Living with ALS

DanG (Sep 28, 2008 2:07:44 PM)
(This user has entered Living with ALS)

DanG (Sep 28, 2008 2:08:39 PM)
hi Jim, how r u

Jim_VA (Sep 28, 2008 2:09:47 PM)
Hi Dan great and you

DanG (Sep 28, 2008 2:11:32 PM)
great, ty for the trach care write up

Jim_VA (Sep 28, 2008 2:11:32 PM)
I just sent your an e-mail

Jim_VA (Sep 28, 2008 2:12:16 PM)
yqw

DanG (Sep 28, 2008 2:12:58 PM)
I applied to Lake Taylor. Got all paper into N Augusta and by that time they were out of space.

Jim_VA (Sep 28, 2008 2:13:57 PM)
do you, keep anything under the trach

DanG (Sep 28, 2008 2:15:11 PM)
no, just some anti bact ointment. I need a trach tie that is sort of stretchy.

Jim_VA (Sep 28, 2008 2:15:32 PM)
Lake Tayor?

DanG (Sep 28, 2008 2:16:25 PM)
Lake Taylor...That place your friend is at in Norfolk, VA.

Jim_VA (Sep 28, 2008 2:20:34 PM)
We cut up an old towel into 3x10 strips we roll rhem up and place it under the trach

DanG (Sep 28, 2008 2:22:06 PM)
Great Idea! I will have to get than done to try!

Jim_VA (Sep 28, 2008 2:22:12 PM)
Lake Tayor is full?

DanG (Sep 28, 2008 2:23:02 PM)
No, The place in So. Carolina is full. The one I was going in to.

Jim_VA (Sep 28, 2008 2:24:30 PM)
there is a pic on the trach change video

Jim_VA (Sep 28, 2008 2:26:27 PM)
we use a neck strap to hold it in place

DanG (Sep 28, 2008 2:26:31 PM)
Yes, I took note of that. That is why I was thinking about some cushioning. Does the 4 x 4 under the trach. help?

Jim_VA (Sep 28, 2008 2:27:12 PM)
yes

DanG (Sep 28, 2008 2:27:41 PM)
I will try that!

DanG (Sep 28, 2008 2:29:07 PM)
do u go into any other chat rooms for ALS?

Jim_VA (Sep 28, 2008 2:30:01 PM)
we put the outside neck strap on backwards

DanG (Sep 28, 2008 2:30:40 PM)
where u get it from? the r/t?

Jim_VA (Sep 28, 2008 2:31:09 PM)
not very often

Jim_VA (Sep 28, 2008 2:32:36 PM)
we order them from the interested

Jim_VA (Sep 28, 2008 2:33:17 PM)
internet

Jim_VA (Sep 28, 2008 2:34:06 PM)
about $1 each

DanG (Sep 28, 2008 2:34:17 PM)
its called a trach neck strap?

Jim_VA (Sep 28, 2008 2:37:57 PM)
do you change the inner canula every day

DanG (Sep 28, 2008 2:38:35 PM)
yes do u?

Jim_VA (Sep 28, 2008 2:39:49 PM)
yes to a new one

DanG (Sep 28, 2008 2:43:11 PM)
same here #6 DIC

Jim_VA (Sep 28, 2008 2:45:04 PM)
Ron said that there are out of state people in Lake Tayor

Jim_VA (Sep 28, 2008 2:45:36 PM)
#8

DanG (Sep 28, 2008 2:46:54 PM)
I was afraid of that! Not looking good for any place right now!

Jim_VA (Sep 28, 2008 2:47:40 PM)
when do you change it

DanG (Sep 28, 2008 2:48:12 PM)
in mornings

Jim_VA (Sep 28, 2008 2:50:08 PM)
i almost have the evening procedure done

Jim_VA (Sep 28, 2008 2:50:56 PM)
we do it before bed

DanG (Sep 28, 2008 2:52:10 PM)
i just get a lot of crud in mine at night.

Jim_VA (Sep 28, 2008 2:53:24 PM)
I like a clean iner cannula to start sleeping

DanG (Sep 28, 2008 2:54:18 PM)
that is probably best thing to do.

Jim_VA (Sep 28, 2008 2:56:04 PM)
I average 1.5 suction at night

DanG (Sep 28, 2008 2:56:11 PM)
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DanG (Sep 28, 2008 2:57:12 PM)
(This user has entered Living with ALS)

Jim_VA (Sep 28, 2008 2:57:41 PM)
wb

DanG (Sep 28, 2008 2:58:11 PM)
what program u use on pc for voice?

Jim_VA (Sep 28, 2008 2:59:31 PM)
in my keyboard - Skeleton Key

Jim_VA (Sep 28, 2008 3:02:02 PM)
I don't talk much

DanG (Sep 28, 2008 3:02:08 PM)
Did you get any assistance from any group on buying it?

Jim_VA (Sep 28, 2008 3:02:57 PM)
no $99

DanG (Sep 28, 2008 3:04:56 PM)
that's not bad. I use a MAC. The only thing I can get that is recommended is Proloquo and Keystrokes... Both cost $299 each

DanG (Sep 28, 2008 3:07:15 PM)
i m using a loaner Dynavox from ALS Assoc. Not too good

Jim_VA (Sep 28, 2008 3:07:42 PM)
huh

Jim_VA (Sep 28, 2008 3:10:31 PM)
I don't knowif Skeleton Key has s mac version

Jim_VA (Sep 28, 2008 3:13:14 PM)
theymay have

DanG (Sep 28, 2008 3:15:31 PM)
just looked, they don't have.

Jim_VA (Sep 28, 2008 3:16:20 PM)
ah

DanG (Sep 28, 2008 3:16:37 PM)
Did Ron say if space becomes available a lot?

Jim_VA (Sep 28, 2008 3:17:22 PM)
no

Jim_VA (Sep 28, 2008 3:23:09 PM)
Posey Foam Trach Ties (POS8197L_bx Large (23 1/2"L X 1"W) - Adult 13-24"Circ Box of 12 - $12.18) VITALITY http://www.vitalitymedical.com/vitalitymedical.storefront/48dfe4b800f6a0292719424d3623067f/Product/View/POS8197S_bx

DanG (Sep 28, 2008 3:23:31 PM)
ty

Jim_VA (Sep 28, 2008 3:27:46 PM)
do you go to other chat rooms

DanG (Sep 28, 2008 3:28:27 PM)
dont know any others

Jim_VA (Sep 28, 2008 3:30:43 PM)
ah go to sigma now and then

Jim_VA (Sep 28, 2008 3:32:37 PM)
do you belong to PLM

DanG (Sep 28, 2008 3:33:14 PM)
no, what is PLM?

Jim_VA (Sep 28, 2008 3:35:17 PM)
i will get you a link

Jim_VA (Sep 28, 2008 3:38:15 PM)
https://www.patientslikeme.com/user/signup An interesting site that you should join. It shows ALS victim’s progress and the medications they take. It also has a discussion forum for members (not live).

DanG (Sep 28, 2008 3:40:56 PM)
ty....i will join it.

Jim_VA (Sep 28, 2008 3:42:16 PM)
yes good site

DanG (Sep 28, 2008 3:43:12 PM)
used to be a lot of activity on the sigma chat.

Jim_VA (Sep 28, 2008 3:43:39 PM)
over 2000

Jim_VA (Sep 28, 2008 3:44:09 PM)
still is

DanG (Sep 28, 2008 3:44:35 PM)
that is a lot. there used to be a lot more on this chat.

Jim_VA (Sep 28, 2008 3:45:09 PM)
too fast for me

Jim_VA (Sep 28, 2008 3:45:50 PM)
yes

Jim_VA (Sep 28, 2008 3:46:53 PM)
some have died

DanG (Sep 28, 2008 3:47:27 PM)
i agree on being too fast

Jim_VA (Sep 28, 2008 3:48:08 PM)
lol it is

DanG (Sep 28, 2008 3:48:51 PM)
my brain dont work that fast anymore

Jim_VA (Sep 28, 2008 3:51:34 PM)
I cannot keep u;p with the typing

Jim_VA (Sep 28, 2008 3:53:16 PM)
a lot of them have died

Jim_VA (Sep 28, 2008 3:54:53 PM)
but new ones show up

Jim_VA (Sep 28, 2008 3:57:29 PM)
I have a bad attitude

Jim_VA (Sep 28, 2008 3:58:34 PM)
any way

DanG (Sep 28, 2008 3:58:40 PM)
I know....you are going to get me sad Jim. But, who knows they are probably better off. At least they don't have to worry bout a place to live with care. My attitude is getting bad too. More frustration and utter disbelief than any thing else.

Jim_VA (Sep 28, 2008 4:01:30 PM)
app;y to Lake tayor

DanG (Sep 28, 2008 4:02:24 PM)
I did already

DanG (Sep 28, 2008 4:03:50 PM)
I really hope something comes thru soon.

Jim_VA (Sep 28, 2008 4:04:11 PM)
ok you haven't heard anything

DanG (Sep 28, 2008 4:05:27 PM)
no, i applied online Wednesday. Haven't heard anything except they got my application.

Jim_VA (Sep 28, 2008 4:07:18 PM)
some place will turn up

Jim_VA (Sep 28, 2008 4:09:11 PM)
have you checked florida

elliebedelia (Sep 28, 2008 4:09:20 PM)
(This user has entered Living with ALS)

elliebedelia (Sep 28, 2008 4:09:27 PM)
good afternoon everyone

Jim_VA (Sep 28, 2008 4:09:46 PM)
hi

DanG (Sep 28, 2008 4:09:59 PM)
howdy

elliebedelia (Sep 28, 2008 4:10:08 PM)
I live in Preston Ct

DanG (Sep 28, 2008 4:10:26 PM)
No. Georgia here.

Jim_VA (Sep 28, 2008 4:10:45 PM)
how are you

elliebedelia (Sep 28, 2008 4:11:17 PM)
I am doing well except for the cold damp weather makes me ache all over

elliebedelia (Sep 28, 2008 4:11:39 PM)
Dan is that where those good peaches come from

Jim_VA (Sep 28, 2008 4:11:53 PM)
Arlington VA

elliebedelia (Sep 28, 2008 4:12:18 PM)
Jim are you in a bif city?

elliebedelia (Sep 28, 2008 4:12:54 PM)
big city

DanG (Sep 28, 2008 4:13:07 PM)
yep and they are really in good now.

elliebedelia (Sep 28, 2008 4:13:33 PM)
I know they are better than California peaches

Jim_VA (Sep 28, 2008 4:14:30 PM)
yes 2 miles ffom the Pentagon

elliebedelia (Sep 28, 2008 4:15:04 PM)
the driving must be crazy to get around

elliebedelia (Sep 28, 2008 4:15:40 PM)
i don`t like city driving I just moved to Ct from the dirt roads of NH

Jim_VA (Sep 28, 2008 4:15:52 PM)
where is Preston

elliebedelia (Sep 28, 2008 4:16:32 PM)
It is near the navy base in Groton I am with my son who is Navy also near New London

elliebedelia (Sep 28, 2008 4:16:50 PM)
southeast

Jim_VA (Sep 28, 2008 4:16:55 PM)
I close my eyes

elliebedelia (Sep 28, 2008 4:17:20 PM)
yes that is a great idea and tighten your seatbelt

Jim_VA (Sep 28, 2008 4:18:54 PM)
wow I have a friend in Mystic

elliebedelia (Sep 28, 2008 4:19:22 PM)
i am going to Mystic next weekend I have never been there

elliebedelia (Sep 28, 2008 4:19:41 PM)
I live 12 miles from Mystic

Jim_VA (Sep 28, 2008 4:20:26 PM)
she is a nurse

DanG (Sep 28, 2008 4:20:50 PM)
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elliebedelia (Sep 28, 2008 4:20:56 PM)
I am always looking for someone I can get aquainted with I don`t know anyone here just the family

elliebedelia (Sep 28, 2008 4:21:27 PM)
Is she a navy nurse?

Jim_VA (Sep 28, 2008 4:22:19 PM)
do you have ALS

elliebedelia (Sep 28, 2008 4:23:01 PM)
oh no I have mmd which is myatonic muscular dystrophy I like to visit all the chats

elliebedelia (Sep 28, 2008 4:23:15 PM)
so far no one has ever kicked me out

elliebedelia (Sep 28, 2008 4:23:36 PM)
it is my social life

elliebedelia (Sep 28, 2008 4:24:00 PM)
how are you affected with als?

Jim_VA (Sep 28, 2008 4:24:17 PM)
no in a regular hospital

Jim_VA (Sep 28, 2008 4:25:05 PM)
My name is Jim and I have Amyotrophic Lateral Sclerosi on a ventilator for over seven years, bedridden for five years, and I plan to live until I see a cure.

elliebedelia (Sep 28, 2008 4:25:38 PM)
well that is the right attitude Jim

elliebedelia (Sep 28, 2008 4:26:33 PM)
I inherited mmd from my dad and he was bedridden for 10 yrs and had both legs amputated he passed away 5 yrs ago

Jim_VA (Sep 28, 2008 4:27:03 PM)
I think that you have been here

elliebedelia (Sep 28, 2008 4:27:15 PM)
May of us in the family have it just today I found out another cousin has it

elliebedelia (Sep 28, 2008 4:27:32 PM)
I may have one other time

elliebedelia (Sep 28, 2008 4:28:33 PM)
do you go to md suport group later tonight 7-8 pm?

Jim_VA (Sep 28, 2008 4:30:21 PM)
no I visit DMD and wheelchair

elliebedelia (Sep 28, 2008 4:30:56 PM)
you must have nice weather most of the yr?

Jim_VA (Sep 28, 2008 4:31:30 PM)
oh and LGMD

elliebedelia (Sep 28, 2008 4:31:42 PM)
I know someone in I think it is Vienna Va

Jim_VA (Sep 28, 2008 4:32:31 PM)
about 15 miles

Jim_VA (Sep 28, 2008 4:33:15 PM)
nic e area

elliebedelia (Sep 28, 2008 4:33:16 PM)
Peter and Rosemary Poole She is a professer at George Washington

elliebedelia (Sep 28, 2008 4:33:52 PM)
they told me about getting bad ice storms sometimes

Jim_VA (Sep 28, 2008 4:35:08 PM)
I go to a neuro there

Jim_VA (Sep 28, 2008 4:35:38 PM)
yes we do

elliebedelia (Sep 28, 2008 4:35:59 PM)
oh I go to my neuro at Datmouth Hitchcock Hospital in NH

elliebedelia (Sep 28, 2008 4:36:52 PM)
they don`t do much for me but it is all about the reserch

Jim_VA (Sep 28, 2008 4:37:08 PM)
my son got his masters at GW

Jim_VA (Sep 28, 2008 4:37:43 PM)
same here

elliebedelia (Sep 28, 2008 4:37:58 PM)
my daughter-in-law also went there She has her masters in animal science and nutrician

Jim_VA (Sep 28, 2008 4:38:40 PM)
I went to

elliebedelia (Sep 28, 2008 4:38:45 PM)
it got her a very good job

elliebedelia (Sep 28, 2008 4:39:02 PM)
What was your major?

Jim_VA (Sep 28, 2008 4:39:49 PM)
Johns Hopkins nothing

elliebedelia (Sep 28, 2008 4:40:19 PM)
Are you able to live at home?

Jim_VA (Sep 28, 2008 4:41:39 PM)
he is a Verizon engineer

Jim_VA (Sep 28, 2008 4:41:57 PM)
yes

elliebedelia (Sep 28, 2008 4:42:00 PM)
oh that is a good job

elliebedelia (Sep 28, 2008 4:42:15 PM)
There is no place like home!

elliebedelia (Sep 28, 2008 4:43:10 PM)
My real name is Karen by the way

Jim_VA (Sep 28, 2008 4:43:47 PM)
he is trying to retire next year

Jim_VA (Sep 28, 2008 4:44:29 PM)
hi Karen

elliebedelia (Sep 28, 2008 4:44:34 PM)
it is nice that he can do that

elliebedelia (Sep 28, 2008 4:45:10 PM)
Do you have a wonderful sife?

Jim_VA (Sep 28, 2008 4:45:12 PM)
wants to teach

elliebedelia (Sep 28, 2008 4:45:17 PM)
I mean wife

Jim_VA (Sep 28, 2008 4:45:47 PM)
yes

Jim_VA (Sep 28, 2008 4:46:28 PM)
website www.alsandus.org

elliebedelia (Sep 28, 2008 4:46:34 PM)
that is awesome you must be very devoted to each other

elliebedelia (Sep 28, 2008 4:46:51 PM)
oh thankyou Jim I will look that up

Jim_VA (Sep 28, 2008 4:47:36 PM)
yes we are \

elliebedelia (Sep 28, 2008 4:48:49 PM)
I have been devorced yrs and my son and daughter-in-law asked me to live with them and it is wonderful They are extemely good to me

Jim_VA (Sep 28, 2008 4:49:36 PM)
we have been together a long time

elliebedelia (Sep 28, 2008 4:50:34 PM)
I still get around fairly well I use a cane for balance and I eat very slowly I choke easily and I need caterac surgery for both eyes

Jim_VA (Sep 28, 2008 4:51:05 PM)
that is so nice

elliebedelia (Sep 28, 2008 4:51:41 PM)
I am 55 next month

Jim_VA (Sep 28, 2008 4:53:15 PM)
my wife had a caterac removed

elliebedelia (Sep 28, 2008 4:54:02 PM)
they tell me it will improve my vision immencely I will have i t done in the spring

Jim_VA (Sep 28, 2008 4:55:05 PM)
My boys are good with me

elliebedelia (Sep 28, 2008 4:55:27 PM)
so good to have close family

elliebedelia (Sep 28, 2008 4:56:18 PM)
i guess time is abour up it has been very nice chatting with you and I am sure we will meet up again

Jim_VA (Sep 28, 2008 4:56:45 PM)
one lives close to dulles

elliebedelia (Sep 28, 2008 4:57:01 PM)
oh yes

Jim_VA (Sep 28, 2008 4:57:08 PM)
It was very nice chatting with you. Take care and do come back soon! bye

elliebedelia (Sep 28, 2008 4:57:26 PM)
thankyouu very much

elliebedelia (Sep 28, 2008 4:57:29 PM)
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Jim_VA (Sep 28, 2008 4:57:41 PM)
(This user has left DigiChat)