Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  12-02-2006

Topic: Open Forum

Host: Terry Waite


Chat Participants:

TerryW
Murf
Dart!
billeric
butch
smblasko
DarwynP
Butch
Gary_KS
goody
craig_h
doughboy
duane
Dean

BEGIN CHAT

 

TerryW: Hello

Dart!: We are getting a god start for the day, and Good morning!

TerryW: I was up late so I may be a little slow this morning

TerryW: We had a Bunko Party

TerryW: 12 People

DarwynP: I'll bite, what is Bunko?

TerryW: I went to bed at 11:30 and my wife stayed up with the crowd until 1am playing darts

TerryW: Bunko is a dice game

DarwynP: OK

TerryW: sort of like Yahtzee

TerryW: first you have to roll 1's, then 2's

TerryW: so on

TerryW: teams of 2

DarwynP: I see, sounds interesting

TerryW: Its a lot of up and down changing chairs

TerryW: hard on legs

Dart!: Two greats - you have friends and you all want to party.

DarwynP: It's a lovely 4 deg. Far. today here in Winnipeg

TerryW: Since we moved out of the City up into the mountains to a small town we have many more friends with time

Dart!: Come midnight and I start to turn into a pumpkin.

TerryW: In the city everyone was always to busy

TerryW: I am usually in bed by 8PM

Dart!: Is yours a rural community, Terry?

TerryW: yes

DarwynP: I agree City life is really busy.  I still haven't got used to it.

Dart!: How far are you from fire protection?

TerryW: Much slwer pace up here. people actually have time to get together for dinner, BBQ's

TerryW: slower

TerryW: Fire dept can be her in 4 minutes

TerryW: here

TerryW: paramedics also

Butch entered the room.

TerryW: hey there

Dart!: Sounnds good - lots of trees? And you can use you quad without getting in trouble with the law.

Butch: Hi guys--How are you all doing?

DarwynP: I went from a village of 800 people to a city of 700,000. It's pretty hard to adjust!

DarwynP: Hi Butch

TerryW: We can shoot on our property, ride ATV's,  Bon fires

Butch: Glad to see so many on the chat this early.

Murf entered the room.

Murf: Morning All

TerryW: Last week I was almost attacked by a Bobcat

Butch: Hi Murf.

DarwynP: Good morning

DarwynP: You scred him Terry?

craig_h entered the room.

DarwynP: scared

Murf: Wow! Canadians everywhere

Dart!: 4 degrees in Winterpeg? That is downright balmy! 18 degrees of frost here in B.C.

craig_h: howdy

DarwynP: Yes -14 celcius

Murf: 50 ih Houston

TerryW: I was out on our property fixing some christmas lights and sitting on the ground in our bush garden he was sneaking up behind me and I heard him, I turned my head and he was less than 8 feet from me

Murf: How big?

smblasko entered the room.

TerryW: I stared him in the eyes and then I threw my arms up in the air and let out a Roar

DarwynP: Hoping for an easy meal! Ha

Dart!: Too close, Terry, and H'lo All!

TerryW: He was a Big Bobcat

Murf: Good one Terry that was obviously the right thig to do

Murf: 2 1/2 or 3 frt?

TerryW: With me sitting on the ground all quiet fixing the lighted deer I think I looked like prey to him

TerryW: he was about 3 ft tall

Murf: yup Big enough

Dart!: You were down low, so would have been easy munching.

Butch: When they are only eight away--they are ALL BIG.

TerryW: the night before he attacked one of our cats in the same spot but the cat got away

TerryW: I think he was coming back to the same spot to get her

TerryW: Freaked me out

TerryW: Hello SMblasko

Murf: He was hungry you should have given him a leg up

Dart!: We have had cougars, fat ones, because they were cleaning up on the cat populaton.

TerryW: Hi Murray

TerryW: Hi Craig

Murf: Hey Terry

Murf: //2

craig_h: hi Terry (cat man)

TerryW: lol

TerryW: so how is everyone feeeling

TerryW: I had a very bad couple of past weeks

Murf: like the cat

TerryW: I fell about 10 times

craig_h: weak day here, and I gotta drive to Bethesda tomorrow

Dart!: Like a neighbor - he says 110%, but he lies.

TerryW: luckily its all dirt at my place and gravel

billeric entered the room.

TerryW: hi Bill

DarwynP: Your second visit Dart?

billeric: Good Morning Terry

Murf: I fell in the garage last Sunday and now I have a purple toe and a knee I can barly put any weight on

Dart!: No, I've been hanging around for quite awhile, thanks.

Butch: Craig--This is Ron--I will be at NIH on Tues Dec 5th.--See you there.

DarwynP: To Bethesda that is.

craig_h: hi Ron, my appointment is Monday only

Murf: Cool, I go again on the 18th

TerryW: Yep murray I fell on my knee also and did something to it,  now when I get down on my knee it feels like a knife going in

Duane entered the room.

TerryW: I am hoping it goes away

Gary_KS entered the room.

TerryW: Hi duane

Murf: I heard that Terry

Duane: hello all

Dart!: Gravity is great when you are pouring your coffeee, not so when falling.

Gary_KS: Good morning all. Gary Uchiyama from Kansas City.

DarwynP: I have the same knife Terry

TerryW: is that duane & lori?

TerryW: Hi Gary

Duane: nope just duane

Murf: Morning Bill Duane Gary and everyone else I missed

TerryW: Duane B?

craig_h: Butch, when do you arrive?

billeric: Morning Murry

Butch: Duane --How is Lori doing?

Murf: Darwyn - will you kindly pull you knife out of my knee then too please?  //1

Butch: Craig--I will get there Monday evening.

Duane: fine.

TerryW: Anyone near the big freeze back east

TerryW: ice storm

Duane: she is sleeping.  it's 32 degrees here but feels lide 20

craig_h: I might only stay one night and drive home after the appt. If I stay the second night, would be great to meet ya

billeric: Good news from Phoenix this week.  Local University has isolated the gene responsible for ALS.  Big breakthrough.

Murf: We got lucky in Houston (it didn't freeze)

Butch: Its cold here in Penna. but no snow or ice.

craig_h: it's 46 here is SW Virginia

DarwynP: I've lost strength again the past week or sr and another 5 lbs. Seems to be more muscle than fat though!

TerryW: 32 here in California also

Murf: Bill - could you send us the article?

Butch: Craig--I will be staying at the double tree. Where will you be staying?

Murf: That is good news!

craig_h: same place

goody entered the room.

TerryW: They are getting closer all the time with these diseases

billeric: I will do it Murf.

TerryW: hello Goody

Murf: Is that you Bud?

Dean entered the room.

TerryW: Hello Dean

Murf: Thanks Bill

goody: Hi troops---I missed the last chat

TerryW: Lot's of chatters ere today

Dean: Hi terry

Murf: Goody - are you Bud Goodnight?

Duane: had dr appt last week in Dallas, still progressing.  I've been having problems with speech after eating.  they said jaw muscles and soft palette.  i try to smile and nothing.

craig_h: butch, if you want, email me at This email address is being protected from spambots. You need JavaScript enabled to view it.

TerryW: Does anyone watch the TV show "House"

goody: on ther being cold --My mouth and hands are my biggest problem area--Neither works well

doughboy entered the room.

goody: yes

Murf: Morning TJ

TerryW: That show shows just how much of Gunea Pigs we are in hospitals

Butch: OK! Craig.

TerryW: LOL

doughboy: good morning everyone

billeric: Me too goody

doughboy: morning murf

TerryW: I like the show

Butch: Hi TJ.

Murf: Well I hoped I didn't kill your internet connection this morning will all the quotes I sent you

TerryW: Hi TJ

doughboy: Hi Butch

doughboy: Hey Terry how's it hanging

goody: murf-- I have some info coming on next years meeting but won't have final for a week or two

TerryW: Sorry to hear that Duane

Murf: Bud - sorry about all the e-mails

goody: no problem

TerryW: I have noticed that chewing gum makes my Jaw real sore & weak afterwards

DarwynP: How many of you have problem with blood pressure?

Dean: How does everyone felling. Any positive changes in anyone strength.

Murf: I thought I sent them a week ago but I was having problems

TerryW: I do Darwyn

doughboy: I do Darwyn

DarwynP: Not for me Daen

Duane: is anyone of u experiencing same?  any suggestions?

billeric: Have we got a crew here today-or what?

craig_h: felt pretty strong this week, until yesterday

TerryW: 160 over 114

TerryW: But now I am on some new meds

DarwynP: Just wondering if it is comon with us

Murf: I've got a new wireless network  because the old one flew south for the winter

TerryW: brings it down to 130 over 92

doughboy: I've been having alot of anxieity the last couple of days!

DarwynP: 180 over 110

TerryW: wow

DarwynP: now with diovan hct it is 118/78

TerryW: Anxiety is common from time to time

goody: anyone can contact me on This email address is being protected from spambots. You need JavaScript enabled to view it.

billeric: with meds I keep mine at 140 over 80.

doughboy: I take Cardura at night and Baycor during the day

Murf: I'm on Atenolol 50mg and Im @ 130/70

Duane: w meds mine is 132/80

goody: I have to go now to pick up deposits before the bank closes

Butch: So long Bud.

TerryW: I think we all have poor circulation problems to the hand and feet right?

Dean: Is anyone working out at the gym to biuld up your strnght?

DarwynP: Yes Terry

doughboy: I'm with you on that one Terry, I know I do!

Duane: yep.  the cold is especially hard on me.

goody: I'll try to remember to be here the next chat

craig_h: terry, 2 weeks ago, I could barely feel my right hand, wasn't sure if I slept on it wrong or if it's carpal tunnel

TerryW: Dean, we have found that that does not really help in most cases but light exercise & stretching helps keep what we have toned

goody: later and God Bless

Murf: take care Bud

DarwynP: Knees down are the worst for cold and circulation

goody has left the room.

Murf: 131/78 just took it

Gary_KS has left the room.

Murf: Must have been the three cups of coffee

TerryW: has anyone found anything to help with the circulation problems

Dean: thanks Terry

doughboy: Both of my arms and legs are feeling numb a lot lately, I think sometimes on the legs it's the ziactic nerve

Duane: no.  just figure its part of disease

Gary_KS entered the room.

TerryW: Dean no heavy weights, you do not want to tear muscle

Murf: A warm arm chair??

Gary_KS: I am back.

TerryW: it will not rebuild

Duane: hello back

Murf: //2

doughboy: I found my vibrating and warming chair helps me some

Duane: i avoid weights.  but continue with aqua t

TerryW: I wear glows with a inner fleece lining

billeric: I would like to try some balance excercises.  I am losing balance quite quickly.

TerryW: gloves

Dean: Terry have you ever worked out with weight?

doughboy: Won't help

TerryW: I also Bill,  I don't know what to do to help it Bill

Murf: Bill - try streching

Butch: The other day I was in my back yard on my scooter. The ground was soft from a rain...You guessed it. Couldn't move the scooter. Lucky for me two guys came by and gave me a push. Lucky me.

TerryW: Dean a while back,  we have a home gym

TerryW: weight set

DarwynP: I use a electric pad to warm my legs and feet. Feels beter anyway.

Murf: Ron - warn make a great winch

doughboy: Tried to work onb putting up a few x-mas lights yesterday, hurt my chest terribly

Dean: Terry are you in the nih program?

Duane: b careful

TerryW: I remember that TJ

TerryW: no I am not Dean

Duane: terry , i thought you were

Dean: Terry neither am I.

Murf: me nether

billeric: Me neither.

TerryW: It has gotten cold here and my hands are back to the point that when I go to the grocery store I can hardly sign my name to pay for the groceries

TerryW: summer was fine

DarwynP: Does anyone know if Kelly went to NIH?

Murf: Shop indoors Terry

Duane: u 2?  I avoid checks.  only use debit card.

Butch: Murf--are you no longer in the NIH program?

TerryW: it is indoors, they keep the isles so cold

Murf: What's a check?

doughboy: smblasco, have I met you yet?  If not my name is TJ or doughboy on the chat and I'm from Waller, Texas!  I live about 30 mins. from Murf.

TerryW: I mean credit card, you still need to sign

TerryW: and I can hardly do that

TerryW: hands have to be worm

TerryW: warm

doughboy: Yes Terry my handwriting sucks also!

DarwynP: NIH wasn't sure if they would get him there. He was to go around now.

craig_h: most places here with a debit card you just punch in a pin code

TerryW: see, my hands are cold now and I make more typos

TerryW: I have no debit cards

Murf: Turn up the heat

Duane: :)

doughboy: Oh come on now Terry, you just can't spell, your a yankee!//4

TerryW: I am sitting on my hands now and typing with my tounge

TerryW: :)

TerryW: keeping them warm

craig_h: might be something to look into Terry, I have to sign credit cards and pin code debit card

smblasko: TJ - I am Mike G's nephew - Sean - live in Austin

Murf: TJ - Took delivery of my confederate 6 lb cannon yesterday

Duane: pin code much better.

Butch: He may be a yankee---but you are a yanker---LOL.

TerryW: 6lb cannon?  is that for nasty neighbors?

TerryW: LOL

doughboy: Okay I know Mike, welcome to the chat!  I used to go to Austin quite a bit when I was with DPS

Murf: Ron - It's spelt W-a-n-k-e-r

Butch: LOL

doughboy: C'mon Butch, you taught me well!

Murf: Every thing is bigger here Terry

TerryW: Has anyone got a cold this season yet?

TerryW: I got my shot

billeric: Anything exciting happening in the K.D. research are lately?

TerryW: I am trying to stay clear of sick people

Duane: nope.  got my flu mist.  sposed to be better than shot

billeric: are equals area

Murf: I missed both appointments for my shot so now i guess I gotta get one at the horse pistol

DarwynP: No cold. Haven't heard anything new on KD.

Butch: Isn't it great that they are having a break thru for ALS. Maybe were next!!!!

TerryW: I have posted some new stuff on the KDA web site. check the Whats New page

Murf: Duane - what is this mist?

TerryW: look for the link at the top right of the main KDA page

billeric: will do Terry.

TerryW: interesting reports

Duane: liquid , dose in both nostrils.

Dart!: To avoid colds and 'flu, I highly recommend 3 grams of Vitamin C daily! I haven't had those sicknesses for a dog's age!

Duane: dr reco'd

Murf: Right ok is it over the counter?

Butch: A little burbopn--Ron recommended.

Duane: nope.  flu vacinne

Murf: o

TerryW: Does anyone here have food allergies or IBC

Butch: Burbon!!

Duane: oh, yes you mjust gargle with whiskey

DarwynP: Not me.

Murf: Ron - tried that 2 years ago - didn't like the side affects

TerryW: IBC = Irratable bowel syndrome

Murf: Made my leggs wobbly

Butch: but, if you fall--you are very relaxed.

TerryW: It seems that when we go out to eat a half hour after I find myself running to the bathroom,  only happens when I eat out

Murf: My bowels also irritate people

doughboy: that's because of your canadian bacon, Murf

DarwynP: Actually Terry the only meds I'm on are for the High blood and the study drug.

Murf: Must be

Murf: Not long now TJ

TerryW: I think it's sulfites in food, especially salads . Used to preserve the lettuce longer

Duane: just have uncontrollable desire to pass gas while shopping.  :)

TerryW: LOL, cleanup on Isle 6

Murf: LOL

billeric: I have somewhat of the same problem Terry.  I am trying a couple over the counter meds such as Gas-X and Pepto Bismol about an hour before going out.

Butch: Good one Terry.

Murf: Good one Terry

Dean: Darwyn is that the study drug from NIH? and how are you feeling, how long have you been on it ?

craig_h: I can't say "good one, Terry" .............. my mom reads the chat archives   (Hi Mom)

TerryW: I hate it when you are driving after eating and you get those severe crams that come and go and get more intense. Your foot on the acelerator seems to go down harder also

TerryW: cramps

doughboy: Hell I pass gas all the time!  I think the main problem here is being over weight and our diets.  Causes high blood pressur, gas, heartburn, etc.

Duane: does make shopping easier on  discount days

DarwynP: Yes Dean, Started Oct.14th, as I said farther up I have felt weaker again the last couple weeks.

TerryW: If an officer stops me I will tell him if he does not let me go I am gonna fill my shorts LOL

doughboy: I shop using the net

craig_h: when first diagnosed with Kennedy's I lost nearly 100 pounds, felt so much better. It crept back on me, so the day after Christmas I start the ol' diet back up

DarwynP: Might be due to the cooler temps also.

doughboy: what type of diet Craig!

Duane: I have lost 20 lbs down to 160

craig_h: nutrisystem

billeric: Combine our problem with low toilet stools and now you have a problem!

doughboy: works huh?

Butch: Great Duane!

craig_h: I actually lost the weight to fast, 100 pounds in about 8-9 months

TerryW: Extra weight on the body must be very hard on someone with HD, because I know I can barley walk carrying a 10 lb sack of food

TerryW: KD

TerryW: typos

TerryW: ahh

DarwynP: Craig I've lost 35 since diagnosed and that not even trying to loose. I think most of it is muscle!

Duane: i actually feel better with less weight.

craig_h: Terry, I have to get rid of my High-Def (HD) ???  noooooo

doughboy: Hell I can't carry a 1 lb. sack

TerryW: why craig?

craig_h: terry, your typo, lol

TerryW: LOL I see

Dean has left the room.

doughboy: Duane my neurologist told me the other date the weight I was losing was muscle and not fat!  Not good!

craig_h: once you watch football on HD, you become a snob to football not on HD

Duane: hell i can't carry a tune! :)

TerryW: :D

TerryW: I am 6 ft and 153 lbs

doughboy: I'm with you Duane

Duane: be careful.

Murf: TJ - it's the musle holding your gut in

doughboy: A big gut

doughboy: Makes me depressed

Murf: I got one too

craig_h: Darwyn, was you pretty muscular before KD set in ?

DarwynP: I still have a big gut also. 165 now and 5' 8

Murf: 6 foot?

TerryW: I never had large muscles but I had lots of endurance

DarwynP: Not muscular but very active

TerryW: used to load roofs for my Dads company

TerryW: when I was young

Murf: you mean 5'6" Terry

doughboy: Hell I was Mr. Atlas now they call me Fat Albert

TerryW: 6 ft

DarwynP: Hunting, fishing, snowmobiling, telephone installer.

Dart!: Terry - load roofs?

craig_h: well, I gotta do laundry before heading to Bethesda ...............  later y'all ...........

Murf: I'm 5' 6" and I did think you where that much toller than me

DarwynP: nothing now

doughboy: Mountain man, iditirod, conquering mt. Everest, you know the usual

Murf: B3e good to see you again next year

Duane: had to buy a new cordless drill. couldn't lift the old one.

Murf: Take care Craig

doughboy: gotta go pea b back n a min.

TerryW: I used to like to bowl, but now I can not even lift a kids bowling ball, and when I could it felt like it was going to tear my arm off when I swung it

Butch: So long Craig--stay healthy.

DarwynP: bye

craig_h has left the room.

TerryW: bye craig

TerryW: to late

Duane: know what you mean.  had to quit bowling.  my knees couldn't take the fall after ball delivery

Murf: I used to hunt and fish too

Dart!: If we cannot do anything about muscle-building, then we just have to work at improving our personalities - and typing skills.

Duane: amen

Murf: Well put

TerryW: I know what you mean duane

doughboy: I agree Dart

doughboy: Is everyone ready for Xmas?

DarwynP: I can barely walk now

TerryW: no tree up yet

TerryW: don't know if we will this year

Butch: TJ--Not me--still have alot of shoping to do.

DarwynP: not even close to being ready yet

doughboy: come on TW get it up!

Duane: tree, outside lights up.

TerryW: Last time we put it up it stayed up for 20 months

TerryW: outside lights are up

TerryW: we just took it down in July

TerryW: LOL

Butch: How is your ATV Terry?

TerryW: It is working great for me to get around

TerryW: The Yamaha Rhino

Butch: Can it outrun a bobcat? LOL

TerryW: Like a Golf cart on Steroids

doughboy: Well goota run, see you on the next chat, Nice meeting you Sean, email me sometime!  Bye Murf thanks for calling and reminding me about the chat!  Bye All!

TerryW: it can go about 50mph

TerryW: bye

Butch: So long TJ--Stay healthy.

Murf: Take Care TJ

billeric: Bye Doughboy

doughboy has left the room.

Duane: do you compete at the mud bog rallies?

TerryW: not yet

DarwynP: well I have to go. Have a good one all !!

Butch: Terry--50 mph--WOW. must seem like you are flying.

TerryW: bye Darwyn

DarwynP has left the room.

TerryW: last weekend we too the Rhino and ATV up on the mountain trails, we went 20 miles back onthem. It was fun

TerryW: took

billeric: Got to go guys.  Nice chatting.  Thanks Terry.

TerryW: good chat all

Duane: cool.

billeric has left the room.

Butch: Murf--thanks for the call yesterday. Must go for now. Stay healthy till next we chat.

TerryW: sean, you are not saying much are you still with us

Murf: NP Talk nto you later

Butch has left the room.

TerryW: so is everyone all chatted out?

Duane: i'm still here.

Dart!: That quad is a great way to get into back country. Are you allowed to use it on pulic roads?

Murf: I was saving (just in case)

TerryW: Susanne is taking a week off next week so we can finally spend some time together

TerryW: she has been working super long hours

Murf: Great you guys need some time

Dart!: public

TerryW: I have saved it also Murf, thanks

TerryW: have shopping to do and things around house, ride the horses and stuff

Murf: I 'll have to go here so everyone stay safe (and on your feet)

Duane: bye everyone.  till next chat,

Murf has left the room.

TerryW: catch everyone later. I will save the chat now

END CHAT