Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript   01-01-2011

Topic:  Open Forum

Host: Lou Tudor

loutudor: Good morning!
poohsdaddy: Good Morning Lou....  Happy New Year !!
loutudor: Happy New Year to you as well...
poohsdaddy: Do you think many other will join the chat today ?
loutudor: Your location?
loutudor: I don't know how many will join us...time will tell...
loutudor: Good morning Stan!
Stan: Good morning
poohsdaddy: Just north of Milwaukk, WI.  Cloudy and Cold here this a.m.
loutudor: Bruce will not be able to join us this morning, so I'm filling in ...
poohsdaddy: Good Morning Stan ....  Thanks for remembering my birthday.
poohsdaddy: Milwaukee
Stan: Good morning. It was easy to remember with the reminder from FB
loutudor: My next door neighbors are from WI...cranberry farmers
TedA: Happy New Year from Richmond, VA
loutudor: Happy New Year Ted!
Stan: So this is the Jan1/hangover edition of the chat?
poohsdaddy: Did you all have a Merry Christmas ?
loutudor: We celebrated midnight at 10pm!
Stan: Hi TedA
TedA: Yes, with family
Stan: We were at my daughter's family's house for Christmas Eve.
loutudor: Anyone with nearby family at Christmas is blessed
Stan: Define nearby, Lou
poohsdaddy: 2 of our sons came with their families.
loutudor: Celebrating together...
poohsdaddy: Our other son is in Philly; and, couldn't come this time.
Stan: We drove halfway across the state to be with our kids. It was worth it.
TedA: So what are your New Years Resolutions?    Mine is to have more of the 3 ""L's""  - LIVE, LOVE and LAUGH
loutudor: Good one, Stan!
loutudor: Good morning, Paul!
Stan: Hi Paul.
loutudor: My resolution is exercise at least 3x per wk
Paul Sramek: good morning & a Happy New Year
Stan: My resolution: Just stayin' alive.
loutudor: I like that, Stan!
Paul Sramek: Just stay working
poohsdaddy: I don't actually make resolutions, but just try to do better.... at things.
loutudor: Ok, Pooh, I get it...
poohsdaddy: Your ideas all sound good !!
Stan: Jeff, that's good enough and more than some would do.
loutudor: Now to focus on those resolutions...:)
TedA: I was doing 3x a week at the YMCA in the pool.     The getting there, changing and back home was enough of a workout.     In my new place that I will be in March it will be easier and I will have more room plus a hot tub to exercise in.
poohsdaddy: :|
loutudor: At our Christmas eve church service, we wrote a resolutuin, put it in an envelope addressed to ourselves.  At some time later in the year it will be mailed back to one else will see it...
loutudor: Sounds good Ted!
poohsdaddy: The WI Badgers play in the Rose Bowl again today.  1 of the players is from our town.
loutudor: Lots of plans arounf tv today...
loutudor: Ted, do you find water exercise helpful?
poohsdaddy: Yep, and I knit or do crafts while watching.  Need to make some afghans for the new babies... and a wedding gift !  Made 1 for a fundraiser for a friend last month.  They raised nearly $9,000 for her. (Recently diagnosed with ALS)
TedA: Yes because I can do things in the water that I can not do on land and I am 90% lighter.    A easy workout helps the muscles that do not get used in my daily routine.
loutudor: I need to do crafts while I watch tv...instead of eat lol
poohsdaddy: I should make one to donate to KDA too.... to raffle at the next conference.
loutudor: Some of those homemade crafts would be great for  KDA auction!!
loutudor: Most of us would be more inclined to buy something made by a friend in KDA
poohsdaddy: I usually pick neutral colors when I am donating an afghan for our church or others.
loutudor: Ted, do you have any special rails for getting in and out of the hot tub or pool?
loutudor: Good idea Pooh...makes it easier to sell at auction
loutudor: We could also take orders with a price tag for specific colors!
poohsdaddy: Sure.... and the profit could help KDA.
TedA: Since I do not climb steps and my hot tub will be in the garage as the condo association will not allow it outside I am working on an overhead handle to support me in getting in & out.     Worse case is it will have to be a lift of some sort attached to the ceiling.
loutudor: Please send me your e-mail address...  This email address is being protected from spambots. You need JavaScript enabled to view it.
poohsdaddy: My favorite pattern showed up in a craft supply catalog last month.  (Should have gotten a patent or something)
loutudor: Whatever works, Ted  Keep doing the water exercise
poohsdaddy: Lou, I think we're already friends on Facebook.
loutudor: Any other crafters out there?  This could be a great fundraiser for KDA
loutudor: OK Pooh, thanks
loutudor: Good morning Losh!
TedA: At the Y they have a chair lift to get ne out of the pool.   At my new place I have talked about a chair lift at the outdoor pool.     They like the idea and 2 other peolpe said they also would be able to use the pool if it has a chair lift!
Stan: Hi Luis.
loshimo11: Hello everyone and Happy New Year!! This is Luis Shimomura joining in from San Francisco.
poohsdaddy: Hi Luis.... I tried to add you on Facebook, but the computer said I had to know you first.  ??
loshimo11: Overslept... but didn't think anyone would be here.
loutudor: Ted, it takes someone with your leadership to get that going at the pool!
loutudor: Obviously this is not the champagne crowd! :} :}
loshimo11: poohsdaddy... don't know what's going on with Facebook. I'll try to find out and I'll get back to you. My daughter's boyfriend used to work at FB so he should be able to help me.
poohsdaddy: Have two new baby boys since last month (both premature) and another grandchild coming next summer. So, I'll be busy making afghans for them.
loutudor: How long does it take on average to make one?  I have no knitting skill
poohsdaddy: Thanks Luis...  I'll also try again.  Our computer had a ""Trojan"" virus.  We had to call the ""Geek Squad"" to fix it.
loshimo11: Gotta go and let the dogs out for a few minutes... As Arnold said.... I'll be back...
TedA: Not this time!   Jerry steps into the Gov job!
poohsdaddy: Lou, it varies.  When I feel good, I can get one done in about a month.  Otherwise, it takes about 2-3 months depending on the size.  I used to be able to knit for hours at a time, but not so much since KD.
loutudor: sounds like good therapy...
loutudor: This morning's paper makes it sound like the economy is slowly rising...
poohsdaddy: I was unanimously elected to do the knitting for our family.  My sisters don't know how.... and mom used to make all kinds of stuff.  I'm still using some yarns that were hers.
loutudor: Our house is up for sale...we're hoping it sells in the next couple months...the ""season"" here in FL
poohsdaddy: You guys still here ?  Anything going on ??
loutudor: We're still having our first blood mary,
TedA: Where in FL are you and where are you moving to?
loutudor: I'm in Stuart, FL on the water...moving to a golf course place in Palm City. (on the East coast of FL)
poohsdaddy: My cousin John Mengel (KD-er) lived in FL.  I think he's been gone about 4 years.
loutudor: Summers are brutal, but winter is great
loshimo11: I'm back....
loutudor: I grew up in MI
loshimo11: lou.... is the real estate market getting better in Fl? It's been murder here in Ca.
loutudor: Question:  Does anyone have a KD carrier in their family showing signs of having a milder form of KD?
loutudor: I also lived in San Diego, CA for a long time.  I believe the economy in FL is a bit better
Stan: Not that I know of, Lou.
poohsdaddy: I have 1 who has been diagnosed for several year, and his younger brother is starting to show similar symptoms within the past year or so.
loshimo11: So far, I'm the only ""lucky"" one in a family of 5 aunts and my mom. Out of that bunch, I'm the only ""lucky"" male to have gotten KD.
loutudor: Thanks, Stan  It's something we haven't really investigated yet
TedA: My aunt thinks she has some KD symptoms and she is also 80 y.o. so that could be part of it.
loutudor: It's a curious question, Ted
loutudor: How's the weather in MI, Stan?
poohsdaddy: My aunt (also 80-ish) says that my grandpa did not have KD.  But her son & I believe that he probably did and was not diagnosed.  He died in 1958.  
Stan: A little warmer the last two days, high in the 50's, rain. Snow is all gone.
loutudor: What does your aunt think his illness was?
loutudor: We've had similar weather, believe it or not (no sno tho)
poohsdaddy: He had been hit by a car... and had a broken hip.  Hip replacement wasn't done back then.  So, he was just in his chair for years after that.
loshimo11: Well everyone.... Breakfast is here!!! Gotta go.... Please have a healthy and prosperous new year. Last one... don't forget to turn off the lights!!!
loutudor: Yes, that would be a tough call to guess a diagnosis
loutudor: Have a good breakfast!
poohsdaddy: It amazing how much can be done medically in recent years.
loutudor: I'm thankful for the improvements in access and equipment available!
TedA: 2nd that!
Stan: True. They can fix many of our problems and symptoms, but cannot fix the cause.
loutudor: One of these days, Stan...we will get a cure!
poohsdaddy: Thanks to all for being here today !!  Hope to see a few more on the 15th.....  Happy New Year !!
loutudor: Happy New Year!
Stan: Not in my lifetime, I'm sure. Happy New Year Jeff.
loutudor: Keep prayin', Stan
TedA: Stay upright and talk again on the 15th.
loutudor: Take care, all
Stan: Take care. Wish we had more to talk about. Maybe next time.
loutudor: What would you like to see on our agenda next time?
loutudor: Anything specific for you, Paul?
Stan: I'll have to think on it a little and let you know, Lou. I do know that I'd like to see a specific subject topic for each chat. It might get more involvement. I've noticed more people log in when there is a guest Dr. or a specific subject.
loutudor: Yes, I agree  I'll bring that up for attention
loutudor: Have a good day guys, and please log in again next time...
Stan: We could set one up to discuss the new web site when it is launched. Ask for input on subjects we'd like to see in the newsletter. Get some feedback.
loutudor: Good ideas...thanks Stan.  You did a really nice article for this last newsletter!
loutudor: Any thing else you'd like to see in a newsletter?
Stan: Ok. see you later. Time's up. Have a great year, Lou. You too Paul.   I'll think about it Lou. I was hoping to generate thought-starters from the others in the group.
loutudor: We'll do that, Stan.  Bye for now...
loutudor: Take care, Paul