Kennedy's Disease Association

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Kennedy's Disease Chat Transcript   12-17-11

Topic:  Holiday Traditions and Keeping Warm

Host:  Bruce Gaughran

Bruce   Good Morning and Happy Holidays
Stan   Good morning, Bruce, from cold and snowing Michigan, "where it gets so cold it can kill a senior citizen in under 2 minutes."
Bruce   We are colder today also with a strong north wind (thanks).
Bruce   Morning David
David   Good Morning Bruce and Stan
Stan   Happy to send the wind back. We had it for the last couple of days.
Bruce   David are you getting the same nasty weather as Stan?
Stan   Good morning David
Bruce   Morning Stan
Bruce   Morning Lou
David   No the weather here is mild for an Ohio December
loshimo11   Good morning everyone. This is loshimo11 joining in from a cold but sunny San Francisco.
Stan   Good morning loshimo11
Bruce   Are you enjoying some warmer weather in San Francisco?
Bruce   I am a little slow today, sorry!
Bruce   We were in the low 70s for a couple of days this week, but it changed when you Yankees decided to share.
Stan   I'm slow every day now, Bruce.
loshimo11   It's been in the 60's during the daytime but gets pretty chilly at night (as low as in the 20's) in some areas.
Bruce   I don't mind the cold as much if there is sun.  It is when it is cloudy or raining with strong winds that it chillds me to the bone.
Bruce   chills
Bruce   Eight more days until Christmas.  Are you guys ready?
David   I seem to be more sensitive to the cold weather in recent years, is that common for KD?
loshimo11   Done with shopping this year!!! Don't know how that happened...
Bruce   Yes! Yes! and Yes!
Stan   I suppose, if I have to, I guess, not really.
David   We are looking forward to our newlywed daughter and her hubby coming "home" for Christmas from their much colder Chicago home.
Stan   David, Yes, to sensitivity to the cold with KD.
Bruce   If I don't dress appropriately, my muscles stop working after being out too long.  My hands are the worst.  They never seem to be warm enough during the winter.  I use the "hot-hands" and it helps.
Stan   Hi, Gary
Bruce   Morning KC
Gary_KC   Connection reset by peer
Stan   My hands cramp up when the temp drops below 50
loshimo11   Bruce, I wanted to take this opportunity to thank you (again) for your continued efforts putting together your "Living with Kennedy's Disease" blog. I look for it 3 times a week and enjoy every bit of it.
Stan   Ditto, Bruce
Bruce   Your welcome.  Who would ever have thought it would grow to what it has today.  I struggle sometimes with finding interesting topics, but I try.
David   OK so one more thing to blame on KD; and my hands are the first to suffer from the cold also
Bruce   Gary, we were talking about the cold weather and how it affects us who have KD.
Gary_KC   Connection reset by peer
Bruce   Gary must be having problems this morning.
loshimo11   Bruce... it must be tough but you're very creative and always come up with very interesting topics. I certainly wouldn't be able to do it!!!
Stan   David, you can expect a loss of feeling in your feet and toes too.
Bruce   I use choppers down here when I go out.  No one in the south knows what they are, however.  The wool mitten inserts and leather exterior really helps ... especially with the hot hands inserted in them.
Bruce   Morning TedA
Stan   Hi, TedA
loshimo11   Can't handle extreme temperatures. Anything above 80 and below 55 affects me.
loshimo11   Hi TedA.
Bruce   Ted, are you getting any of this cold weather right now?
David   My wife for years has used a "rice sock" (a flannel bag filled with about a pound of rice) heated for one to two minutes it really helps especially at bedtime to warm the feet.
David   Hi Ted
loshimo11   So, do we have any personal "tricks" on how to handle this cold weather?
Bruce   David, I have heard of that.  I wear socks to bed and have an electric blanket.  I noticed my feet feel cold even if they are warm to the touch.
Stan   I try to stay inside as much as possible. :)
TedA   Good morning and happy holidays from Richmond VA
loshimo11   I have now had to resort to both an electric blanket and electric mattress pad. Get heat from both ends!!!
David   I find that using layers and a good warm hat help me.  I use a Tilley hat (Canadian made) check out
Bruce   Ted, did you happen to see my forum post or blog about John having problems with dutasteride.  He has been struggling with it for the last nine months or so.  He is ready to quit taking it.
Bruce   I can understand Luis.
Bruce   The hot hands are nice because they will last about eight hours.  I keep them in the pockets of my sweatshirt and they warm me all day.
Bruce   Gary, I see you are struggling this morning with the chat room.  Sorry!
Gary_KC   Good morning.This is Gary joining in from Kansas City.
David   Hi Gary
TedA   No I did not.   Is his Dutaseride for US or Canada?
Gary_KC   Bruce, Yes, I restarted my PC. It works now.
Bruce   Gary, we are talking about surviving in the cold.
Gary_KC   Hi David.
Bruce   Ted, he is in Maryland and was part of the clinical trial.
Bruce   Ted, have you had a PSA test since taking dutasteride?  I noticed in the warnings that it might give a false positive.
Bruce   I still find it hard to believe that I was raised in Minnesota.  We loved winter.  Today, I can't even imagine what I would be like there,.
TedA   Bruce, where is John getting the durasteride?      I do not think I have had a PSA test.     Should I request one?
loshimo11   We've been using one of those "heat one room only" electric heaters this year. Don't turn on the gas furnace to heat up empty rooms... Don't know what it's gonna do to my electric bill this month...
David   The other thing that I found helpful in the cold is a pair of mittin_gloves< the mitten part can be opened to allow use of the fingertips for things like using keys and still keep most of the hand covered>
Bruce   Ted, no, not necessarily.  I was just curious because I will have my annual test in early January.
Gary_KC   Bruce, what is PSA test?
Bruce   It is the blood test for early warning of prostrate problems.
Gary_KC   Thank you, Bruce.
Bruce   PSA = Prostrate Specific Antigen
loshimo11   David... There are now gloves that have sensitive fingertips which allow you to use "point and drag" devices like smartphones and ipads.
TedA   I think I am having a challenge with the duasteride that I am getting from Canada.     I am going back to US made and placed the order this morning.
Bruce   Prostate-specific antigen (PSA) is a protein produced by cells of the prostate gland. The PSA test measures the level of PSA in the blood. The doctor takes a blood sample, and the amount of PSA is measured in a laboratory. Because PSA is produced by the body and can be used to detect disease, it is sometimes called a biological marker or a tumor marker.
Bruce   I am getting mine from the local drug store so I cannot comment on that.
Bruce   Luis, I saw that also.  They looked pretty neat.
loshimo11   They're pretty difficult to use if you have to pick your nose...
David   Where do find those fingertip gloves?
Bruce   Luis, you always have great one liners
Bruce   I have been rewriting a book that I wrote back in '96.  It is a fantasy novel (about 100,000 words).  It has been fun, but sitting at the computer for hours at a time have caused some neck problems again.  I have to be more vigilant.
loshimo11   David... I got mine at a local sporting goods store but have seen them advertised via all the normal spam I get.
David   Thanks Luis
Bruce   I don't know if you noticed, but on our website we have a "What's New' section.  Whenever I add new content, I also up that page with a link to the content.  Recently, there has been a couple of interesting research reports.  One was especially good because Ed translated it so I could understand it.
Bruce   It was the same article I added to my blog.
Stan   Yes, I noticed. I also noticed you change the icon and a couple of other items. Looks good.
Bruce   Ed, is such a blessing.  He is my go-to guy whenever I read something that doesn't make sense in regards to research.
Gary_KC   I saw it. Thanks great work.
TedA   Bruce, I'll find your blog about John, read it and compare.
Bruce   Thanks, Stan.  I am trying to keep it fresh and make certain that when you return to the site you don't have to go through every page to see what is new.
loshimo11   Talking about neck problems... Has anyone experienced specific problem areas that are only temporary? I've had issues with my neck which come out of the blue for no reason. It prevents me from keeping my neck upright for a period of a week or so then it goes away overnight. Same with my left leg (not keeping it upright of course!). I've noticed that the neck issue happens around this time almost every year.
Bruce   Stan, since you are an expert in websites, any suggestions would be appreciated.
Bruce   I have been receiving quite a few emails from around the world with questions about KD.  There still seems to be dissinformation or no information, but it is getting better ... the word is getting out there.
Stan   I've had a lot of experience, but I would not call me an expert. Will let you know if I have any ideas like the KDA store addition.
Bruce   Thanks
Bruce   The KDA Forum is still pretty active.  There is a strong base group that keeps adding comments and some good new blood also.  I just wish I had more time to focus on all of these things.
Stan   Luis, I notice the right side of my neck gets a little weak, and a little pain now and then, but nothing like what you describe.
Bruce   Luis, I have been pretty fortunate with neck problems until this year.  It must be an age, posture, muscle atrophy and computer problem for me.
David   I have not had neck problems but do have trouble with my left shoulder and as part of some physical therapy a cold compress applied for 10 minutes helped.  I use that rice sock but this time from the freezer.  The cold is not fun but it does help with the pain.
Gary_KC   Luis, I have neck weak. I sometimes tired to hold my head.
Bruce   Luis, are you doing any neck exercises?
Stan   I read the Forums, Bruce, but I haven't seen anything that I can comment on. If anyone wants to discuss feeding tubes and trying to gain weight, I can contribute.
TedA   Bye for now.   Have a happy and safe  holiday  season.
Stan   Take care, TedA
Bruce   Stan, you might want to start a new topic because I know several KD'rs with feeding tubes.
loshimo11   Stan... my neck problems come out of a sudden and then go away as quickly. It's pretty noticeable specially when walking around. I found a couple of dollars a few years ago while outside so I shouldn't complain.
Bruce   We used to be happy to find some pennies or nickels.  Now it is dollars.
Stan   Sounds like a plan, Bruce.
loshimo11   Stan... I've been trying to gain some weight the last few years. Any help would be appreciated!!!
Bruce   Yes, Stan, I have been asked questions on feeding tubes a few times but cannot comment (lack of experience).
Stan   Send them to me, Bruce. I've had one for almost three years.
Bruce   Also, too often KD'rs are struggling to keep their weight down.  I am slightly on the light side these days (atrophy), but I can't imagine what it would be like if I had to carry around another 25-50 pounds.
Stan   I know the topic for today is Holiday Traditions. For us I guess that means keeping warm. Besides, this is a good conversation going.
Bruce   Did any of you watch any of the conference videos?
Bruce   Yes, I started with that, but often we digress to more important topics.
Gary_KC   Bruce, YES, I watched three of them.
Stan   Not yet. Busy getting the truck fixed after the wife used it for Deer hunting.
David   I have struggled with too much weight most of my life but over the last couple of years have dropped about 30 pounds and its made a world of difference.
Bruce   Stan, that sounds like a story.
Bruce   Good to hear David.  Jim in Idaho has struggled for a long time with weight issues and he has put together a great program that is working for him (exercise and diet).  I am really proud of him.
Stan   Bruce, just a typical Michigan story: Hitting a deer on the way to work, driving the back roads.
Bruce   Oh, my daughter and son-in-law hit one recently also.
loshimo11   Stan... I make this special once-a-year soup/stew that the family and friends slurp throughout Christmas day. It's grown in popularity over the years and I am now forced to make a very large pot. I get requests to make it throughout the year but always refuse because I try to make it a holiday tradition.
Gary_KC   Diet is good, but we also loose muscle without exercise???
Bruce   Gary, yes and we lose muscle without or without exercise.  Just perhaps a little more when we don't exercise.
Bruce   with or without
Bruce   Luis, tell us more about your stew.
David   Shedding a few pounds has allowed me more mobility and stability which in turn has allowed for more exercise.
Bruce   Personally, I love the Christmas tree.  My wife and I use to decorate it.  Now, she does the decorating.  It always gives the house a warm glow.
Bruce   David, I think that is great!
loshimo11   It's actually a family recipe that my grandmother used to make called "ajiaco". Don't tell anyone but it can now be found online if you google it under Cuban recipes.
Bruce   I thought next you were going to say that you order it online and continue to tell everyone you made it.
David   We love have a tree also, but the large one is too difficult for my wife to handle.  This year we purchased a smaller tree, it weighs less than 12 pounds and at 4 1/2 feet allowed me to help set it up and to decorate.
loshimo11   Bruce... have thought about that but once you get spoiled with certain ingredients, you can't fool them.
Stan   We've downsized our tree. I still put up lights. Yes, I climb a ladder. We usually get together for Chilli on Christmas Eve, then get together again on Christmas day for a big feast. In recent years, the tradition seems to have become - who is going to be sick or hurt this year.
Bruce   Personally, I miss my wife's jumbalia.  She hasn't made it in quite a while.  Since I no longer travel to the Cajun country I cannot get a fix.
Bruce   Stan, my family always had chili after the candlelight service on Christmas Eve.  We would all be in suits and my mom would give us dishtowels to wrap around out necks so we didn't spot our shirts or ties.
Bruce   I still believe that family traditions are important.
David   I like Cajun food also, but have found that I can no longer handle something that spicy.  It triggers swallowing problems.
Stan   Yep, you got it, Bruce. Still go to Mass
Bruce   Stan, I am impressed that you can still climb a ladder.  My last ladder expisode was the 'very last' one for me.
David   One of our traditions is singing in the Choir and the Christmas Eve service is always a highlight
loshimo11   Stan... Same here (except for the chile, but that sounds like a great idea). We had a large tree last year and I ended up tripping trying to get around it.... broke my big toe and ended up in the ER room all Christmas morning. On top of that, this happened while everyone was still in bed and I was accused of "hovering" over the gifts.... LIES!!!!!
Stan   David, ah yes, the swallowing issues have caused me to stop eating a lot of foods I like. The throat exercises help, but only to a point.
Bruce   My other funny winter story was when I was trying to feed the birds in PA.  We had a huge snowfall (Nor-easter) and there was about three foot of snow on the ground.  I fell down in the snow and could not get up.  I crawled (burrowed) through the snow to the garage.  Embarrassing.
Stan   Yes, I can still climb a ladder, carefully and slowly. I never am on one without someone to watch me though.
Bruce   Luis, I believe you.  In my entire life I have never shaken a gift.  Oops, there goes my nose growing again.
Stan   Bruce, I've done the crawling through the snow trick. Last Winter, in fact.
Bruce   I was so embarrassed that I did not tell my wife.  There is more to the story and that explains why I didn't tell her.
David   If I ever attempt to get on another ladder, the least of my worries would be falling.  My bride has made it very clear that certain things are just not allowed.  I guess that is a new tradition, accepting limitations. . .
Bruce   Christmas for my wife's side is a special event each year.  We still get between 20-24 there for the day.  I love it.
Bruce   David, your wife sounds like mine.  She has seen me over-extend my capabilities too often and ended up hurt.  They are the ones that suffer when we do not use our brains.
Stan   Our family get-together has dwindled to about 12 over the years for Christmas. Still get over 50 for the Summer one though.
David   One of our Yelton-family traditions is to join with my brother and sister's families and recently invite all of our surviving aunts and uncles to join us.  We typically meet mid-day on New Years day.  The stories go on for hours.
Bruce   I still love to see the faces of our nieces and grand nieces.  The nephews are all adults now.  They just light up in expecation.
Bruce   Family stories are a treasure.  With as large a family as I had, the stories went on for hours also.  I believe we tell most of the same stories each year and laugh just as hard.
Bruce   AJIACO - I plan on looking that up after we finish today Luis.
Stan   We are a little different. When my nephews run out of embellished true stories, they make some up. Lots of laughs.
loshimo11   Ahhhh... Holiday family gatherings...... Everlasting memories.... Most of them good, some bad and some funny.
Bruce   Yes, I love the traditions and hope that they never end within our family.
loshimo11   Bruce... my personal suggestion is to use extra garlic (if you can handle it). But don't tell anyone...
Bruce   Luis, I love garlic so that shouldn't be a problem except for people we might meet ...
loshimo11   Bring some extra masks...
Stan   Yep, Chestnuts pasting on an open fire, burning the carpet and the floor. Spreading across to the drapes and the tree...
Stan   roasting
Bruce   Well, before you all sign off, I want to wish all of you a very Merry Christmas and a safe, healthy and happy 2012.
Gary_KC   I 've got to go. Stay warm and happy holidy! Bye
Bruce   Stay upright!
David   Have a Merry Christmas and a very Happy and Healthy and verticle New Year.
Bruce   It is past time for my dogs second walk of the day.  Take care guys and thanks for joining me today.
loshimo11   Gotta go soon... Just wanted to wish everyone in the chat the happiest holidays. Please make sure to be extra careful and stay upright. Same wishes to all those unknown individuals that have popped out of nowhere to help me when help was needed!!!
Stan   Thanks, Bruce. Hope everyone has a safe, happy and healthy Holiday too. Chat with you next year.
David   Until next time
Stan   Bye, David