Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  12-15-2007

Topic:  Tips for functioning in cold weather

Host: Bruce Gaughran


BEGIN CHAT

.

kellyC_: good morning

Bruce: The subject this morning can be about anything, but I would like to explore your thoughts and tips about dealing with cold weather.

TerryW: Butch what are your plans for Xmas?

Butch: Terry--you did an excellent job of putting together all the photos of the conference. Good job.

Bruce: Kelly, you should have some good tips on how to deal with the cold weather and its effect on our bodies.

TerryW: ty We will be posting them to the public today

Gary_KS entered the room.

Bruce: Ron, when is the NorEaster supposed to hit?

Bruce: Morning Gary

TerryW: also the KDA E-Xpress will be e-mailed,  Susanne has been working hard on the newsletter

Bruce: Gary, how bad did the ice storm hit in your area?

Gary_KS: Good morning! Gary Uchiyama. It is snow in Kansas AGAIN.

kellyC_: Well?,,,, Actually  I cant be out in the cold for @ least a few weeks untill my body Adjust;s to the cold.. once i adjust to the cold I.am ok... dress really warm.

MICH: My remedy for the cold weather so far is to do as little walking and standing as possible...get into my power wheelchair and go down hill almost a mile to the bus and hope it doesn't start snowing as the hill is a favorite for sledding

Butch: Terry--you ask about my plans for xmas. I will be with my two daughters for meals and exchanging presents from santa.

Bruce: I can't imagine the chair going into a six wheel slide.  That would definitely pump up the old blood pressure.

kellyC_: Usually about Minas 40 Below Zero here in sask i dont go outside as I spasm out Severly

TerryW: that is good, We will be thinking of you

Butch: Bruce--Saturday night.

Bruce: I was just saying earlier how I don't miss the NorEasters.  No fun!

TerryW: do they make cains for Power chairs LOL

TerryW: chains

MikeG entered the room.

Bruce: Kelly, I do not miss my winter trips to Prince Albert.

Bruce: Morning Mike

kellyC_: get a 4 by 4 terry power scooter lol

MikeG: Morning Bruce

Bruce: I still remember a couple of white-outs that we went through up there.

TerryW: I have the Yamaha rHINO

kellyC_: yes totally agree with you bruce..

TerryW: Rhino

TerryW: don't know how I did without it

TerryW: well worth the investment

Bruce: Terry, how big is the gas tank and how often do you have to fill it up?

Gary_KS: Bruce, a little homes that have lots of trees lost electric a few days. Fortunately, my area didn't lose the electric. :-)

TerryW: about the same cost as a good power chair

Bruce: I went back through the forum and saw some good ideas about dealing with the winter.

kellyC_: //1

TerryW: 6 gallon, about every 4 weeks

Lone_Wolf entered the room.

Bruce: Morning Lone Wolf

Lone_Wolf: Good Morning All

TerryW: Its 1 cylinder

Bruce: Lone Wolf, did you have any of the ice storm problems that the midwest and southwest had?

TerryW: 660cc

Lone_Wolf: No Sir

Butch: Terry--I don't know how you do each day all you do Rhino or not. You are the Rhino. Do you know what they call a group of Rhino.---A crash.--So don't do that Terry.

Bruce: I can't imagine losing power for several days the way my muscles handle the cold weather.

TerryW: LOL

MikeG: 660cc one cylinder?  That's a big piston!

Lone_Wolf: In case you are wondering I picked a new name because for some reason I could not log in using my old one, TJ

Bruce: Okay, I thought you were new.  Welcome TJ

Lone_Wolf: Yeah, I thought you might

kellyC_: When I'am out in the cold. all kinds of Problems happen to me? My Muscles really go there own way lol... even my Speech

TerryW: I use one of those Parabolic heat dishes that you plug in and it directs heat right at a source

Dart! entered the room.

TerryW: works great

Lone_Wolf: It is rainy and cold here though!

Bruce: One of the problems mentioned earlier was cold feet.  One KD'r mentioned filling a sock with uncooked rice and heating it in the microwave.  Then putting it in the bottom of the bed.  He swears by it.

Bruce: Morning Dart

Lone_Wolf: Everybody here ready for the Holidays?

Dart!: Good morning All

Bruce: YUP

TerryW: good idea bruce

Butch: TJ--What have you been up to?

Bruce: Of course, an electric blanket or mattrass warmer really works well also.

Lone_Wolf: I wrecked my new truck the other day, made me mad - 2 deer ran in to it, $8,000.00 damages

MikeG: I have cold feet also and ski socks work great for me.

TerryW: I have on of those as well bruce

TerryW: works great

Bruce: I wear socks to bed every night during the winter.  They really help also.

Butch: Bruce--loks like ou are finally getting some rain in your area.

Lone_Wolf: Not much Butch, had 2 teeth cut out last week, still sore.

TerryW: wow TJ,  You ok?

kellyC_: Electric Blanket helps alot

Butch: Texans are tough.

Bruce: Yes, Ron, we have been fortunate.  Unfortunately, Atlanta is still about 5-6 inches behind us.  They hope to have some rain later today and early tomorrow.  They need it bad!

Lone_Wolf: Yeah, but still mad - still have to fork over $500.00 deductible Terry

TerryW: :(

MikeG: 2 deer at once?

kellyC_: you should have had a Package Policy with a 50 dollar deductible

Bruce: Someone else in the forum mentioned to run warm water over your hands and wrists after coming in from the outside.  He mentioned 20 seconds or so should warm them up so they will function again.

Lone_Wolf: Yes, 1 buck, 1 doe they were rutting and did not care what else was happening

Butch: I wish there was some way to beat the cold problems we all have. Isn't it strange how it affects some of us more than others.

Lone_Wolf: They don't offer that here Kelly

kellyC_: ooooooooo....ok..lonewolf

Lone_Wolf: Murf said he might come over 2 day

MikeG: Ouch - how fast were you going?

Lone_Wolf: only 30 I was going to the store at 7:45 AM to drink coffee with the guys

TerryW: I have bought fleece lined pants and fleece lined shirts that work really good.  I got them at www.Cabelas.com

kellyC_: Does anyone in here take Muscle Realxants for the Spasm's or the Cramping?

Bruce: Another recommendation is to use the hand muffs (like the quarterbacks use) that tie around your waist.  You can use them inside and outside and a good one will warm your hands pretty well.

TerryW: I buy most of my clothes there

Lone_Wolf: Hey Terry that's where I shop almost daily online, in fact I recieved an order yesterday, great store

TerryW: Yes

Bruce: I read about them Terry, so they really are worth it?  I still wear long underwear all winter and they really help keeping my legs warm.

TerryW: I love Cabelas

Lone_Wolf: Kelly, I take Mirapex, Neurontin and Vicoden, as well as Oxyaden

TerryW: Yes Bruce

Butch: I hate coming in from the cold and having to go to the bathroom. The fingers can hardly feel the zipper. Another challenge.

kellyC_: ok ty lonewolf

TerryW: I have fleece lined Jeans, & regular pants, makes world of difference

MikeG: Wow - that's too bad.  I'm glad you're ok.  When I was working at NASA and lived in League City, I had those deer whistles on my car cause I used to see abunch of them and people advised me to put them on my car... I never had one jump as long as I had the whistles on.

Lone_Wolf: Cabela's hooded jackets are really warm as well, I have 1 on now

Bruce: Ron, I have the same problem.  Occasionally I have almosted panicked when I couldn't get the belt unbuckled and button undone on the jeans.

TerryW: me also bruce,

TerryW: not a good feeling

Lone_Wolf: Thanks, Mike, I have not had my new truck long and I was sick

MikeG: I bet

Bruce: When do you get it back TJ?

Butch: Another source of good quality winter clothesa is thru LL Bean. they ship for free, also.

TerryW: I now wear zippered boots with large pull tabs because tying is not an option in the cold

Lone_Wolf: They said about 2weeks, I told them don't rush I wanted it back perfect

MikeG: Kelly, I also take Neurontin (Gabapentin) and it seems to help the dry drowning episodes.

kellyC_: Advice for those with KD.. Move to a climate where there is no such thing, as cold weather lol//4

kellyC_: Really ok ty mike

Bruce: Mich mentioned earlier the cold feet and I swear by good "lightweight" winter boots.  They are the best when accompanied with wool socks.

Lone_Wolf: I like LL Bean as well

TerryW: Dry drowing is sort of like that torture method they talk about in the news

Lone_Wolf: Murf leaves for NIH tomorrow I'd hate to fly in this weather

TerryW: I guess they would not get any info out of me LOL

MikeG: we've been in the mid-80s here all week in Florida.

Lone_Wolf: Nice

kellyC_: I had a few of those!.... dry drowning

Bruce: Stop bragging Mike

MikeG: :)

TerryW: Mike we are coming to FL in Feb for a week

MICH: Terry, where did you get the boots... sounds like some Harley boots I saw... are they from Cabelas?

TerryW: Susanne is taking me to Disney & Epcot

Butch: Don't know what is going on lately with me, but I have had alot of choking episodes lately. I was supposed to get a barium swallowing test at NIH but, the machine was down. Two times in a row that it wasn't working.

Bruce: I also believe that exercising every day helps to keep the blood flowing.  When I sit around too much, I am colder than when I exercise in the mornings.

Lone_Wolf: I'm working on coping the conference info on the CD's as we speak, I'll be finished this coming week, then return them to Murray and I guess he will send them out!

TerryW: I get all my shoes & boots at www.Zappo.com  They are a fantastic company

TerryW: Zapos

TerryW: Zappos.com

kellyC_: My stomach Muscles is popping out as we speak,(Spasm)...

MikeG: That's great Terry!  Let me know when you will be there.  There's a chance that I may be there on business.

TerryW: ok

Lone_Wolf: Damn Terry we must shop at the same stores!  I love how easy you can return to Zappos, however I bought new walking shoes this week on Amazon and they had my K-Swiss for $33.00 regular $85.00

TerryW: I had a pair of boots that the zipper broke on after 1.5 years of use. they replaced them for free

TerryW: fast too

Lone_Wolf: Oh, there a great store

TerryW: I could not beieve it

Lone_Wolf: very fast

Bruce: I tried wearing gloves indoors in the winter, but found it inconvenient.  The hand muff is far more functional and doesn't get in the way.

TerryW: they even shipped me the new boots before I sent them my broken ones

Bruce: Sounds like another good company Terry

Lone_Wolf: I have bought all of my X-mas gifts on line this year, it's great

TerryW: I have been shopping thru the KDA shopping page Amazon Icon

Bruce: TJ, I also shop on line.  It is far more convenient and the prices are usually quite competitive if not better than in stores.

TerryW: also petmeds

MICH: Terry, are those Zappos brand boots?

Lone_Wolf: Yes Sir and no crowds or standing in line to check out.

Bruce: Have we received any reimbursements through Amazon yet?

kellyC_: lol

TerryW: Zappos in the store name but they have about every maker shoe & boot available

Butch: Mary Lou and I bought my grandson Steven a backpack from LL Bean. It was getting worn. So Annette called to order another one. They ask what was wrong with the one he had. They sent a new one at no charge. Great store.

TerryW: not so far this quarter bruce

kellyC_: do they have Sorrels?  Winter Boots?

TerryW: I think so

kellyC_: there really Warm

Lone_Wolf: There is a man here who makes our boots by hand R J Boots, but cheapest pair starts at $750.00 but he has the best I have ever seen

TerryW: that is too much for me

Lone_Wolf: Yeah a little pricy but a pair last 4-5 years easily

Bruce: Kelly, are Sorrels lightweight?

Butch: Terry--I guess all Texans have oil wells in their back yard.

MikeG: I haven't spent that on footwear my whole life!

TerryW: yep LOL

Lone_Wolf: Ha HA

kellyC_: Sorrels... i think so?

Butch: LOL LOL

kellyC_: all i know is there quite popular here in the North

Bruce: Dart, are you still there?

TerryW: Sorry gang I gotta go.

kellyC_: extremely warm for the feet

Lone_Wolf: Yeah, no my wife has good job and I have good disability payments

Bruce: Have a great time Terry

TerryW: ty

TerryW has left the room.

Lone_Wolf: Bye

Dart!: Yes, still here, Terry.

craig_h entered the room.

Bruce: Just wondering, we haven't heard from you in some time.

Bruce: Morning Craig

craig_h: good morning, I forgot today was chat day

Lone_Wolf: Do the amounts of disability payments vary from state to state

Bruce: Are you going to have some of the NorEaster weather also?

Bruce: Are you talking Social Security Disability payments?

Dart!: Sorry - BRUCE!!

Lone_Wolf: Yes

Bruce: It depends upon your earned income

Lone_Wolf: Okay

craig_h: I had my 18 month NIH check up first of Dec.

Bruce: No, they do not vary.  It depends upon how much money you earned over your career.

Bruce: How did it go Craig?

Lone_Wolf: Well my check is only $1900.00 a month I was wondering

Butch: Brucxe--don't say EARNED income--don't forget TJn was a policeman. He doesn't know earned. LOL

craig_h: I did better on several things, a few not as good, some blood work had to be re-done

Lone_Wolf: Bite me! Craig, LOL

kellyC_: Here in Canada you get Canada Pension Dissabilty witch isnt Much..! and Also your Private Diss Insurance proviiding you had the Benefits from your Work Place

craig_h: huh?

Bruce: From a personal perspective, Craig, how did you think you did?

Dart!: People who make jewelry havee the answerr for hard- to- get-hold-of- zippers. A light 's' hook and a little length of chain.

craig_h: over all, the trip was not as taxing ............  the 50 foot walk test, I did better than I have since this began

Lone_Wolf: Good idea Dart

craig_h: barely used the cane !

Bruce: I am not familiar with Canadian benefits.  I would actually like to learn more about it.

Bruce: Criag, that sounds positive.

Lone_Wolf: Boy I tell you what, Murray and I had a 2 week trip to Vegas and back and I was totally wore out for 2 weeks

Bruce: What is a light's hook?

Dart!: I missed that, Crraigg, on how you now hardly need a cane!

craig_h: got home, and my PT doctor tried to change my sleep med ................ it totally messed up my muscles

Butch: I was down at NIH on Dec 4th. I did the walking test and they said I did about the same or a little better. I felt much weaker.

kellyC_: Well i got to go folks.. see ya all next time

MikeG: I bet you were TJ, that was a long, hard trip!

craig_h: on the NIH 50 foot walk test, barely used my cane

kellyC_ has left the room.

Lone_Wolf: Perhaps when ya'll get to NIH you all are trying harder to do well

Dart!: Sorry Bruce, the chain has nothing to do with 'lights'. 'Lightt weight'!!

craig_h: nope Lone, I do better at work than I did

Bruce: Craig, do you drive to NIH?

Lone_Wolf: Yeah Mike it was, I told Murf no more like it from now on - we fly

craig_h: yes, it's about a 5 hour drive

MikeG: That's great news, Craig!  How old are you?

craig_h: 48

Bruce: Okay, thanks Dart

MikeG: how long have you been on the trial?

craig_h: 18 months , 3/4 way thru the trial

Lone_Wolf: Yuo know, Murray fell 4 times on our trip up to Vegas, damn Cananadian, too big for me 2 pick up- LOL

Bruce: One of the most difficult problems I had while still working in PA was getting from the car to the front door of work when there was ice or hard packed snow.  My legs did not want to hold me up.

MikeG: that's really good news...

Lone_Wolf: Yep Craig - that is!

craig_h: my work knows, if there is even a hint of ice ...........  I'm working from home

Dart!: If you want to  get really flashy with yourr 'zipper pull', you can have a flashy glass bead fastened to it!!!

MikeG: have you noticed any side affects?

Bruce: I remember once when I still had the sedan and we had ice.  I couldn't stand up because my legs would just slide out from underneath me everytime I pushed off.  I finally asked someone to put their feet up against my toes and I then was able to get up.

Lone_Wolf: That's why I most wear warm up suits and wind pants - just pullem down quick

craig_h: my biggest side effect is I want to do more stuff, lol. part of that was finding out I'm diabetic and getting that under control

Butch: Well guys, I must go for now. I hope you all have a Merry Xmas and stay healthy till next we chat.

Lone_Wolf: Are you type 2 Craig?  I am

MikeG: ok, Bruce - later.

craig_h: happy holiday's Butch

Lone_Wolf: Bye Butchy

Bruce: Thanks Ron ... Merry Christmas and we are thinking of you always

craig_h: yes Lone, type 2

Butch: Thanks. Bye.

Butch has left the room.

MikeG has left the room.

Lone_Wolf: I take Glumetza and Januvia

Bruce: Diabetes (sp) is a real problem for several KD'rs.  Fortunately, they are getting better at treating it.

Lone_Wolf: That's true Bruce

craig_h: just gluofage and miconase here

Lone_Wolf: Those are p[ills I take it Craig

Lone_Wolf: pills

craig_h: I just don't want to go to insulin ................ going back on my diet HARD day after Christmas

Bruce: Mich, you mentioned taking the bus to work.  It is great you have such a good transportation system that has handicap access.

Lone_Wolf: Guys I am off to visit my 81 year old father, Happy Holidays to All, stay safe and healthy

Bruce: Take care TJ ... Happy Holidays

Lone_Wolf has left the room.

Bruce: Dart, are you in northern California (Bay Area)?

Dart!: No, Bruce, I am in British Columbia.

Bruce: Oh, once of my favorite places to visit

Bruce: I love Vancouver

Bruce: North of there is some pretty country

Bruce: I thought this chat was pretty good today.  Plenty of comments and some good ideas from several people on dealing with the winter.

MICH: Bruce, not all roses with the transportation, I have to go up their ramp from a drive way and often the angle is wrong and last week slipped one tire off side... also they don't snow plow the side walks and homeowners don't alway shovel the walks so I really have to watch for cars

Gary_KS: Happy holidays, :-) all! I got to go.

Bruce: FYI - We will be announcing the winners of this year's research grants in a couple of weeks.

Dart!: Where two young men dropped their pickup through the lake ice, then had to walk 5 miles in freezing weather to a natural hot springs where  tthey stayed in the hot water until someone came to help them.

Bruce: Take care Gary -- Happy Holidays to you and yours

Dart!: Yes, we are blessed with beautifful country.

craig_h: Happy Holiday's y'all

Bruce: Where did that take place Dart?

craig_h has left the room.

Gary_KS has left the room.

MICH: You guys have a merry xmas and happy and "warm" new year

Bruce: We are down to the three ... Mich, that sounds rough.  I admire your tenasity (sp).

Bruce: Merry Christmas Mich

Dart!: It is a lake about three hours north of the U.S. border - White Swan lake.

MICH: I've got to keep doing something... enjoy the challenge

Bruce: Interesting ... They are fortunate to have the hot springs

Dart!: That WAS a good thing, Bruce. Sure did save their hides!

MICH has left the room.

Bruce: END CHAT

END CHAT