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Kennedy's Disease Chat Transcript  11-04-2006

Topic:  Coping with Cold Weather

Host: Terry Waite

Chat Participants:




TerryW: Hello

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.

MikeG: chores?

Dart!: How are y'all? Hopefully we are going to have a good day!

MikeG: or just hungry

TerryW: feeding

MikeG: oh

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.

TerryW: 49th?

Dart!: The border, Terry.

Barb has left the room.

TerryW: oh

TerryW: she wasn't kidding

TerryW: lol

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: Yosemite

TerryW: Mid state

MikeG: do you have any problems with your feet getting cold?

TerryW: in sierras

MikeG: oh

TerryW: goothills

TerryW: foothills

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: ?

MikeG: axe

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.

Murf: Morning

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.

Murf: Lasik

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

james smiles

MICH entered the room.

TerryW: Hi Mich

james: oops... playing with emotions...

MikeG: Morning Mich

TerryW: It's OK to smile

Murf: Morning Mitch

james smiles

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.

TerryW: chest

MikeG: now THAT's COLD

TerryW: for hunters

DarwynP: I'm in Winnipeg now!

Murf: No thanks - my parents are in Winterpeg

Murf: Burrrrr

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: ouch!

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

Murf: Welcome

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.

Murf: //2

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.

MikeG: //2

Murf: Sorry

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

MikeG: Arginine

DarwynP: I think it is an issue but, to put the % on it? i'm not sure.

doughboy: Good Morning everyone

james: Arginine?

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

james: yes

doughboy: Fine Butch how r u

TerryW: Hmmmm

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... :-(

james: guilty

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

james: ok

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.

james: 'sigh'

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

MikeG: //1

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.

DarwynP: hear

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

doughboy: Thanks

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

DarwynP: Oh!

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: Easy

TerryW: Smooth

TerryW: take me up any hill

TerryW: thru mud

TerryW: snow

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!

kellyC_: //6

Murf: Rest

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: Lasik

Murf: The world is too fuzzy

doughboy: Well hell, what better person to have playing cards then

Murf: //2

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?

Murf: Great!!

doughboy: Great experience,

Murf: We even raised $8000

DarwynP: Cool!!

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

TerryW: no

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

Dart!: Great!

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,

doughboy: conference

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

DarwynP: bye

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!

TerryW: maybe

TerryW: depends

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

Murf: //1

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.

Murf: Why?

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 :)

kellyC_: lol//2

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.

Dart!: Oh!!

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

DarwynP: bye

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!!

MikeG: 58

kellyC_: ok thanks

MikeG: thirty something...

kellyC_: lol

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: Right!

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

kellyC_: //2

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!