07.04.2005
03:45 PM - 06:15 PM EDT
ALSchat / LivingwithALS

agreys -- {welcome agreys}
agreys -- Happy July 4th!! Please stay a safe distance from the Beautiful Fireworks, with a water bucket close by.
db273 -- {welcome db273}
db273 -- hi susan
agreys -- Hi, db. How are you today?
db273 -- i am fine and full of good food
agreys -- Oh, that's lovely! Did you eat plenty for me, too?
db273 -- i tried
agreys -- Well, that's great!
agreys -- Having a big get together today?
db273 -- no had it yesterday
db273 -- resting today
agreys -- Yesterday was probably a better day for it, too.
db273 -- give all the ones who have to work time to rest also
agreys -- Yes, it does. I think that's very considerate.
db273 -- it was very hot though
agreys -- Did you have lots of company or go somewhere?
db273 -- we went to youngest son's place he has a party every 4th
agreys -- Yes, we're staying at 100 degrees with high humidity. Hard on PALS.
agreys -- That sounds like a wonderful tradition.
db273 -- first time in a while that a few couldn't make it so was kind of sad
agreys -- On times like that, you look back and remember when those who weren't there this time WERE there.
agreys -- Plus you get to talk about them. =)
db273 -- a sign our family is getting older and involved in different things
agreys -- Families do that, but traditions are always fondly recalled.
agreys -- Who did you especially miss?
db273 -- well i will unload on you my daughter is having boyfriend problems and went to tx to live. he is a loser
agreys -- I hope she didn't take him with her.
db273 -- he took her
agreys -- Unload away. Remember, I'm in TX, so if I can help, let me.
agreys -- Need me to check up on her and send her back?
db273 -- a long story but this is going on about 3 years and we are sick of him. he has not worked in the 3 yearsbeen in jail 3 times 2 bad auto wrecks with maybe drugs involed
agreys -- oh, dear. Where in TX is your daughter?
db273 -- rockwall near dallas
agreys -- I have some awfully nice friends near Dallas.
agreys -- In a place called Gun Barrel City. Isn't that a hoot?
db273 -- sounds fun
agreys -- They're dear friends.
agreys -- How old's your daughter?
db273 -- ate in a place in phoenix where the waitresses carried pistols
db273 -- 42
agreys -- I haven't been there, and my sister lives In Phoenix.
agreys -- When's the last time you saw your daughter?
db273 -- 2 weeks ago
agreys -- Tough question, but do you think she's being abused?
db273 -- no but she is brain washed i think. this guy looks like tom cruise and is 15 years younger
agreys -- Oh, Dear. Does he love her?
db273 -- he says yes does sound like a soap opera
agreys -- Not jump on the couch love her, but just love her.
agreys -- LOL
db273 -- don't know for sure.
agreys -- Well, it looks like my friends are south of Dallas and your daughter's northeast. 60 some odd miles.
db273 -- hope that is far enough for them to be safe from their mess
agreys -- He hasn't gotten her in any trouble with his record, has he?
johnd -- {welcome johnd}
agreys -- Hi, JohnD! What a pleasure to see you!
db273 -- some so far though nothing has stuck to her
agreys -- I'll keep her in my prayers.
db273 -- thank you
agreys -- How are you today, John?
agreys -- And if you need help, please let me know and I'll see what I can do.
johnd -- Is this the ALS chat??
agreys -- Yes, sir, it sure is
db273 -- thanks i will keep that in mind as i worry and pray too
agreys -- Had any spectacular falls to share with us, JohnD?
agreys -- Our kids always stay in our worry radar.
johnd -- I am doing the best I can, no falls to report
agreys -- Glad to hear it! Yours are doozies.
db273 -- great
agreys -- How's that lovely Boss of yours, John?
agreys -- db, have you met John here before?
db273 -- no have not had that pleasure
agreys -- John is in Tennessee. John, db's in Kentucky.
johnd -- My head is getting a little mussy from the falls. the boss is reading this over my shoulder so watch you say Susan
agreys -- LOL...you just make sure you keep her tip jar full, John!
agreys -- Your love for her shows through all your posts.
johnd -- She won't take change said it has to be grren and white paper
agreys -- Well, you didn't marry her 'cause she was dumb!
db273 -- smart girl
agreys -- Yes, indeed.
ryeladi -- {welcome ryeladi}
agreys -- I heard from stormyspice's granddaughter this weekend.
ryeladi -- hi, all, long time no see!
agreys -- Sue!!! How wonderful to see you here!
ryeladi -- thanks, Susan, I have a rare Monday afternoon home
agreys -- How are you doing?
ryeladi -- I'm ok, under the weather today with a touch of a migraine, otherwise just fine
ryeladi -- how is everyone else doing?
johnd -- She puts up with a lot from me, I was thinking about trading her in for a new model. That wouldn't work I would have to train the bew model.
agreys -- I'm so glad you risked it to come in and say HI.
agreys -- I don't see the Boss letting you do any trading, John.
ryeladi -- John, you are so funny!
agreys -- She's just about gotten you broken in, pun intended.
ryeladi -- lol
agreys -- I learned you can get brainfreeze from putting ice cream in your PEG.
ryeladi -- OMG!
ryeladi -- roflmao!
agreys -- Thank stormyspice for that household hint!
ryeladi -- can you get drunk that way too?
johnd -- I am going to take the Boss over my friends house so she can have a good meal.
jeannast -- {welcome jeannast}
agreys -- God bless you for stopping in, John. My best to the Boss.
agreys -- Hi, Jean. How are you today?
ryeladi -- take care, John...
sherryk -- {welcome sherryk}
agreys -- Oh, John. NO playing with matches and fire crackers today, y'hear?
johnd -- Ryeladi, try Jack Daniels and water down the peg tube.
ryeladi -- hi, Sherry!
jeannast -- I am doing okay. How is everyone here?
agreys -- Hi, Sherry. How are you?
ryeladi -- don't have a PEG, but thanks anyways!
sherryk -- didn't want you all to be alone
johnd -- Hi SherryK
agreys -- Bless your heart!
ryeladi -- brb
sherryk -- wow,,everyone almost here
agreys -- Just the nicest folks.
jeannast -- Well everyone, I will be able to chat more often now. I finally had to quit my job. I went on short term disability.
sherryk -- my inlaws just left. other than that quiet
agreys -- Jean, we're always glad to see you. How are you handling retirement?
sherryk -- i remember retirement...ugh...
jeannast -- Okay so far. I don't think it has really hit me yet. It probably will tomorrow.
johnd -- This group picks me up when I am down. Good bye for now you are all in my prayers.
agreys -- Your posts are ALWAYS uplifting John. Take care.
sherryk -- john...i just got here!
johnd -- {goodbye johnd}
agreys -- Sherry, if you put some greenbacks in the Boss's tip jar, he might stay longer.
agreys -- Oop, too late!
sherryk -- Sue ran away too!
agreys -- She has a migraine.
agreys -- We have to get some weight on Sherry.
sherryk -- ooh,,know that one
sherryk -- i'm taking 3 cans now. then i got constipated.. can't win
agreys -- Compleat or Jevity?
sherryk -- jevity 1.5
jeannast -- {goodbye jeannast}
agreys -- Just add more Jevity. It works its way through.
sherryk -- compleat only has 285 cal
sanscott -- {welcome sanscott}
agreys -- Can you still eat?
sherryk -- i feel bloated and full after 1 can
agreys -- Hi, Sandra. How are you today?
sherryk -- sandra, good to see you
agreys -- What about diluting it with water?
sanscott -- ok hi
sherryk -- i can barely handle 8 oz at a time
agreys -- For how long a period do you stay full?
sherryk -- i'll end up on all night feedings
agreys -- How can that work if you're bloated on 8 oz?
sherryk -- 2 hrs. then i got to sqeeze water in and then bathroom. viscous cycle
sanscott -- i can't eat much at atime because of my breathing
sherryk -- it will pump slower and all nite
agreys -- How do you handle that, Sandra?
sanscott -- feel full right away
sherryk -- sandra,,do you feel like your constantly taking deep breaths and anxious?
sanscott -- small eats often
agreys -- How small? How often? ? oz per hr?
sherryk -- sandra, i was taught to take in long breaths through my nose making my stomach extend
sanscott -- not as much now,go bipap more
sherryk -- then blow out long by pursing my lips and tightning my stomach muscles
agreys -- What if you can't take in long or deep breaths?
sanscott -- i still eat regularly
sherryk -- you stack your breaths.
agreys -- I have to remember to do that more often.
sanscott -- no bulbar yet
sherryk -- i take xanax 4 x a day now, breathing txs 2x and cough assist
agreys -- breathing txs?
sherryk -- eating wears me out. i'm into mexican food too
agreys -- We definitely do Mexican food in San Antonio.
sherryk -- Albuterol through a machine
agreys -- Does the Albuterol open you more, or make you more dependent on it?
sherryk -- opens and clears passages in lungs
sanscott -- what stomach Muscles
sanscott -- what stomach Muscles
agreys -- Whatever ones you can muster when you blow out.
sherryk -- abdominal muscles
agreys -- Sherry, when did you start the Albuterol? How much to start?
sanscott -- breathing is because diaphram is pretty well gone
sherryk -- in the hospital. it comes prepackaged in little plastic vials
agreys -- My pulmonologist gave me one and a script, but didn't tell me how/when to use.
sanscott -- s/h put haha On st muscles
sanscott -- BRB
golfer -- {welcome golfer}
agreys -- LOL, Sandra. I got what you meant.
agreys -- Hi, Jack! How are you and how's Rita today?
sherryk -- my caregiver goes on vacation wed
agreys -- For how long will she be gone, Sherry?
golfer -- Hi to all and I hope all of you are haveing a great 4th. Agreys thanks for asking we are doing fine Rita having some problems with breathing today using Bipap more hope you are having a great day.
sherryk -- till the following thur
sherryk -- i thought Rita on a vent?
agreys -- Always nice to see you. How did we get along without BiPAPs before?
sherryk -- she's got a trach?
golfer -- No she is not on a vent yet she only has the Bipap mostly at night but she useing it more in day now also> She does have a trach but not a vent
agreys -- I meant to ask you how that worked, Jack.
sherryk -- does she require allot of suctioning?
golfer -- I think she is sleeping more that she use to during the day does anyone else have that problem. She takes a sleeping pill at night sleeps all night but she also sleeps during day also. She been sleeping for 2-3 hrs now
golfer -- No not a lot we use the cough assist a lot but I guess we also suction her a lot to.
agreys -- Yes, I'm taking naps every day, Jack.
sherryk -- I take 2 xanax atnight and a pain pill to sleep.
agreys -- How often do you suction her?
sherryk -- during day i might take a semi nap for 1/2 -1 hr
golfer -- I was told in our support group if a pals starts sleeping a lot they are going down hill fast. I dont know if that true but that is what I was told. One person did just pass away last month and he sleeped in our meetings have you heared of this before?
agreys -- I put on the BiPAP and nap! during the day. 1 Ambien every 4 hours to sleep at night.
sherryk -- If i put on my bipap i go right to sleep
golfer -- I suction her probably 4-5 times a day. We usually use the cough assist just before bed
agreys -- How do you suction her when she's napping for 2 hours?
sherryk -- i was told to use cough assist in morning
golfer -- I dont if she needs subtion she will wake up this has not been a problem
agreys -- I use it more in the morning, but I think you can use it whenever it's needed.
sherryk -- i will nap out of boredom
agreys -- If she's sleeping more, I wouldn't worry, Jack. She needs the rest, that's all.
golfer -- I use it when she wakes up just to clear her out but we also use it during day and at night
sherryk -- that sounds right
agreys -- How are you holding up, Jack?
golfer -- I am doing ok always tired of course. I have a cna coming 2x a week all day on Fri so I can play golf with my sons I really look forward to that. Rita mom coming on Wed for 3 weeks she is 84 but can help a little. She is a good cook and can wash clother so she will be of some help
agreys -- That's good. Can you get the CNA to come more often?
golfer -- That should be clothes, not clother
sherryk -- getting help is essential
agreys -- Yes, Sherry just said volumes, Jack.
golfer -- Maybe in the afternoon but not all day only on Fri for all day. She works at hosp also
sherryk -- we can't afford much more
agreys -- Take an afternoon extra now and then. Go for a walk, or read a book.
golfer -- I know its essential but they are really hard to find here in Fla. The hspt. are begging for people like her and paying them well so they are really had to find good ones
agreys -- ALSA may be able to help with respite care, too.
sherryk -- brb
agreys -- What about friends you could train on the trache?
golfer -- I had ALS for a little while. They only gave me $750 for the year say that was the best they could do. I gave them over $5000 from Ritas gold tournment last yr and in ret. I got $750. Not this yr its all going to Rita
agreys -- I can't blame you one bit for that!
golfer -- Man I cannot type today that should read golf not gold
agreys -- I know...if I can't figure out what you meant, I'll ask.
sanscott -- I'M Back
db273 -- good that lets me off the hook
golfer -- I know she could go to Hospice and rec some help but she does not want to do that just now
agreys -- My care giver's teen-aged daughter is going to try and start an Extra Hands group.
sherryk -- what about hospice?
agreys -- Does she have all her equipment?
agreys -- db, you have to type perfectly because YOU have an accent! LOL
agreys -- re-hi, Sandra.
db273 -- right
golfer -- Yes she is set with the eq we have almost everything that we can think of to get her
sherryk -- i'm on hospice. They come 2 hrs a day
agreys -- Hospice can really help. Talk with Sherry.
sherryk -- nurse 2 x a week
agreys -- Medicare pays for it, right, Sherry?
golfer -- Maybe thats the way to go I will talk to her at length.
sherryk -- pay for all my meds and tube feeding
sherryk -- i have BCBS primary so they pay
golfer -- Do they pay all of your meds or just the ones you need for als?
agreys -- It sounds like it would be beneficial to you both, Jack.
golfer -- I think you are right Sue.
db273 -- sometimes at our als support meeting we have 4 hospice volunteers there
sherryk -- other than that medicare would pay
ryeladi -- {goodbye ryeladi}
agreys -- db, that helps you realize hospice is not the END!
db273 -- right
sherryk -- i have had a dietician,social worker and a chaplain
golfer -- We have Medicare and BCBS health options usually they both together pays for everything.
agreys -- There you go. Talk with Rita and Rita's doctor.
sherryk -- everything is delivered. no more running
golfer -- I will do that this week. Hopefully she will agree.
agreys -- Please reassure her it's beneficial.
sherryk -- i held off for a long time.
agreys -- Yes, you did, Sherry.
sherryk -- got down to we needed more help
agreys -- Hospice makes sure you get the help and care you need.
golfer -- On another note my son Eric leaves on Fri to go to Scotland to see the British Open. He will be a guest of Jack Nicklaus who is playing his last tourn. at St Andrews. Nicklaus picking up the whole tab what a trip. I sure would like to be in his shoes.
agreys -- Wow! What a thrill that must be for Eric!
sherryk -- scotland wow
sanscott -- !
golfer -- He cannot wait, his wife will be in Dublin Irland that week on business he and my granddaughter flying to Dublin for a few days then he goes to Scotland and heis wife and granddaughter flying to Germany to see her mom.
agreys -- What a wonderful trip. Take photos, get autographs for Rita.
agreys -- You must be busting your buttons with pride!
golfer -- I am sure he will do all of things. I told him to go easy on the pints of beer they serve there.
agreys -- OK, folks. Our chat will end at 14 past the hour, so everyone have a safe and wonderful week.
golfer -- I am very proud of both of my sons. As you know we own a gold store they had to take over when Rita became ill they doing a great job
agreys -- Is it ale or beer they serve in Sotland?
golfer -- golf golf not gold
db273 -- thank you and i will try so bye you all
db273 -- {goodbye db273}
agreys -- I'm sure your sons are but a reflection of you and Rita.
sherryk -- i was just going to say goodbye. see if i can get some food
golfer -- Both I think it was when I went to Scotland a few yrs ago
sherryk -- {goodbye sherryk}
agreys -- Sherry, I'll send you a care package.
agreys -- Well, tell him to not get them mixed up. I want to hear about it when he gets back.
golfer -- Susan you are so nice and say the right things.
agreys -- I'm blessed to know nothing but the finest people to say things to, Jack.
sanscott -- bfn
agreys -- You're one of them.
agreys -- Sandra, take care.
golfer -- Must go now hope you all have a great week see you on yahoo
agreys -- Y'all stay cool and safe.
golfer -- {goodbye golfer}
agreys -- Sandra, you stay warm!