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  09-05-2009

Topic: Open Forum

Host: Bruce Gaughran


Bruce: Good Morning
Alexandre: Good Morning Bruce!
Bruce: Where are you located?
Alexandre: Here is Alexandre from Curitiba/ PR Brazil
Bruce: I am in northern Georgia and it is a beautiful morning.
Bruce: Well Welcome! I remember reading your profile now. This is still your winter down there, right?
Alexandre: We are living in a beautiful spring begining!
Alexandre: Have you been at the 2007 KDA Conference in Las Vegas?
Bruce: Where is Cutituba in Brazil?
Bruce: No, I did not attend that conference. Traveling is becoming a little more difficult for me these days.
Bruce: Curitiba .. sorry
Alexandre: Curitiba is the Capital State of Paraná in the southern part of Brazil
Bruce: Thank you.
Bruce: I gather your winters are not cold, just cooler. Is that correct? What kind of temperatures do you have in the winter?
Alexandre: How long have you noticed you suffer KDA?
Bruce: Morning gmontie
Bruce: We have ALexandre from Brazil also on.
Bruce: Where are you located gmontie?
Alexandre: Yes we have good termperature in the winter time, from 0Cº to 15Cº grades
Bruce: I had the symptoms beginning in the early 30s. I was officially diagnosed in the 40's and I am now 62.
Bruce: I have two brothers ... one still living with Kennedy's Disease also.
Alexandre: I am 58 and notice the symptons since my 50
Bruce: It always amazes me when the range of ages that symptoms and intensity of the symptoms begin to show up.
Alexandre: My older brother have the same problem, but my twin brother doesn't suffer it
Bruce: I didn't say that very well ... the range of ages when the symptoms first begin to show up.
Bruce: That is really interesting about your twin. I need to ask one of our neurologiests about that.
Bruce: It is pretty quite this morning. Only you and I so far. I hope we have a few more participants. This is a holiday weekend in the US and perhaps many are traveling or involved in family activities.
Alexandre: It is because we are not identic twins, otherwise we were generated from diferent cells
Bruce: Okay, that makes sense.
Bruce: Since symptoms did show up until the early 50s. I gather you are still pretty mobile.
Bruce: Morning Rick
Alexandre: We are having holidays here in Brazil too, because next monday is the Indepencence Day
Bruce: Great. Happy Holiday!
Bruce: This is the first weekend for America's style of college football. I am pretty excited about it.
Alexandre: I live in a very beautiful small farm, the days here are very pretty
Bruce: What would you consider a small farm in Brazil?
UTE: Good Morning Bruce and Alexander...I'm 63 and had symptoms since about 1992 or 1994??
Bruce: I live in the woods on a ridge above a small lake. It is also beautiful here. It sounds like we enjoy nature.
Alexandre: it is about 30.000 square meters or 3 hectares
Bruce: Morning Stan
Stan: Good morning all. Looks like I'm late
Bruce: Ute, how old are you?
Alexandre: Be welcome to this chat all!
Bruce: I spent a portion of my childhood on the farm. It was a great life.
Bruce: What kind of crops and animals do you raise?
Bruce: Stan, Alexandre is from Brazil.
gary_kc: Good morning. This is Gary joining from KC. It is overcast today.
Bruce: Morning Gary.
Alexandre: it is quality of life, thanks God for that... I am living here since last March
Bruce: Morning Poohsdaddy
gary_kc: Good morning, Bruce.
Stan: Glad to have someone from Brazil join the group. It provides a different and fresh perspective.
Bruce: I am enjoying a nice chat with Alexandre. It is great to chat with others from around the world.
Bruce: Alexandre has a twin brother, but his brother does not have the defective gene. Interesting.
poohsdaddy: Good Morning All... Happy Labor Day Weekend !!
Alexandre: I like to travel and keep contact with people al over the world
Bruce: Thanks and it is Independence Day on Monday in Brazil.
UTE: Stan, everybodys talking about small lakes...your probably close to some?
loutudor: Good Morning
Bruce: Morning Loshimo and Lou
Stan: That is unique. I have three younger brothers and we all have the dfective gene.
loshimo11: Good morning everyone. This is Luis Shimomura joining in from an overcast San Francisco.
poohsdaddy: Sunny and 60-ish today in WI.
Bruce: I always talk about the luck of the draw. Why the defective gene hits some and bypasses others in the family. I have six brothers (four still alive) and two of the six had the bad gene.
Alexandre: Hi Luis Shimomura, my are you?
poohsdaddy: My brothers were all tested... and negative for KD, but cousins do have it.
Bruce: Besides the luck of the draw, another factor is the severity and age of onset. Go figure.
Bruce: Morning Ron
Stan: Yes, I am close to a few small lake chains here is Mid-Michigan. Prairie lake is where my cottage is located. Duck lake is the next closest, then Spectacle lake along with about 4 more within 20 miles of me.
loshimo11: Alexandre... my friend... I'm doing fine. Haven't heard from you in a long time. Hope all is well with you and your project.
Ron: Good day to all--Happy abor day.
Ron: Labor
loshimo11: Hey Ron.
Bruce: Ron, I noticed your temperatures are about the same as ours today. A neighbor just returned from visiting her sister in PA. Then spent several days in Lancaster County. IT brought back fond memories.
Bruce: Does anyone have a topic they would like to discuss today?
Bruce: Also, did everyone receive the KDA newsletter that was sent out yesterday (email)?
Alexandre: Luis, I have moved to a small farm since last March, and I am very busy to develop my project of the SPA here
poohsdaddy: Anyting new with research ... or news from NIH ??
loshimo11: Bruce... I joined in a few minutes late and I'm not sure if anyone mentioned this. I truly enjoy your blog!!!
loutudor: How about the significance of the repeat number
Ron: We have been having great weather.
Bruce: Thanks, Luis. I appreciate your kind words. Over the next month I plan on including posts of young KD researchers. I have intereviewed two so far. It is interesting.
UTE: Newsletter was great!
Bruce: Luis mentioned my blog on "Living with Kennedy's Disease." It can be found at:
poohsdaddy: Got it, but haven't had a chance to read it yet.
Bruce: Thanks UTE, many people worked on it.
Bruce: Lou, what specifically do you mean about the repeat number?
TerryW: Hello
Alexandre: Luis and Bruce, tell me more about this blog, I would like to contact too!
Bruce: Morning Terry
loshimo11: Bruce... I'll be looking forward to reading it. It is so well written... Wish I could communicate as well as you.
Stan: I'll have to look at the blog. I've been away for about two months and am just now getting back into doing things around the house.
loutudor: There seems to be some mis-information of how high the repeat number is to the severity of the disease
loshimo11: Hey Terry...
Bruce: Thanks. I have been finding it fun to write. Did you enjoy my 'embarrassing' post on Inadequate?
TerryW: Hi
Alexandre: Good Mornig Terry, I have changed my adress, I have o send you to register at KDA Association
TerryW: May go looking for a new/used SUN today
TerryW: SUV
Bruce: Lou, I had heard that the higher the number, the more severe the symptoms. Is that not correct?
TerryW: ok alex
loshimo11: Terry... you missed the cash-for-clunker deal.
Bruce: SUN? I was wondering what you meant. SUV ... what kind are you interested in?
Bruce: Morning Robbie
loutudor: I heard from a scientific member that it's not true...??
Alexandre: For which e-mail I have to send it Terry?
Bruce: Robbie, you are in BC, Canada, correct?
Robbie2: Good Morning all! :)
Robbie2: Yes, I am on Vancouver Island, B.C., Canada
loshimo11: Good morning Robbie2
Bruce: Lou, send me more info on that if you have it please.
TerryW: Losh, would not had mattered, the car I want the gas mileage difference was not much
Robbie2: How is everyone this morning?
loutudor: Yes, I will
TerryW: I am thinking the GMC Acadia or the GMC Terrain
Stan: Terry, I thought that having a gas guzzling, smog making SUV was heresy in CA, punishable by being thrown out to sea.
Bruce: :)
TerryW: the New 2010 Terrain SUV has 32 mpg Hwy and 24 city
TerryW: the Acadia gets 24/18
loshimo11: TerryW... Dang!!!!That is good!!!!
Bruce: Will you keep the van?
TerryW: but I need something big enought to get a wheelchair in the back
Robbie2: We had an Acadia once, years ago and it was a good little car. Lasted a looong time :)
TerryW: I have no van, I have a 92 4runner
Bruce: Terry, let me know how that works for your chair.
Bruce: Oh, for some reason I thought you had a van.
TerryW: the acadia seats 7 but the last 2 seats fold down to gice a jumbo area for storage, possibly a hoist lift
poohsdaddy: How about one with Zero down, 0% interesst, etc. ?? There are some good options lately, but we still can't afford a newer vehicle.
Bruce: What kind of lift do you have for your chair?
Stan: But can the Terrain get out of it's own way, and every other vehicle's way, thereby not creating a traffic hazard?
TerryW: I would prefer to buy used
UTE: As far as SUV's go the cargo doors in the older GMC Yukons works for my chair lift (Bruno curbsider)
TerryW: ute thanks I was trying to remember the name of the lift
TerryW: the terrain looks like a smaller version of the acadia
Bruce: I have the Bruno Joey platform lift. It takes a high interior height to accomodate the chair.
Stan: Terry, does the Gov have anything good at his state fire sale?
Ron: I hope we are done floating this chat room.
TerryW: I don't joke about fire here, no offense
TerryW: its terrible
Bruce: Did everyone who read the newsletter find Dr. Fischbeck's article on the current trials and future trials interesting?
TerryW: fire is scary
loutudor: Excellent articles!
Robbie2: We just recently sold a truck b/c my husband was just having too much difficulty getting into it. It was a beauty. A 2002 Ford Lariat diesel with only 90,000 kms on it (about 60,000 miles).
Bruce: The IGF-1 study looks pretty promising right now.
TerryW: fire is scaey especially when you have KD and are home all alone and have to evacuate
loshimo11: Stan... did you mean fire sale like state owned clearance sale?
gary_kc: Bruce, thank you very much for your excellent newsletter. I got lots of new information. :-)
Bruce: Great, Gary. As I mentioned, many people worked on it including Lou (who is in attendance today).
Stan: Yes. What else? I'ts been all over the news.
Robbie2: Living alone must be a big challenge when you have KD. I can't even begin to imagine how difficult some things would be without someone to help you.
loutudor: Great group project...lots of communication!
Alexandre: Visit my site and know more about my project of life
Bruce: I agree Robbie
TerryW: I had a wonderful week here, SUsanne was traveling again. I fell in the garage and smacked my head on the cement floor, My water storage tank ran dry due to a broken sprinkler valve, and My Yamaha Rhino I use to get around the property transmission linkage broke
TerryW: Ill is ok now
Robbie2: oh no Terry :(
TerryW: all
Bruce: As you said, Terry, a good week
Robbie2: how are the fires near your area, Terry?
TerryW: Robbie I don't live alone but Susanne travels sometimes and in the event of a fire she may not be able to get home to me to help evacuate
TerryW: the only fire nbear me is in Yosemite park right now
Robbie2: oic
TerryW: they are getting it under control
Robbie2: thank goodness
Robbie2: the pictures on tv have been horrific
Alexandre: Terry when and where will take place the next KDA Conference?
TerryW: was a control burn that got our opf control, (who does a controlled burn in Aug?) fire season
Bruce: Alexandre, I just looked at your website. very well done!
TerryW: someone lost their job
Alexandre: Bruce this place ist to treat the body, soul and spirit of people!
TerryW: Susanne got to swim in the pool at Hearst Castle on Thursday by special invite
UTE: Terry, that sounds like me at the last meeting... typhoon rain sent water into and over my powerwheelchair battery compartment causing it to rust out and fell in bathroom with head into shower tile... made my head feel stressed for several you have neighbors that can come to your rescue Terry?
Bruce: From the pictures, I can understand that. Very nice.
TerryW: yes UTE,
Alexandre: Thank you!
poohsdaddy: Officially rretired (on disability) as of last month, but still waiting for first pension check.
Bruce: I always joke that as long as I land on my head, I'll be okay
Alexandre: Helping others I help me too!
TerryW: when your head hits concrete it makes the strangest sound
Bruce: Congratulations, Poohsdaddy. Enjoy your new life.
UTE: Bruce.. I'm getting less sure about my head... last time it cost about $700 for a c-scan
Robbie2: Bruce, I have really been enjoying your blog. My husband has started doing the exercise program and he is enjoying it and finding it challenging at the same time. Thanks for putting it up there!
Bruce: The last time that happened to me I was out for several minutes. It was ugly.
loshimo11: Poohsdaddy... Welcome to the club. You're now part of the "good guys".
TerryW: I have not been knocked out yet but have had the head spins
Bruce: Yes, UTE, I had to go to the hospital because I had bleeding on the brain. No fun!
Robbie2: Terry, did you go to the hospital after your fall, to get checked out?
TerryW: wow bruce
Alexandre: Luis look at my site and you will know what I am doing t the moment...
poohsdaddy: Thanks, but I'd still prefer working... at least part-time.
Bruce: Fortunately or unfortunately, since then all my falls have been straight down ... not forward or backwards
TerryW: no robbie, but if I would have had any signs of anything strange I would have
loshimo11: Alexandre... I'll be checking out the site after the chat today. Looking forward to it.
Bruce: Why do so many of our chats gravitate to our falls?:|
Alexandre: OK Luis, send news too!
Robbie2: My husband fell and cracked his head on the cement in our garage a couple of years ago, and ended up with a basal fracture of his skull. He was lucky I was home at the time. It could have been very serious.
TerryW: WHat was that site address again alex
TerryW: robbie, glad you were ther for him
Bruce: Robbie2, that was were I fell also. I was stepping up into the house from the garage and fell backwards.
loutudor: Are the falls related to moving too quickly or a sudden turn?
TerryW: thanks
Bruce: Most of my falls are related to knees giving out.
UTE: I'd say both moving quickly and sudden turns
Robbie2: Bruce, that's exactly the way my husband fell too...stepping up from the garage to the house.
loutudor: Ute, I noticed that with my son
Robbie2: Alex, that looks like a beautiful place you have :)
TerryW: Alex, is this the same location that you showed us at the conference?
Bruce: The quads do not have the strength to hold me up. Fortunately, my latest exercise program has improved my quads substantially. I haven't had an incident in over two years.
Alexandre: Terry in that site you will find my complete adress, please check it and register at KDA Assoc.
loshimo11: The last major fall I had was at my daughter's garage. The place was empty except for several computer cases at the far corner. I tripped and headed straight for metal cases which were a good 15-20 feet away. Seven stiches later, I was fine.
Robbie2: That's great Bruce.
poohsdaddy: Does anyone else exericse ?? on a regular basis ??
Robbie2: ouch Loshimo
Alexandre: No I have changed a little my project, I have found a new peace of land with some infrastructure done
loshimo11: My head must be made out of some type of magnet... always seeking metals...
Stan: Yes. Doesn't do much for me, even with assist from PT.
poohsdaddy: My PT changed her hours recently. So, I go 2-3 times per week.
loutudor: My son goes to a gym...started not being able to do leg lifts at all...then 30#
Bruce: That is great news, Lou.
Alexandre: That time I was plannig a Residence Care for retired people, but now I am doing a kind of a SPA
Robbie2: my husband has recently started doing Bruce's exercises, after recovering from his surgery this summer.
loutudor: Exercise also improves his mood:}
UTE: Speaking of metal seeking... my head liked the downspout by the front door by my house and my mother-in-laws
poohsdaddy: Lou, That sounds great... I've also increased the weights (or resistance) since I first started PT.
Robbie2: exercise is recommended as a prevention for Alzheimer's and dementia too
TerryW: I am going to take off, everyone take care
Bruce: Robbie2, let me know how that goes and if you have any questions. I am amazed at how far I have come since starting the program. I am using weights for all of my exercises now and added several more reps.
loutudor: Bye Terry
Robbie2: have a great day Terry :)
loshimo11: Take care Terry.
poohsdaddy: Thanks Terry.
Robbie2: Thanks Bruce, I will pass that along to my husband, Terry.
Alexandre: God bless you Terry!
Bruce: Does anyone have any big plans for this holiday weekend?
Bruce: We have a birthday tomorrow (niece) and a cookout to attend on Monday.
Robbie2: hmmmm...nothing big planned here. I have to head out to the barn where I board my horse, for a farrier appt this morning. My husband just got himself a new tv, so I think he plans on watching sports this weekend :)
poohsdaddy: Babysitting for our newest grandson. It's hard to believe he's 3 months old already.
Ron: Why is the chat floating so much.
loutudor: Looking forward to some downtime at home...been traveling alot this summer to escape the FL humidity!
Robbie2: oh wow poohsdaddy, congrats! :)
Bruce: Ron, my does not float so I don't know.
Stan: Wife and I just celebrated our 33rd anniversary, youngest daughter turned 22 on Sept. 3.
Bruce: Grandkids are great! They help keep you young.
loutudor: Congrats, Stan!
Bruce: Congrats, Stan
Bruce: Today is my day to watch college football all day
poohsdaddy: I get to feed him, and change diaper when I'm sitting down. No lifting or carrying.
Robbie2: That is wonderful Stan! Congratulations :)
Bruce: I can understand that, Poohsdaddy. Safety first.
UTE: Wow've got me beat by three years
Robbie2: My husband is a huge fan of U.S. college football. I'm sure he'll be watching too, haha.
Alexandre: Its noon time here in Brazil, I am going to lunch, have a nice day all!
Robbie2: His favourite team is Florida State
Bruce: Thanks for joining us
loutudor: Bye Alexandre
Robbie2: Have a great weekend, Alexandre. Nice chatting with you :)
loshimo11: Congratulations Stan... I'm still waiting for mine. Got 1 son and 1 daughter but not expecting anything in the near future.
Robbie2: My husband and I celebrated our 39th anniversary last month.
Stan: Thanks everyone. I almost didn't make it though. Spent the last two months in the hospital and rehab.
Ron: Bye Alexandre. Enjoy the holiday.
loutudor: I'll be working at the local MDA telethon on Mon
Bruce: WOW. That is great, Robbie2. Congrats also
Alexandre: Bye, till next time... thank you!
Robbie2: thank you...amazing how the years have flown by.
loshimo11: Alexandre... Take good care of yourself buddy. I'll try to contact you soon.
Robbie2: and, of course, I was a child-bride, lol.
Bruce: Stan, I am sorry, but I forgot what happened.
poohsdaddy: We had our 28th anniversary in May.
Robbie2: Congratulations poohsdaddy :)
Ron: Loutudor--get them to discuss more about KDA. We are not talked about enough.
Alexandre: My new e-mail adress is This email address is being protected from spambots. You need JavaScript enabled to view it.
loutudor: I will, Ron
loshimo11: Time flies.... 33 years for the mrs and I.
Bruce: I am still amazed how wonderful caregivers are. They put up with so much.
Robbie2: yes, I was wondering yesterday if KD is ever mentioned on the MDA it?
loutudor: Not that I remember
Alexandre: excuse me This email address is being protected from spambots. You need JavaScript enabled to view it. .br ....Bye!
Robbie2: terrific loshimo, congrats :)
Robbie2: bye Alexandre :)
Ron: Talked about SMA and a little about SBMA.
loshimo11: Thanks Robbie2...
Robbie2: oic
Robbie2: Well, I should head out an appt with my farrier at 10. Have a great weekend everyone! I'm glad I dropped by (finally remembered!!) :)
Bruce: Robbie2, didn't your husband just have surgery a couple of months ago? How is he?
Robbie2: take care all!
loutudor: Bye Rob
loshimo11: Take care Robbie2.
Robbie2: he's doing really great, thanks Bruce :)
Robbie2: bye for now
Bruce: Good news
Ron: Stay healthy till next we chat.
poohsdaddy: Bye for now... til next time.
Ron: I must go too. Have a great labor day weekend.
loshimo11: Anyone going to watch the MDA Telethon this weekend?
Ron: Bye.
Bruce: We had great participation this morning. It sure makes hosting a lot easier. THanks
loutudor: Bye Ron
Bruce: Luis, do you know if the Sea Wolf restaurant is still in business? It was on the water on the Oakland side.
UTE: My wife's been doing the telethon for about 6 or 7 years with me at her side... but it didn't work out this year
gary_kc: I got go. Have a great Labor day weekend, all. Bye.
Bruce: The telethon has been a part of our family watching for years and years.
Bruce: Take care Gary
loutudor: Bye Gary
loshimo11: Bruce... Oakland is on the other side of the bay for me. I can check it out and let you know. OK?
Bruce: Not important. When I had the west coast territory. I made it a point of eating there each trip. I loved their crab claws.
loshimo11: That's OK. I'll check it out (for you and myself). Love seafood....
Bruce: Did anyone watch the Boise State - Oregon game and after the game boxing?
Bruce: Luis, it has been clost to thirty years since I ate there regularly. It is probably gone.
loutudor: I watch movies on another husband watches three sports alternately!
UTE: They've sure had alot of replays of the bout on the Sports news...I'm flying out of Portland to early to see the Duck vs Ute game
loshimo11: A quick search on Google says that it's still there on Piedmont/Oakland. I'll look further into it.
Bruce: Thanks ... it brings back a lot of fond memories. One of my salesmen had season tickets to the Raiders and we would go eat and then go to the game.
Bruce: That was when they were a winning team and in all the playoffs.
loshimo11: That was a while ago. I don't follow the Raiders much but I know they haven't had a winning season in years.
Bruce: His seats were three rows up from the 50 yard line on the Oakland bench side. It was fun.
Bruce: Morning Dart
Bruce: We missed you today
loutudor: I lived in San Diego..and Raiders is a dirty word!
UTE: Bruce...great chat...hi Dart...bye all...catch you next time?
Bruce: Where in San Diego?
loutudor: Hi Dart
Bruce: Take care UTE
loutudor: Poway---North SD County
Bruce: I spent a lot of time in La Jolla when I was younger.
loshimo11: OK everyone... time for me to go. Have a nice and safe holiday weekend!!!!
loutudor: Nice expensive place!
Bruce: Take care Luis
loutudor: Bye Luis
Dart!: Well, now, thaat is about as close to completely missing it!! Sorry - I'll just have to wait 'tiul next time! Thanks for missing me!
Bruce: I have to go also. My cat is telling me he is starving (for food and attention). Take care everyone and thanks for joining us.
loutudor: Nice chat, Bruce
Bruce: Thanks Lou