Living with ALS

LadyP (Oct 12, 2009 1:56:08 PM)
Anyone here?

mommazooms (Oct 12, 2009 1:59:38 PM)
(This user has entered Living with ALS)

LadyP (Oct 12, 2009 2:00:43 PM)
hi! this is my first time here.

mommazooms (Oct 12, 2009 2:01:08 PM)
Hi LadyP! I'm Beth, how are you today?

LadyP (Oct 12, 2009 2:01:47 PM)
Good. I got my diagnosis in May.

mommazooms (Oct 12, 2009 2:01:54 PM)
Welcome to the chat room :)

mommazooms (Oct 12, 2009 2:02:50 PM)
I got my dx in October 1992...

LadyP (Oct 12, 2009 2:03:01 PM)
Thanks. I want to meet others w/ ALS and get advice.

LadyP (Oct 12, 2009 2:03:30 PM)
That's a long time.

mommazooms (Oct 12, 2009 2:05:23 PM)
I'm all ears! Where are you located? May I ask how old you are? Yes, I think I have a slow progression. I'm in Enfield, CT and I'm 48 years old.

LadyP (Oct 12, 2009 2:06:05 PM)
I'm 54, and near York, PA

LadyP (Oct 12, 2009 2:07:00 PM)
I go to the Hershey cnter for clinic visits

mommazooms (Oct 12, 2009 2:08:17 PM)
I'm married to my best friend Ralph and have an 18 year old son named RJ. Do you have any children? Ooo, do they hand out chocolate at the visits? :D

LadyP (Oct 12, 2009 2:11:02 PM)
I'm married w/ a 25 yr old son who lives at home. he's out of work so he's been able to be my caregiver. I have 1 21 yr ol daughter whos a sr in college

LadyP (Oct 12, 2009 2:11:55 PM)
no choc at visits :(

mommazooms (Oct 12, 2009 2:13:58 PM)
How long did it take for your diagnosis? Did you have symptoms for a long time? Nuts! You ought to suggest it! Dark chocolate is good for you :)

LadyP (Oct 12, 2009 2:14:06 PM)
i feel i've progressed a lot since x. Walking isn't great, and right hand doesn't work much. left hand only a little

mommazooms (Oct 12, 2009 2:14:53 PM)
How is your speech?

LadyP (Oct 12, 2009 2:16:01 PM)
symptoms started 8/08 when i started losing fine motor skills in hand. speech still good. how about u?

mommazooms (Oct 12, 2009 2:20:59 PM)
I can walk with assistance to/from the bathroom, arms have limited movement - I can work a mouse and the joystick on my electric wheelchair, my breathing is 73%, I can eat 98% of what is fed to me and my speech is understandable when I talk slowly and enunciate, it's worse in the evening.

Jim_VA (Oct 12, 2009 2:21:51 PM)
(This user has entered Living with ALS)

LadyP (Oct 12, 2009 2:22:02 PM)
i know this affects everyone differently

mommazooms (Oct 12, 2009 2:22:05 PM)
I can still be understood on the phone

LadyP (Oct 12, 2009 2:22:44 PM)
good. i find holding a phone tirig

mommazooms (Oct 12, 2009 2:23:14 PM)
Hi Jim! How are you? I'm well, thanks... LadyP was dx in May

LadyP (Oct 12, 2009 2:23:28 PM)
hi, jim

mommazooms (Oct 12, 2009 2:25:05 PM)
Lady, I wear a headset with a microphone and it plugs into the cordless phone...

LadyP (Oct 12, 2009 2:25:59 PM)
i will need to look into that. BTW I'm Peggy

Jim_VA (Oct 12, 2009 2:27:20 PM)
'Hi Beth and Lady I am fine ty

mommazooms (Oct 12, 2009 2:27:50 PM)
Lady, I wear a headset with a microphone and it plugs into the cordless phone... If you have a cordless phone, it may have a jack port on the side. You can get the headsets at Radio Shack, Best Buy, etc. Hi Peggy :)

mommazooms (Oct 12, 2009 2:28:46 PM)
Sorry, repeated msg :P

LadyP (Oct 12, 2009 2:29:12 PM)
wonderful idea. my birthday is next month, so i'll put it on my list

mommazooms (Oct 12, 2009 2:29:35 PM)
Yay!

LadyP (Oct 12, 2009 2:30:42 PM)
i m slow typing using one finger. we got speech to text program for long emails.

Jim_VA (Oct 12, 2009 2:31:36 PM)
no problem

pete46 (Oct 12, 2009 2:31:59 PM)
(This user has entered Living with ALS)

pete46 (Oct 12, 2009 2:32:17 PM)
hello all, happy columbus day

LadyP (Oct 12, 2009 2:32:30 PM)
my signature looks like a first grader's

mommazooms (Oct 12, 2009 2:33:15 PM)
Try this FREE software download - Dasher (http://www.inference.phy.cam.ac.uk/dasher/)... It takes one click to start & one to stop

Jim_VA (Oct 12, 2009 2:33:57 PM)
Hi Pete same to you

LadyP (Oct 12, 2009 2:34:02 PM)
good to know. thanks

mommazooms (Oct 12, 2009 2:34:05 PM)
Lol! Mine too when I could write :)

Jim_VA (Oct 12, 2009 2:34:15 PM)
hn

mommazooms (Oct 12, 2009 2:35:03 PM)
Hi Pete! How are you? Happy Columbus Day too!

pete46 (Oct 12, 2009 2:35:24 PM)
i downloaded dasher, have tried it a little bit. Seems like once learned it will be a lot easier

pete46 (Oct 12, 2009 2:35:50 PM)
Hi Beth I am fine living down here in the fine state of Ct

pete46 (Oct 12, 2009 2:36:16 PM)
I am still recovering from the Patriots and Red sox losses though :)

mommazooms (Oct 12, 2009 2:36:22 PM)
Yes, it will get easier!

pete46 (Oct 12, 2009 2:36:45 PM)
hi Jim, off to Fla soon?

mommazooms (Oct 12, 2009 2:37:50 PM)
Go Giants! I don't care for the Pats, but was bummed about the Sox

pete46 (Oct 12, 2009 2:38:23 PM)
The giants look like they might not lose this year!

pete46 (Oct 12, 2009 2:38:36 PM)
They are playing awfully good

pete46 (Oct 12, 2009 2:39:18 PM)
Hi LadyP

LadyP (Oct 12, 2009 2:39:56 PM)
Hi I'm Peggy (in PA)

pete46 (Oct 12, 2009 2:40:24 PM)
nice to meet you Peggy, Pete from Ct formerly MA

mommazooms (Oct 12, 2009 2:40:26 PM)
Shhh Pete!

pete46 (Oct 12, 2009 2:40:31 PM)
lol

Jim_VA (Oct 12, 2009 2:41:31 PM)
The ability to scribble is a blessing

LadyP (Oct 12, 2009 2:42:00 PM)
it shows a brilliant mind

pete46 (Oct 12, 2009 2:42:19 PM)
i saw a video on youtube of a guy using dasher and he could go a lot faster than I can type

mommazooms (Oct 12, 2009 2:43:02 PM)
Lol!

Jim_VA (Oct 12, 2009 2:43:05 PM)
leaving sar

pete46 (Oct 12, 2009 2:43:48 PM)
whats sar

LadyP (Oct 12, 2009 2:44:06 PM)
my husband's name is Ivan and my speech program renamed him. Should I tell him?

mommazooms (Oct 12, 2009 2:45:08 PM)
Lol! That's funny!

LadyP (Oct 12, 2009 2:45:49 PM)
yeah he needs an easier name

Jim_VA (Oct 12, 2009 2:46:14 PM)
sar = saturday

pete46 (Oct 12, 2009 2:46:45 PM)
arriving sun? or mon?

Jim_VA (Oct 12, 2009 2:47:26 PM)
saturday

pete46 (Oct 12, 2009 2:48:07 PM)
do you come in May?

Jim_VA (Oct 12, 2009 2:49:15 PM)
yes

mommazooms (Oct 12, 2009 2:49:34 PM)
Peggy, You said your right hand doesn't work much, is it atrophied or just limp? My right hand is atrophied into a fist and I use a rolled up washcloth/facecloth to keep my fingers away from my palm... I

Jim_VA (Oct 12, 2009 2:49:57 PM)
maybe April

LadyP (Oct 12, 2009 2:51:19 PM)
i think atrophied. i can move the fingers but they can't pinch or grasp

Jim_VA (Oct 12, 2009 2:51:55 PM)
driving straight through

pete46 (Oct 12, 2009 2:52:21 PM)
more than one driver?

mommazooms (Oct 12, 2009 2:52:33 PM)
That's good you can still move them

mommazooms (Oct 12, 2009 2:53:09 PM)
How is your breathing?

Jim_VA (Oct 12, 2009 2:53:22 PM)
lead foot is driving

pete46 (Oct 12, 2009 2:53:37 PM)
not your wife?

LadyP (Oct 12, 2009 2:53:42 PM)
2 are swollen most of time. breathing is good

mommazooms (Oct 12, 2009 2:54:37 PM)
Swollen? Fingers?

LadyP (Oct 12, 2009 2:54:54 PM)
yes

Jim_VA (Oct 12, 2009 2:55:35 PM)
3 drivers'

Jim_VA (Oct 12, 2009 2:56:18 PM)
2 vehicles

pete46 (Oct 12, 2009 2:57:24 PM)
a reguar caravan :)

LadyP (Oct 12, 2009 2:57:48 PM)
with camels?

pete46 (Oct 12, 2009 2:57:54 PM)
lol

mommazooms (Oct 12, 2009 2:58:07 PM)
Lol!

Jim_VA (Oct 12, 2009 2:58:10 PM)
lol

pete46 (Oct 12, 2009 2:58:28 PM)
peggy your hands sound like my feet, swollen with a little movement in my toes.

mommazooms (Oct 12, 2009 2:59:27 PM)
Peggy, have you heard of the Patients Like Me website?

LadyP (Oct 12, 2009 3:00:22 PM)
yes i found it interesting

mommazooms (Oct 12, 2009 3:01:47 PM)
I'm on there under mzooms

LadyP (Oct 12, 2009 3:02:24 PM)
i just browsed just once

Jim_VA (Oct 12, 2009 3:02:37 PM)
youngest son and wife are primary drivers i dn

mommazooms (Oct 12, 2009 3:04:55 PM)
It's a great place to go when you need to vent about something because everyone there knows what you're going through!

Jim_VA (Oct 12, 2009 3:08:43 PM)
bro-in-law is already there

pete46 (Oct 12, 2009 3:09:04 PM)
advance party to get things ready?

Jim_VA (Oct 12, 2009 3:09:22 PM)
yes

pete46 (Oct 12, 2009 3:09:25 PM)
how big is the house you got down there

LadyP (Oct 12, 2009 3:10:11 PM)
i need to go. great chatting w/ everyone

LadyP (Oct 12, 2009 3:11:12 PM)
(This user has left DigiChat)

pete46 (Oct 12, 2009 3:13:52 PM)
with some luck i should be getting my power chair this week.

Jim_VA (Oct 12, 2009 3:14:13 PM)
3 br but i stay in the living room

pete46 (Oct 12, 2009 3:14:29 PM)
one floor?

Jim_VA (Oct 12, 2009 3:15:18 PM)
yes'

mommazooms (Oct 12, 2009 3:17:45 PM)
Don't ding the walls & doors up too much!

Jim_VA (Oct 12, 2009 3:19:02 PM)
we are on the 5th floor

pete46 (Oct 12, 2009 3:19:08 PM)
i i do that already with the manual wc. i will have to be careful

Jim_VA (Oct 12, 2009 3:19:21 PM)
lol

pete46 (Oct 12, 2009 3:19:45 PM)
lol

Jim_VA (Oct 12, 2009 3:21:26 PM)
hurricanes beach front

pete46 (Oct 12, 2009 3:22:18 PM)
yikes

Jim_VA (Oct 12, 2009 3:28:01 PM)
Beth very nice picture this month

mommazooms (Oct 12, 2009 3:29:01 PM)
Thanks Jim!

Jim_VA (Oct 12, 2009 3:31:24 PM)
building has a generator

pete46 (Oct 12, 2009 3:31:47 PM)
thats a good idea

Jim_VA (Oct 12, 2009 3:35:01 PM)
I think i5t

Jim_VA (Oct 12, 2009 3:36:41 PM)
it is 2300 sq feet

pete46 (Oct 12, 2009 3:44:47 PM)
good size

Jim_VA (Oct 12, 2009 3:45:48 PM)
to

Jim_VA (Oct 12, 2009 3:48:23 PM)
yes]

Jim_VA (Oct 12, 2009 3:53:44 PM)
the best thing is that we drive up to our floor

mommazooms (Oct 12, 2009 3:53:54 PM)
Dinner time, be back in 20 minutes... Pork roast, potatoes & applesauce

pete46 (Oct 12, 2009 3:54:31 PM)
bon appetit

Jim_VA (Oct 12, 2009 3:54:50 PM)
yummy

Jim_VA (Oct 12, 2009 3:56:29 PM)
n

pete46 (Oct 12, 2009 4:01:19 PM)
what do you mean you drive up to your floor, dont you live on the first floor?

Jim_VA (Oct 12, 2009 4:03:21 PM)
yes

pete46 (Oct 12, 2009 4:04:35 PM)
ramp set up

pete46 (Oct 12, 2009 4:05:50 PM)
I'm getting two temp ramps for my daughter's hyouse for now, if i decide to stay for any length of time, will have a permanent wooden ramp built

Jim_VA (Oct 12, 2009 4:09:06 PM)
parking is about 50 feet from from front door

mommazooms (Oct 12, 2009 4:19:06 PM)
(This user has left DigiChat)

pete46 (Oct 12, 2009 4:19:57 PM)
'

pete46 (Oct 12, 2009 4:22:34 PM)
jim im gonna eat now, be back on tonite i hope

pete46 (Oct 12, 2009 4:22:39 PM)
(This user has left DigiChat)

Jim_VA (Oct 12, 2009 4:33:22 PM)
4

Jim_VA (Oct 12, 2009 5:15:14 PM)
(This user has left DigiChat)