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Kennedy's Disease Chat Transcript 07-1-2006
Topic: The Biology of KD - Ed Meyertholen
Host: Ed Meyertholen
Murf: How you doing Terry?
TerryW: I am only going to be here a few minutes. I am helping Susanne plant a huge Pumpkin patch
TerryW: I am doing OK
Murf: Good. I'm doing ok.
TerryW: We are planting 25 different type of Pumpkins
Murf: Loosing some weight
TerryW: Good to hear Murf
Murf: Gee, and I though there was just the orange kind
TerryW: Lots of variety
TerryW: Have to do it before it gets real hot today
Murf: So do you sell those to grocery stores?
TerryW: I have been working on the are in the mornings
TerryW: This is the first year we are planting them
Murf: on the what?
TerryW: She bought all the seeds on Ebay
TerryW: the what?
Murf: You said you were working on the "are"
TerryW: We are planting them in the area where we too the above ground pool out
TerryW: The Area
TerryW: I had to run lots of deriplines
TerryW: I hate them
TerryW: hard on hands
Murf: You need a ground level pool
TerryW: all the connectors
TerryW: we are going to get a Sundance Hot tub
Murf: I can't do hot tubs
TerryW: Like we had before we moved
TerryW: I love them
Murf: they sap all my strength
craig_h entered the room.
Murf: I can't get out of them
TerryW: I have to go, I just wanted to tell you hi
Murf: Morning Craig
Murf: Take care
TerryW: C ya later all
TerryW has left the room.
Butch entered the room.
Murf: Whats happening Craig
Butch: Hi guys. How are you all doing?
Murf: Morning Butch....don't tell me ....Ron?
emeyerth entered the room.
craig_h: feeling really good murf, how are you ?
emeyerth: good morning everyone
Murf: Great! morning Ed
Butch: Yep. How was NIH?
emeyerth: Is that for me?
emeyerth: If so, it was great
emeyerth: They were extremely nice and there was almost no pain!!
Murf: Great people there. I fell twice and once last week here when I got back
Butch: You and Murf both.
Murf: I'll be taking it easy for the next 4 days
craig_h: yes, they are wondful at NIH
craig_h: sorry murf
Butch: Murf--did you fall from weakness or did you trip?
craig_h: I wanted to chock the doctor doing the EMG, but at least no needles !
Murf: I'll be doing a chat in a few weeks on hints & tips for traveling to NIH
Murf: Weakness my left knee just buckled
Butch: Great Murf--that will help anyone who has never been there.
Murf: No Neddles on the EMG test !!!!! ya...hooooo
craig_h: did NIH decide on patients with the higher liver enzyme level, as far as participating in trial ?
emeyerth: A lot of eletroshocks, however
Murf: But they still zap you with electricity for 1/2 an hr.
emeyerth: craig, I think they did raise the limits, but I have no details
craig_h: hope they can still get in
Murf: everyone is accepted even the 4 that were turned down earlier
MikeG entered the room.
craig_h: oh cool Murf
emeyerth: fyi, the topic for today's chat, we will be discussing the bilogy behind KD.
Murf: I got that last week from Nick
emeyerth: I am hoping to be able to answer questions about the biology of KD, not research findings. This can include what causese the disease, genetics - anything that you would like to know concerning what is happening to your body in KD.
Gary_KS entered the room.
Butch: I had tendonidis when I went to NIH The EMG test was really painful because of the position I had to keep my arm in while testing.
emeyerth: As a bit of background, I am on the biology faculty at Austin Community College - and I just yesterday completed a sabbatical leave in which I was doing research on KD in the lab of Dr. Diane Merry at Thomas Jefferson Univ.
Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.
Murf: Ed is the Host today and the topic is "the Biology of KD"
emeyerth: good morning
Dart! entered the room.
emeyerth: I have to say that it was very interesting doing research on a disease that I have.
Dart!: Good morning All!
PA-PAUL is back again.
Butch: Ed--I think that it is great that you are working in the lab with Dr Merry. Congrts.
craig_h: does everyone find they have "almost" normal days, and the followed by very very weak days?
emeyerth: I am finished in the lab now - back to Texas
Murf: A real live petre dish walking around the lab LOL
PA-PAUL: not me they are all becomming very weak
Gopher entered the room.
emeyerth: I was a 'guinea pig' in a few lab meetings
Murf: I do all the time Craig but I have to rest first
Murf: I bet Ed
Butch: Did we save the chat?
Gopher: Good Morning from MN
Butch: Rather start the chat.
Murf: Good Morning Gopher
MikeG: I have good days and bad
Murf: I started chatting 20 minutes ago LOL
PA-PAUL: me too but it was with myself at 10 07
MikeG: the bad are usually after too much exercise...
craig_h: in my case, quality of sleep and steady temperatures effect how I feel. If the temperature rises or lowers rapidly, then I'll have a bad day.
Barb entered the room.
Butch: Hey--if we didn't have bad days--we wouldn't know when we were having good days. LOL!!
Murf: I usually save it all becuase sometimes there is some good stuff I don't want to leave out
PA-PAUL: that is a good thought
MikeG: very true
Gopher: are we talking about trials..had trouble getting on
Murf: When we write down Start Chat and End chat the the stuff in the middle is the only stuff that gets posted.
Murf: and we might miss some good stuff
Murf: Morning Barb
Barb: good morning.
Butch: Sorry to hear about your complications on your trip to NIH. Did you miss one of your flights, Murf?
Murf: Hows Dallas this morning?
Barb: Dallas is HOT and getting HOTTER
Bruce entered the room.
craig_h: emeyerth .............. during your time with Dr. Merry, did you learn anything that took you by suprise about KD?
Bruce: Morning, Sorry I am late
emeyerth: Morning, Bruce
Murf: Ya we were pulling up to the gate in Atlanta and I was watching them push back my next flight
Butch: Ed--please share anything about KD which you deem pertinent.
Murf: Houston at 81 and rain in the forcast
Barb: I don't have anything to add. Just trying to learn more about KD.
emeyerth: IN what regard? ?What do you wnat to know (that I may know, of course!!)
Murf: Barb - no problem thats why we do these chats
emeyerth: With regard to research, there are no major breakthhroughs - but we should not expect them.
Murf: Morning Bruce
Butch: Whats new and exciting in the labs? How is testing coming?
Barb: My husband has KD and was mis-diagnosed (ALS) a couple of years ago.
PA-PAUL: I am sorry but I dislike the thought that we should not expect them
Gopher: same song Barb
Bruce: Ed, did you read that Japanese study on KD? One thing I found interesting was that the CAG count appears to have no bearing on the severity or age of onset of symptoms.
Murf: Most of us were. I was lucky
emeyerth: Paul, what I mean is that research is a slow process
Barb: What do people think about the stem cell announcement a few days ago.
MikeG: that's exactly what I was surprised with Bruce
Murf: I saw that too....Ed what do you think
emeyerth: The amount of information on KD has greatly increased in the past few years, yet it is still not clear exactly what is going on that causes the nerve cells to die.
PA-PAUL: Soory Guys but i HAVE TO GO.
Murf: Take care Paul
PA-PAUL has left the room.
emeyerth: I saw the Japanese paper - first, there were not l lot of patients (22 I think) and second, KD symptoms is dependent on other things, such as testosterone
Butch: See you Paul--stay healthy.
emeyerth: bye paul
Bruce: Dr. LaSpada wrote us recently and commented that his team will have a new report published this month. Excerpts of it will also show up in Quest Magazine.
Barb: I hope to read it.
emeyerth: KD is different from the other CAG diseases as it requires the testosterone.
Murf: Ed over 200 in that study I thought
emeyerth: It is this testosterone requirement that protects women
Bruce: Ed, could you explain a little more about the two testosterones? One is bad for KD'rs and the other isn't, I believe.
craig_h: oops, I forgot something .......... see y'all another time
emeyerth: Murf, if could be - the study was a descriptive study -
Gary_KS has left the room.
Butch: Ed--you say it requires the testerone yet too much is not good.
craig_h has left the room.
Murf: So if we don't have testosterone the disease will go away????
emeyerth: bruce, I am not sure I would say one is a bad testosterone,
Murf: Just kidding
Gary_KS entered the room.
Murf: Bad joke
Gary_KS: I was kicked out.
emeyerth: Our bodies produce testosterone - and cells convert this into a more potent form, dihydrotestosterone (dhT)
Bruce: Sorry, when I wrote bad I was referring to its impact on the androgen receptors.
emeyerth: it is possible, not proven, that since dht is more potent
emeyerth: then if we reduce it, the symptoms may not occur as quickly
Dart!: Do you folks think that there is an up-surge in neuropathies? Information was sent through pertaining to the effect of MSG producing nasty side-effects along those lines, and the big chemical companies are pushing that stuff in so that it is in a great percentage of prepared foods, including restaurants, and as people become aware of its threat, they are giving it new names.
Murf: Gary that used to happen to me all the time but we like you here so you can always come back LOL
emeyerth: butch, kd symptoms appear to require testosterone
Gopher: Any research done on diet?
emeyerth: not that I know of, there is no evidence that msg has any effect on kd
emeyerth: kd is genetic and only occurs if you have the bad gene (and testosterone)
Murf: Gopher - Paul will be doing a talk at the conference on losing weight
Gary_KS: Thanks, Murf.
Bruce: I have found it interesting that in the last few years, neurologists are now saying that exercise (in moderation) is good for kd'rs of all ages. That is a major change in assumptions in my opinion.
Barb: How does one know his level of testoserone? Is there a specific test?
emeyerth: barb, yes, a blood test should do it
Barb: I guess we should ask for it the next time we see a Dr.
Gopher: Bruce your info on exercises were great...but in moderation...something most men don't know about
emeyerth: Bruce, there was never any data supporting the contention that exercise is bad
emeyerth: I think that doctors were just being cautious.
Bruce: I agee that there was not data, but several neurologists in the past said that it will destroy the muscles faster.
emeyerth: There are several studies that support that weakness in certain muscular diseases (kd was not studied) is curtailed (a bit) with exercise.
emeyerth: Bruce, I think that was based on cautiousness - you will not be sued if you tell someone not to do it //0
Gary_KS: Gopher, I am trying to lose weight now because I can't stand up from chair level. Hope losing weight may help me.
Murf: We are trying to get a physical therapist from NIH to come to Atlanta and talk about exercise
emeyerth: The effect of exercise is very hard to study well - it seems that one should do what one can
Bruce: It is encouraging that as more researchers and doctors study the disease, that initial hypothosis (sp) concerning the disease are changing.
Murf: Gary It does I can feel when I loose 5 lbs
emeyerth: It is not just this disease -
Gopher: Weight has not been the big problem...foods and how they are swallowed and digested are...although the ten he lost helped back pain
emeyerth: no studies of exercise on kd patients has ever been reported
Murf: Nick was telling me exercise was good but don't over do it. when you feel it you've over done it.
emeyerth: I do have problems with swallowing
emeyerth: murf, exactly
MikeG: same here - 5 lbs makes a difference
Barb: I must go now. Taking family to airport. Wish we were going too.
Gopher: why? exercise does seem to help my husband
Bruce: The throat exercises on the web site and in the exercise guide are quite helpful. I practice them every day and have experienced far fewer problems.
Murf: Take care Barb
emeyerth: gopher, why what?
Gopher: why no research on exercise
Barb has left the room.
emeyerth: There is not much research on kd overall
Dart!: It cannot help but help to be not toteing around extra weight, and anyone interested in losing weight should seriously think about avoiding foods [and a great number of them are laced with that stuff] with MSG.
emeyerth: probably because it is a rare disease
Gopher: TRUE thanks heavens for this group of people!!
Gary_KS: Gopher, I used to go MDA clinic and go to ALS clinic since my mouth became weak. I got some good suggesion from nuetrisit.
Murf: I'm thinking about trying a new diet Medifast
Bruce: I also believe it is difficult to fund a representative study on exercise.
emeyerth: The researchers who do study it are trying to find out the cause
emeyerth: exercise studies will probably not get funded
Murf: Unless we fund it
emeyerth: If one can stop the progression of the disease, then the exercise question is moot
Murf: Ed - this is true
emeyerth: Murf, I would expect that it would be quite expensive to do it right
Murf: Money will be better spent
Murf: Funding a cure or treatment I mean
Gopher: We beleive that exercise has slowed progression for my husband..also a new home with less work
Murf: Not exercise
emeyerth: One of the problems is that the federal monies for research are not as high as they should be so what is studied has to have a very high priority
emeyerth: gopher, I agree - I am very active
Murf: Ed - lucky man - stay active as long as you can
emeyerth: One thing that has helped funding for KD is that it has a genetic defect that is very similar to high profile (research wise) diseases, like Huntingtons's disease
Bruce: I agree that weight is an issue. Maintaining weight when you become more seditary is difficult. That is why exercise and a proper diet is important.
Butch: I would like to see some of the MDA monies coming to the KDA just for research on Kennedy's disese.
emeyerth: Thus research on KD could help find a cure for HD and vice versa
Murf: I think they feel the money is better spent helping thousands of people with other high profile diseases
emeyerth: Bruce, researchers who study kd do submit grants to mda
emeyerth: Huntingtons disease
Dart!: Thank you
Murf: And this is why we love all of those trying to find a cure/treatment for KD!!
emeyerth: HD and KD are just 2 of nine genetic diseases that all have the same type of mutation and all cause nerve cell death
Murf: They can't be in it for the money - only to help a few cripples
Butch: Ed--did you out walk the Drs on the walking test at NIH?
Gopher: Do any of you see a speech pathologist...we think my husband saw one for base Line or perhaps she needed the money??
emeyerth: The cell death seems to be caused by a similar cellular mechanism
emeyerth: butch, yes, she said that it was not a good test for me
emeyerth: When I was at NIH for the trial, they sent me to a swallowing therapist
Murf: That was the test that landed me on my butt
emeyerth: I got to see me swallow on the fluoroscope - pretty neat, highly recommended
Butch: Ed--Butch is Ron--Met you at NIH on Tues the 7th.
Bruce: I am still fascinated at the differences in levels of severity, age of onset, symptoms, etc. of KD'rs. I believe that makes it that much more difficult to study the disease.
emeyerth: butch (got to stop hittng return) yes
emeyerth: that and the slow progression
Gopher: Agree!! Bruce
Bruce: My neurologist from Emory always calls me a 'rare bird' when I am introduced to his medical students and interns.
emeyerth: humans are hard to study in general, they seem reluctant to give them spinal cord tissue //0 //4
Butch: ED- I still think it is great that you can donate time and effort to the different labs.
emeyerth: Yes, I was filmed for interns to study to help diagnose
emeyerth: Butch, I was only in one lab and I was paid by my real job
emeyerth: I am not that well off yet //4
Bruce: I have to go. Thanks Ed for participating today. Take care everyone and be safe (and stay upright).
Bruce has left the room.
emeyerth: bye bruce
Gopher: bye Bruce
Murf: Later Bruce
Gopher: Any news on KD symposium...like what hotel?
emeyerth: I have to say that my experience in Dr. Merry's lab was fantastic, it is very reassuring to see how much work they do for us
Murf: The Holiday Inn Atlanta
Butch: Stay healthy Bruce--You are doing a great job for the KDA. Thanks!
Gopher: Is there more than one?
Murf: We will be coming out with all the details shortly
Butch: Murf--thanks to you and John for the great job organizing the conference. THANKS!
Murf: You get used to it after a few yrs - lots still has to be done
Gopher: Thanks once again for all your support and information...will go enjoy the day now
Gopher has left the room.
emeyerth: so long!
Murf: Take Care
Butch: So long Gopher--stay healthy.
Murf: We still need to put the packets together
MikeG: I have to go too. Enjoyed it - thanks Ed. Later...
MikeG has left the room.
Dart!: No doubt there is LOTS of work to keep these programs going smoothly, and too often there may be a feeling that organizers are not appreciated - so thanks LOADS!
Butch: So long Mike.
Butch: Right Dart.
Murf: At least we didn't loose the chat today
Butch: Shhhhh- we are not done yet.
Murf: I have saved twice //4
Dart!: Good thinking, Murf!
Murf: It's a bummer when we loose it
Gary_KS: Excellent, Murf
Butch: At least our minds still work even if our bodies seem to be giving up. LOL!!
Murf: True. Thank GOD for that!!!!
emeyerth: Butch, you are speaking for yourself, right lol
Butch: Murf--you mean bummer as in Bummer chat?
Murf: Ya LOL
Butch: Ed---you are so right.
Gary_KS: Murf, that's a good point. Thanks.
Murf: Its the only thing that keeps me going....that and humor
Murf: When I fell at NIH the did a CAT scan cause I smacked my head ...and actually found something in there
Murf: To my releif
Murf: It's a funny story now - for next week
Butch: Your lucky--I had a blood test and had to stay up all night to study for it. LOL
Murf: LOL - good one Ron!!//2
Dart!: Tears do little more than dilute one's beer, but one can hardly not be distressed over aflictions. But disease is not God's idea, and he says that there are better days ahead, without disease or starvation, or any of those other bad things that this system offers.
Butch: Keep smiling guys--it helps make the day a little bit better.
Murf: Good point Dart - do the best you can with what you have.
Murf: It could always be worse
Murf: We're pritty luck to have friends like ya'll
Butch: Well--it has been great chatting with you guys--hope you all stay healthy till next we chat. So long for now.
emeyerth: Well guys, it has been great but I have to pack and drive up to Boston to see my wife - till the next chat!!
Butch has left the room.
Murf: Thanks ED
Dart!: Isn't that the truth - friends cushion the rough spots in the road.
emeyerth: ... and then I have to drive to Texas
emeyerth has left the room.
Gary_KS: Enjoy long weekend, please. Bye
Gary_KS has left the room.
Murf: Thanks all - these chats are the greatest moral booster
Murf: I'll save and say good bye now - thanks for chatting