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Kennedy's Disease Chat Transcript 08-04-2007
Topic: Open Forum
Host: Terry Waite
TerryW: Hey there
norminstormin entered the room.
Murf: Hey norman
norminstormin: good morning
Murf: How is Northern Ontario?
TerryW: I am just trying to get going, early here
norminstormin: very nice weather
Murf: Terry - how the weather in California?
TerryW: It has been Hot, A/C broke yesterday
TerryW: A Large capacitor in the /C heat exchanger/compressor went bad
Murf: 79 in Houston and the A/C works //1
TerryW: fixed now
TerryW: I have a home warranty that I bought
Murf: good Norman doesn't have to worry about A/C just heat!!
TerryW: It pays off for me every year
Murf: I do that too. pays for itself every year
Murf: Norman - the fishing should be getting good. are the bugs out in full force?
norminstormin: lotsa black flies
norminstormin: fishing is awesome
Murf: yup , just like I remember it //2
TerryW: I had a man call me the other day that was 80 years old and was just diagnosed with KD
TerryW: He did not show any symptoms until 6 months ago
TerryW: Very strange
Murf: really - wow
TerryW: I told him he was kucky
Murf: how old are you Norman?
Murf: ya, I'll say
TerryW: he was a marathoner also
Murf: Have you registered with Terry (KDA) YET?
norminstormin: no i dont think so
TerryW: so what is the hot topic of the day?
MICH entered the room.
Murf: wHEN WE GET FINISH jUST GO TO THE kda SITE AND jOINwhen we get finish just go to the kda site and join
norminstormin: ok i will thank you
TerryW: hi Mich
Murf: it doesn't cost a thing but it allows us to find out how many KD'ers are out there and you can elect to receive up-dates if you want
MICH: Good Morning Terry, Murray and Normin
Murf: Morning Mich
norminstormin: good morning mich
Dart! entered the room.
MikeG entered the room.
TerryW: Hey Dart!
Murf: Morning Dart Mike
norminstormin: hi dart
norminstormin: hi mike
Dart!1813 entered the room.
MikeG: we finally got some sun in sunny Florida
Murf: another dart ... morning
Murf: Looks like no rain in Houston for one day
Dart!1813: G'morning All!
Murf: they're calling for rain tomorrow
TerryW: Will the real Dart! please stand up
Murf: My contractor is working like mad out there to get something done
MikeG: Tampa had over a foot of rain in three days!
Dart!1813: The 'real' one does not have a 1813!
TerryW: no rain here since Feb
TerryW: we need it bad
Murf: want some?
Murf: I can't keep it out of the pool.
TerryW: Have you been watching the bride tragedy?
MikeG: we had the same problem until last week, Terry.
Murf: ya bad luck
MikeG: yep - Florida is now in the process of condemming bridges...
Murf: they think there are 8 more to find
TerryW: could have been way worse
Murf: Bush just landed there
TerryW: if the river was a deep river
Murf: or if it was in the heart land
Murf: Mississippi closed
Murf: Market crashes
TerryW: I hear that
Michael17860 entered the room.
Murf: Headline news for sure
Murf: Hey Michael
Michael17860: Hi All'
norminstormin: hello michael
MICH: How are things in Paxinos?... what is a Paxinos?
Michael17860: does any one have a trailer carrier for their scootter?
TerryW: I have an external platform lift that hooks up to my receiver hitch
MICH: No trailer, I use a Gmc Yukon for my powerchair
MikeG: no - I carry mine in my van.
Michael17860: Paxinos is in PA, and things are great here Mich.
Murf: Mine goes in the back
norminstormin: dont have a scooter just got a cane
Murf: I need to get a trailor to haul 5 - 6 chairs to Las Vegas
mjo5712 entered the room.
TerryW: How are everyones Abdomen muscles, are they weak? when you bend down is it hard to straighten back up?
Murf: Norman - you need a 4 wheeler and a skidoo
norminstormin: yes that,d be good
Michael17860: I have been pricing them, ( the ones that hook up too the back of the truck) kind of salty.....
MICH: Terry, for sure hard to get back up after bending
MikeG: oh yeah - sometimes I can't get back up... need to help myself up with my arms.
norminstormin: it,s very hard to straighten back up
Murf: and a boat ... i'm jealous
Murf: Me too mike
norminstormin: have a tough time getting out of chairs
Murf: I had to get a lift chair for the house
Murf: It stands me up
TerryW: I have found that long drives on windy roads is real hard on me due to your automatic reflex around corners to tighten up the muscles in the turns, I fet real sore
TerryW: i Get
Murf: Terry you need to get a Lexus
TerryW: side support seats
mjo5712: ive been doing exercises 4 to 5 times a week and ;my back is always sore
Murf: get Susanne to buy you one
MICH: Murf... did you find that insurance or Medicare doesn't cover lift chairs anymore??
TerryW: I still drive my 1992 Toyota 4Runner, 200,000 miles and still runs and looks excellent, a little less power though
Murf: I claimed mine on my flex account
Michael17860: Mike G how are you feeling?
MikeG: not bad, just a little sore in my lower back. Paula got a pedometer and started doing 10k steps a day so I got one and was surprised to find that I do about 2 or 3k steps a day in the house - without a cane.
Murf: My pool will go on income tax and uncle Bush will pay for some
Michael17860: Good for You........
MICH: For the Vegas Conference... what it exactly is the part about a dinner with Knights?? Josting?
MikeG: how 'bout you?
TerryW: Mike I was doing about 7-8 k a day
MikeG: how long ago was that Terry?
TerryW: but now Its is less since I got the Yamaha Rhino to get me around
TerryW: 8 months ago
MikeG: that's good.
MikeG: I was surprised - I had no idea I was walking that far in the house...
Michael17860: Not Bad over did some house work, and had to take it easy for a few days.
TerryW: I have found that it is still good to walk as far as you can to keep the muscle that you have in tone
TerryW: if you dont walk at all I found that it makes it worse
mjo5712: does anybody still ride stationary bike for exercise
Murf: It's a dinner show where you eat in the stile of Knights without knives or forks and watch (cheer) for your knight to win. King Aurthor stuff. It's the best dinner show in Vegas
TerryW: I hear that Michael
MikeG: that's exactly right Terry.
TerryW: Murray is going to Joust on Horsback for us
Murf: not me //10
TerryW: He is hgoing to use his can as a joust pole
norminstormin: i gotta get some sort of exercise regiment cuz i cant even walk half a block without having to lean on something
TerryW: not Cann LOL
MikeG: Michael, I find that if I over-do, it takes me sometimes weeks to recover. Not good to to too much...
TerryW: Norm, just take it easy
Murf: and my Xterra as a horse
norminstormin: i try to
TerryW: do only what you feel is comfortable
Michael17860: Mjo do you ride a stationary bike, how long do you do it for?
mjo5712: i have a exercise regiment but it does'nt help the walking problems
Murf: We start falling when we over do it
kellyC_ entered the room.
MikeG: mjo, I was told that a recumbent is better exercise for us.
Murf: Hey Kelly
Michael17860: I have been taking creatine and it help me recover alot quicker.
norminstormin: does anyone have any problems with their arms
mjo5712: i ride 25 to 30 mins 3 to 4 times a week
TerryW: Downhill walking is most dangerous I think
kellyC_: hi all! good morning!
TerryW: hi Kelly
Murf: Kelly meet norman both first Canadians
kellyC_: hey terry!
norminstormin: hi kelly
kellyC_: Norman? from what province in Canbada
TerryW: Bananas help
MICH: I've started to use a walker on the grass in our yard... and should try some walking in a pool... anything else is short distance... a few feet... arms for sure aren't very good... an blood test is showing extra creatine from muscle inflamation
kellyC_: oh ok.... hi norman plz to meet ya am from Sask
mjo5712: what is recumbent exercise
norminstormin: nice to meet youtoo
kellyC_: //1 ..TY
Michael17860: I put a banana in my oatmeal every morning
MikeG: a recumbent bike - the laid-back kind.
MikeG: the only thing about a recumbent bike is I can't keep my feet in the pedal straps...
norminstormin: the other day at work my left arm just went toatally weak could,nt even lift it over my shoulder
Murf: Gary is also from Norther Sask but is not on this morning. He normally goes to the conferences so expect to see him in Vegas for sure.
MikeG: they have several at the gym here in Sun City Center but I can't use them... :(
mjo5712: my mid section is strong for exercise but i have to watch how over doing especially the wieghts
kellyC_: yup i get like that alot Norman! esp when i do hard work with the arms then they just dont work! weak Muscles
norminstormin: that gets like that lots now
Murf: The only muscle in my body that is still strong is between my ears (I think)
mjo5712: i picked my bike up at garage sale 30 dollars
kellyC_: Dont do any Lifting or strenous stuff involving the Muscles.. Norm! or otherwise we pay for it ...lol
mjo5712: ive had to repair it several times
norminstormin: i was just bagging groceries and had to stop
kellyC_: @times i cant hold a cup of coffee myself //15
Murf: Repetative work kills us
kellyC_: yuppers Murf
MikeG: mjo, you and Don & I need to meet and do lunch or dinner sometimes with our wives.
Michael17860: Has any one tried electronic muscle stimulator?
Murf: Like pulling a one armed bandit
MikeG: we're only 20 miles or less away.
mjo5712: im trying to get fit enough to operation on my knee
MikeG: you ever eat at the Brandon Ale House?
Murf: mjo5712: bad knee?
Murf: Mine buckle and down I go!
norminstormin: so does mine
MikeG: Michael, my brother has - said it works pretty well.
mjo5712: mikeg lets do lunch. anywhere
Murf: I'm top heavey
mjo5712: need knee replaced
Michael17860: Been think of getting one, But not sure.....
kellyC_: LOL I now have a big belly myself... LOL.. never had that before//6
kellyC_: and skiiny little arms and legs lol
Murf: Get a power chair first
MikeG: my chiropracter used one on me when I was in Atlanta. Kinda weird getting shocked constantly...
TerryW: Kelly, Like an olive on a toothpick?
kellyC_: is that like a EMG? Mike?
Murf: TerryW: LOL
kellyC_: lol yuppers Terry
MikeG: no - it's a pad that has electrods on it and the doctor uses it to stimulate your muscles.
kellyC_: oooooooooo..ic.. ic... ok!
MikeG: no needles...
Michael17860: if it contracts the muscles, like they are working, it would seem to help.
MikeG: EMGs suck!
kellyC_: yeah i had that done before yup
Murf: No needle on EMG any more
MikeG: I think we all had to go through that trama...
Murf: We get them every year in NIH for the trial
kellyC_: Try going to spend 3 days in a Sleep Clinic.. LOL with all those wires hooked up to ur head lol
MikeG: no needles???
mjo5712: has anybody had any major surgery
Murf: This year was only an hour //2
kellyC_: yeah i had mine done at the NIH..... murf
Murf: No they use electrodes now
kellyC_: and here in sask a few tomes lol
MICH: Amen to sleep studies... I failed for a CPAP... as I roll around too much... settled for oxygen concentrator
Michael17860: Yes Mjo, Back surgery and sinus surgery.
kellyC_: Really! Mich! bummer
Murf: I have a CPAP too
TerryW: They issued me a CPAP, I returned it because I roll too much
TerryW: I now user nothing
Murf: a lot of us have them or BIPAP's
kellyC_: my test came back Inconclusive on the sleep study? they said i had this then they said i had that LOL//2
kellyC_: they had no Idea lol
Murf: they weere asleep
kellyC_: lol yeah for sure Murf
Murf: they will be talking about the trial at the conference this year
mjo5712: michael any complications from being knocked out for operation
Murf: Dr. Fischbeck will have an hr & half
kellyC_: Si Murf... when is the study done @ the NIH soon I assume?
Murf: mjo5712: you need to talk to your anistis .... the guy that knocks you out
mjo5712: I hear some reading may come up falsely
Murf: Another 1 1/2 yrs
MICH: I just turned 61 about a week ago... body feeling it... blood not getting to large intestines so now using Metamucal and Aspirin for the 1st time in my life.
kellyC_: Ic.. Ic.... ok ty Murf!
MikeG: mjo, be sure to tell the anestisiologist that you have KD.
Murf: I used Propofal 150mg
TerryW: Mjo, print out the info on the KDA site on surgery and KD and giv it to them
Murf: worked out better than what he was going to give me
Murf: They always like that
Michael17860: The only problem I had is when I had the sinus surgery done. I had blood cloths and they got stuck in my throat, and they had to suck them out. But as far as being knock out, and them bring me back it was no problem. I did tell them that I had MD and they knew what to do.
mjo5712: yes i will look on the kda web sight. thanks all
Murf: It's on the home page (about middle)
TerryW: the yellow triangle
kellyC_: Hey storminnorman,, you still working?
norminstormin: yes i,m still working
kellyC_: what do u do?
norminstormin: i,m just a cashier now
kellyC_: oh ok thats great! to hear
Murf: As long as you can guys!!! (me too) we're lucky
TerryW: Normin, how can you stand up for that long
norminstormin: i used to to be a reciever
kellyC_: yeah goop point terry
norminstormin: they got a stool for me to sit between custumers
kellyC_: Awsome! Norman
Murf: I asked the same question last chat //2
norminstormin: my co-workers have been so supportive
Murf: great minds think alike
MikeG: Well guys, I've got to go take care of disposing a safe for Pauline Mengel. When John passed away in '04 he didn't have the combination written down anywhere and Pauline had to have it ripped open. Now she has a 200# boat anchor in her garage and she has gotten quotes from $100 - $200 to haul it off. I'm going to attempt to pick it up with my chair lift (if it will do it) and haul it off to the dump.
norminstormin: they,re always on me to help
kellyC_: we have Dementia Murf lol is that KD related//2
kellyC_: just jokes
TerryW: Wow mike
Murf: Take care mike
Dart! has left the room.
Murf: LOL ya...
TerryW: be careful Mike
MikeG: ok, until next time - stay verticle
MikeG has left the room.
kellyC_: so are u takin any meds Norm and if u are what kind?
Murf: My lift would handle it if I could get a good grip on it
norminstormin: not taking anything
kellyC_: oh ok
TerryW: Just so you all know, TYPOS are always allowed in the KD chat room. We realize that our fingers always don't do what we tell them
Murf: I often wish there was a camera on me ... like yesterday I got a new printer. 30 lbs on my desk 3 ft off the ground
kellyC_: well folfs got to go here the ol- lady is having a garage sail.....
Dart!1813 has left the room.
kellyC_: folks i mean
Murf: Take care Kelly
kellyC_: you all take care see ya next time bye all
Dart! entered the room.
kellyC_ has left the room.
MICH: Speaking of fingers... does anyone have a few that don't want to work?
norminstormin: mine are slow but still work
TerryW: right now they are doing ok because it is warm
Murf: especially when they get cold or I use them too much
TerryW: I can no longer tie a hook on a fishing line
Michael17860: Murf how do you get the Gov to help put in a pool?
Murf: they cramp and stop working when I type too much (good for about 3 hrs)
norminstormin: when i,m out too long i acan,t even put a hook on either
Murf: Me neither terry //10
TerryW: Guess I need to hire a Hooker for that
TerryW: I mean someone to tie the hooks on
Murf: I need it for medical theraphy (exercise)
Michael17860: what % are you talking about?
mjo5712: i can still tie a hook but sure does take a long time. fish quit biting
Murf: has to be over 7% of your income
TerryW: we can no longer tie a fishing hook on the line
Dart!: That was pretty good, Terry, about the hook help!
Murf: then not sure what it works out to but you claim on medical expenses
Murf: I have a prescription and I'm waiting on a letter for the dr.
Murf: Your accountant can help you
Murf: I don't know how that will work in Canada ... sorry guys
Murf: you'll have to move to Texas where the weather is warmer
Michael17860: I here alot about water theraphy, no one near where I live to get it. Getting a pool would help.
mjo5712: warm wheather means more grass mowing
Murf: This is bad but thats what the Mexicans do
Murf: they cut grass for 25 bucks
TerryW: Well everyone we are getting close to the end of the scheduled chat (5mins) you can stay on chat if you wish but I stop the logging of the chat at 30 past the hour
Murf: you can't do it yourself for that
Michael17860: But do they cut wood???????
mjo5712: i dont pay nobody for something i can still do
Murf: I use natural gas //2
MICH: Grass cutting is my wifes job now
Murf: mjo5712: good man (I can't walk any more)
Murf: Michael17860: LOL
mjo5712: i use a riding mower and wife does the trim
Murf: That would work
Michael17860: Well guy's see you all later, got to cut grass.
Murf: TJ stil;l cuts his too
mjo5712: for now it does
Murf: LOL later Michael
norminstormin: well i gotta run seeya all later take care
Michael17860 has left the room.
TerryW: See you all later
Murf: Cya normanEND CHAT