04.10.2006
02:45 PM - 06:15 PM EDT
ALSchat / LivingwithALS

pigiron308 -- {welcome pigiron308}
mr.-edwards -- {welcome mr.-edwards}
dannyd -- {welcome dannyd}
dannyd -- Hi Folks sorry I'm late
dannyd -- How is everyone today?
libby_j -- {welcome libby_j}
libby_j -- hello
dannyd -- Hi libby
libby_j -- Wondered where evryone had gone!
mr.-edwards -- still here.
dannyd -- Did you get any further in a diagnosis?
libby_j -- Somewhat
dannyd -- What are they saying now?
libby_j -- Excluded some of the nasty possibilities but the Prof will not commit yet muscle bx and further EMG and muscle MRIs soon
libby_j -- it seems muscle cell ie myopathic not neurogenic
libby_j -- but as i say they need more info
dannyd -- It has to be awfully frustrating...not knowing
libby_j -- I sigh
libby_j -- i am fading fast
libby_j -- real impacy from EMG but neuro says the muscles are so sick its no wonder very rare has not seen before
libby_j -- impact
libby_j -- anyhow im getting tired now have a good afternoon over there. Bye
libby_j -- {goodbye libby_j}
dannyd -- Be back shortly I have to get my son at school
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- anyone here?
blueeyes1 -- brb
blueeyes1 -- {goodbye blueeyes1}
mr.-edwards -- i am still here.
blueeyes1 -- {welcome blueeyes1}
blueeyes1 -- how are you mr edwards
mr.-edwards -- ok
blueeyes1 -- me 2..finally got outside..I had to use power wheel chair my bak is going..in pain all the time
blueeyes1 -- do you have pain?
mr.-edwards -- yes I do; all of the time; head, arms, legs.
dannyd -- Hi all I have returned
blueeyes1 -- hey danny I miss susan
dannyd -- Me too
dannyd -- I heardd she is not doing well
sam2108 -- {welcome sam2108}
dannyd -- Hi sam
mr.-edwards -- If Susan's last name is Staples, accord ing to last transcript, she passed away.
sam2108 -- hello. Background - I am from STL, I'm 33 and my wife was diagnosed with ALS last July. We have a 2yo son. This is my first time on here.
dannyd -- I don't know. I was away all weekend
blueeyes1 -- welcome sam I see you found our site
dannyd -- I had clinic last friday
blueeyes1 -- danny she is gone..she passed saturday night
dannyd -- Sam, I'm 47 and live just north of Austin
dannyd -- I was dx'd in 12/2000
blueeyes1 -- I was diagnosed in Jan 2005
dannyd -- I have 2 sons ages 14 & 11
blueeyes1 -- sam how is she doing physically?
sam2108 -- She can't use her hands very well and has problems walking - espcially up or down steps. Her speach is becoming slurred. It worries me that this is only after 9 months time.
sam2108 -- Danny, how are you doing, physically?
dannyd -- That is fairly quick
dannyd -- I'm progressing unbelievably slowly
dannyd -- My form appears to affect mainly upper motor neurons only
blueeyes1 -- was she diagnosed with lower onset or bulbar onset sam?
dannyd -- That me I don't have any muscle loss just stiffness and spasticity and with that comes robotic walking and no balance
blueeyes1 -- my seems to be progressing again..this time my back is atrophying and in terrible pain going to have to use power wheel chair now...I have had this since aug 2004 before being diagnosed
dannyd -- How is her breathing?
blueeyes1 -- that's wonderful danny...I'm happy for you
sam2108 -- Her breathing is fine - no problems there.
sam2108 -- Jen, You say you had problems with your back before being diagnosed... my wife had problems with her knees as far back as college (12 years ago) I've often wondered if the two problems are linked
blueeyes1 -- yes I have narrowing of the spine and my discs...I have always wondered too but thought that it was family related
sam2108 -- Danny, can you get up out of chairs without help?
dannyd -- Yes if they are high enough
dannyd -- With this disease you will find if you hips are sitting below your knees it becomes very difficult to get up
sam2108 -- Yes, I know what you mean. We are forced to sit in the bar area of restauants because they usually have taller chairs. She cannot get out of a booth without help - and she hates to have help!
dannyd -- So I use extra cushions so that my hips remain above my knees
dannyd -- She will learn to except help in time
dannyd -- It took me quite a while to let someone help me
dannyd -- It is because it feels like you are losing your independence
sam2108 -- Danny, you you had a constant progression or do you seem to platau for a while?
dannyd -- It's hard to say
sam2108 -- My wife has always been very conscience of people looking at her. She doesn't like to be ther center of attention and I think that is the root of the problem
blueeyes1 -- one sec phone
dannyd -- I just progressed so slowly that the changes were so subtle
blueeyes1 -- I remember that when I had t
blueeyes1 -- use a cane sam..now I have a tr
blueeyes1 -- trach and I don't realize it a
blueeyes1 -- anymore
dannyd -- If you go to the web site called https://www.patientslikeme.com/user/login you can look at my progression
sam2108 -- Thanks Danny, I will.
dannyd -- It is a free site run by Ben Heywood and Jeff Coles
dannyd -- You can sign your wife up and track her progress
sam2108 -- I've tried to get her on some of these sites but she doesn't want anything to do with them yet. I will keep it in mind though.
sam2108 -- I've got to go - I'm at work and the phone has decided to ring off the hook. Thanks for the chat - I'll talk to you again later. Good luck to everyone.
sam2108 -- {goodbye sam2108}
dannyd -- She'll have to come to terms with it in her own time and way
blueeyes1 -- I must go sorry I'm on the phone I"ll be with you guys later
blueeyes1 -- {goodbye blueeyes1}
pigiron308 -- {welcome pigiron308}
pigiron308 -- hi all
dannyd -- Hi Jim
pigiron308 -- just you are me?
dannyd -- I think mr ed is still around
pigiron308 -- and
pigiron308 -- ah
dannyd -- how's the website coming
mr.-edwards -- i am here
pigiron308 -- do you know anyone coming to advocacy day?
dannyd -- No I don't
pigiron308 -- hi E, my son is in Sarasota
pigiron308 -- ready
mr.-edwards -- almost yelling dis tance
pigiron308 -- yep
pigiron308 -- I have finished most of the website it is active but I still need a couple of soft soap letters
pigiron308 -- DeLay got a line through his name; 0)
pigiron308 -- I think I am going to make a new home page and go right into the religious text
mr.-edwards -- that sounds like a great idea to me.
dannyd -- what do you mean right into the religious text?
pigiron308 -- My bro-in-law just went back to TN and he is going to have his Baptist Minister check it out
pigiron308 -- look at the Biblical Facts at www.stemcellpals.com
pigiron308 -- quite a bit of research went into it
pigiron308 -- do you belong to a Church?
dannyd -- yes and no
pigiron308 -- ah
dannyd -- I'm a member of a lutheran church but I am not active
dannyd -- I have a problem with most organized religion. I feel like all they are concerned about is your donation
dannyd -- I have a strong faith, but have not found a church that wasn't concerned with the almighty dollar
pigiron308 -- no kidding I am a MO Synod Lutheran but we are at odds over this issue
dannyd -- I also have trouble with some hypocritical congregationists
pigiron308 -- I know what you mean
dannyd -- They have this mis conception that because you go to church once a week for an hour it gives you the right to be an asshole for the next 6 days
dannyd -- and then Sunday rolls around and all is forgiven
pigiron308 -- Have you ever heard of a Pastor Loachman or something like that?
dannyd -- no who is he?
pigiron308 -- MO Synod in I believe Salem TX (does Salem sound right)
pigiron308 -- I have read blogs he wrote-sounded like a jerk
dannyd -- don't know a Salem TX
pigiron308 -- One of those-my way or the highway
dannyd -- gotcha
pigiron308 -- I will see if I can find the site later
pigiron308 -- My good friends are ELCA
pigiron308 -- I also have ELS, and WELS friends-they are far far right
mr.-edwards -- you have friends in higher places!
pigiron308 -- I hope so-lol
pigiron308 -- I hope so-lol
pigiron308 -- do you go to a church E.?
mr.-edwards -- I was afraid you would ask me that. Not for a while now; a bit of a problem between the church and me! Sound familiar?
pigiron308 -- oh yea
pigiron308 -- I don't promote one church over the other-that is individual preference
mr.-edwards -- I have been a member of this church since 1965; for the past year, they have been helping me out finan cially and I ask them to give me a 3 month notice when they would stop; they gave me a 30 day notice.
pigiron308 -- wow thats a shame
mr.-edwards -- That is not quite the words I used!!!
pigiron308 -- I heard that loud and clear!
pigiron308 -- I think I would go back like nothing happened
mr.-edwards -- Unfortunately, one of the young people there paid me one of those "house invasions" one evening and then verbally attacked me in church and I had 2 more mini-strokes after that. No, I am not able to return there when he is there.
pigiron308 -- Ah
mr.-edwards -- Before we get closed off, I plan to re turn to this chat to night at 9pm.
pigiron308 -- look for another church-they may help
pigiron308 -- I will try to come back also
mr.-edwards -- That is difficult when I need the bus and no one understands me when I try to talk; especially on the phone.
pigiron308 -- no relatives?
dannyd -- have you gotten a speech device yet?
dannyd -- Check the MDA or ALSA loaner closets for a device
mr.-edwards -- No device. Relatives; one sister who lives on second floor (can't climb stairs) other sister (in efficiency=no room) one brother who lives "actually in the woods. No loner when you are not dx.
pigiron308 -- are you a VET
mr.-edwards -- No. (4F) classified.
pigiron308 -- :0(
mr.-edwards -- I will close off now before they close it be back tonight.
pigiron308 -- FL sounds as bad as VA
dannyd -- The chat will close in less than 5 minutes
pigiron308 -- ok me 2 bye
dannyd -- I don't think I'll be able to be here later, but I will try
mr.-edwards -- Later.
pigiron308 -- by Danny
mr.-edwards -- {goodbye mr.-edwards}