels.. would that help?

sandyc (Jan 31, 2007 8:48:21 PM)
LOL I wonder if I even sleep long enough to stop breathing? how do they test you

hope2_7 (Jan 31, 2007 8:48:26 PM)
maybe, I'm going to see whast I can find

EZgoing (Jan 31, 2007 8:48:40 PM)
You should be checked by a sleep study Sandy..

sandyc (Jan 31, 2007 8:48:50 PM)
who would do that?

sandyc (Jan 31, 2007 8:49:15 PM)
I mean like who would I talk too abouth that

matt-c (Jan 31, 2007 8:49:15 PM)
hop0e which highschool, and middloe school do you work at?

kshank (Jan 31, 2007 8:49:22 PM)
They have places that do just sleep studys

EZgoing (Jan 31, 2007 8:49:28 PM)
several doctors can order it.. often a neurologist..

hope2_7 (Jan 31, 2007 8:49:34 PM)
In Florida

TipaCow (Jan 31, 2007 8:49:43 PM)
sleep apnea is common amongst many, many people - I have ALS and have apnea very bad.. hnave to use oxygen with a bipap machine. My neighbor is healthy, but also has apnea, and uses a C-pap machine at night

sandyc (Jan 31, 2007 8:50:05 PM)
intresting do I tell them I dont ever sleep well?

kitt (Jan 31, 2007 8:50:36 PM)
You have ALS TipaCow?

EZgoing (Jan 31, 2007 8:50:49 PM)
they place a bunch of probe pads on your skin.. head, face, arms, legs etc.. and hook you up to a computer, and tell you to sleep away.. YEAH RIGHT... but they see how you sleep, if you reach REM, snore, stop breathing etc...

sandyc (Jan 31, 2007 8:51:07 PM)
Ohh

sandyc (Jan 31, 2007 8:51:17 PM)
have you had it done?

kshank (Jan 31, 2007 8:51:25 PM)
Sandy Yes you say your sleeps is very restless

matt-c (Jan 31, 2007 8:51:31 PM)
sandy yes do need to tell them that you do not sleep well

EZgoing (Jan 31, 2007 8:51:33 PM)
Very true Tipa.. many have it... but it seems that many more than the norm have it if they also have CMT..

matt-c (Jan 31, 2007 8:51:41 PM)
hi

sandyc (Jan 31, 2007 8:51:44 PM)
thats the truth! LOL

TipaCow (Jan 31, 2007 8:51:59 PM)
ur doctor can write an RX for an over night oxymitry test, and a respitory company will bring a little gadget out that clamps on ur finger that measures ur oxygen while u sleep

EZgoing (Jan 31, 2007 8:52:14 PM)
You could also have what they call Restless Leg Syndrome... and that is often treatable with meds...

TipaCow (Jan 31, 2007 8:52:15 PM)
yes kitt, I have ALSA

TipaCow (Jan 31, 2007 8:52:23 PM)
ALS*

matt-c (Jan 31, 2007 8:52:35 PM)
hi

EZgoing (Jan 31, 2007 8:52:36 PM)
and yes.. I use a CPap...

kitt (Jan 31, 2007 8:52:44 PM)
How long have you know that TipaCow?

TipaCow (Jan 31, 2007 8:53:18 PM)
12 years

kitt (Jan 31, 2007 8:53:27 PM)
I see.

sandyc (Jan 31, 2007 8:54:05 PM)
yup my legs feel like surging creepy crawlies..its awful with that and the back pain I take nortrypline for at bedtime for neropthic pain I guess it must work for the creepy crawlies in my legs

kshank (Jan 31, 2007 8:54:10 PM)
wow Tipacow how are you doing with your ALS

EZgoing (Jan 31, 2007 8:54:23 PM)
The oxymitry test is good to see if there is an oxygen level issue, but a sleep study will tell that, along with lots of information on RLS, sleep apnea etc

sandyc (Jan 31, 2007 8:54:38 PM)
I will mention it to the Dr

matt-c (Jan 31, 2007 8:54:49 PM)
kitt how are you?

sandyc (Jan 31, 2007 8:55:02 PM)
I pray for a good nites sleep one where you sleep at nite till morning

hope2_7 (Jan 31, 2007 8:55:12 PM)
I saw a show with a famous physicist with ALS--Hawking is his name. He discovered the big bang theory re: te universe and a theory on blackholes. He was remarkable with his ability to think and still communicate and move with technology

kitt (Jan 31, 2007 8:55:13 PM)
I'm fine Matt; just cold here.

TipaCow (Jan 31, 2007 8:55:23 PM)
very god kshank, ty it's slow in progression, thank God

hope2_7 (Jan 31, 2007 8:55:39 PM)
He is 64 now, diagnosed at 21

TipaCow (Jan 31, 2007 8:56:03 PM)
good*

kitt (Jan 31, 2007 8:56:12 PM)
Yup, Hope I saw that too. But was he that young when diagnosed?

kshank (Jan 31, 2007 8:56:12 PM)
thats good Tipacow

hope2_7 (Jan 31, 2007 8:56:43 PM)
that's what it said...married ...had children

sandyc (Jan 31, 2007 8:56:57 PM)
Nice talking to you all tonite thanks for the info have a nice week

TipaCow (Jan 31, 2007 8:57:09 PM)
gotta go dinner time lol cyas ;)

hope2_7 (Jan 31, 2007 8:57:17 PM)
still helping the world understand the universe and teaching others

heather (Jan 31, 2007 8:57:18 PM)
good night sandy and tipacow

kshank (Jan 31, 2007 8:57:25 PM)
SAndy thanks for stopping by to chat tonight

EZgoing (Jan 31, 2007 8:57:25 PM)
Here is a link to that jar opener that I was talking about... or one like it anyway.. http://www.dynamic-living.com/lids-off-jar-opener.htm

hope2_7 (Jan 31, 2007 8:57:32 PM)
good night

kshank (Jan 31, 2007 8:57:40 PM)
good night

EZgoing (Jan 31, 2007 8:57:45 PM)
Nite Sandy..

sandyc (Jan 31, 2007 8:57:51 PM)
Thanks for having me its nice to share with others who know what its like

kitt (Jan 31, 2007 8:57:52 PM)
Good night and have a great week everyone :)

EZgoing (Jan 31, 2007 8:57:54 PM)
Take care Tips

EZgoing (Jan 31, 2007 8:57:58 PM)
tipa

EZgoing (Jan 31, 2007 8:58:00 PM)
sorry

matt-c (Jan 31, 2007 8:58:03 PM)
(This user has left DigiChat)

sandyc (Jan 31, 2007 8:58:18 PM)
(This user has left DigiChat)

kitt (Jan 31, 2007 8:58:20 PM)
(This user has left DigiChat)

hope2_7 (Jan 31, 2007 8:58:38 PM)
Thank you for all the sharing and ideas, and help

EZgoing (Jan 31, 2007 8:59:13 PM)
that is what a chat like this is suppose to be for... or at least I think so.. LOL

hope2_7 (Jan 31, 2007 8:59:23 PM)
This was a good talk

kshank (Jan 31, 2007 8:59:24 PM)
Hope we had a great turn out tonight for chatters

EZgoing (Jan 31, 2007 8:59:25 PM)
share and help each other

TipaCow (Jan 31, 2007 8:59:30 PM)
(This user has moved to Living with ALS)

hope2_7 (Jan 31, 2007 8:59:50 PM)
yes, I loved it

hope2_7 (Jan 31, 2007 9:00:13 PM)
Talking with people who understand and know what I have felt and thought and others who know more

kshank (Jan 31, 2007 9:00:16 PM)
Yes EZ your right

kshank (Jan 31, 2007 9:00:29 PM)
We are all like family here

EZgoing (Jan 31, 2007 9:00:45 PM)
I used to help run an on line support group, and studied CMT research for 5+ years... so I learned a few things along the way, and try to help when ever I can..

hope2_7 (Jan 31, 2007 9:00:46 PM)
yes. It feels that way, yet we are miles apart

hope2_7 (Jan 31, 2007 9:01:11 PM)
that is great. thank you. I learned some things tonight

EZgoing (Jan 31, 2007 9:01:22 PM)
the "alone" feeling is one of the hardest to deal with Hope... and groups like this help a lot

hope2_7 (Jan 31, 2007 9:01:35 PM)
and feeling different

kshank (Jan 31, 2007 9:01:54 PM)
I know but its still great to know you have close friends that know what you are going to be feeling

hope2_7 (Jan 31, 2007 9:02:02 PM)
yes

EZgoing (Jan 31, 2007 9:02:14 PM)
I've always been the odd ball out hope.. LOL

hope2_7 (Jan 31, 2007 9:02:39 PM)
me, too and always trying to be and walk like everyone else

EZgoing (Jan 31, 2007 9:02:39 PM)
so that's nothing new to me..

kshank (Jan 31, 2007 9:02:46 PM)
I hope no one feels like that here.

hope2_7 (Jan 31, 2007 9:03:04 PM)
Everyne is so nice and open. It helps a lot

kshank (Jan 31, 2007 9:03:20 PM)
Yes Hope you are right thats soo much like me too

hope2_7 (Jan 31, 2007 9:03:25 PM)
Tonight was very important to me

EZgoing (Jan 31, 2007 9:03:44 PM)
I've gotten to the point that I say scr*w em... I am what I am, I have what I have and if they don't like me, that's fine by me as I have gotten along this long with out them, I can continue on with out them

hope2_7 (Jan 31, 2007 9:04:13 PM)
other people say thr stupidest things, don't thry

kshank (Jan 31, 2007 9:04:27 PM)
Hope I'm sooo glad you came in tonight Heather was trying to get you last week but no awser

EZgoing (Jan 31, 2007 9:04:53 PM)
Just glad to hear that what everyone had to say helped on some level Hope.. and that I may have had a small part of it all..

hope2_7 (Jan 31, 2007 9:04:57 PM)
went out with my son and his pregnant wife. first child for them

hope2_7 (Jan 31, 2007 9:05:32 PM)
you had no small part but a large part, and Kitt and K...everyone

EZgoing (Jan 31, 2007 9:05:48 PM)
getting out often helps on many levels, but it usually exhausts me... I'd rather stay home and work on the house..

hope2_7 (Jan 31, 2007 9:06:32 PM)
I understand. Getting out...working is exhausting. I have 4 yrs and I can retire from the school system with pension

EZgoing (Jan 31, 2007 9:06:58 PM)
YOu are more than welcome to contact me anytime... I don't have all the answers.. but can try... or be a good listener...

kshank (Jan 31, 2007 9:07:06 PM)
Hope and EZ Thank you so much for stoppin by to chat tonight I think we had a great chat tonight

EZgoing (Jan 31, 2007 9:07:24 PM)
oh.. it's THAT time again... huh?

hope2_7 (Jan 31, 2007 9:07:30 PM)
I think so too. thank you. thank you, EZ I appreciate that.

hope2_7 (Jan 31, 2007 9:07:47 PM)
I may pick your brain

EZgoing (Jan 31, 2007 9:07:48 PM)
I'll try to stop in here a bit more often

hope2_7 (Jan 31, 2007 9:07:54 PM)
please do

kshank (Jan 31, 2007 9:08:06 PM)
Yes Hope thats goes for me too you can email me anytimd

EZgoing (Jan 31, 2007 9:08:07 PM)
not much gray matter left up there, but your welcome to pick away... LOL

hope2_7 (Jan 31, 2007 9:08:16 PM)
funny

hope2_7 (Jan 31, 2007 9:08:27 PM)
Good night

EZgoing (Jan 31, 2007 9:08:33 PM)
nite Hope..

hope2_7 (Jan 31, 2007 9:08:40 PM)
(This user has left DigiChat)

kshank (Jan 31, 2007 9:08:42 PM)
Yes EZ please dp

kshank (Jan 31, 2007 9:08:48 PM)
please do

EZgoing (Jan 31, 2007 9:08:52 PM)
do what?

heather (Jan 31, 2007 9:08:58 PM)
thank you everyone

heather (Jan 31, 2007 9:09:04 PM)
you all are great

kshank (Jan 31, 2007 9:09:07 PM)
stop by anytime

EZgoing (Jan 31, 2007 9:09:13 PM)
Heather... your still lurking...

heather (Jan 31, 2007 9:09:14 PM)
:)

heather (Jan 31, 2007 9:09:18 PM)
i am ex

heather (Jan 31, 2007 9:09:20 PM)
ez

EZgoing (Jan 31, 2007 9:09:20 PM)
guess you are a quiet one..

heather (Jan 31, 2007 9:09:24 PM)
yes

heather (Jan 31, 2007 9:09:26 PM)
hehe

EZgoing (Jan 31, 2007 9:09:32 PM)
lol

heather (Jan 31, 2007 9:09:33 PM)
good stuff ez

heather (Jan 31, 2007 9:09:39 PM)
you helped my friend out alot

EZgoing (Jan 31, 2007 9:09:41 PM)
just trying to help..

EZgoing (Jan 31, 2007 9:09:50 PM)
K, these chats still archived

EZgoing (Jan 31, 2007 9:09:51 PM)
?

heather (Jan 31, 2007 9:09:53 PM)
job well done

heather (Jan 31, 2007 9:10:04 PM)
kshank - thanks for being so kind to hope

heather (Jan 31, 2007 9:10:09 PM)
she really appreciates

heather (Jan 31, 2007 9:10:10 PM)
it

heather (Jan 31, 2007 9:10:12 PM)
as do i

EZgoing (Jan 31, 2007 9:10:19 PM)
just trying to help is all..

kshank (Jan 31, 2007 9:10:21 PM)
EZ is great for that helping people out. MORE THEN HE KNOWS

heather (Jan 31, 2007 9:10:38 PM)
you too kshank

heather (Jan 31, 2007 9:10:44 PM)
kindness goes a long way

kshank (Jan 31, 2007 9:11:04 PM)
yes Heather you are right

heather (Jan 31, 2007 9:11:08 PM)
hope says you all were very helpful and this chat meant alot to her

EZgoing (Jan 31, 2007 9:11:08 PM)
only doing my share... and trying not to waste all those years of going through those medical studies and reports.. LOL

kshank (Jan 31, 2007 9:11:23 PM)
EZ are you getting snow tomorrow

EZgoing (Jan 31, 2007 9:11:38 PM)
not much expected... but cold is on the way big time

heather (Jan 31, 2007 9:11:42 PM)
i'm going to talk more with hope

heather (Jan 31, 2007 9:11:47 PM)
you all have a nice night

EZgoing (Jan 31, 2007 9:11:52 PM)
this weekend.. -4 one night

heather (Jan 31, 2007 9:11:52 PM)
see ya next week

heather (Jan 31, 2007 9:12:07 PM)
thanks for making me feel welcome too

EZgoing (Jan 31, 2007 9:12:10 PM)
give her a hug from me Heather

kshank (Jan 31, 2007 9:12:16 PM)
WOW thats cold

EZgoing (Jan 31, 2007 9:12:30 PM)
colder than I want to be out in..

kshank (Jan 31, 2007 9:12:35 PM)
Ok Heather talk to oyu next week

EZgoing (Jan 31, 2007 9:12:44 PM)
and now that I'm on disability, I DON"T HAVE TO BE OUT IN IT>>> LOL

kshank (Jan 31, 2007 9:13:21 PM)
lol yes thats the best part right EZ

EZgoing (Jan 31, 2007 9:13:38 PM)
I think I'm heading out too K... have yourself a good and quiet and warm week...

kshank (Jan 31, 2007 9:13:57 PM)
ok Talk to you all next week

heather (Jan 31, 2007 9:14:05 PM)
k

kshank (Jan 31, 2007 9:14:06 PM)
Need to put Ami to bed

heather (Jan 31, 2007 9:14:11 PM)
still there

EZgoing (Jan 31, 2007 9:14:16 PM)
is there any way to send a private msg with this forum?

heather (Jan 31, 2007 9:14:27 PM)
yes - double click the person's name

heather (Jan 31, 2007 9:14:30 PM)
i think

kshank (Jan 31, 2007 9:14:30 PM)
Yes Heather I'm still here

heather (Jan 31, 2007 9:14:55 PM)
k i wanted to tell you that my friend hope was down on her luck and needed some good friends around

heather (Jan 31, 2007 9:15:06 PM)
you all filled that void this evening

heather (Jan 31, 2007 9:15:16 PM)
it was much deeper than just a cmt chat for her

heather (Jan 31, 2007 9:15:30 PM)
i want to thank you so much for that

heather (Jan 31, 2007 9:15:37 PM)
she is feeling much better

heather (Jan 31, 2007 9:15:45 PM)
you all are good people

heather (Jan 31, 2007 9:15:59 PM)
and i am honored to be amongst such compassion and love

EZgoing (Jan 31, 2007 9:15:59 PM)
here is my email address... EZgoing2@npacc.net

TipaCow (Jan 31, 2007 9:16:06 PM)
(This user has entered Living with CMT)

EZgoing (Jan 31, 2007 9:16:18 PM)
glad to help how ever we can Heather...

kshank (Jan 31, 2007 9:16:25 PM)
I'm soo glad we make for feel sooooo good

EZgoing (Jan 31, 2007 9:16:44 PM)
Here is my email address... EZgoing2@npacc.net

kshank (Jan 31, 2007 9:16:50 PM)
WE love alll our CMT friends with or without it

EZgoing (Jan 31, 2007 9:17:05 PM)
yep... one big happy family.. LOL

heather (Jan 31, 2007 9:17:13 PM)
you wouldn't believe the depth of it all kshank -- and you all have made me feel very accepted and loved - that's a biggie for me too