05.22.2006
02:45 PM - 06:15 PM EDT
ALSchat / LivingwithALS

dannyd -- {welcome dannyd}
mandra -- {welcome mandra}
mandra -- {goodbye mandra}
mandra -- {goodbye mandra}
dannyd -- Hi mandra
db273 -- {welcome db273}
db273 -- hi danny
dannyd -- Hi Dick
db273 -- looks slow today
dannyd -- Yea and yesterday too
db273 -- i have not seen brian lately is he all right
dannyd -- Was he not there last wednesday?
db273 -- no
dannyd -- I haven't heard from him
db273 -- well will see this wed if he shows up
dannyd -- brb gotta get my son from school
db273 -- ok
popi -- {welcome popi}
popi -- How is everyone feeling today?
db273 -- welcome popi
db273 -- i am good thank you and you
popi -- Got a question. I am kinda a new fish and am progressing really fast. I am trying to keep my shoulder working and wonder which kind of excercises are best. I have a pully system and am working my arms and am doing some lifts with pvc pipe but wonder what else?
db273 -- i am no expert but i have all ways been told only to stretch the muscles
db273 -- range of motion type thing keep them loose
popi -- A littlea bout myself, since i do not recognize anyone, I am John and was dx on 2-27-06 and have very weak arms, sound like a drunk, and am getting a little weaker in my lrgs. I tire very easily. Things are changing way too fast to suit me. I have a wife and 2 boys, one 4 and one 7. I am 52 and wondering about 53.
db273 -- i can only say keep ahead of your progress as much as you can
popi -- what kind of atretching excercises do you think. I am surely low impact,
db273 -- and like all of us live today
popi -- I am trying as hard as i can.
db273 -- a pt or ot can give you some but mine was not used to als type stuff
db273 -- all you can do then
db273 -- it takes a toll on family too
popi -- I made the decision to stay at home with my kids and quit work and now it looks like the right choice with my abilities going away faster than i ever expected.
db273 -- yes you are smart there
popi -- db273- I know Dick and Jim and Julie,, can youn tell me a little about yourself?
db273 -- i am dick
db273 -- i am 69 dx 12/95 slow progression tire very easy and my voice is getting weak
db273 -- started left knee
popi -- sorry, i can not read my own crib notes, Hi again dick
db273 -- no problem popi
popi -- I am jealous of any slow progression and am praying for a plattau real soon.
db273 -- i am jealous of brad pitt
popi -- My voice and swallowing are weak but my wind is still pretty good if i don't let myself get too excited.
popi -- I am past spanking the boys now and now the wife has to do all the corporal stuff, see, there is positive stuff all around us.
popi -- We can have good attitudes and that is, I think, beyond Mr. Pitt
popi -- Had a water heater go out today and found it hard t call someone to do what I always did fr myself. It huurts my back pocket too.
popi -- Dick, do you have a power wheelchair? If so do you have a van or carry it on a trailer hitch, which is best>
db273 -- i have a blazer suv and have lift on back cause it is cheap way
db273 -- yes power chair for about 4 years now first 3 were a loaner
popi -- what model of chair?
pigiron308 -- {welcome pigiron308}
pigiron308 -- hi all
popi -- Hi Jim
pigiron308 -- How are you?
popi -- I am better than i deserve and worse than i like lol
pigiron308 -- lol - good one
popi -- Jim, you have a permobile don't you? mind saying how you move it from place to place?
pigiron308 -- Do you mean a van?
popi -- yes, I am looking at the prospect of finding a van or putting something on the trailer hitch.
dannyd -- Hi all I'm back
popi -- I have seen some vans on ebay but they are pretty pricy
pigiron308 -- I have a rear entrance Dodge Grand Caravan
pigiron308 -- Hi Danny
pigiron308 -- They are a bit pricy
popi -- sounds nice. I have only seen the chevy with rear entrance, is it a tight fit? The rear entrance seemed to be better if you can have 2 rows of seat ahead of you.
pigiron308 -- I also have a Ford E350 with a Braun side entrance lift
pigiron308 -- My Dodge seats 4 plus me
popi -- which would you recommend as best?
pigiron308 -- I bought the Ford for my mother before she passed away
pigiron308 -- I prefer the rear entrance Dodge but there are advantages and disadvantages with both
pigiron308 -- I actually believe the Ford rides better
popi -- I am very confused with all of the stuff i will be needing, and want to get the "right stuff" if i can
dannyd -- Popi have you decided if you will get a PEG and a vent when necessary?
popi -- unfortunately, i kinda have a beer budget.......
pigiron308 -- Yes quite a problem
pigiron308 -- I think Danny is right on track
pigiron308 -- Your decisions now should be based on your future plans
popi -- dannyd- right now i think that a peg is all i want, but am broiling inside trying to weigh the values. I want to b here but not if the quality id at too high of a price, my family is young and I do not want them to have to give up too much even though I know they already are giving up a lot.
pigiron308 -- Your plans could change of course
dannyd -- Have you started losing any weight?
popi -- I am hoping that my progression will be one that allows to get the full run out of ByPap and i am going to get a PEG early instead of later.
popi -- True about plan changes i am already off the scale on changes.....
pigiron308 -- How fast is your progression
popi -- I am a robust 248 lbs and have lost from 260 to 245 in about 3 months. I eat all i can and am diabetic and probably should weigh 180 on skin and bones I am 6'2 and big boned.
dannyd -- You should think about the PEG now. You don't want to lose anymore weight
dannyd -- The heavier pt's always fare better
dannyd -- Less chance for the disease to start burning muscle if there is adequate fat stores
dannyd -- Where do you live?
pigiron308 -- I am 240 and went down 170 then back up
popi -- I was dx 0n 2-27-06 and have had symptoms for another year before that. I have the shakes, trouble swallowing, talk like a drunk and my arms feeel pretty dead. My shoulders have atropied and my walking is somewhate llerchy. I have gone at a pretty steady pace to the point where it is hard to dress and bath and i have to pace everything i do and when i overdo i pay for it for at least a day. My doc says i have 3 mos until i will be in a chair. so.......who knows, I am praying he is wrong.
popi -- My neck is very weak and i use a headmaster part of the time.
popi -- my grip is suprisingly good though.
pigiron308 -- It is better to be in a chair than chance a fall
dannyd -- You need to start looking at chairs now as it will take a little time to get one
dannyd -- That and riding will conserve energy
popi -- I am using a scooter now when n stores and have a scooter for trips etc.
pigiron308 -- yes- get a custom chair
popi -- It seems like stress is as hard on me as the physical stuff.
dannyd -- Do you go to an MDA ALS center?
popi -- I am planning on ordering a chair on Sept 1st and am looking for the best one. I think i may have a loaner lined up until then and am looking for a van or lift.
dannyd -- Where do you live?
popi -- I ive in Midland Texas and am planning to move to the Austin area to be closer to my 2 daughters.
dannyd -- I live in Leander about 20 miles north of Austin
dannyd -- Where were you dx'd?
popi -- I have seen some nice houses on the net in the leander area. I am lookin towards hutto, pluggerville and north austin.
popi -- I was dx in Midland and second opinioned in Dallas
popi -- Is there a good pulmonologist and nuerologist near leander?
dannyd -- There are several good docs here
popi -- who do you use? and more importantly, do you like him or her?
dannyd -- I travel to Houston to go to the clinic at Methodist hospital. They're great
dannyd -- I see Dr. Stanley Appel and his team
dannyd -- But locally there is Dr. Adam Horvit who runs the smaller clinic in Round Rock
popi -- Dannny- when were dx
popi -- Dannny- when were dx
dannyd -- He is the one that referred me to Appel
dannyd -- 12/2000
popi -- Italked to someone from lubbock that goes to houston, think
dannyd -- That is probably Brian
dannyd -- Goes by catsman
popi -- Yes that is right, my brain cells are a little foggy sometimes.
dannyd -- When you move into central Texas I would suggest you go to see Appel and his team
dannyd -- It is 1 stop shopping
popi -- My handwriting and printing used to be good and now i can barely scribble, now i usre the pewter for keeping track of stuff.
popi -- I liked the dallas one stop and was planning on Houston or san antonio, either way it ain't that much of a trip.
dannyd -- you'll see an OT, PT, RT, pulmonologist, neurologist, dietician, social worker, lawyer and financial planner if you want
popi -- i need one from each collum......
dannyd -- MDA in Houston usually picks up the tab for the visit for whatever your insurance doesn't cover
popi -- gotta love that MDA, the peole i have come accross have all been great.
dannyd -- I do as much fundraising for them as I can
popi -- do you drive dowqn and back or stay over night? I have been flying to dallas, so anything is an improvement.
dannyd -- I usually go down the night before. The clinic is usually the first friday of the month
dannyd -- The normal schedule for follow ups is every 3 months
popi -- do you see someone in between? I am not too sure how many 3 month visits i have..
dannyd -- they have a little get together the night before from like 6:30-8:00 where pt's and their families can come and meet each other before clinic
dannyd -- For folks that are progressing faster they will do monthly or bi-monthly
popi -- That sound real nice. I am hoping to level off real soon, hopefully that leveling happened last night.........lol
popi -- As we all must do i take things one day at a time and praise God for the journey. Some extra quality of life seems to be gained by stonger sence of urgent apriciation of things once taken for granted.
dannyd -- That's very true
dannyd -- Keeping a positive attitude is also beneficial
popi -- Disability only wins if you let it, & I ain't planning on hiding anywhere.
popi -- Being of a loquacious nature this troulble speaking only helps me to think twice before saying nothing. That is unless one of the boys is into something..
dannyd -- How is your speech?
popi -- If i try real hard i am understandable. But when tired i am a little rummy. I don't get to order at fast foood speaker phones anymore. I have a Dynavox DV- 4 on order and plan on teaching it some colorful language as soon as possible.
popi -- I am only afraid that the Dynavox will not be able to grab those boys when they need it. Lord grant us grace.
dannyd -- I've heard good things about them
popi -- I hope for the best but am planning for the worst, communication is a necesssity for me.
popi -- how is your speach Danny
dannyd -- My speech is still intelligible but very slow
ragingbear -- {welcome ragingbear}
popi -- opps, my spelling is terrible, thanks for phonics.
dannyd -- Hi jeff
pigiron308 -- Hi Jeff
popi -- jeff- i looked and the chat site and some of your stuff today and it was great.
ragingbear -- Hi everyone, I just got back from my daughter's 5th grade graduation.
popi -- congratuations, precious moments huh
pigiron308 -- wow Congratulations
ragingbear -- Thank you, the website is still very much a work in progress but I am very excited about the chatroom company that I went with.
popi -- I put it on my favorites and plan on visiting
ragingbear -- Yes the graduation was both thrilling and sad since she starts middle school next year!
pigiron308 -- Are people promoting new chats?
dannyd -- my son does the 5th grade grad thing on thursday
pigiron308 -- Congratulations to you also!
ragingbear -- I have been distracted from building it because we're trying to buy a house.
pigiron308 -- I mean other than yours and this.
popi -- My second grade son will be finishing this friday.... it is going to be my first summer at home with kids.
ragingbear -- Congratulations danny, is he your last one in elementary school?
pigiron308 -- More Congratulations are in order John!
dannyd -- Yes my oldest is finishing his freshman year
dannyd -- You'll love it
dannyd -- Kids are great
pigiron308 -- My youngest is 41
ragingbear -- Yes Jim, that is why I re-mentioned the chatroom on my website because why start a new one and pay for it when there is a toy
popi -- I spent the past 33 years as a work-a-holic and outside of vacations and serious illness was never very directly in the line of fire.
popi -- my oldest is 32
ragingbear -- one already set up!
pigiron308 -- I agree 100%
ragingbear -- sorry I accidently hit send.
pigiron308 -- I have been visiting MD and LGMD chats
popi -- I have an extra thumb too sometimes.. it always wants to hit send..
dannyd -- how has the participation been?
pigiron308 -- I get double clicks
ragingbear -- my youngest is 1 Jim! LOL Only 40 years separates them!
pigiron308 -- about the same as ours
popi -- my fingers have the twitches sometimes and i never was that much of a typist.
pigiron308 -- lol- Jeff
ragingbear -- and I join the 40 club in October
pigiron308 -- They invited me to a positive thinking chat Thursday
pigiron308 -- been there; ;o)
pigiron308 -- They think I have a good attitude
ragingbear -- Well the chat will end at 15 after so everyone have a GREAT week!!!
ragingbear -- Hey Jim did you go to the Candlelight Vigil?
pigiron308 -- Yes, thanks Jeff you too
ragingbear -- my sister and niece were there
pigiron308 -- no I was stiffed by my Rep so I didn't go
pigiron308 -- I will meet her in August
ragingbear -- too bad
dannyd -- Will see everyone next week. Have a good one
popi -- {goodbye popi}
ragingbear -- hopefully if they find a new building
pigiron308 -- you too
popi -- {goodbye popi}
pigiron308 -- yes
pigiron308 -- there is an ALS walk in October
ragingbear -- I will keep you updated on their progress
ragingbear -- I will tell her