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Kennedy's Disease Chat Transcript 11-04-2006
Topic: Coping with Cold Weather
Host: Terry Waite
MikeG entered the room.
Dart!: Good morning Terry. Sorry, did I awaken you when I closed the door on the way in?
TerryW: Hi Mike
MikeG: Morning Terry
TerryW: Hi DART
TerryW: I woke up early Mike
MikeG: What a beautiful day in Florida today!
TerryW: The horses woke me up.
Dart!: How are y'all? Hopefully we are going to have a good day!
MikeG: or just hungry
MikeG: Hi dart
Dart!: Hi to you too, Mike.
TerryW: So whats new
MikeG: low 80s today here - clear blue sky
Barb entered the room.
TerryW: it will be about 70 here today
MikeG: morning Barb
Barb: good morning again. Can't stay long this time though.
Barb: I hope all is going well with all of you
Dart!: That 49th doesn't make that much difference - Canadians talk weather too.
Dart!: The border, Terry.
Barb has left the room.
TerryW: she wasn't kidding
Dart!: The one that they are talking about erecting all those surveilance towers on.
MikeG: Terry, it doesn't get very cold where you are does it?
TerryW: It gets cold for what I am used to. It can get down in the high teens at night
Dart!: "High teens" - That must be nice and balmy!
TerryW: My hands anf feet are getting much worse for the cold each year that passes
MikeG: wow! I guess I was thinking Sacramento was more like San Francisco
Dart!: For sure, the cold will do that to you
TerryW: not near Sacramento, they are 2-3 hrs north
MikeG: my fingers stop working at about 50
TerryW: mine also mike
MikeG: oh - I thought you were arounf the Sacramento area
TerryW: Mid state
MikeG: do you have any problems with your feet getting cold?
TerryW: in sierras
TerryW: I am just below the Pine level
MikeG: that's too cold for me
MikeG: we had one day last year below freezing - about 4 hours worth
TerryW: I have to cut & prepare firewood each year
TerryW: I have been doing that for the past 6 months
MikeG: that will keep you warm 3 times
TerryW: little by little
TerryW: I can hardly lift a split piece of oak
MikeG: I guess so - how about the maul
TerryW: This year I rented a log splitter and hired some kids to bring me the logs and I set them and split them and then I had them stack the wood
TerryW: I sat in a chair by the splitter
MikeG: How about you Dart? How cold does it get up there?
MikeG: that's the way to do it!
Murf entered the room.
MikeG: morning Murf
TerryW: I split the wood in smaller parts than halves so I could handle them
MikeG: how are things in the big H today?
TerryW: into 1/3rds
TerryW: Hi murf
Murf: The world is still a little fuzzy so don't know how long I'll last
TerryW: what happened
MikeG: we used to have a Buck stove and I'd cut at least 3 cords of wood a year!
MikeG: no fun
james entered the room.
TerryW: Hi James
james: Hello Terry.
james: Thanks for the emails
TerryW: Oh, I understand murf, Susanne had that done
MikeG: morning James
Murf: Hi James
james: greetings all...
MikeG: yes, Paula had that done too
MikeG: when did you have it done, Murf
TerryW: they say it feel like sand in the eyes after for a day or 2
Murf: Terry - how long did the blurry world last?
Dart!: I have to translate temperature, Mike, as we are on 'Celsius' Right now we are sitting at about 2 degrees above freezing.
TerryW: a couple of days
Murf: Last Saturday
MICH entered the room.
TerryW: Hi Mich
james: oops... playing with emotions...
MikeG: Morning Mich
TerryW: It's OK to smile
Murf: Morning Mitch
MICH: Good Morning all from cold UTAH
MikeG: that's cold for November, isn't it?
TerryW: Got my Flu shot 3 days ago
MikeG: me 2
DarwynP entered the room.
TerryW: Hi Dwane
MikeG: got to have a flu shot every year!
MikeG: Morning Dwane
TerryW: Sorry its Darwyn
Murf: Morning Darwyn how cold is it up there?
DarwynP: Hi all! It's been a while!
TerryW: I read it wrong
DarwynP: Pronounced DarWIN
TerryW: I carry those instant heat packs that fit in my pockets when I have stuff to do outside
TerryW: air activated
MikeG: that's a great idea.
TerryW: they work good
TerryW: also can put them in boots
MikeG: a lot easier than the old hand warmers that you had to put lighter fluid into
DarwynP: -4 celcius about 8 F
TerryW: they also make one for the shest area
Butch entered the room.
MikeG: now THAT's COLD
TerryW: for hunters
DarwynP: I'm in Winnipeg now!
Murf: No thanks - my parents are in Winterpeg
Butch: Good morning guys. Glad to see so many on the chat this early.
MikeG: I'm glad I'm in sunny and WARM Florida! 68 now
Murf: Last time I was there it was -30
kellyC_ entered the room.
Dart!: Very good - 'Winterpeg'!!
DarwynP: I made the move in August. Couldn't do it anymore.
MikeG: Morning Butch
MikeG: Morning Kelly
DarwynP: -30 will be here soon enough!!!
kellyC_: good morning
MikeG: How do you keep your hands warm in that temp?
Butch: Just came in from raking leaves in the yard. Can't use the fingers so good right now.
Murf: 65 now in Houston - thats why I moved here
MikeG: I guess not!
Gary_KS entered the room.
goodlead entered the room.
MikeG: Morning Gary
DarwynP: It's my feet that give me the most trouble
Murf: Morning Gary
Gary_KS: Good morning. Gary Uchiyama joined from Kansas City.
MikeG: Morning goodlead
goodlead: Hello. I was diagnosed a few months ago and this is my first time in chat.
Murf: Goodlead - r u new
MikeG: welcome Gary
DarwynP: Although grip gets bad with the cold
Dart!: For winter-time, 'inside' was a great invention!
MikeG: You got that right!!!
goodlead: I would like to ask a question (off topic) that I posted on a discussion forum that got virtually no response.
MikeG: sure - shoot!
TerryW: what is that goodlead
Murf: We're talking about getting by in the cold today but you can talk about any thing you like
goodlead: It has to do with loss of libido. I understand this is a common problem.
DarwynP: that's the benefit of this chat, ask all you want!!
goodlead: The Swedish study says it affects about half of all KS people.
MikeG: yes, that is a fact
Murf: What libido
goodlead: However, no one's bio has mentioned it, and I see no chat discussion about it.
DarwynP: I feel mine is still good!!
james: i am wondering the same...
TerryW: I still have Libido but no energy to do anything with it
goodlead: It makes me wonder if the 50 percent figure is wrong and I am the only one with the problem.
james: i'm also new to the world of KD
Butch: Right goodlead. We don't remember libido. LOL
kellyC_: Not all KD men have problems with the libido good lead,, at least from other men i have talked to from diffreant age groups
goodlead: The conventional solution, testosterone, is not a solution because it causes KD to progress.
TerryW: Medications if you are on any can also effect it
doughboy entered the room.
Murf: We always talk about that at the conferences
goodlead: I wonder if anyone has found a solution to this problem.
Murf: Morning TJ
DarwynP: I think it is an issue but, to put the % on it? i'm not sure.
doughboy: Good Morning everyone
MikeG: try taking about 900mg of Arginine
goodlead: What is Arginine?
Butch: Hi TJ. How are you?
Murf: Was just going to call
james has left the room.
james entered the room.
doughboy has left the room.
doughboy entered the room.
DarwynP: Are we getting punted again?
TerryW: Are you getting knocked out of chat
doughboy: Fine Butch how r u
Murf: You two hitting the wrong buttons //2
Butch: Hey guys maj=ke up your minds. To stay or not.
james: very funny
james: i'm here :-)
doughboy: hey what's the topic today
Murf: Good to see you
TerryW: those of you that are getting knocked out of chat are you trying to do anything else on your PC at the time?
james: yes... :-(
MikeG: it's a strong amino acid that helps with libido.
james: looking up Arginine on the internet
goodlead: Thanks, MikeG.
Chuck entered the room.
TerryW: trying to go to another web page while in chat will knock you out
Murf: Morning Chuck
DarwynP: Hey Kelly my mother lives in Kinistino, and my father is in a home in P.A. She just went a couple weeks ago to Saskatoon to test to see if she's a carrier
MikeG: TJ, the Topic today is “Coping with cold weather”
Butch: Hey Anna Lea. How are you? and how is Chas?
james has left the room.
james entered the room.
TerryW: you need to start up a 2nd browser window and use that window to search the web to prevent that from happening
Murf: Welcome back!
doughboy: stay inside
DarwynP: We, were told there is a 30% chance it started at my conception!
MikeG: when we get up there in age (approaching 60) it's natural to hve a slower libido. Just try increasing you vitamins.
Murf: Next summer their coming out with quad core CPU's and I'll be buying a new computer. No probs after that
Murf: Mt to TJ
Chuck: Hi to all. It has been sometime since we have been in. Charlie was off his feet for a month. He had a bad fall while on vacation and then came down with a bad case of shingles. He has now improved and back on his feet but has a lot of pain around the eye from the shingles. Things are beginning to look up.
Butch: Hey Mike. Tried that but, my wife hid the vitamins. LOL
goodlead: I think it's more complicated than growing older, Mike. It has to do with the binding of testosterone with the androgen receptors (whatever that means -- some biological mechanism).
Murf: Chuck - Tell Charlie to get well soon for us
kellyC_: When I was working in minas 50 below zero.. i truly suffered with spasm's to a point where i could not move or talk esp when i started to SHIVER.. then my muscles would really spasms out... i used to wear so many clothes i could hardly move!.. lol... if I kept warm I was ok... but yes the cold really affects me bigtime. esp in saskatchewans north in the winter months its cold...... there
TerryW: Can you guys beleive what Rush Limbaugh said about Michael J Fox exaggerating his MS symptoms
TerryW: what a crock
doughboy: Heck, I don't even worry about it no more, itdoesn't work so forget it!
MICH: As far as cold weather goes... can't get my fingers in gloves so use mittens
TerryW: He has no idea what Michael goes through
Butch: Rusch should walk in his shoes for a day./
MikeG: who ever listens to Rush anyway!
TerryW: not me but I saw him on the news
MikeG: me 2
DarwynP: I here you Kelly.
TerryW: Walk a mile in my shoes - Joe south
MikeG: Mittens are a good idea. I have problems with gloves too.
Butch: Hey Terry---I like your new mode of transportation. COOL!!!
MikeG: Plus gloves get cold and transfer directly to the fingers.
doughboy: I don't know Terry, but everyone has their own opinion & I personally believe that they were using Fox to elect a democrat and I think that's wrong but to each theirr own. I mean handicapped people should not be used as pawns.
Murf: Agree but Michael should have said "embreonic" stem cells
TerryW: when I try to put gloves on when its cold my fingers on the hand that I try to put the glove on are so weak that they cannot stay straight and they bend
Murf: Me too TJ
TerryW: hard to get them on
doughboy: Thanks Murf
MikeG: once the fingers get cold, you can forget trying to use them.
DarwynP: I agree Mike
kellyC_: yes very true mike!
james: Loss of dexterity has always been a prob for me when my fingers get cold... but it is worst now.
Murf: I can't emagine you guys dealing with sub zero temps any more
kellyC_: when i get cold and start to shive my muscle's would contract so bad from the cold i was totally disabled
TerryW: Before I need to do something when its cold I have an electric throw blanket that I sit and wrap my arms and hands up in for 10 minutes and then go do the task
doughboy: That's a smart idea, Terry
TerryW: works good
Murf: I just stay inside when the temp goes below 50
MikeG: that's the best advice, Murf!
Murf: Is that cheating?
TerryW: Is anyone having a problem when driving. as for leg or arm strength
Murf: Only in traffic
DarwynP: Do any of you'se have problem with feet swelling or just turning purple and cold?
doughboy: My arms give out so do my legs
TerryW: I have to hold my right leg down sometimes with my hand to use the accelerator
Butch: Cheating or not--we need to stay within our limitations.
TerryW: for long drives
MikeG: seems you've got to be aware of how your fingers are responding and get them out of the cold asap
kellyC_: yes at times odd times i find it hard to steer my car.... and turning my head from left to rite....
DarwynP: Same here Terry
Murf: There is a device you can buy cheap that does not need vehicle mods to work the gas & brakes
doughboy: I have a problem finding a comfortable seat butt muscles are aching too! Tried driving a Lexus yesterday, $85,000.00 car but the seat still wasn't that comfortable.
Murf: Hand contols $450
TerryW: In my wifes car her brake pedal is so hard that sometime I can barely stop her car . you have to push so hard
Butch: Isn't cruse control great?
TerryW: My cruise control is broken
goodlead has left the room.
DarwynP: At NIH they had to warm my legs from knee down for 15 min. befrore they could zap me.
doughboy: I can't do without cruise control.
Murf: Ron - YUP!
MICH: When driving and when it's cold...getting the key in the ignition is a challenge...then bracing arm to get to radio buttons
TerryW: TJ, I bought one of those Tempurpedic seat coushions for the car, works great for long car & plane rides
Dean entered the room.
doughboy: Ininiti makes their cars where you don't need a key!
MikeG: I used to have a truck that had a 5-speed. Talk about hard to hold the clutch in with heave traffic!
doughboy: Yeah, where did you get it
TerryW: Sometimes when its cold I can't turn the key in the ignition
Murf: Terry - you can also get the brakes bosted so you don't need as much pressure but is expensive
doughboy: Infiniti car
TerryW: I have to use 2 hands
MikeG: That's very true Terry!
TerryW: I also have problems at gas stations getting the gas cap off
TerryW: I feel really embarrased
MikeG: Not having the use of your hands/fingers can become very dangerous at times.
kellyC_: lol I"am atarting to have that problem to at times terry to...
TerryW: I carry Channel lock pliers
DarwynP: The problems you describe Terry, I only havee with my right side.
doughboy: Hey Terry, where did you get the seat cushion, Uncle Murf said he would buy me one if he could find it!//4 //4
TerryW: I will e-mail you a link
MICH: amen...pliers are good for getting gas caps off
TerryW: TJ did you see my new transport vehicle
TerryW: THe Rhino
doughboy: Heck just go to a full service station
TerryW: Gets me around the property great now
DarwynP: What is a Rino?
TerryW: Yamaha Rhino 660
TerryW: Like a golf cart on steroids 4X4
kellyC_: is that like a QUAD....??
doughboy: No I have not but I'm looking forward to it! Bill and I each use golf carts
Butch: Terry--Is the Rhino hard to drive?
TerryW: take me up any hill
TerryW: thru mud
MikeG: we have a Mule on our ranch in Texas
DarwynP: Thumb throtle?
Murf: Dad was a QUAD & mom was a golf cart //2
TerryW: Go to Yamaha's site
MikeG: only way to go!
doughboy: Murf what do you have going today!
Butch: Big boys--Big toys. Only our toys are a necessity.
doughboy: Let's play poker
Murf: Can't see
doughboy: what's the matter
Murf: The world is too fuzzy
doughboy: Well hell, what better person to have playing cards then
doughboy: do you need me to take you to the Dr.??
Butch: Watch him Murf..He is slick.
doughboy: Aw, Butch, come on now!//3
Murf: No just need to rest my eye. I've been working on a computer all week and probably should have taken a few days off
doughboy: Well hech, yeah
MikeG: when did you have it done Murf?
Murf: Last Saturday
Butch: Did anyone hear if Dr. Chang got his lap top back or not?
TerryW: DarwynP, sorry I missed your ?. The Rhino has a gas and Brake Pedal
Murf: Ron It's a gone pecon
Murf: Like your camera
DarwynP: I missed your last chat and was at NIH when the conference was on. I was no.42. Assume the conference was good?
doughboy: Great experience,
Murf: We even raised $8000
Dart!: Is the Rhino allowed on highways and streets?
Butch: The hotel was going to turn the loss over to their insurance company but, haven't heard from them as of yet.
doughboy: I'll try to b at the next one's that follow
TerryW: N Dart
Murf: Next Conference in Lost Wages November 6-8 2007
MICH: What were you guys most favorite experience at the conference?
Dart!: So where do you use it?
MikeG: Murf, Paula said she could see fine the next day. She had problems with lights at night for a long time though.
TerryW: on our 5 acres
TerryW: trails in the mountains
doughboy: I just want to say a big "Thanks" to all involved inn setting up and managing the chat. It took a lot of work!
Murf: Mens talk is always good
Butch: Mich--interacting with the guys and their support groups,
DarwynP: I'll try make that one for sure! Have direct flights from here to Veagas.
Murf: It's always worth the trip
doughboy: Well guys I have to go and get Weaser & Charley from the airport, they have been in Canada all week, see ya'll later! Have a Great Weekend. TJ
Murf: To our conferences
doughboy has left the room.
Murf: Later TJ
TerryW: I will be at the next one
Dart!: Back to driving - it was suggested that I have a driving assessment so that there would be no arguement over insurance if I was involved in an accident.
Butch: So long TJ. Say hi to Weeser.
Murf: Terry - you going to drive?
MikeG: We may be able to WIN our trips to Vegas... or NOT!
Murf: Me too still to early and no cups !!!!!
Dean: Hi everyone. I am new to the chat room. Is anyone in the trail study at NIH with the drug Dutasteride. If so how do you feel. Any better.
Murf: I feel no difference but did not expect too either
DarwynP: The way I see driving and insurance. As long as the doctor's haven't restricted you from driving, there isn't an issue.
Dart!: So Darwyn, the way to avoid a problem is to not go to doctors!
MikeG: That's the way I see it too, Dart.
Murf: The musule tests will tell the tale
Murf: Dart //2
DarwynP: Hi Dean, I started the 2nd week of Oct.. I haven't seen anything noticeable yet!
Murf: These chats alway bring a smile to my ugly face
Butch: Dean--We aren't supposed to discuss the trial among ourselves. But if you don't ask you don't get answers.
Dean: I was at NIH in August when through all the test and got disqualified.
kellyC_: Really Butch? who said that?
MikeG: Since it took most of our lives to find out we even had a problem, it will probably take a long time to cure it. I'd just be satisfied to know I'm staying the same.
DarwynP: I wouldn't say that Dart! HA HA but, I believe it there legal responsibiltity to notify driver's licensing if there is an issue.
Butch: I was feeling weaker after taking the trial drug so I started taking it in the evening. Better to be weaker at night. Right!
MICH: Have to leave for my 10 year old grandsons PeeWee football finals...with gloves...etc..till next time have a great day!
Murf: Dean why?
TerryW: bye Mich
MikeG: bye Mich
Butch: So long Mich.
Murf: Bye Mich
kellyC_: dean why did u get disqualified
Dean: The blood test showed that have enemea
kellyC_: at the NIH
kellyC_: whats that dean
MikeG: That happened to several, Dean.
MikeG: blood count, right?
DarwynP: They told me they will probably look at about 55 men as some didn't qualify, but didn't say why.
Dean: Yes the blood count to low. Not enough iron
MikeG: red cells too low?
Murf: never give up
Dart!: What does 'having and enema' got to do with getting kicked out of the trials?
kellyC_: H"MMMMM... ok dean i see now
kellyC_: yah good question dart
MikeG: You've got to meet certain criteria to be accepted into the trial.
Dean: I'am thinking about taking dutasteride myself.
TerryW: Enemia not Enema :)
DarwynP: I found out my blood pressure is elevated and cholesteral a little above normal. Is this common guys!
Dean: Sorry not to good at spelling.
TerryW: me either
Butch: Kelly--When first explained about the test the Drs. thought we might influence each others thoughts as to whether the drug, either placebo or the real deal, was working for us.
TerryW: not sure if that is right
kellyC_: thats ok dean no problemo
Murf: They did not want you to take it for a reason Dart I would consult your doctor before making a decision like that
MikeG: Do it Terry. It can't hurt. It's already approved. I'm taking Avodart for a totally different symptom but it's the same drug - I'm told.
Dart!: The spelling is OK - I have a sick sense of humor!
kellyC_: ic,,ic,,, ok butch ty i get it now
TerryW: Ok, Enema's for everyone :D
Dean: Avodart and dutasteride is one of the same
Murf: Got to go Im havinf a tough time seeing the key board
TerryW: bye Murf
Murf: Later guiys Take care
Murf has left the room.
Dart!: Sorry about that , Murf!!
Butch: Hang in there Murf. Stay healthy.
MikeG: yep - do a search on Avodart and see what's in it.
Dean: Doc said that it would not hurt taking it
Dart!: What do doctors know about drugs - ask your druggist!
MICH has left the room.
Dean: Ithought that I would get so feed back from someone that is in the program
DarwynP: Butch, I'm not so sure we could influence things as everybody will have their own interpretation of how there feeling with the drug. The real results will be shown with the follow up tests at NIH. That's my take on the disscusing the trial.
MikeG: not enough time to tell yet.
Butch: Anna Lea, How is Pete? How did Charles fall. In the house or outside?
Gary_KS has left the room.
MikeG: No one will be able to tell for at least a year if it's doing any good for them.
Gary_KS entered the room.
Chuck: He fell in the bathroom while we were at Myrtle Beach....Just lost his balance. Most lucky nothing broke...We went to NIH recently also. Pete went with us to help me. He is doing fine.
MikeG: I wish it were faster reacting but it's not. It may not even help but we're sure hoping it will.
DarwynP: True Mike.
MikeG: So, does anyone else have anything beneficial to tell us about how to stay warm on cold day - besides staying inside?
kellyC_: how old are you Mike? if you dont mind me askin!
DarwynP: A little hope can't be a bad thing!!
kellyC_: ok thanks
MikeG: thirty something...
DarwynP: We need to look for some positives.
kellyC_: Well after the 24 month period on dusteride we'll all know if it works lol
MikeG: The positive is: It WILL shrink your prostate and grow more hair on your head.
Butch: Mike--Don't over expose ourselves to excessive cold for long periods of time. It is only when we try to move after sitting in the cold for a while that we find out that things dont work right.
kellyC_: lol maybe it'll help men gow thicker beards lol
MikeG: Taht's exactly right Butch!
DarwynP: Hey Kelly I believe we are close in age(41).
kellyC_: yes darwyn we are yup am 43 44 in april and still look 33
MikeG: Don't wait until you can't use your hands anymore - get them warm before you get to that state.
kellyC_: must be KD lol
MikeG: Well, it looks like we have about 5 minutes left in the chat. You can stay on after that if you'd like - we can take as long as we need.
kellyC_: hey darwny really curious... where do u fly from to NIH from winnepig???
Butch: Mike--Thanks for hosting the chat. Great to see so many on the chat today. Must go for now--Stay healthy till next we chat.
Dart!: This has been an enjoyable visit, Folks, thanks a bunch!END CHAT