05.01.2006
02:45 PM - 06:15 PM EDT
ALSchat / LivingwithALS

db273 -- {welcome db273}
mr.-edwards -- {welcome mr.-edwards}
db273 -- hi bill
mr.-edwards -- hi db
db273 -- how are you today
mr.-edwards -- fine thank you; and you?
db273 -- i am good have all my chores done for the day so can sit back and relax
mr.-edwards -- if you are looking for some more chores, i know a place in ft. myers...
db273 -- well ok but would take me a month of sundays to get there
jh -- {welcome jh}
mr.-edwards -- well, i can wait. i am not going anywhere; yet
db273 -- hi jh
jh -- hi
db273 -- ok bill will jump on my wheelchair and start don't wait up
db273 -- how are you jh
jh -- ok.r u a caregiver
db273 -- no have als since 4/95
db273 -- from louisville ky male 69
jh -- i have bulbar since 2001
db273 -- ok jh how is your voice and swallowing
jh -- female PA 54
db273 -- ok got that im my memory bank
jh -- no speech.still eating
db273 -- that is good with bulbar we have a guy here in our support group who has that for 30 years
jh -- how is he
vange -- {welcome vange}
db273 -- he lost his voice second year still goes to vegas once a year and transfers and has wore out 4 scooters
db273 -- welcome vange
vange -- Hello and thank you, first time here, husband diagnosed w/ ALS in '04.
mr.-edwards -- welcome jh; welcome vange
db273 -- ok all are welcome here and you can ask or tell us anything we will try and help or listen
jh -- got to go outside before the sun goes off my deck.be back soon
db273 -- ok jh
vange -- well, i think i'm at a crossroads, husband's behavior has gotten toxic with me and our yound kids.
mr.-edwards -- db; did you receive my last email?
db273 -- where are you from vange
vange -- california
db273 -- yes the one about cellphone number
db273 -- ok 3 hours behind us here in ky
mr.-edwards -- yes
vange -- i work full-time, so this is my lunch hour.
db273 -- i will try to do that bill but my long distance is prepaid and you might not get a caller id from it
db273 -- ok vange
db273 -- nice and sunny there
mr.-edwards -- vange- since your time is limited, i will stay in the background; i have all day.
vange -- it's beautiful, that's why we moved from chgo 20 yrs ago!
db273 -- oh are you a cub fan
vange -- no, from the south side, so a sox fan
db273 -- they are second choice for me i lived on north side green bay wi
vange -- my husband also, from libertyville, very close to the border
db273 -- does your husband sit home while you work or does he still work
vange -- he had worked from home as a graphic designer for the past 15 yrs. but couldn't work as of mid-'05 - it began with his arms/hands, then legs, now voice.
db273 -- ok mine was left knee and gradually got a lot more of me but still going slow still drive dx 12/95
dannyd -- {welcome dannyd}
db273 -- hi danny
dannyd -- Hello all sorry I'm late
db273 -- no problem danny
vange -- his has progressed pretty rapidly, in a power chair since mid-'05, voice began slurring jan '06, now we understand about 1/2 of what he says
db273 -- does he have a talking box yet or one ordered
vange -- have an eval scheduled for end of june - things seem to take forever
db273 -- can he type even one finger
vange -- no
db273 -- then that makes it harder to have something to talk for you we just had a gal on here who got the eyeblink thing
vange -- that's what we're hoping for, like what James Woods had in the ER episode.
db273 -- yes it does vange so much time wasted it seems
db273 -- yes that would be good
vange -- do you think i should join the spouse/caregiver chat, i thought this might be better since it's als specific.
db273 -- it is up to you what do you think danny
dannyd -- You should do both if you can
dannyd -- What is his behavior like?
db273 -- vange we have new times now and are on sunday at 3 est and later today at 7 est and wednesday at 7 est
vange -- nothing that the kids or i do for him is good enough, he began drinking alot and has now stopped, but behavior is still the same.
db273 -- sounds like denial to me how old are kids
dannyd -- Is he just angry or does it seem to have any confusion or obsessions?
vange -- 2 girls, 11 + 14. he's always been a bit controlling and now obviously he can control very little.
dannyd -- That will be a huge frustration for him
dannyd -- I have 2 boys the same ages
db273 -- a shame that they have to go through this and it is said it affects whole family with als
dannyd -- Does he go to an ALS clinic?
vange -- he goes to the UCLA ALS clinic every 3 mths
dannyd -- You might check with the neuro-psychologist and make sure he is not developing fronto temporal dementia
dannyd -- It only affects a small percentage of ALS pts, but they seem to be diagnosing it more lately
vange -- interesting, i had no idea, i thought that was one area that was not affected
dannyd -- brb have to get my son from school
db273 -- ok danny
db273 -- i am sorry i said denial cause it is anger instead
vange -- thanks very much
db273 -- no thank you cause we are all in this together and that way we help out each other
db273 -- i was trying to remember the way i was at first
db273 -- we had a lot of shock
db273 -- our dr was very blunt
vange -- we got the initial diagnosis on the phone, from an rn, if you can believe that
db273 -- awful vange
db273 -- i thought that was against the law
vange -- the ucla clinic would not schedule an appt w/o a diagnosis, so we called his local neurologist and we got his rn telling us
db273 -- they should of scheduled a second opinion at als clinic
ragingbear -- {welcome ragingbear}
db273 -- hi jeff
ragingbear -- Hi everyone!
ragingbear -- How's everyone doing today?
db273 -- i am good jeff
mr.-edwards -- fine
vange -- my lunch hour is coming to a close, but i have found some good info on the internet on frontotemporal dementia in ALS patients - thank you
db273 -- thank you vange come back anytime
vange -- {goodbye vange}
ragingbear -- Bill, what did you decide to do on the chat?
mr.-edwards -- 1) stay with the same title; 2) things have been rather slow on this one lately so I am not sure about the extra nights yet. ???????????
ragingbear -- Yeah even a chat as established as this one has ebbs from time to time that is why I want to get the new times established before expanding again.
mr.-edwards -- ok with me.
ragingbear -- I will start advertising the times again on the group to remind everyone about the chats.
dannyd -- Hi all I'm back
ragingbear -- Hi danny!
dannyd -- How goes the website Jeff
ragingbear -- It is going
dannyd -- Did you get your new chair?
mr.-edwards -- db; are you able to give my cell a try now; just to see how it works out?
ragingbear -- yes it is great!
db273 -- ok hang on bill
pigiron308 -- {welcome pigiron308}
mr.-edwards -- fantastic; db. thank you very much; hi there jim
db273 -- hi jim
ragingbear -- Hi Jim!
ragingbear -- How are the other chat times going?
db273 -- wed is busy i think
pigiron308 -- hi Bill, Dick, Jeff, Danny
pigiron308 -- Great
pigiron308 -- a week ago yesterday 0 but all of the rest have been good
pigiron308 -- Jeff I keep looking for your sister's website to come up
pigiron308 -- Bill, got you covered on the phone
mr.-edwards -- thank you very much Jim; it will be a big help for me!!!
ragingbear -- good I am glad to hear that. Her opening has been delayed until August by construction problems in your area.
pigiron308 -- ah- I will keep checking
pigiron308 -- I hope I can work something out with her
db273 -- i am going to supper so see you all and take care
db273 -- {goodbye db273}
mr.-edwards -- see you later, db
ragingbear -- Jim, I will let you know when she is opening.
mr.-edwards -- I am going to shut down now for a while the computer has been on for a long time; hopefully will return later.
mr.-edwards -- {goodbye mr.-edwards}
pigiron308 -- ok Jeff sounds good
pigiron308 -- There is one open out in Fairfax
ragingbear -- She uses one to give samples at organizations she gives presentations to.
pigiron308 -- Ah
pigiron308 -- I am afraid I am an organization of one-lol
ragingbear -- lol
veronica_t -- {welcome veronica_t}
pigiron308 -- My wife's best friend is from Cape Girardeauo
pigiron308 -- hi Veronica
veronica_t -- hello
pigiron308 -- how are you today
veronica_t -- stress, the folks are back for summer been in AZ for 6 months, going to be drilling me with questions
pigiron308 -- oh my
veronica_t -- just not in the mood today
pigiron308 -- are you in MI?
veronica_t -- yes
veronica_t -- my mother just doesn't get it being there for support
pigiron308 -- oh good- my giant brain is working
pigiron308 -- that's too bad
veronica_t -- I got lots of other support, my dad and step mom are great!
ragingbear -- Jim are you joking! I grew up in Sikeston which is 25 miles south of Cape Girardeau and my grandma lives there.
pigiron308 -- no her friend was in the Pentagon very close to where the plane hit
veronica_t -- bye
veronica_t -- {goodbye veronica_t}
pigiron308 -- she saw the fireball from the plane
ragingbear -- incredible
pigiron308 -- her maid name is Seyer
ragingbear -- I do not know that name.
pigiron308 -- She has sisters in Kelso and Scott City
ragingbear -- That's even closer to Sikeston
pigiron308 -- Their married names are Heisserer, and Scherer
ragingbear -- I am familiar with those names.
pigiron308 -- They are Catholic's
pigiron308 -- My wife went to her friends niece's wedding out there
ragingbear -- small world
pigiron308 -- sure is
pigiron308 -- our boys played little league together
pigiron308 -- she always asks if we need anything when she goes shopping
pigiron308 -- oh and Andrew Card lives three houses away from her
ragingbear -- she sounds very nice
pigiron308 -- yes she is
pigiron308 -- Have you ever heard of Lowrey's restaurant
ragingbear -- maybe it sounds familiar
pigiron308 -- my wife talks about it all of the time "home of the throwed rolls"
ragingbear -- You mean Lambert's. I know that restaurant and the family very well!
pigiron308 -- yes - lol
pigiron308 -- My wife just loved it!
ragingbear -- Everyone does. I remember when it was just a 5 table place.
pigiron308 -- wow
ragingbear -- That's why he began throwing rolls because the tables were so close together
pigiron308 -- lol-Well we are going to get timed-out so I will talk to you later
pigiron308 -- makes sense
ragingbear -- have a GREAT week!
pigiron308 -- you too