Living with ALS 2

Aspen (Oct 13, 2008 8:02:20 PM)
I must be early

Jim_VA (Oct 13, 2008 8:05:36 PM)
(This user has entered Living with ALS 2)

Aspen (Oct 13, 2008 8:06:10 PM)
Hello, Jim. I'm John in Kansas City

Jim_VA (Oct 13, 2008 8:06:59 PM)
Hi John

Aspen (Oct 13, 2008 8:07:30 PM)
hi

ab (Oct 13, 2008 8:07:47 PM)
(This user has entered Living with ALS 2)

Jim_VA (Oct 13, 2008 8:07:47 PM)
how are you tonight

Jim_VA (Oct 13, 2008 8:08:14 PM)
hi ab

Aspen (Oct 13, 2008 8:08:42 PM)
i'm kinda sore. i had my feeding tube put in Thursday. Hi, ab.

ab (Oct 13, 2008 8:08:47 PM)
hello, doing well just trying out my log in name and password, h ow are you

Jim_VA (Oct 13, 2008 8:09:25 PM)
great ty

ab (Oct 13, 2008 8:11:42 PM)
Trying to get my son to do his homework, are you afflicted with muscular dystrophy or a care taker

Aspen (Oct 13, 2008 8:13:05 PM)
I am a fairly recent recruit into ALS.

Jim_VA (Oct 13, 2008 8:13:09 PM)
that will pass John

Jim_VA (Oct 13, 2008 8:13:44 PM)
DMD?

Jim_VA (Oct 13, 2008 8:14:17 PM)
ALS

ab (Oct 13, 2008 8:14:25 PM)
my son has dmd age 16

Jim_VA (Oct 13, 2008 8:15:11 PM)
sorry to hear that

Aspen (Oct 13, 2008 8:15:23 PM)
I'm sorry to hear that too.

ab (Oct 13, 2008 8:16:26 PM)
I know this is an als support group I just wanted to check it out, you all take care and have a good evening.

ab (Oct 13, 2008 8:16:34 PM)
(This user has left DigiChat)

elliebedelia (Oct 13, 2008 8:17:14 PM)
(This user has entered Living with ALS 2)

elliebedelia (Oct 13, 2008 8:17:26 PM)
hello everyone

elliebedelia (Oct 13, 2008 8:17:55 PM)
good evening Jim

Jim_VA (Oct 13, 2008 8:17:55 PM)
so what size

Aspen (Oct 13, 2008 8:18:04 PM)
Jim, I must be kinda dumb. I've seen so many people just wearing their tubes, it hadn't occurred to me how much an abdominal incision would hurt for a while. Hi elli.

Aspen (Oct 13, 2008 8:18:24 PM)
You will be glad to hear I got a 24

elliebedelia (Oct 13, 2008 8:18:37 PM)
hello Aspen

Jim_VA (Oct 13, 2008 8:18:46 PM)
Hi Karen

Jim_VA (Oct 13, 2008 8:19:16 PM)
yes good

elliebedelia (Oct 13, 2008 8:19:42 PM)
Jim I looked at your website and enjoyed it very much You and your wife have done a wonderful job

Jim_VA (Oct 13, 2008 8:19:55 PM)
How are you tonight

Aspen (Oct 13, 2008 8:20:02 PM)
i didnt even have to ask for it. thats what they had planned.

Jim_VA (Oct 13, 2008 8:20:09 PM)
ty

elliebedelia (Oct 13, 2008 8:20:42 PM)
My joints ache but not too much to complain about How are you?

Jim_VA (Oct 13, 2008 8:21:26 PM)
interesting

Jim_VA (Oct 13, 2008 8:22:05 PM)
I am great ty

elliebedelia (Oct 13, 2008 8:22:21 PM)
And how are you Aspen?

Aspen (Oct 13, 2008 8:23:07 PM)
doing kinda ok. I had a feeding tube installed last Thurs so i am sore.

elliebedelia (Oct 13, 2008 8:23:33 PM)
oh I hope you heal up well and feel better soon

Aspen (Oct 13, 2008 8:23:47 PM)
thx

Aspen (Oct 13, 2008 8:24:15 PM)
anybody know how long it takes for this thing to heal?

elliebedelia (Oct 13, 2008 8:24:32 PM)
I was at a nursing home to visit and asked a lady if she had a good lunch not knowing she had a feeding tube, I felt bad about asking her that

elliebedelia (Oct 13, 2008 8:25:45 PM)
I don`t know Aspen I think it depends on your own situation and You need to be carefull

elliebedelia (Oct 13, 2008 8:25:59 PM)
Do you have someone with you

Jim_VA (Oct 13, 2008 8:26:25 PM)
my last one never hur

Aspen (Oct 13, 2008 8:26:37 PM)
ellie, if someone wants to be offended they'll find a reason. I would not be offended if you treat me like a regular person. My wife is here with me, but I am taking care of the tube myself.

elliebedelia (Oct 13, 2008 8:27:39 PM)
I see yes she was fine I didn`t know her well enough but she sure wants me to come back to see her so it is all OK

elliebedelia (Oct 13, 2008 8:28:25 PM)
I love to visit nursing home residents so often they have no visiters

Aspen (Oct 13, 2008 8:29:59 PM)
Well, Jim, this is my first, so i don't have a ready made hole. Ellie, I just invite you to consider that misteaks (!) may not be offensive.

Jim_VA (Oct 13, 2008 8:30:03 PM)
yes should not offend anyone

elliebedelia (Oct 13, 2008 8:30:44 PM)
thankyou that is good advice

Jim_VA (Oct 13, 2008 8:31:03 PM)
lol

Aspen (Oct 13, 2008 8:31:41 PM)
i wish i had not said that. i am chuckling and it HURTS

elliebedelia (Oct 13, 2008 8:31:51 PM)
where do you live Aspen I live in Preston Ct

Aspen (Oct 13, 2008 8:32:01 PM)
kansas city

Jim_VA (Oct 13, 2008 8:32:34 PM)
did they go down your throat

Aspen (Oct 13, 2008 8:32:53 PM)
yes, but I slept thru all of it.

Jim_VA (Oct 13, 2008 8:33:08 PM)
great

Aspen (Oct 13, 2008 8:34:27 PM)
I cannot imagine the people who said they went in at 9 and went home at 4 after a PEG installation.

Jim_VA (Oct 13, 2008 8:34:28 PM)
That is nice

elliebedelia (Oct 13, 2008 8:35:08 PM)
well things sure effect people differently

Jim_VA (Oct 13, 2008 8:35:16 PM)
it happens

Aspen (Oct 13, 2008 8:36:03 PM)
yes, i guess so.

elliebedelia (Oct 13, 2008 8:36:58 PM)
Aspen are you a large man? Di they have to cut through a lot ? I don`t mean any offence at all just wondering

elliebedelia (Oct 13, 2008 8:38:42 PM)
Did they give you enough pain meds

Aspen (Oct 13, 2008 8:39:15 PM)
not really. There are cemtimeter marks on my tube, and my skin as at the 4 cm mark. And that includes the what do they call it? the clip on the tube inside the stomach.

Aspen (Oct 13, 2008 8:40:25 PM)
They gave me some Motrin, but I think 2 tylenol works better. and yes, i do watch how much tylenol i take.

Jim_VA (Oct 13, 2008 8:41:48 PM)
I know a lady who had no anesthesia

elliebedelia (Oct 13, 2008 8:42:28 PM)
tylenol and motrin don`t seem to have much effect on me at all but it is about all I take aldo. I`m sure give it a few more days and you should start feeling better It is a surgery It is never easy

Aspen (Oct 13, 2008 8:42:59 PM)
wow how many nurses did it take to hold her down, Jim?

Jim_VA (Oct 13, 2008 8:44:28 PM)
lol tough gal

elliebedelia (Oct 13, 2008 8:44:49 PM)
Jim do you have to inherit this form of md that you have or does it come on by itself?

Aspen (Oct 13, 2008 8:44:55 PM)
I am hoping so. I can still eat by mouth, but I hunch that I will eventually be glad i had this done.

Jim_VA (Oct 13, 2008 8:46:08 PM)
no I have sporadic type

Aspen (Oct 13, 2008 8:46:27 PM)
me too. no family history of ALS

elliebedelia (Oct 13, 2008 8:47:38 PM)
A lot of my relatives have myatonic muscular dystrophy as do I , It has to be inherited from a parent as my dad had it

Jim_VA (Oct 13, 2008 8:48:25 PM)
although I believe all types are familial

elliebedelia (Oct 13, 2008 8:48:42 PM)
yes Jim I agree

elliebedelia (Oct 13, 2008 8:50:14 PM)
are you in the same time zone Aspen? It is almost 10 pm here

Aspen (Oct 13, 2008 8:50:53 PM)
going on 9 here, but i need to go work on stuff. clean the tube, etc.

Jim_VA (Oct 13, 2008 8:51:04 PM)
it is a gene problem

elliebedelia (Oct 13, 2008 8:51:25 PM)
I do hope you feel better really soon Aspen

elliebedelia (Oct 13, 2008 8:51:44 PM)
Yes Jim I have a mutated gene

elliebedelia (Oct 13, 2008 8:52:10 PM)
It repeats itself way too many times

Jim_VA (Oct 13, 2008 8:52:28 PM)
how do you do that John

Aspen (Oct 13, 2008 8:52:45 PM)
come to think of it, one of my gmothers had some kind of wasting disease that eventually left her in bed, immobile. I don't remember if she had fasciculations. It was back in the 1950's i think

Jim_VA (Oct 13, 2008 8:52:58 PM)
yes

Jim_VA (Oct 13, 2008 8:53:31 PM)
clean it

Aspen (Oct 13, 2008 8:54:02 PM)
I wash my hands, spray disinfectant on my skin around the tube and scrub it, pour water thru it.

elliebedelia (Oct 13, 2008 8:54:11 PM)
there may be some connection then

Aspen (Oct 13, 2008 8:55:18 PM)
I don't know if ALS was even a name back then. I wouldn't know how to find out more.

Jim_VA (Oct 13, 2008 8:55:30 PM)
use 0.9% saline then Neosporin +

elliebedelia (Oct 13, 2008 8:55:58 PM)
good night gentlemen

Aspen (Oct 13, 2008 8:56:08 PM)
good nite.

Jim_VA (Oct 13, 2008 8:56:12 PM)
yes 140 years

Jim_VA (Oct 13, 2008 8:56:45 PM)
gnight Karen

elliebedelia (Oct 13, 2008 8:57:06 PM)
(This user has left DigiChat)

Aspen (Oct 13, 2008 8:58:11 PM)
& jim, i am sorry to go off and leave you, but i need to go do stuff. I'll visit with you again.

Jim_VA (Oct 13, 2008 8:58:41 PM)
we use rubber gloves

Aspen (Oct 13, 2008 8:59:14 PM)
yeah. they told me washing good was enuf.

Jim_VA (Oct 13, 2008 8:59:14 PM)
no problem take care

Aspen (Oct 13, 2008 8:59:20 PM)
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Jim_VA (Oct 13, 2008 9:19:14 PM)
(This user has entered Living with ALS 2)

Jim_VA (Oct 13, 2008 9:55:21 PM)
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