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."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript   12-18-2010

Topic:  Open Forum

Host:  Bruce Gaughran

Bruce: Morning Stewart
Stewart: Good morning Bruce
Bruce: Morning Stan
Stan: Morning
Bruce: Stewart, I lived many years ago in Anaheim and Huntington Beach.
Stewart: I live in Torrance, right now the weather sucks it's raining, but on the bright side I'm Off work until the new year
Bruce: Morning TedA
Stan: Hi TedA
TedA: Hello from Richmond, VA
Bruce: Stewart, that isn't a bad holiday vacation.  
Bruce: Terry Waite said they are expecting 9-10 inches of rain where he lives and in the mountains near him they could have 100 inches of snow!  WOW!
TedA: Better the the cold weather and snow in VA
Bruce: I live in Georgia and we have had a terrible December with extremely cold temperatures and ice storms.
TedA: Tahoe has gotten a lot of snow!
Bruce: We live on a high ridge overlooking a lake.  The ice would not allow us to leave the house for close to a day.
Bruce: At least we kept our power this time.
Stan: Like St. Paul, Georgia Bruce? We've had about 9"" of snow here in Michigan. Nothing unexpected
TedA: VA drivers do not know how to drive in snow
Bruce: TedA, then you should see Georgia drivers!
Stan: That's ok TedA, Some Michigan drivers don't either
Bruce: I am originally from MN and we grew up in snow and ice, but Georgians panic and leave cars abandoned in and along the roads.
Bruce: Morning Luis
Stan: Hi Luis
TedA: anyone that lives in the South and do not see much snow are bad drivers in it
Bruce: I would like to tackle a subject that needs to be discussed occasionally if it is alright with you guys.
loshimo11: Good morning and happy holidays to everyone. This is Luis Shimomura joining in from a rainy San Francisco.
Bruce: The subject is ""being your own health advocate.""
Bruce: These last couple of weeks we had two associates who had surgery.
Stan: But many of the southern drivers are retirees from the north.
Bruce: One had a difficult experience with a specialist being too busy to discuss KD and the possible problems ahead of time.
TedA: 30 years in CA and most winters oing to Tahoe so I got lots of experience and NO accidents!
Bruce: The other had an excellent doctor who performed research (KDA website) ahead of time and discussed what he planned on doing prior to the surgery.
Stan: That can be an issue Bruce. I insisted on a doctor that was receptive to my unique needs every time.
Bruce: I remember when I broke my tibia and fibula.  They were going to wheel me into surgery when I called a time out.  I said I wanted to speak with the anesthesiologist first.
Stan: The wife and I made it a point to hand out KDA brochures to anyone that had anything to do wih my care.
TedA: The Veterans Admin doctors that I have seen have looked up KD and have some idea about it then they ask me questions about KD
Bruce: After I spoke with him and gave him some literature off the KDA site, he decided not to put me under.
Bruce: Good call, Stan.  Being proactive is our responsibility.  I lost a brother many years ago because of doctors not knowing how to work with his condition during and after surgery.
loshimo11: TedA... I hear everyone up in Lake Tahoe is having a ball this weekend. Lots of snow!!! Hope it helps the economy up there.
Stan: I've been put under a few times, and locals the other times. It depended on the procedure. I have had no side-effects that I can tell.
Bruce: I have printed several articles and they are in a folder that can easily be taken to the hospital should the need arise.
Stewart: I was thinking of getting some sort of wrist band
Bruce: I carry a medical condition card in my wallet and a more extensive one above the visor in my car.  
Stan: A medical card or wristband is nioce provided the caregiver knows what KD or SBMA is. Most don't.
Stan: nice
Bruce: One of the big items I tell doctors is that I need to be kept warm during and after the surgery.  Another item is that I need to have my upper body elevated afterward.
Stan: I usually have to give the person a fairly detailed explanation of KD, symptoms, etc. and direct them to the KDAS site.
TedA: I wear a Medis Alert bracelet main because I could not pass a sebriety(sp) test and get a DUI.    I need to add surgery info onto my info
Bruce: It seems like all of you are doing the right thing.  It never hurts to be a pain in the butt about potential issues.
Stan: I had/have the same issue with being kept warm. During one stay, I had 3 blankets on me, and they kept rotating a fourth heated blanket - it was summer.
Bruce: Staying warm is something that almost every doctor who knows anything about KD recommends.  
TedA: Medic Alert
Stewart: You Have given me the motivation I need, I'll print something to carry with me today
Bruce: My left hand is giving me more problems this winter.  The left thumb and index finger are weaker than the rest.  When the temperatures drop below 50, I lose the use of those two appendages.  It was a problem last winter, but this winter has me even more frustrated with the loss of use.  I wear gloves indoors sometimes just to keep them functioning.
TedA: KDA has a medical card on the web site
Bruce: Again, the reason for the heads up to the doctors is that most (probably +99%) have never heard of KD and do not know anything about it.
Stan: My one brother broke his leg a few months ago. He was away from home. He had a real experience. I sent his wife a bunch of infor to help out. He's doing fine now. If any of you met him at the conference, you sense he can be quite demanding
Bruce: I made certain my family doctor, neurologist, and sports doctor all have information in my file in their office.
Bruce: Stan, I broke my leg at a mill three thousand miles away from home.  I can understand the situation he was put in.  My trip home was no fun.
Stan: My hands start to cramp when they get cold and the temp is below 50
Bruce: When I write our Christmas cards, I can only get through about ten or so before my writing becomes illegible.
Bruce: BTW, our new KDA website is probably 90% complete.  It has been a lot of work developing it, but we have a good person who is knowledgablke and led us field labor through the process.  We hope to have it up and running in the next few months.
TedA: I type all that I can on the computer because my writing is so bad
Bruce: Yup, TedA, me too.
loshimo11: My chicken scratch (writing) is barely legible these days. Only chickens can read it.
TedA: Bruce, Any update on the Tissue Donation Program
Bruce: This last week has been tougher on me for some reason.  I have had several days where I am very weak.  I also have deep muscle aches in the quads.  I keep on saying ""this too will pass.""
Bruce: TedA, what in particular are you referring to?
TedA: I was told that the hold up was with the storage of the tissue and KDA was ready to start the program
Bruce: TedA, no, we are using the University of Michigan's Brain Bank for storage and have been for several years.  The updated guide has been published for about a year.  We are, however, working with a potential company that could offer a discount for the pathologist services.  We will be discussing that at our Board meeing Tuesday, in fact.
Bruce: Dr. Andrw Lieberman has been wonderful in offering his services to promote the collection and storage of tissue for KD research.  
TedA: I filed out the form and sent them in and was told it was on HOLD till it got worked out with U of Michigan
Bruce: TedA, Was that Terry that said that?
TedA: yes
Bruce: I'll check with Terry.  We have no issues with the storage.  Our issue has been the last two did not plan ahead.  They called after the potential donor pass on and asked what to do.  This just not work.  Preplanning is necessary to make it a smooth collection.  Storage has never been an issue.
TedA: Signed forms sent in July 2010
Bruce: TedA, I will check with Terry, because I am the keeper of the forms and I have not seen yours.  Sorry for the confusion.  Please, pre-plan.
poohsdaddy: Good Morning guys.... Had a problem logging in today. Started at 9:15.... and just into it. Everyone ok ?
TedA: Thank you Bruce
Bruce: No, TedA, thank you.  My brother's tissue has been used by several research labs across the country.
poohsdaddy: Bruce, any news on guests for 2011 ?
Stan: Hi Jeff. Don't know about anyone else, but I'm fine. Well at least as fine as I can be.
Bruce: Morning, Poohsdaddy, we were discussing ""being your own health advocate"" and educating your doctors and surgeons about KD.
Stan: Yeah, bop em with a stick : )
Bruce: Not yet, but it is early and the holidays.  Most just were at the conference and it is probably hard for them to consider anything new to talk about a month or two afterward.
poohsdaddy: I also find the need to explain KD to health care providers.
Bruce: We had a good discussion about this and almost everyone on today has been through the ""educate the doctors"" program.
Stan: Just what we were discussing Jeff.. Having a med card, bracelet or handing out the KD pamphlet
Bruce: There is a wallet card form and medical condition (long form) on the KDA website.  I use them both.
poohsdaddy: Ready for the holidays ?
Bruce: As ready as I will be.  How about you?
Bruce: Does everyone on today attend a MDA clinic?
Stan: Well I got my lights, tree and other decorations up. Cards have been mailed. Bought a replacement vehicle.
TerryW: [b]Sorry I am late,  Flood patrol
Bruce: Morning Terry.  Are you staying dry and above water.
TerryW: [b]Not real.y,  no flooding , Yet
poohsdaddy: Done shopping, sent out cards and gifts.... Just need to get some groceries.
Stan: Nope. too far to drive there.
Stan: Hi Terry. Got the Ark ready?
Bruce: I have found the clinics (I go once a year) helpful for a couple of reasons.
TerryW: [b]Just went down to check on my trench in front of the horse stables to route the water around them.  It's holding & working
poohsdaddy: Took 3 days to write out all the cards (Big family); and only did a few at a time too.
TedA: Yes I attend the one in San Francisco for 6 years and now the on in Richmond, VA
Bruce: 1.  I need my neurologist to keep current so if I need any forms filled out he can do it for me.  2.  The MDA representative knows me and always offers to help with loaner items and reimbursements for costs of maintenanc and repairs.
loshimo11: I've also been seeing Dr. Miller at the clinic in San Francisco. He's great!!! Been doing that since 1984.
Bruce: Morning Ron
TerryW: [b]Hi Ron
Ron: erry Xmas Guys.
Bruce: Ron, I have no idea where N/A, N/A is in the U.S.:p
Ron: How is this cold weather treating you.
Bruce: Not well, Ron.  I see you guys are finally getting the artic blast also.
Ron: Too cold for me--not even wqinter yet.
Ron: Fingers not working so good.
TerryW: [b]when does winter start?
Bruce: Ron, I miss the Amish country.  It was always a great place for us to drive and shop.
Ron: 21 Dec.
Bruce: Three more days.
TerryW: [b]I say if it's cold , it's winter :)
Ron: lal
Bruce: For you late bloomers, we have had a good discussion on patient advocacy this morning.
poohsdaddy: Don't know if I'll be around for chats or Facebook much longer.  Our cable company raised their rates again.... with less options included after the new year.
TerryW: [b]:(
Bruce: Poohsdaddy, the price continues to go up here also and the service goes down.  GO figure!
TerryW: [b]It's the new american way
TedA: Terry I rmember you asking about ""unknown cuts"" and if anyone else had them.    What were the details about these?
Bruce: Where I live we only have one service provider and that is a monopoly.
Stan: No different here with the cable companies.
TerryW: [b]Same here bruce
Bruce: Terry, I sent you an email earlier.  Mike is doing well and had an excellent doctor.
Ron: The cold has been taking its toll on my legs. Spending alot of time indoors.
poohsdaddy: More and more of our friends are switching to other carriers.... like dish or Direct TV.  They're all getting pricey.
TerryW: [b]Yes, I read that.  that is good to hear.
Bruce: Ron, I was just complaining about that myself.  It is frustrating.
Ron: Its all part of KD.
Bruce: What really gets me about my internet provider is that they cut my speed in half and still charge the same.  There is something wrong about that.
poohsdaddy: I get confused by only seeing parts of the conversations.  Is it me, or, are there a lot of private discussions ?
TerryW: [b]Bruce,  they did that on purpose
Bruce: Of course, I live in the country.
TerryW: [b]?
Bruce: Too many users in the pipeline and I am near the end of the pipe.
TerryW: [b]Cable?
Bruce: No, telephone company ... only for this county and the only one available.
TerryW: [b]hmmmmm
Stan: Everyone is doing it to save costs or make more money. Cereal is in a smaller box and costs more. A pound is not a pound any more. Everything is in oz. or gms to confuse people.
TerryW: [b]Pooh,  no private that I see
Bruce: It makes it tough to work on the new KDA website.  I wait and wait and wait and can finally add something.  Then I wait and wait and wait while it updates the site.  Frustrating.
Bruce: Poohsdaddy, I see a lot of conversation going on.
poohsdaddy: Happy Holidays to all !!  Hope to be here again next time..... Thanks for sharing today ! Bye for now............
Bruce: Merry Christmas!
Ron: Bye.
Stan: Bye poohsdaddy
TerryW: [b]Bruce if you have DSL and are paying for a certain speed it is the providers responsibility to provide that speed
Bruce: Ron, I was just talking recently with my wife about the Farmer's Market in Lancaster and how much we miss it (the food was great and product so fresh).
Ron: Lancaster is getting really commercial.
Ron: Exploiting the Amish.
Bruce: Not here Terry.  They say in the advertisements that it is the estimated optimal speed, and depending upon your location will determine what your actual speed is.
TerryW: [b]that stinks
Bruce: YUP!
TedA: Happy Holidays to everyone!
Bruce: That is the problem in living in God's country.
Bruce: TedA, Merry Christmas.
Ron: You better believe it.
Bruce: Ron, do you have snow yet?
TerryW: [b]Sorry guys I have to go,  lots to do today.  everyone take care
Ron: Flurries.
Stan: Bye TedA. If you are in God's contry Bruce, where are the rest of us?
Bruce: Luis, I do miss San Francisco.  I wish I was still able to travel because that is one of my favorite places to visit.
Bruce: Stan, we all live in God's country.
Ron: Bye for now. Stay healthy. Happy holidays.
Stewart: Have a Very Merry Xmas
Stan: Ok, bye everyone. Have a safe, healthy and Happy Holiday.
Bruce: I really appreciate everyone joining me this morning.  I hope you have a safe, healthy and happy holiday season and an even better 2011.
Bruce: and we are down to the three amigoes
Bruce: Paul, where do you live?
paul Sramek: Dallas,TX
Bruce: Thanks, hot summers is what I remember.
Bruce: I gather you are a Cowboys fan.
paul Sramek: & the cold now
Bruce: But, some of the coldest weather I remember is in the Panhandle.  They have high winds and cold cold cold weather.
paul Sramek: No not realy when Jerry Jones .
Bruce: I use to go to Amarillo a couple of times a year and one trip was always in January or February.  It was miserble out there.
Bruce: Well, guys.  I appreciate you being on today.  I need to take my dog for a walk.  Take care and stay healthy.  Merry Christmas!
paul Sramek: Bye