Living with ALS

Jim_VA (Feb 24, 2010 6:15:03 PM)
(This user has entered Living with ALS)

pete46 (Feb 24, 2010 6:15:20 PM)
hi jim

pete46 (Feb 24, 2010 6:16:55 PM)
hi jim

Jim_VA (Feb 24, 2010 6:17:58 PM)
hi pete \

pete46 (Feb 24, 2010 6:21:17 PM)
how are you doing?

Jim_VA (Feb 24, 2010 6:24:56 PM)
have you ever talked to joe on jeannies chat

pete46 (Feb 24, 2010 6:26:14 PM)
not that i canremember, does he go by joe?

Jim_VA (Feb 24, 2010 6:28:53 PM)
i am good how are you

pete46 (Feb 24, 2010 6:29:12 PM)
good thanks

Jim_VA (Feb 24, 2010 6:35:30 PM)
i need to find joe

pete46 (Feb 24, 2010 6:36:02 PM)
is he on plm?

Jim_VA (Feb 24, 2010 6:37:56 PM)
he might be

pete46 (Feb 24, 2010 6:39:18 PM)
do you kneo his username

pete46 (Feb 24, 2010 6:43:40 PM)
or where hes from?

Jim_VA (Feb 24, 2010 6:45:22 PM)
he is around pittsburgh

pete46 (Feb 24, 2010 6:48:27 PM)
couldnt find any joe from pa on plm

pete46 (Feb 24, 2010 6:49:59 PM)
and i haven't met any joes on jeannies chat that i remember

pete46 (Feb 24, 2010 6:53:48 PM)
soerry jim i couldnt be of more help

pete46 (Feb 24, 2010 7:00:44 PM)
(This user has left DigiChat)

pete46 (Feb 24, 2010 7:02:58 PM)
(This user has entered Living with ALS)

pete46 (Feb 24, 2010 7:03:08 PM)
got disconnected

Jim_VA (Feb 24, 2010 7:03:51 PM)
wb

pete46 (Feb 24, 2010 7:04:04 PM)
ty

Jim_VA (Feb 24, 2010 7:08:22 PM)
i had to make the print bigger

pete46 (Feb 24, 2010 7:08:33 PM)
ok

pete46 (Feb 24, 2010 7:09:11 PM)
what size did you make it?

Jim_VA (Feb 24, 2010 7:12:44 PM)
i will find joe 20pt

Jim_VA (Feb 24, 2010 7:15:23 PM)
i think that i have talked to him

iris1 (Feb 24, 2010 7:22:25 PM)
(This user has entered Living with ALS)

pete46 (Feb 24, 2010 7:22:38 PM)
hi iris

iris1 (Feb 24, 2010 7:24:33 PM)
Hi, Do you all mind if I just visit with this chat room until Myotonic chat starts this evening? My husband has Myotonic and I am his sole caregiver. Are there any Caregivers on this chat tonight?

iris1 (Feb 24, 2010 7:25:13 PM)
(This user has left DigiChat)

pete46 (Feb 24, 2010 7:25:31 PM)
i guess she changed her mind

iris1 (Feb 24, 2010 7:29:15 PM)
(This user has entered Living with ALS)

pete46 (Feb 24, 2010 7:30:00 PM)
hi iris did you get disconnected?

iris1 (Feb 24, 2010 7:30:07 PM)
I was cut off. Did my 1st message get into this chat? I could not tell for being cut off.

pete46 (Feb 24, 2010 7:30:28 PM)
we are both patients and you are certainly welcome to join us

pete46 (Feb 24, 2010 7:30:50 PM)
what did you say your husband has?

iris1 (Feb 24, 2010 7:31:53 PM)
Myotonic Muscular Dystrophy.

pete46 (Feb 24, 2010 7:32:17 PM)
nice to meet you iris

pete46 (Feb 24, 2010 7:32:33 PM)
how long has your husband had his disease?

iris1 (Feb 24, 2010 7:33:41 PM)
Since 2002 once we retired, we found out. Many people in his family had this same thing.

pete46 (Feb 24, 2010 7:33:56 PM)
sorry to hear that

pete46 (Feb 24, 2010 7:34:06 PM)
how old is he?

iris1 (Feb 24, 2010 7:34:26 PM)
How many people are usually on this chat?

pete46 (Feb 24, 2010 7:34:37 PM)
it varies

iris1 (Feb 24, 2010 7:35:05 PM)
Do you ever have any Caregivers on the chat? I know it just depends.

pete46 (Feb 24, 2010 7:35:48 PM)
not recently that i recall, mostly patients

iris1 (Feb 24, 2010 7:38:45 PM)
He is 66 years old. Thank goodness we have a Hoyer lift, because it is just me here and I cannot keep getting him up when he falls. The lift is very, very helpful.

pete46 (Feb 24, 2010 7:39:09 PM)
does he fall often?

iris1 (Feb 24, 2010 7:41:02 PM)
Yes he falls often, his legs and hips just give away with him. He can still use his Rolator Walker(the one with brakes and seat) at all times. We use the wheelchair when he goes out.

pete46 (Feb 24, 2010 7:41:38 PM)
and he falls using the walker

iris1 (Feb 24, 2010 7:43:25 PM)
yes that is right he falls even using the walker.

pete46 (Feb 24, 2010 7:43:50 PM)
maybe he should start using wheel chair in house also?

iris1 (Feb 24, 2010 7:44:24 PM)
Pete46 do you use a wheelchair at all times?

pete46 (Feb 24, 2010 7:44:58 PM)
yes i can't walk any longer at all, cant stand up either.

pete46 (Feb 24, 2010 7:45:13 PM)
i am either in my wheelchair or in bed

pete46 (Feb 24, 2010 7:45:26 PM)
i am probably in wheel chair 16 hours a day

iris1 (Feb 24, 2010 7:46:56 PM)
My husband is in his wheelchair all day long while up watching TV the only time he walks is to go to bathroom and then down the hall to bed. He gets tired and sleepy very easy.

iris1 (Feb 24, 2010 7:47:27 PM)
How long have you had your disease and what is your age?

pete46 (Feb 24, 2010 7:47:33 PM)
i see, he cant get wheel chair in bathroom?

iris1 (Feb 24, 2010 7:48:04 PM)
Can you get your wheelchair in bathroom?

pete46 (Feb 24, 2010 7:48:13 PM)
i am 63 and was diagnosed 8/08 but i had symptoms as far back as early 06

iris1 (Feb 24, 2010 7:49:13 PM)
Who is your caregiver and do you live in your own home?

pete46 (Feb 24, 2010 7:49:22 PM)
no i used to wheel to door of bathroom and take about 3steps with walker to get on toilet. i can no longer do that and now i have a bedside commode

iris1 (Feb 24, 2010 7:50:04 PM)
Can you transfer from wheelchair to bed by yourself or do you need help?

pete46 (Feb 24, 2010 7:50:16 PM)
i live with my youngest daughter and her family and they own the home. i will be moving to a als residence though soon

iris1 (Feb 24, 2010 7:50:50 PM)
We live in South Louisiana, where do you live?

pete46 (Feb 24, 2010 7:51:33 PM)
i can transfer from w/c to bed and back only because the bed is a hospital bed and the w/c is a power chair and both can be raised and lowered. so to get in bed, i raise w/c and lower bed,

pete46 (Feb 24, 2010 7:51:42 PM)
i live in massachusetts

iris1 (Feb 24, 2010 7:54:25 PM)
Thank you for the information about transfering from one to the other, that is something that will have to be done here soon, I think. My husband has a regular wheelchair and also a power wheelchair. He uses his regular most of the time. Uses the power chair outside to go to my garden and around the yard.

pete46 (Feb 24, 2010 7:54:52 PM)
does it have an elevating seat option?

iris1 (Feb 24, 2010 7:55:25 PM)
Yes it has the elevating seat.

pete46 (Feb 24, 2010 7:55:43 PM)
and does he have a hospital bed?

iris1 (Feb 24, 2010 7:56:19 PM)
No hospital bed, but does have a bed rail that he uses to get in and out of bed.

pete46 (Feb 24, 2010 7:57:08 PM)
as long as he can still stand he should be able to get in and out

pete46 (Feb 24, 2010 7:57:36 PM)
i cant stand any longer so i need to slide from one to the other

iris1 (Feb 24, 2010 7:58:01 PM)
I think I might be able to get on the Myotonic chat now. I will close here for this evening and it was very nice talking with you and getting some ideas for later. Have a good evening.

iris1 (Feb 24, 2010 7:58:16 PM)
(This user has moved to Myotonic Chat Group)

pete46 (Feb 24, 2010 7:58:18 PM)
nice meeting u

CRIS (Feb 24, 2010 8:02:31 PM)
(This user has entered Living with ALS)

pete46 (Feb 24, 2010 8:02:40 PM)
hi cris

CRIS (Feb 24, 2010 8:02:52 PM)
hi pete and jim

CRIS (Feb 24, 2010 8:04:02 PM)
how are you today?

pete46 (Feb 24, 2010 8:08:58 PM)
i am good thanks jim is trying to find someone

CRIS (Feb 24, 2010 8:09:32 PM)
find someone on line?

pete46 (Feb 24, 2010 8:10:25 PM)
someone named joe

CRIS (Feb 24, 2010 8:11:33 PM)
there are alot of joes out there....lol

pete46 (Feb 24, 2010 8:11:56 PM)
yes there are

CRIS (Feb 24, 2010 8:12:20 PM)
wish I had one

pete46 (Feb 24, 2010 8:12:36 PM)
one what? a joe?

CRIS (Feb 24, 2010 8:14:02 PM)
a joe, harry, charlie, pete....doesn't matter

pete46 (Feb 24, 2010 8:14:11 PM)
lol

CRIS (Feb 24, 2010 8:19:31 PM)
any word from the other Jim?

pete46 (Feb 24, 2010 8:19:58 PM)
i haven't heard anything

CRIS (Feb 24, 2010 8:21:48 PM)
not good

pete46 (Feb 24, 2010 8:24:56 PM)
don't know

CRIS (Feb 24, 2010 8:40:42 PM)
we should go over to the other chat....there are 7 people there

pete46 (Feb 24, 2010 8:42:03 PM)
i like to stay here until its over in case a newcomer comes on with questions

CRIS (Feb 24, 2010 8:45:41 PM)
Hen is trying to get in chat

hen (Feb 24, 2010 8:45:56 PM)
(This user has entered Living with ALS)

pete46 (Feb 24, 2010 8:46:07 PM)
hi hen

pete46 (Feb 24, 2010 8:46:13 PM)
she made it

CRIS (Feb 24, 2010 8:46:22 PM)
there you are

pete46 (Feb 24, 2010 8:46:40 PM)
glad you could make it

hen (Feb 24, 2010 8:47:30 PM)
hi u guys

hen (Feb 24, 2010 8:47:34 PM)
thanks pete

pete46 (Feb 24, 2010 8:47:45 PM)
yw

CRIS (Feb 24, 2010 8:48:34 PM)
how have you been, Hen?

hen (Feb 24, 2010 8:49:00 PM)
pretty good

hen (Feb 24, 2010 8:49:10 PM)
still struggling at work, but hanging in there

hen (Feb 24, 2010 8:49:38 PM)
and yesterday got wet from rain and kinda caught a cold I think, sore throat and cough, but not bad

hen (Feb 24, 2010 8:49:42 PM)
how are you both?

pete46 (Feb 24, 2010 8:49:44 PM)
sorry for work problems

pete46 (Feb 24, 2010 8:49:56 PM)
i am good thanks

hen (Feb 24, 2010 8:49:58 PM)
thanks pete

CRIS (Feb 24, 2010 8:50:39 PM)
doing OK except leak came back from rain

hen (Feb 24, 2010 8:50:42 PM)
it's been challenging to say the least

hen (Feb 24, 2010 8:51:01 PM)
oh man, we had a leak too :(

pete46 (Feb 24, 2010 8:51:40 PM)
lots of rain here today and tomorrow and friday then changing to snow for two days

CRIS (Feb 24, 2010 8:52:35 PM)
where is your leak, hen?

hen (Feb 24, 2010 8:53:03 PM)
dining room

hen (Feb 24, 2010 8:53:37 PM)
and yours cris?

hen (Feb 24, 2010 8:53:44 PM)
snow again pete....wow

CRIS (Feb 24, 2010 8:53:57 PM)
I just put a bucket under the leak....doorway of second bedroom

hen (Feb 24, 2010 8:56:23 PM)
oic

pete46 (Feb 24, 2010 8:56:28 PM)
there's a hole in the bucket dear liza dear liza

hen (Feb 24, 2010 8:56:44 PM)
hubby put a large towel...smart

hen (Feb 24, 2010 8:57:02 PM)
oh brother

hen (Feb 24, 2010 8:57:56 PM)
hi jim, or did he leave?

hen (Feb 24, 2010 8:58:08 PM)
any word on your move pete?

hen (Feb 24, 2010 8:58:30 PM)
computer lagging now, geez

hen (Feb 24, 2010 8:59:24 PM)
brb

CRIS (Feb 24, 2010 9:02:52 PM)
pete and hen....I am going over to other chat....hope to see you there

pete46 (Feb 24, 2010 9:03:20 PM)
ok i'll be there in a while, need to raise my feet for a while

pete46 (Feb 24, 2010 9:03:38 PM)
bye all

CRIS (Feb 24, 2010 9:03:40 PM)
ok

CRIS (Feb 24, 2010 9:04:01 PM)
(This user has moved to Wheelchair Gang)

hen (Feb 24, 2010 9:07:21 PM)
b ack

hen (Feb 24, 2010 9:08:28 PM)
u still here pete?

hen (Feb 24, 2010 9:13:06 PM)
well i'm headed to w/c gang chat, hope to see you there... hugs

hen (Feb 24, 2010 9:13:15 PM)
(This user has moved to Wheelchair Gang)

Jim_VA (Feb 24, 2010 9:20:11 PM)
(This user has left DigiChat)

pete46 (Feb 24, 2010 9:30:40 PM)
(This user has moved to Wheelchair Gang)