Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  06-19-2010

Topic:  Open Forum

Host: Lou Tudor


Bruce: Morning Mike
MikeG: Morning bruce
MikeG: are we it???
Bruce: Not a soul here. Strange
MikeG: wow
Bruce: I believe Lou is the host today.
MikeG: who's hosting?
MikeG: ok
Bruce: This is very weird.
MikeG: YES!
Bruce: Has worked calmed down any?
MikeG: maybe it's because of Father's Day weekend..
MikeG: no - got worse
MikeG: I'm accepting CCs now and everyone has jumped on the opportunity
Bruce: I saw that John talked with Sean. The initial contact info I had for Sean (his resume) was all wrong. I am glad Sean and he talked if for nothing else but to have good info.
Bruce: Morning Luis
MikeG: and I have a huge sale in Lakeland I'm working on.
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a cool summer day in San Francisco.
Bruce: What are CCs?
MikeG: credit cards
Bruce: Oh, sorry
loshimo11: Hey Bruce.
MikeG: too many acronyms
Bruce: Morning Gary
MikeG: :)
Gary_KC: Good morning. This is Gary joining in from Kansas City. It is already 80 degrees with sunny day.
Gary_KC: Hi Bruce
MikeG: same here in FL
Bruce: We are supposed to be 95 today! Too Hot for June!
MikeG: probably get to 95 here today
MikeG: YEP!
MikeG: not even summer yet
MikeG: but considering the winter...
Bruce: We have not had any relief this entire month. I am worried what August will bring if it is already this hot.
Bruce: Mornig Lou
MikeG: hurricanes
MikeG: hi Lou
loshimo11: We always tell our tourists that the coldest day they'll spend will be a summer day in San Francisco.
loutudor: Sorry problems held me up...
MikeG: I heard that!
Bruce: I have been reading the published paper on the NIH clinical trial. It is very similar to the Natural History of SBMA, but still interesting.
Bruce: There were 57 patients vs. 223 in Japan.
Bruce: Luis, I am watching the US Open and it is typical whether on the coast.
Bruce: weather
loutudor: Feels like 102 here already!
MikeG: I've been having probems with QuickBooks 2010 Pro since I installed it. Doesn't want to play nice with Outluck, Acrobat, and IE. This past week has been better - only had to reboot about 5 times!
loutudor: What does everyone want to chaT about todaY?
Bruce: Ref. the NIH paper, if you have read the Natural History, this is another good read since it relates to many people that I know ... including you ... Mike.
Bruce: Five Times! I would not be a happy camper.
loshimo11: Seems like Kennedys's is a popular disease in Japan.
MikeG: I've got the general contractor coming in about 5 minutes and I don't know how long it will take. He wants to inspect what took place on our kitchen remodel yesterday.
loutudor: Only took me 15 min to log in this morning!
Bruce: Yes, Luis, they did get a good deal of participation in those three trials and study.
MikeG: I'll be back when he leaves.
loutudor: Bruce, will there be more published soon?
Bruce: Luis, are you going to the LDA conference this fall?
Bruce: Lou, I do not know. These are both fairly comprehensive studies.
loutudor: The waiting time is frustrating, but that's how this process works...
loshimo11: Bruce, are we talking San Diego?
Bruce: Yes
loutudor: San Diego is beautiful in the fall!
loshimo11: Sorry.. just got kicked off.
loutudor: Good Morning losh...
Bruce: San Diego area is one of my favorites in the world. I love La Jolla.
loutudor: I lived in SD for 20 yrs...
loshimo11: Yes. I'm planning on going. I was going to sign up earlier this year but ran into some unexpected medical issues.
Bruce: I lived there for one year and vistited regularly when I was living in the bigger city north of there.
Bruce: Anything serious, Luis?
loshimo11: lou... my daughter graduated from UCSD back in 2003. She loves the place!!!!
loutudor: The host hotel is where the MDA event is held every Labor Day...handicapped access is good...
Bruce: In the NIH study, I noticed that the average CAG repeat length was the same as Japan's study (46.7), but the high was only 53 (that is my CAG count).
Bruce: Another interesting thing was that the average age of diagnosis was 47 yeas old ... approx. 5½ years after the first signs of muscle weakness.
loshimo11: Fairly serious. I'm almost to the point of telling people about it, but not comfortable yet. It was not Kennedy's related though.
Bruce: Sorry to hear that Luis. Bummer!
loutudor: Bruce, do you know if there is a published study re the CAG and KD progression?
Bruce: Yes, there are the two I mentioned above. The Natural History of SBMA and Clincal Features of SBMA.
loutudor: I understand that the relationship is not confirmed...correct?
Bruce: The Natural History study was extremely interesting. I plan on spending the mid-July chat discussing it. I also wrote about it in my blog a couple of times.
loutudor: We all should remember to check your blogs more frequently...
Bruce: The study confirmed that the higher the number, the earlier the start of the disease.
Bruce: After the disease starts, however, they appear to progress at about the same speed. (i.e., within so many years this happens, then within another so many years this happens, etc.)
Gary_KC: Bruce, thanks for your blog. It has lots of good information.
loutudor: I have seen a wide variance in the progression of KD among our members...
Bruce: Being a 53 helped explain why I was having problems in my early thirties while others do not see symptoms until the 40s, 50s, etc.
Bruce: Gary, I am glad you enjoy it.
loutudor: My son was diagnosed at 32...but was having symptoms in high school...
loshimo11: Was just wondering... Has anyone else seen those coin change machines at the supermarket? They take all US coins and can either give you a certificate for cash at a 1% fee (or thereabouts) or you can donate it to non-profit organization for the whole amount. The last time I used it, I checked it out to see if Kennedy's was there or if there was a way to enter it but couldn't. Ended up using the money for something frivolous(sp) like food.
Bruce: Unfortunately for the blog, I am running out of personal stories to write about (but, that is good because I am remaining upright!).
Bruce: Luis, I was unaware of that. Interesting. Lou, this might be something for your team to check into.
loutudor: Had not seen that losh...thank you!
loutudor: Please do let us know anything that can help raise funds!
loshimo11: I had about $17 and change that wouldn't have minded donating to KD.
loutudor: We'll look into that next week...
loutudor: I also understand that some grocery stores have cannisters for any charity requested...anyone else aware?
Bruce: I have to mention that my exercise program is really going well. It has been over 2½ years and I have only missed one day. I cannot believe how good I feel. I even have some muscle definition in the Guns (even though there is not much there anymore).
loutudor: Bruce, your program is excellent!
loshimo11: That's good to hear Bruce. You are a very commited fellow (and I mean that in a good way). Wish I was a bit more like you.
Bruce: On the even calendar days, I exercise for 60-75 minutes. On the odd days, I exercise for 20 minutes.
Bruce: I am using weights again (light ones).
loutudor: Does the exercise leave you exausted?
Bruce: The best part about it, I feel stronger than I was three years ago.
Bruce: Not the least, Lou. I actually feel refreshed and good afterwards. Of course, I started out with a lot less reps and no weights and have progressed through the months into a full blown program. The endorphins are pumping and I feel great!
loutudor: That's good to hear...take it easy at first and work up to increse strength..
loutudor: Morning Pooh...
Bruce: I now know for certain that my neurologist was right about keeping the motor neurons firing and the muscle memory factor.
loshimo11: Hey pooh..
Bruce: Morning Poohsdaddy. How are things in Wisconsin this morning?
loutudor: It's so easy to get overwight and not exercise...
poohsdaddy: Good Morning all.... was busy and lost track of the time... Sorry, I'm late :-(
Bruce: I am considering signing up for the Mr. KD Universe contest :-).
loutudor: Keep up the plan and keep us informed!
Bruce: I am trying to perfect my Arnold Swartzenager accent first.
loshimo11: Bruce, you'd get my vote!!!
loutudor: HA!
loutudor: Bruce, any special diet you follow??
loshimo11: Hey Bruce, you'd also be able to run for governor again!!!
Bruce: One thing my neurologist discussed with me was that exercise actually reduced the muscle pain. The inhibitors block pain is how he put it. He is right. I have been pretty much pain free recently. And, that is a blessing.
loutudor: You are a model for the rest of us!
poohsdaddy: Sunshine and daylight have arrived... some ""bad"" storms yesterday. MN got it worse with a few tornadoes.
Bruce: Lou, I try to keep my weight down by watching what I eat. If I think I have gained a couple of pounds, I reduce my intake for a few days. I love my salads ... try to have one every day a lunch.
poohsdaddy: Happy Father's Day... to all the dads !!
Bruce: Yes, I saw my home state got knocked on its fanny last night. I haven't talked to any family up there yet this morning, however.
Bruce: Thanks, and the same to you!
loshimo11: Thanks poohsdaddy!!!
loutudor: So sorry to hear of the horrible damage...
Bruce: If I could only magically grow my hair again, I would be set. I tell people that I am not losing my hair, my intelligence is just growing exponentially and to make room for the increased size of the brain the forward is just growing. I have not convinced a lot of people that is true, unfortunately.
Bruce: forehead
loshimo11: Hey, I hope Mike is holding his own against that contractor. Should have told him that we have wheelchairs and canes if needed.
Bruce: LOL
poohsdaddy: It must have been a cold winter.... New babies are due in August, November, December & January. I've also heard that the ""new baby boom"" can be directly related to the economy. Young couples are getting re-acquainted and staying home more than.... other activities.
loutudor: Shaved heads are in...add an earring to go with the toned body!
loshimo11: Bruce, maybe you're getting taller.
Bruce: Luis, I could try that one too. Thanks
Bruce: I was one of ten in our family. My father was one of eleven. He always said it was the cold winters in MN.
loutudor: Any others have KD, Bruce?
Bruce: My mother of course and two brothers (one is still living).
Bruce: My older older older brother is AZ is doing very well for an OLD OLD OLD man.
poohsdaddy: I was in the middle of seven... and my wife was in the middle of eight. Our parents did not have television.... ha ha ha ha :p
loutudor: Does he exercise also?
loutudor: No tv explains it Pooh! :)
Bruce: Yes, he is an avid exerciser. He was doing better than I was for several years and he is thirteen years older than me.
Bruce: Did I mention how old my brother was LOL?
loutudor: That's great to hear!
loutudor: How old is he???
Bruce: What I find interesting is that my mother did not begin to show muscle weakness until her 70s. The doctors just attributed it to old age.
MikeG: I'm back ... finally!
Bruce: Lou, 76 and going to be 77 very soon. He is old!
poohsdaddy: I'm still going to physical therapy twice per week... and it's getting a bit better. Not quite as exhauted lately.
loshimo11: Welcome back Mike.
loutudor: Bruce, do we hear much about carriers haing KD symptoms?
Bruce: Good to hear Poohsdaddy
MikeG: we had some sheetrock on the ceiling that the GC was not too happy about but, for the most part, it's looking good.
Bruce: Yes, Lou. Several have contacted me discussing unexplained hand tremors, muscle weakness in the legs and especially the hands/wrists.
MikeG: sorry that I missed most of the chat and can't scroll back to read it....
Bruce: The makeover will be nice Mike
loutudor: I certainly understand that.
loutudor: Welcome Yakima!
MikeG: yep - we've been waiting 8 years for a new kitchen!
loshimo11: My mom who is 89 years old can outwalk me any day of the week.
Bruce: Morning, Yakima Kid. How were the Walla Wallas this year?
Yakima Kid: Late but finally here
Yakima Kid: trying to catch up
Bruce: Lou, most of the time the only reason the mothers are diagnosed is after their sons are diagnosed.
loutudor: Does the blood test differentiate between a carrier and having KD?
Bruce: The only difference is that the female has two ""X"" chromosomes. So one can be normal.
loutudor: Thanks...
Yakima Kid: My recent problem is swollen feet--anybody have that ?
Bruce: A niece for example has one normal CAG count and one in the low 40s.
MikeG: are you taking blood pressure meds?
Yakima Kid: Yes
MikeG: I had swolllen feet with my amlophine
MikeG: amlodapine
MikeG: or whatever...
Bruce: Yakima Kid, that is a problem as our activity level winds down. I hate to preach, but exercise can really help keep the blood flowing and fluids moving through the body verses resting in the lower legs and feet (gravity).
poohsdaddy: i finally get to see my neurologist this week. Was supposed to see him in October, but couldn't get there with a broken leg. (Finally healing... and able to use the walker)
Bruce: Good News
Yakima Kid: I'm taking lisinopril
loshimo11: I had swollen feet for several months but have suddenly gone back to normal. Don't know what caused it. My wife says it was a transfer from my head.
Bruce: lol
MikeG: you might want to check it out and see if swelling is a side affect
loutudor: Gotta love a wife with a sense of humor!
Bruce: By the way, there is not a formal chat July 2. If anyone wants to chat, they can do so, but it will not be hosted.
Yakima Kid: Have been for years advice from myDr. is to raise my feet.
loshimo11: YK... that's what Mr. Md told me to do.
poohsdaddy: Thanks Bruce.... I was just about to ask what's up for next time.
MikeG: that's what my doc said!
Bruce: Well, I need to get off. I enjoyed chatting today. Take care and stay upright!
MikeG: ... easy to say...
MikeG: hard to do!
loutudor: Thank you Bruce!
Yakima Kid: KD is so obscure that it's hard to find an expert here inYakima
loutudor: You have to go to the nearest big city, Yak...
loshimo11: Well... it's time for me to go. Since we will not be offcially chatting July 2nd, please have a nice and safe 4th. Stay upright at all times if possible.
loutudor: Thanks, Losh!
MikeG: I need to go too. Until next time - be safe everyone!
poohsdaddy: Thanks all. I'll check to see if anyone's here on Saturday, July 3rd.
Yakima Kid: I seem to miss sessions when you have a researher on
loutudor: Happy Fathers Day to all!
loshimo11: Oh yeah... That too!!!
Gary_KC: Bye all.
loutudor: You can always view the older chat sessions online...
Yakima Kid: Yes have a happy great- grandfathers day
loutudor: See you next chat!
loutudor: Take care, Yakima!
aristotelesanato: Good Morning, someone speak spanish???
aristotelesanato: Hola Hola, Hello; Hello ???