Living with ALS

Brenda (Jun 17, 2009 6:08:15 PM)
(This user has entered Living with ALS)

Jim_VA (Jun 17, 2009 6:09:14 PM)
hi Brends

Jim_VA (Jun 17, 2009 6:09:47 PM)
how are you tonight

Brenda (Jun 17, 2009 6:10:14 PM)
(This user has left DigiChat)

Brenda (Jun 17, 2009 6:52:23 PM)
(This user has entered Living with ALS)

Brenda (Jun 17, 2009 6:52:27 PM)
(This user has left DigiChat)

Brenda (Jun 17, 2009 6:52:45 PM)
(This user has entered Living with ALS)

Brenda (Jun 17, 2009 6:52:53 PM)
(This user has left DigiChat)

larrye (Jun 17, 2009 7:35:20 PM)
(This user has entered Living with ALS)

larrye (Jun 17, 2009 7:36:06 PM)
hi jim

Jim_VA (Jun 17, 2009 7:36:10 PM)
hi

larrye (Jun 17, 2009 7:36:34 PM)
i hope im welcome here as i have sma

larrye (Jun 17, 2009 7:36:52 PM)
are you from virginia ?

Jim_VA (Jun 17, 2009 7:37:08 PM)
how are you tonight

larrye (Jun 17, 2009 7:37:21 PM)
im great how about you

Jim_VA (Jun 17, 2009 7:37:51 PM)
yes virginia

larrye (Jun 17, 2009 7:38:08 PM)
what part of virginia jim ?

Jim_VA (Jun 17, 2009 7:38:24 PM)
I am fine ty

Jim_VA (Jun 17, 2009 7:38:41 PM)
arlington

larrye (Jun 17, 2009 7:39:06 PM)
your just up the road from me a bit

larrye (Jun 17, 2009 7:39:18 PM)
im in fredericksburg

Jim_VA (Jun 17, 2009 7:39:52 PM)
wow

larrye (Jun 17, 2009 7:40:26 PM)
ya near massaponex

larrye (Jun 17, 2009 7:40:55 PM)
off 208

Jim_VA (Jun 17, 2009 7:41:42 PM)
what is sma

larrye (Jun 17, 2009 7:42:00 PM)
spinal muscular atrophy

larrye (Jun 17, 2009 7:42:41 PM)
i have just two more weeks in va im moveing to canada soon

Jim_VA (Jun 17, 2009 7:42:52 PM)
oh my

larrye (Jun 17, 2009 7:43:08 PM)
with my fiancee of 7 years

larrye (Jun 17, 2009 7:43:40 PM)
we are getting married in july

Jim_VA (Jun 17, 2009 7:43:43 PM)
nice

larrye (Jun 17, 2009 7:44:07 PM)
she has scarmd

Wes (Jun 17, 2009 7:44:36 PM)
(This user has entered Living with ALS)

Wes (Jun 17, 2009 7:44:36 PM)
(This user has moved to Myotonic Chat Group)

Jim_VA (Jun 17, 2009 7:44:43 PM)
congratulations'

larrye (Jun 17, 2009 7:45:21 PM)
severe childhood autosomal recessive muscular dystrophy

larrye (Jun 17, 2009 7:45:26 PM)
ty jim

Jim_VA (Jun 17, 2009 7:45:56 PM)
are you from there]

larrye (Jun 17, 2009 7:46:07 PM)
no im from va

larrye (Jun 17, 2009 7:46:35 PM)
i met her on the queens trust in 2002 disabled united

larrye (Jun 17, 2009 7:47:11 PM)
we hit it off from the beginning

larrye (Jun 17, 2009 7:47:42 PM)
she was here in va in summer of 2006

larrye (Jun 17, 2009 7:47:55 PM)
most of that summer with me

Jim_VA (Jun 17, 2009 7:48:33 PM)
ah she is from there

larrye (Jun 17, 2009 7:48:37 PM)
her place is accessable

larrye (Jun 17, 2009 7:48:39 PM)
yes

larrye (Jun 17, 2009 7:48:48 PM)
toronto area

Jim_VA (Jun 17, 2009 7:49:24 PM)
nice

larrye (Jun 17, 2009 7:50:32 PM)
still not great transport there for her with wheeltrans it takes her 2 hours to get to work and come home on wheeltrans

larrye (Jun 17, 2009 7:51:44 PM)
so we finnaly decided to get married after 7 years

Jim_VA (Jun 17, 2009 7:52:25 PM)
that is a big move

larrye (Jun 17, 2009 7:52:34 PM)
i have full size van with ricon chair lift

larrye (Jun 17, 2009 7:53:11 PM)
we have been planning this for 6 years but we both a little scared

Jim_VA (Jun 17, 2009 7:53:28 PM)
great

larrye (Jun 17, 2009 7:53:48 PM)
she has full time caregiver with her

Jim_VA (Jun 17, 2009 7:54:25 PM)
cold up there

larrye (Jun 17, 2009 7:54:36 PM)
her caregiver took care of us both on our 3 month trip in 2006

larrye (Jun 17, 2009 7:54:48 PM)
ya big snows lol

larrye (Jun 17, 2009 7:55:27 PM)
so her caregiver said im not a problem for her

Jim_VA (Jun 17, 2009 7:55:28 PM)
that is nice

larrye (Jun 17, 2009 7:56:21 PM)
well so we decided to do it we are engaged 5 years now

larrye (Jun 17, 2009 7:57:15 PM)
im going end of june

Jim_VA (Jun 17, 2009 7:57:57 PM)
so where do you work

larrye (Jun 17, 2009 7:58:10 PM)
i dont right now

larrye (Jun 17, 2009 7:58:23 PM)
she does

Jim_VA (Jun 17, 2009 7:58:39 PM)
ah

larrye (Jun 17, 2009 7:58:47 PM)
u have worked jewlery sales collectable sales

larrye (Jun 17, 2009 7:58:54 PM)
me

larrye (Jun 17, 2009 7:59:44 PM)
we are both in chairs

Jim_VA (Jun 17, 2009 8:00:16 PM)
on the internet

larrye (Jun 17, 2009 8:00:25 PM)
used to yes

larrye (Jun 17, 2009 8:00:27 PM)
me

larrye (Jun 17, 2009 8:00:59 PM)
and she sap annalysist

Jim_VA (Jun 17, 2009 8:01:20 PM)
me 2 wheelchair

larrye (Jun 17, 2009 8:01:55 PM)
shes has arrow invacare powerchair

larrye (Jun 17, 2009 8:02:10 PM)
i have tarsey array

larrye (Jun 17, 2009 8:02:21 PM)
and 2gt sip n puff

Jim_VA (Jun 17, 2009 8:03:07 PM)
I have a Permobil

larrye (Jun 17, 2009 8:03:13 PM)
her me since little

larrye (Jun 17, 2009 8:03:47 PM)
my friend lucian has permobil good chair

Jim_VA (Jun 17, 2009 8:04:56 PM)
I don't drive it[

larrye (Jun 17, 2009 8:05:30 PM)
attendent control ?

larrye (Jun 17, 2009 8:06:41 PM)
i drive 2gt with sip n puff mouth device control

Jim_VA (Jun 17, 2009 8:06:50 PM)
yes son drives \

larrye (Jun 17, 2009 8:07:19 PM)
i see

larrye (Jun 17, 2009 8:07:21 PM)
kk

larrye (Jun 17, 2009 8:07:39 PM)
is he good driver

larrye (Jun 17, 2009 8:08:37 PM)
my fiancee was in my chair one day back in 2006

Jim_VA (Jun 17, 2009 8:08:48 PM)
I cannot sip and puff

larrye (Jun 17, 2009 8:09:05 PM)
array ?

Jim_VA (Jun 17, 2009 8:09:40 PM)
yes he is

larrye (Jun 17, 2009 8:09:47 PM)
well she could not control my sip n puff

Jim_VA (Jun 17, 2009 8:10:36 PM)
I am on a ventilator]

larrye (Jun 17, 2009 8:10:45 PM)
she was hitting the walls furnitures etc

Jim_VA (Jun 17, 2009 8:11:15 PM)
lol

larrye (Jun 17, 2009 8:11:35 PM)
ya she used to joy stick

larrye (Jun 17, 2009 8:12:18 PM)
she keep asking me that it look easy me in my chair driveing

larrye (Jun 17, 2009 8:12:37 PM)
they over react jim

Jim_VA (Jun 17, 2009 8:12:43 PM)
been there

larrye (Jun 17, 2009 8:13:01 PM)
think they need to do alot she tryed too hard

larrye (Jun 17, 2009 8:13:57 PM)
only 4 actions 2 softer 2 harder

larrye (Jun 17, 2009 8:15:13 PM)
array is somewhat easyer for me but my magitech needs work now

larrye (Jun 17, 2009 8:15:57 PM)
i drive van myself

Jim_VA (Jun 17, 2009 8:16:08 PM)
I know a guy in MT that uses s & p'

Jim_VA (Jun 17, 2009 8:16:51 PM)
that is great

larrye (Jun 17, 2009 8:16:57 PM)
he works there or u know him from there ?

larrye (Jun 17, 2009 8:18:05 PM)
from chair ,,,, ez locks ,,, digi solvo etc

Jim_VA (Jun 17, 2009 8:18:48 PM)
He worked there'

larrye (Jun 17, 2009 8:18:55 PM)
auto shift

larrye (Jun 17, 2009 8:19:38 PM)
two ez lock systems in my van

larrye (Jun 17, 2009 8:20:02 PM)
driver and at mid bed

Jim_VA (Jun 17, 2009 8:20:32 PM)
neat equipment

larrye (Jun 17, 2009 8:21:03 PM)
my steering wheel is 8 inch wheel

larrye (Jun 17, 2009 8:21:49 PM)
looks like kiddy bumper car wheel

Jim_VA (Jun 17, 2009 8:21:49 PM)
little

larrye (Jun 17, 2009 8:21:54 PM)
yes

larrye (Jun 17, 2009 8:22:17 PM)
had tri pin too

larrye (Jun 17, 2009 8:22:53 PM)
electric hydolics

larrye (Jun 17, 2009 8:23:09 PM)
not oil like older ones

Jim_VA (Jun 17, 2009 8:23:47 PM)
i have a rear entrance mini

larrye (Jun 17, 2009 8:24:07 PM)
the kneeling one

larrye (Jun 17, 2009 8:24:27 PM)
so u have electric ramp

Jim_VA (Jun 17, 2009 8:24:35 PM)
yes

larrye (Jun 17, 2009 8:25:28 PM)
i rented montana from rideaway once that was like that when i had service don on my van

larrye (Jun 17, 2009 8:26:27 PM)
what year

Jim_VA (Jun 17, 2009 8:27:11 PM)
05

larrye (Jun 17, 2009 8:27:15 PM)
kk

larrye (Jun 17, 2009 8:27:29 PM)
u use it much

larrye (Jun 17, 2009 8:27:57 PM)
mine 03 ford sharrod

larrye (Jun 17, 2009 8:29:30 PM)
custom inside

larrye (Jun 17, 2009 8:29:44 PM)
and running boards

Jim_VA (Jun 17, 2009 8:30:32 PM)
go to florida for the winter

larrye (Jun 17, 2009 8:30:41 PM)
you do

larrye (Jun 17, 2009 8:31:20 PM)
ive had the van twice to florida

larrye (Jun 17, 2009 8:31:43 PM)
lauderdale miami key west once

larrye (Jun 17, 2009 8:31:55 PM)
orlando another time

larrye (Jun 17, 2009 8:32:32 PM)
once to california and oragon too

Jim_VA (Jun 17, 2009 8:33:49 PM)
I had it ford 350 with a braun lift

larrye (Jun 17, 2009 8:33:56 PM)
how old is your boy

Jim_VA (Jun 17, 2009 8:34:32 PM)
43

larrye (Jun 17, 2009 8:34:39 PM)
you traded for the mini van ?

Jim_VA (Jun 17, 2009 8:35:10 PM)
yes

larrye (Jun 17, 2009 8:35:30 PM)
what year was the ford

larrye (Jun 17, 2009 8:37:23 PM)
your son is a year older then my fiancee shes 42

Jim_VA (Jun 17, 2009 8:37:38 PM)
did not like the ford 01

larrye (Jun 17, 2009 8:38:30 PM)
machanical problems or just gas eatter ?

larrye (Jun 17, 2009 8:39:49 PM)
if can i ask how old are you jim ?

Jim_VA (Jun 17, 2009 8:40:37 PM)
gaas 67

larrye (Jun 17, 2009 8:40:49 PM)
wtg

larrye (Jun 17, 2009 8:41:01 PM)
way to go

larrye (Jun 17, 2009 8:41:44 PM)
so u had a v8

larrye (Jun 17, 2009 8:42:43 PM)
still i love full size van

larrye (Jun 17, 2009 8:43:19 PM)
us both in chairs mini vans hard

Jim_VA (Jun 17, 2009 8:43:57 PM)
he. is postmaster at heathsville

larrye (Jun 17, 2009 8:44:12 PM)
good job government

larrye (Jun 17, 2009 8:44:52 PM)
im 57 got 15 years on my fiancee

Jim_VA (Jun 17, 2009 8:45:34 PM)
wife at king george

larrye (Jun 17, 2009 8:45:46 PM)
im sort of well preserved lol

larrye (Jun 17, 2009 8:46:31 PM)
she lives in king george

larrye (Jun 17, 2009 8:47:14 PM)
near c and c then ?

Jim_VA (Jun 17, 2009 8:47:29 PM)
I wish I was

larrye (Jun 17, 2009 8:47:58 PM)
c and c mobility

larrye (Jun 17, 2009 8:48:16 PM)
Gerg

larrye (Jun 17, 2009 8:48:50 PM)
there in king george

Jim_VA (Jun 17, 2009 8:49:09 PM)
postmaster at king george

larrye (Jun 17, 2009 8:49:45 PM)
u are retired

Jim_VA (Jun 17, 2009 8:50:32 PM)
sons wife

larrye (Jun 17, 2009 8:50:38 PM)
i c

larrye (Jun 17, 2009 8:50:57 PM)
you have als

Jim_VA (Jun 17, 2009 8:51:15 PM)
yes

larrye (Jun 17, 2009 8:51:28 PM)
how long jim ?

Jim_VA (Jun 17, 2009 8:51:56 PM)
10 years

larrye (Jun 17, 2009 8:52:20 PM)
steven hawking has it from age 21 hes 69 now

Jim_VA (Jun 17, 2009 8:53:00 PM)
ventilator 8 years

larrye (Jun 17, 2009 8:53:01 PM)
the physics professer

larrye (Jun 17, 2009 8:53:29 PM)
many forms of als

larrye (Jun 17, 2009 8:54:17 PM)
same as with sma

Jim_VA (Jun 17, 2009 8:55:26 PM)
yes he was sick recently

Jim_VA (Jun 17, 2009 8:55:46 PM)
brit

larrye (Jun 17, 2009 8:55:55 PM)
my anterial horn cells and brain stem are effected

larrye (Jun 17, 2009 8:56:39 PM)
sma is also a motor neuron disease

Jim_VA (Jun 17, 2009 8:56:56 PM)
sounds like ALS

larrye (Jun 17, 2009 8:57:11 PM)
well

larrye (Jun 17, 2009 8:58:03 PM)
in pure sma the lower motor neurons are only effected in als both upper and lower are i think

Jim_VA (Jun 17, 2009 8:58:24 PM)
ALS is a killer

larrye (Jun 17, 2009 8:58:29 PM)
yes

larrye (Jun 17, 2009 8:58:37 PM)
so is sma1

larrye (Jun 17, 2009 8:58:58 PM)
i have sma2/3

Jim_VA (Jun 17, 2009 8:59:56 PM)
average 3 to 5 years'

larrye (Jun 17, 2009 9:00:04 PM)
i have more smn2 copys to help replace off set somewhat no smn1 copys

larrye (Jun 17, 2009 9:00:44 PM)
i know god bless u and as ive same way to go wtg

larrye (Jun 17, 2009 9:01:07 PM)
my sister was sma1

larrye (Jun 17, 2009 9:01:20 PM)
she passed away at age 2

larrye (Jun 17, 2009 9:02:23 PM)
my fiancee is scarmd and hm2

larrye (Jun 17, 2009 9:03:06 PM)
well nice chatting with you jim

larrye (Jun 17, 2009 9:03:51 PM)
tc nice meeting u tonight

Jim_VA (Jun 17, 2009 9:04:06 PM)
'I know several who passed within 6 months

larrye (Jun 17, 2009 9:04:50 PM)
(This user has moved to Wheelchair Gang)

Jim_VA (Jun 17, 2009 9:05:39 PM)
(This user has left DigiChat)