06.05.2006
02:45 PM - 06:15 PM EDT
ALSchat / LivingwithALS

dannyd -- {welcome dannyd}
db273 -- {welcome db273}
db273 -- hi danny
dannyd -- Hi Dick
db273 -- how is it going
dannyd -- great how about you?
dannyd -- went to an astros game yesterday
db273 -- good thanks
dannyd -- they had an ALS awareness day
db273 -- they lost to cinncy right
dannyd -- introduced us on the field and gave Dr Appel a framed jersy
db273 -- great
dannyd -- yea they lost in the 11th
db273 -- freel did them in
dannyd -- cincy hit like 4 HRs
db273 -- yes they are tough
dannyd -- when does that dj go on trial?
db273 -- he is getting new lawyer a public defender no money left he says
db273 -- still in jail waiting for bond reduction
dannyd -- I've got a $0.15 solution for him
db273 -- tell me
dannyd -- It's a bullet
db273 -- oh bummer i would like to see him live like a als patient for about 25 years
dannyd -- Have you heard from Brian?
db273 -- he was on yesterday some but i missed him also he was on wed night with me
dannyd -- is he doing ok?
db273 -- he did not say much and i did not ask
mr.-edwards -- {welcome mr.-edwards}
db273 -- hi mr edwards
mr.-edwards -- hello all
db273 -- how are you today mr edwards
mr.-edwards -- ok
db273 -- same here
db273 -- how many als patients were there danny
dannyd -- just 2 of us
db273 -- a shame danny but travel is hard on a lot of us
dannyd -- have you read about the guy and his son that visited every major league ballpark
db273 -- no but heard the one who sang national anthem at the ballparks with als
dannyd -- This was something Dr appel put together for his team
dannyd -- he bought his clinic team the tickets
db273 -- jen is going white sox cubs game with les turner tickets i believe
dannyd -- that should be good
dannyd -- although the cubs aren't playing real well
db273 -- yes she said 150 for a ticket
dannyd -- you think they're going to unload Prior or Wood?
db273 -- yes they are not but maybe soon they are in houston tonight
db273 -- no
db273 -- maybe maddux
db273 -- i am going to rest before supper so take care guys
db273 -- {goodbye db273}
mr.-edwards -- {goodbye mr.-edwards}
lag -- {welcome lag}
lag -- Hi everyone, how are all of you today?
lag -- what are we talking about today
dannyd -- Hi laura
lag -- I guess its you and me, Danny
dannyd -- It's been very quiet
lag -- I've been pretty busy today and just just thought I'd check in.
lag -- It seems like it's been quite for a few days based on the transcripts
dannyd -- How are you doing
dannyd -- Yes I know
lag -- I'm good - went to the Clinic last week - everything seems ok
lag -- Ilost 10 lbs, but I was too heavy to begin with
lag -- you are on the living-with-ALS site right?
dannyd -- yes
lag -- Good- I think that's a good place too - although I think there is more interaction here.
dannyd -- I wish we could get more people involved here
lag -- I'm sorry - you're originally from LI - but I forget - are you Bulbar or limb onset
dannyd -- bulbar very slow
lag -- It's funny - I told the Social Worker at my clinic visit and she had never heard of it - I gave her the link and asked he to talk it up
lag -- when were you dx
dannyd -- 12/2000
lag -- I have bulbar - dx 11/05 smpts since 3/04
lag -- Can you still talk, eat, etc.
dannyd -- yes and drive
dannyd -- need to use a walker for balance
lag -- I still drive too, although they would like me to stop because I have a foot drop and some balance problems.
dannyd -- I haven't lost any muscle, but I'm really stiff
lag -- My speech is getting worse and I have the foot drop, but other than being slow at almost everything (except thinking) I am ok.
dannyd -- I'm the same
lag -- I've lost muscle in my left hand, but can still use it for most things. And, the muscle in my right calf is atropheed.
dannyd -- foot drop is very minimal
dannyd -- where do you live again?
lag -- Well - you are moving slow then - or I'm moving fast - you started 4 years before me.
lag -- Staten island, New York
dannyd -- do you go to columbia?
dannyd -- or Mt Sinai?
lag -- No matter, I still do everything for myself and I have a very loving, faithfilled family - so I think my head is in the write place.
lag -- No, I go toRobert Wood Johnson - in NewBrunswick, NJ - it's closer to where I live.
lag -- I started at Mt. Siani with Dale Lange
dannyd -- don't lose any more weight
dannyd -- the heavier the better
lag -- I am trying hard not too - although my family can;t believe how much I eat.
dannyd -- do you do alot of choking?
lag -- i use to eat very, very fast and now I eat like a snail - maybe that's why I lost the weight.
dannyd -- that is common among PALS
lag -- Not too much - I've managed to figure out how to cut my food and take my time. I eat everything but steak.
dannyd -- alot of times they get tired by the end of the meal
lag -- Ido, but I love food so I don;t give up until it's all gone.
lag -- do you have choking? and how is your breathing?
dannyd -- choking if I don't pay attention or try to talk and eat at the same time
dannyd -- my breathing at last clinic was 83%
lag -- Yeah - I hear you, what about when you forget and breath in while you're swallowing
lag -- Breathing seems good - that's great.
dannyd -- sometimes but usually it is when allergies are bad and my nose is stuffed up
dannyd -- I never had allergy problems in NY
lag -- I see - I usually get a runny nose when I eat.
lag -- I don;t have allergies - thank god.
dannyd -- how old are you?
dannyd -- I'm 47
lag -- I was telling my daughter the other day, that you have no idea how many things you use just to eat or stand, or dress.
lag -- I'm 53
dannyd -- it gives you a great appreciation of the little things
lag -- I have a renewed awe for people who have had a disability their entire life.
lag -- I never even thought I'd be happy that I could still take a shower by myself.
dannyd -- my wife has one of her best girlfriends living on Staten Island
lag -- Where about - I live in Tottenville.
lag -- It is a great place t live, my husband and I are natives.
dannyd -- I don't know the area but they live on Grasmere
lag -- We raised our family here - and my son and his wife, and grandson live 4 blocks from me - and my daughter and her husband are moving back in Sept.
dannyd -- the zip is 10305
lag -- Grasmere is on the other side of the Isalnd not too far from the Verrazano Bridge - I live near the Outerdridge, across from Perth Amboy, NJ
dannyd -- was only there once almost 20 yrs ago
lag -- I hope I;m not holding you up - you are moderating tonight?
lag -- It's changed so much in 20 years, overcrowded and bad traffice
dannyd -- I think for all the time I lived there I was only on Staten island a couple of times
dannyd -- yes I'll be back later
lag -- I have some friedns in Grasmere - the Girardi's and Groeschel's
lag -- Ok - I'll see you on the chat later - enjoy dinner.
dannyd -- talk to you soon
lag -- Bye
lag -- {goodbye lag}