Living with ALS

john02 (Dec 9, 2007 3:29:18 PM)
have any of you used the VEST? if so, did you keep it or return it? was it not effective when you first used it but was later?

john02 (Dec 9, 2007 3:31:58 PM)
Marco, have you used the VEST?

john02 (Dec 9, 2007 3:32:38 PM)
Osvaldo, have you used the VEST?

Jim_VA (Dec 9, 2007 4:06:08 PM)
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Jim_VA (Dec 9, 2007 4:06:38 PM)
hi John

john02 (Dec 9, 2007 4:23:44 PM)
Hi Jim. this is my first enter in the chat room. have a question for you. have you ever tried the Hill-Rom VEST? did you keep it or return it? was it any help?

Jim_VA (Dec 9, 2007 4:25:00 PM)
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aeras (Dec 9, 2007 4:25:01 PM)
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john02 (Dec 9, 2007 4:27:05 PM)
Hi Aeras. this is my first time on the chat room. Have a question- have you ever used the Hill-Rom VEST? Did it help, did you keep it?

aeras (Dec 9, 2007 4:27:47 PM)
I never have

aeras (Dec 9, 2007 4:28:31 PM)
I can't say I know what it is

Jim_VA (Dec 9, 2007 4:29:11 PM)
(This user has entered Living with ALS)

aeras (Dec 9, 2007 4:29:12 PM)
I'm fairly new to the disease

aeras (Dec 9, 2007 4:29:20 PM)
hi jim

Jim_VA (Dec 9, 2007 4:29:53 PM)
hi al

Jim_VA (Dec 9, 2007 4:30:26 PM)
how are you two

john02 (Dec 9, 2007 4:32:21 PM)
Aeras, thanks. It's a pulsating air vibrating vest tha you wear to clear your air passage. i have one on loan and wondering whether to keep it as i'm not seeing any benifits at his point. john

aeras (Dec 9, 2007 4:33:50 PM)
I haven't even been told about anything like tha

aeras (Dec 9, 2007 4:33:57 PM)
t

aeras (Dec 9, 2007 4:34:14 PM)
ask jim

aeras (Dec 9, 2007 4:35:12 PM)
Hey Jim I've been to the Als Chat room

Jim_VA (Dec 9, 2007 4:35:59 PM)
have you ben diagnosed John

aeras (Dec 9, 2007 4:36:24 PM)
he asked about a vest

Jim_VA (Dec 9, 2007 4:36:40 PM)
Jeannie's room?

aeras (Dec 9, 2007 4:36:57 PM)
yes

aeras (Dec 9, 2007 4:37:26 PM)
she gave me the url

Jim_VA (Dec 9, 2007 4:37:33 PM)
how did you like it

aeras (Dec 9, 2007 4:37:53 PM)
I liked it alot

Jim_VA (Dec 9, 2007 4:38:18 PM)
where did you go john

Jim_VA (Dec 9, 2007 4:39:26 PM)
it is a little fast for me

Jim_VA (Dec 9, 2007 4:40:43 PM)
was Kurt there

john02 (Dec 9, 2007 4:40:48 PM)
yes, this past Feb. still mobile but very difficult speech. i'm trying to figure out what to do with the vest. it will be picked up this tues if i do not call and say i'll keep it.

Jim_VA (Dec 9, 2007 4:41:47 PM)
are you on bipap

john02 (Dec 9, 2007 4:42:27 PM)
no jim.

aeras (Dec 9, 2007 4:42:43 PM)
I thought we all were

john02 (Dec 9, 2007 4:43:30 PM)
at some point i will be asking a lot of questions on the bipap but not yet.

Jim_VA (Dec 9, 2007 4:43:54 PM)
If the vest isnt working I would give it back

Jim_VA (Dec 9, 2007 4:44:49 PM)
do you have a pulmonogist

aeras (Dec 9, 2007 4:45:54 PM)
same here

john02 (Dec 9, 2007 4:46:15 PM)
unless i hear a positive comment about it's results, i will. Re: pulmonogist- yes, she recommended it

aeras (Dec 9, 2007 4:46:29 PM)
if it doesn't

aeras (Dec 9, 2007 4:46:56 PM)
help it isn't needed

Jim_VA (Dec 9, 2007 4:48:22 PM)
I don't know the different configurations of cough assist machines and nebulizers but ask her about them

john02 (Dec 9, 2007 4:48:43 PM)
ok

Jim_VA (Dec 9, 2007 4:49:13 PM)
medicare covers both

Jim_VA (Dec 9, 2007 4:49:48 PM)
I am on a ventilator and

Jim_VA (Dec 9, 2007 4:50:58 PM)
I don't know how they work for people not on a vent

Jim_VA (Dec 9, 2007 4:51:58 PM)
I have both and they work well

Jim_VA (Dec 9, 2007 4:54:47 PM)
where in your airway ia the stuff hanging up

aeras (Dec 9, 2007 4:57:56 PM)
mine is in my throat

Jim_VA (Dec 9, 2007 4:59:01 PM)
I get in the throat and lungs

john02 (Dec 9, 2007 4:59:29 PM)
primarily all mucus in my throat. i have to cough hard when i get out of bed to expell it - at that point it really restricks my breating. part on this problem is sever sinus problems and reflux. my home doctor's recommended a medison for the reflus and asked for approval by the neurologist at UVA. he recommended not to use

Jim_VA (Dec 9, 2007 5:01:05 PM)
uva where are you I am in Arlington

john02 (Dec 9, 2007 5:01:53 PM)
roanoke

Jim_VA (Dec 9, 2007 5:03:09 PM)
ah down 81 my wife is from Kingsport

john02 (Dec 9, 2007 5:03:59 PM)
on the opposite ends of the road

Jim_VA (Dec 9, 2007 5:04:48 PM)
so I traveled through Roanoke many times before 81

john02 (Dec 9, 2007 5:06:52 PM)
i have only been in roanoke for 7 years but if you traveled before 81 was built, then you must be mre than 40 years old (just kidding)

aeras (Dec 9, 2007 5:08:02 PM)
needto go down 81 to 77 south and get into NC

Jim_VA (Dec 9, 2007 5:08:24 PM)
I would ask if they configure cough assist machines for people not yet on breathing machines

Jim_VA (Dec 9, 2007 5:08:57 PM)
yes I am 65

john02 (Dec 9, 2007 5:09:04 PM)
good point

john02 (Dec 9, 2007 5:10:05 PM)
jim and aeras, how long have you had als?

Jim_VA (Dec 9, 2007 5:10:27 PM)
I think that might be what would help you

Jim_VA (Dec 9, 2007 5:10:49 PM)
8 years

aeras (Dec 9, 2007 5:12:56 PM)
I'm dx acouple of mo.

john02 (Dec 9, 2007 5:13:39 PM)
jim, i will have a lot of questions to ask you about your 8 years but having problems putting those questions down at this point.

john02 (Dec 9, 2007 5:14:50 PM)
aeras, does dx mean you were diagnosed a couple onths ago?

aeras (Dec 9, 2007 5:15:08 PM)
yes

Jim_VA (Dec 9, 2007 5:16:34 PM)
no problem

Jim_VA (Dec 9, 2007 5:17:15 PM)
my email is pigiron308@yahoo.com

john02 (Dec 9, 2007 5:18:50 PM)
thanks, jim. i'm not sure when i will get my questions to you but i know that many will be running through my mind.

Jim_VA (Dec 9, 2007 5:20:13 PM)
when ever you get them together

aeras (Dec 9, 2007 5:21:14 PM)
don't be afraid to come by here or any other ALS chat you can find, everyone is so very helpful

aeras (Dec 9, 2007 5:22:08 PM)
Jim do you Have Jeannies URL or do you want me to give it to him

Jim_VA (Dec 9, 2007 5:22:19 PM)
did you know that Roanoke is considered an ALS hot spot

Jim_VA (Dec 9, 2007 5:22:54 PM)
I don't have it handy

aeras (Dec 9, 2007 5:23:03 PM)
I did not know that

Jim_VA (Dec 9, 2007 5:24:05 PM)
yes there are a few around the country

john02 (Dec 9, 2007 5:25:36 PM)
i,m wondering if my taking statins was a contributer to my ALS, i had to quit taking it about 3 years ago due to severe mussel problems. i read about some concerns that it may be involved with some of the cases

Jim_VA (Dec 9, 2007 5:27:39 PM)
It is hard to say but I never took them

aeras (Dec 9, 2007 5:29:07 PM)
this is Jeannies sight http://client1.sigmachat.com/sc.php?=144320

john02 (Dec 9, 2007 5:30:03 PM)
aeras, who is jeannie and what is URL?

aeras (Dec 9, 2007 5:31:25 PM)
24/7 chat about ALS and other sundries

aeras (Dec 9, 2007 5:32:14 PM)
I was there yesterday Jim and for the first time no one else was there

Jim_VA (Dec 9, 2007 5:34:32 PM)
URL is the link to the site I believe it is the acronym for universal resource locator

aeras (Dec 9, 2007 5:35:06 PM)
you usually go any time and some one is there seeings though its aninternational sight

john02 (Dec 9, 2007 5:35:28 PM)
oh. thanks. i'm heading downstairs-supper is on. thanks for your input. will chatwith you two again

aeras (Dec 9, 2007 5:36:00 PM)
see you later then John

Jim_VA (Dec 9, 2007 5:36:15 PM)
ok take care

aeras (Dec 9, 2007 5:36:16 PM)
enjoy supper

john02 (Dec 9, 2007 5:37:11 PM)
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Jim_VA (Dec 9, 2007 5:38:17 PM)
another new victim

Jim_VA (Dec 9, 2007 5:38:49 PM)
too bad

Jim_VA (Dec 9, 2007 5:42:55 PM)
I hate to see newly diagnosed people especially younger ones

aeras (Dec 9, 2007 5:44:55 PM)
Yeah I know what you mean

aeras (Dec 9, 2007 5:46:13 PM)
seeing people on Jeannies chat that are new and young and survivors of some one who had ALS

Jim_VA (Dec 9, 2007 5:46:37 PM)
really a shame

Jim_VA (Dec 9, 2007 5:46:53 PM)
yep.

aeras (Dec 9, 2007 5:48:03 PM)
they told me to have my wife go on as a spouse and they could chat and help each oyher through

Jim_VA (Dec 9, 2007 5:50:32 PM)
I get the idea that many are either in denial or they are not aware of total picture

Jim_VA (Dec 9, 2007 5:51:03 PM)
that might be good

aeras (Dec 9, 2007 5:52:45 PM)
my wife isn't in denial

Jim_VA (Dec 9, 2007 5:53:04 PM)
My wife won't do that

aeras (Dec 9, 2007 5:53:18 PM)
mine might

Jim_VA (Dec 9, 2007 5:53:49 PM)
no the people with ALS

Jim_VA (Dec 9, 2007 5:55:38 PM)
everyone is different

Jim_VA (Dec 9, 2007 5:57:56 PM)
and there are just as many opinions about what the best course of action is

Jim_VA (Dec 9, 2007 6:00:45 PM)
I do things that you are not supposed to do

aeras (Dec 9, 2007 6:00:59 PM)
bad boy

aeras (Dec 9, 2007 6:01:01 PM)
lol

Jim_VA (Dec 9, 2007 6:01:10 PM)
lol

Jim_VA (Dec 9, 2007 6:01:40 PM)
particularly with the machines

Jim_VA (Dec 9, 2007 6:03:42 PM)
I set them to what makes me comfortable not what the doctors say

aeras (Dec 9, 2007 6:05:46 PM)
I do that too

aeras (Dec 9, 2007 6:06:37 PM)
no need to blow me up like a balloon

Jim_VA (Dec 9, 2007 6:07:31 PM)
and i used plumbing fixtures in my ventilator circuit

Jim_VA (Dec 9, 2007 6:09:34 PM)
I had the opposite problem- I felt like they were trying to wean ne off of air

Jim_VA (Dec 9, 2007 6:12:14 PM)
i think I will take a nap see you tomorrow take care gn

aeras (Dec 9, 2007 6:12:34 PM)
ok see you tomorrow

Jim_VA (Dec 9, 2007 6:12:44 PM)
bye

Jim_VA (Dec 9, 2007 6:12:52 PM)
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aeras (Dec 9, 2007 6:13:09 PM)
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