01.23.2006
03:45 PM - 07:15 PM EDT
ALSchat / LivingwithALS

libby_j -- {welcome libby_j}
libby_j -- {goodbye libby_j}
libby_j -- {welcome libby_j}
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- Hey Libby how are you feeling?
blueeyes1 -- brb
blueeyes1 -- {goodbye blueeyes1}
libby_j -- {goodbye libby_j}
issnowwhite -- {welcome issnowwhite}
issnowwhite -- Hi, I hope I am in the right chat group. Is this for people with any type of muscular disease?
issnowwhite -- I thought some one was going to be around to chat? Maybe this is the wrong info.
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- yes it is snow I'm jen welcome
issnowwhite -- {welcome issnowwhite}
issnowwhite -- hi Jen
blueeyes1 -- how are you today?
issnowwhite -- Are you able to chat now?
blueeyes1 -- yes I'm sorry I was checking out another chat..whwere are you from?
issnowwhite -- I am ok. I have recently been diagnosed with Mitrochondrial disease
issnowwhite -- It say's it's a form of neuromuscular disease
issnowwhite -- ALS what exactly is that?
blueeyes1 -- lou gherrig's disease
blueeyes1 -- what is that exactly?
issnowwhite -- I am from Long Island New York. I had a aunt that had Lou GD.
blueeyes1 -- I am from Indiana
issnowwhite -- It attacks all your muscles, loss of strength, movement and alot more.
blueeyes1 -- sound like als
issnowwhite -- Are you in pain alot
blueeyes1 -- only when they cramp up a lot I try to walk as much as I can...but the breathing doesn't let me sometimes
issnowwhite -- I am having difficulty getting used to this disease. It is becoming so limiting
issnowwhite -- My arms are of hardly any use. Can't walk much, also breathing has been bothered by this disease also
blueeyes1 -- yes with each progression I have it is the same for us...I understand I used to work out 3 times a week, work a full time job and take care of the kids
anna -- {welcome anna}
libby_j -- {welcome libby_j}
blueeyes1 -- hi anna
anna -- Just dropped in to tell Snow the Mito chat is later today, although she is welcome at any chat: Mon., 9:00-10:00 PM Eastern MITOCHONDRIAL CHAT, Talk to, share with and encourage others facing the challenges associated with mitochondrial myopathy. Hosted by Laurie "lfitzger," Kristie "hoodlum," Rod "scrod," Jennifer "jennifer-s," Donna "riley04" and Misty "mistybrown." -- Weekly
issnowwhite -- Yeah, I was also very busy person. I have had these signs for 4-5 years. Just now they did a muscle biopsy and found this out
anna -- Have a nice chat.
issnowwhite -- Hi anna
anna -- {goodbye anna}
blueeyes1 -- are you using a breathing device
issnowwhite -- no. I do use it at night
issnowwhite -- I will try to do the Mito chat tonight
blueeyes1 -- I used to use bipap..libby does noww..I use a vent
issnowwhite -- I couldn't use the bipap, cause of the congestive heart failure. I brought up too much water with the bipap
issnowwhite -- So I use oxogen at night.
issnowwhite -- How long have you had ALS?
blueeyes1 -- does that help?? A year
issnowwhite -- Kinda. How does your family handle your disease?
libby_j -- Snow have you had a muscle biopsy?
blueeyes1 -- well mom was in denial at first...now it's an off and on thing...kids have changed and are so caring and helpful and hubby just worries as I progress what our next hurdle will be
issnowwhite -- Hi libby, yes I had it and then a blood test that confirmed it.
issnowwhite -- My parents are both deceased. My family tries to joke about it.
libby_j -- confirmed als? Sorry I missed the details
issnowwhite -- Keep a stiff upper lip and all that. No, I don't have als, but I just came into MDA. I wanted to find out what ALS meant.
issnowwhite -- I think we are all in a similar boat. Lousy dibilitating disease no matter what you have
libby_j -- Im in the midst of dx, thought to be LGMD, now possible SMA and or motorneuron
libby_j -- yes and like you my arms and breathing are bad
issnowwhite -- I can't believe it takes so long for a diagnosis
pigiron308 -- {welcome pigiron308}
issnowwhite -- I miss being able to cook, clean
issnowwhite -- hi pigiron308
libby_j -- its almost 2 years for me but in the uk the waiting lists for appointments with specialist are 12 months and the same for many tests
blueeyes1 -- it's funny that it does because in all disease they say catch it early
pigiron308 -- hi all
blueeyes1 -- hi pigiron
issnowwhite -- Some days are worse than others. Some days I can't even get going
libby_j -- I dont miss cleaning but hate the house needing cleaning!
pigiron308 -- ;o)
issnowwhite -- That's a shame it takes so long.
issnowwhite -- I am having trouble depending on people too. How do you learn to accept this
libby_j -- Take it a day at a time and alawys have a back up plan to avoid disappointment of support of others
issnowwhite -- Do any of you have other health problems?
libby_j -- Im diabetic on insulin
blueeyes1 -- what's new with you pigiron
issnowwhite -- What about you Blueeyes and pigiron
blueeyes1 -- well supposedly I had asthma for years and now I only take one inhaler instead of 3 different meds
pigiron308 -- not much just working on my website
blueeyes1 -- is this jeff?
pigiron308 -- how about with you?
pigiron308 -- no Jim
libby_j -- Im going to head to bed, its.30 here in the UK..nice to meet you all..G'night
libby_j -- 9.30
dannyd -- {welcome dannyd}
blueeyes1 -- sorry forgive me I forget everyone's names..me learning I have to use vent more when I need it
blueeyes1 -- hi danny
issnowwhite -- goodnight Libby
libby_j -- night danny!
pigiron308 -- gn libby
issnowwhite -- hi danny
dannyd -- Hi everyone sorry I'm late
pigiron308 -- hi danny
libby_j -- {goodbye libby_j}
blueeyes1 -- I always forget
dannyd -- How is eveyone today?
issnowwhite -- hanging in there
issnowwhite -- and how are you
blueeyes1 -- good read more of my book
issnowwhite -- Since I really don't belong in this chat. I want to say thanks for talking to me. And wish you all well.
blueeyes1 -- it's ok, thanks for chatting snow and I wiwsh you well..remember stay positive it will help you fight
issnowwhite -- {goodbye issnowwhite}
blueeyes1 -- does anyone have a peg here?
ragingbear -- {welcome ragingbear}
blueeyes1 -- hi jeff
dannyd -- I don't
ragingbear -- Hi everyone!
ragingbear -- I don't
pigiron308 -- the anti-abortion group is here being stupid--they should have waited until after the Alito deal is over
pigiron308 -- hi jeff
ragingbear -- How's everyone doing?
blueeyes1 -- doing good just wondering if I should get a peg or try protein shakes first
pigiron308 -- fine and you?
pigiron308 -- if you can drink I wouldn't get a peg yet
blueeyes1 -- I am not hungry don't want to make my meals too much to exhaust my breathing and I lost 14 lbs in 3 months
ragingbear -- Jen, Susan (agreys) has a peg so she would be the best for any of those questions. Are you having swallowing issues?
dannyd -- Jen, How much weight have you lost?
blueeyes1 -- no eating issues 14lbs
blueeyes1 -- I have her email I'll ask her
pigiron308 -- I had a peg and had it removed
gjlscals -- {welcome gjlscals}
dannyd -- If you don't readily choke you can probably just do milk shakes or dietary supplements
dannyd -- Hi Gayle how are you doing?
blueeyes1 -- pt said try protein shakes and see what happnes for meals
gjlscals -- I am doing okay-just getting used to having time on my hands.
ragingbear -- Jen, don't you have a already and if so it really comes down to if your swallowing is compromised.
pigiron308 -- I drank Isosource for a year
blueeyes1 -- i thinkI am more concerned if my breathing is compromised more will they do onelater
blueeyes1 -- hi gayle nice to see you
ragingbear -- If you not choking then you should really be on the ventilator 24/7 except for short periods and you will be amazed how much more energy and APPETITE you will have
gjlscals -- Jen - if you don't have a PEG now, I would go ahead and get one. George didn't use it at first for nutrition but it was good to have if we needed to push fluids for some reason.
pigiron308 -- I am on a vent and that makes a lot of difference
blueeyes1 -- I'm scared of doing that jeff....I use the vent after getting ready in morning and during day if I am having problems
blueeyes1 -- and 12 hours or moer at night
pigiron308 -- I have learned to eat with the cuff inflated--thanks to Dave
blueeyes1 -- I have a cuffless trach the cuff choked me
pigiron308 -- I have used both but I need the cuff at night now
blueeyes1 -- gayle I am going to talk to breathing doc about peg and see what he thinks and about using vent more
blueeyes1 -- I must go, I have to lie down...take care and thanks for chatting see you next week
ragingbear -- You might not need to get a peg but if you push your weakness too far you will HAVE to get a peg and STILL vent 24/7! There is absolutely NO reason to be scared because your energy level will return to close to what it was BEFORE getting ALS! I have only had cuffless trach for 8 years
ragingbear -- Jen don't get a peg until you try venting 24/7
pigiron308 -- my blood ox level drops drastically if I fall asleep with the cuff down and I have crazy dreams
blueeyes1 -- we would have to rearrange our family room first that is a big step for all of us
ragingbear -- why do you have to do that?
blueeyes1 -- we have a trilevel home and we would have to move a bed downstairs so ican be close to the chair and the bed and vent set up
ragingbear -- we did not have to do that we have my view on a rolling cart.
pigiron308 -- I had a very difficult time with the cuff when I first got it
ragingbear -- is there a bedroom on the main level?
gjlscals -- I need to get back to work. See you all next week - thanks for all the good thoughts and prayers - they have helped a lot.
blueeyes1 -- all bedrooms are upstairs..main level is living room/dining room/and kitchen
gjlscals -- {goodbye gjlscals}
blueeyes1 -- hugs gayle my prayers are with you
blueeyes1 -- downstairs is family/office/laundry room/bathrrom
traveler -- {welcome traveler}
traveler -- Hello, im new to the chat room and just want to join
pigiron308 -- can the office be moved upstairs/
blueeyes1 -- I must go dinner is here...thank u for your help
pigiron308 -- welcome traveler
dannyd -- Hi traveler
ragingbear -- make the office a bedroom and in the long run consider moving
blueeyes1 -- welcome traveler
traveler -- Hi, I have been diagnosed with ALS in the past 6 mo,.
dannyd -- Are you a PALS
blueeyes1 -- see you next week
blueeyes1 -- {goodbye blueeyes1}
dannyd -- I was Dx'd 12/2000
traveler -- I cant walk or balance or stand. My speech is affected.
dannyd -- Where do you live?
traveler -- Tucson
dannyd -- Im just north of Austin, TX
traveler -- Are you getting alot of rain?
dannyd -- My balance is terrible
dannyd -- I wish. We need rain so badly
dannyd -- Do you have a wheelchair
aidens_mom -- {welcome aidens_mom}
dannyd -- Hi Kara
aidens_mom -- hey Danny! How are you?
dannyd -- I'm doing great
dannyd -- How is the weather in upstate NY
aidens_mom -- oh that's good to hear! I'm doing really well myself!
aidens_mom -- oh, about 4-5 inches of wet heavy snow this morning
sanscott -- {welcome sanscott}
aidens_mom -- I bought a nowblower this year as I can no longer shovel, but when I used it I hurt my shoulders pretty bad...it's a big machine.
dannyd -- My kids have never seen that much snow at any one time
dannyd -- Hi Sandrea
aidens_mom -- Lewis seems a bit afraid of it! Hey, if I can drive it., so can he, right? I'll be giving him a lesson when he comes home tonight. :-)
aidens_mom -- We finally took Aiden out in teh sled around the yard. Oh, I could do without the snow and cold. My muscles completely freeze in cold.
aidens_mom -- Wish I could send some dnow to your kids Danny :-)
dannyd -- I know what you mean
dannyd -- I become a robot when it's cold
aidens_mom -- yah, I'm like the tin man without his oil can!
aidens_mom -- hey, some exciting news for me...I traded my tiny Honda Civic for a Sienna mini-van!
aidens_mom -- I had been homebound as I was unable to hoist Aiden into teh back carseat in the tiny Civic and in teh cold my arms were really giving out...
dannyd -- That must help alot
aidens_mom -- then I tried to get him in one day for a doctor ap[pointment and I losts him...he slid the wrong way into the carseat and I could not fix him! I finally pryed him out and fell to teh ground crying...but holding on to him...
aidens_mom -- that was the lst straw...now I have a van which I don't have to bend down to get him into and I can kneel on the floor as I'm getting him in and I can rest there if I need to.
aidens_mom -- I LOVE my van! I feel like I have a new freedom!
dannyd -- Traveler have you been to an ALS clinic?
dannyd -- That's so great Kara
sanscott -- i am Sandra not Sandrea. hi all
dannyd -- Sorry
sanscott -- no problem
aidens_mom -- yeah Danny, and I made sure I got one that can be modified if ever need, but I feel so good, I don't think I'll ever need that :-)
aidens_mom -- Hi Sandra
sanscott -- jeff-i feel great on the vent- wish i had done it sooner
sanscott -- thanks again for all your help
aidens_mom -- hey, did you all hear that ER is doing an episode all about a man with ALS? Airing Feb. 2
sanscott -- i'll have to watch it
dannyd -- Yea I heard James Wood does a great job
dannyd -- I think they had ALSA as technical advisors
pigiron308 -- Chow has arrived--got to Campbell up ;o). Be well all and see ya later!
dannyd -- Take care Jim
pigiron308 -- you 2
pigiron308 -- {goodbye pigiron308}
dannyd -- Does anyone else have an MDA Stride n Ride event coming up?
aidens_mom -- it will be good to bring awareness to teh general public. I am so surprised at how many people tell me they have never heard of it...of course more know it by Lou Gehrig's name, but many still don't know taht.
aidens_mom -- ugh, unexpected visitor. back later.
dannyd -- Sandra where do you live?
sanscott -- manitoba canada
sanscott -- u?
dannyd -- How much snow do you usually get over the winter?
dannyd -- I'm just north of Austin TX
dannyd -- I grew up in New York
sanscott -- lots of snow
dannyd -- Miss that for a minute and then I come to my senses
ragingbear -- I am glad you're doing great on the ventilator Sandra! I try to tell people do it sooner than waiting to weaken themselves.
sanscott -- how right you are
sanscott -- fear of the unknown
ragingbear -- Also the medical community needs to change it's general opinion of ventilator life or at the very least quit giving misinformation about life on a ventilator.
dannyd -- The description of life on a vent is very old school
dannyd -- The perception that life is limited on a vent needs to change
ragingbear -- Well the chat will end at 15 after so I want to tell everyone to have a GREAT week!
ragingbear -- That's what I have tried to do
dannyd -- Unfortunately it is a very slow process
ragingbear -- for over 8+ years!
dannyd -- I think we got the problem with the Monday night chat fixed
sanscott -- yes to all said!
sanscott -- c u
ragingbear -- What was the problem?
dannyd -- We were unable to logon
ragingbear -- goodbye Sandra
dannyd -- it wasn't an option in the dropdown list
dannyd -- take care Sandra
ragingbear -- Did you email Penny?
dannyd -- I went into the Mito chat last week and Hoodlum says hello
dannyd -- Yes Penny fixed it
ragingbear -- not sure who that is
dannyd -- I think she had to name the night one Living with ALS 2
ragingbear -- that works
dannyd -- I think her name is Kristie
dannyd -- the database didn't recognize 2 chats on the same day with the same name
dannyd -- Anyway she spoke highly of you and I gave her your estore address
ragingbear -- sounds familiar but I have met so many people over the years
ragingbear -- I am glad she liked me!
ragingbear -- feel free to give out my email address
dannyd -- okay
dannyd -- talk to you soon