Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  08-04-2007

Topic: Open Forum

Host: Terry Waite


BEGIN CHAT

 

Murf: Morning

TerryW: Hey there

norminstormin entered the room.

TerryW: Morning

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

TerryW: yep

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?

TerryW: lucky

norminstormin: 44

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

TerryW: mike

norminstormin: hi dart

MikeG: Morning

norminstormin: hi mike

Dart!1813 entered the room.

MikeG: we finally got some sun in sunny Florida

Murf: another dart ... morning

TerryW: hmmmm?

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.

TerryW: terrible

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'

TerryW: hi

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

Murf: //2

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

TerryW: ?

mjo5712: ive been doing exercises 4 to 5 times a week and ;my back is always sore

Murf: get Susanne to buy you one

TerryW: LOL

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: cane

TerryW: not Cann LOL

Murf: 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

norminstormin: ontario

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

Murf: heavy

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: 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

Murf: stool

norminstormin: they got a stool for me to sit between custumers

TerryW: good

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

TerryW: :)

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?

Murf: yup

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: yep

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?

TerryW: Fishing

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!

TerryW: TY

Murf: then not sure what it works out to but you claim on medical expenses

Michael17860: Thanks

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

Michael17860: OUCH

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 norman

END CHAT