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Kennedy's Disease Chat Transcript  07-1-2006

Topic:  The Biology of KD - Ed Meyertholen

Host: Ed Meyertholen

Chat Participants:




Murf: Morning

TerryW: Hi

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

TerryW: you?

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

Murf: oh

TerryW: I had to run lots of deriplines

TerryW: Driplines

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

craig_h: morning

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.

PA-PAUL: morning

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.

MikeG: 223

craig_h: oops, I forgot something ..........  see y'all another time

emeyerth: Murf, if could be - the study was a descriptive study -

emeyerth: bruce,

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,

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

Bruce: RIGHT!

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

Dart!: HD?

emeyerth: Huntingtons disease

emeyerth: sorry

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,

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.

Murf: cool

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,

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 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

Gopher: Thanks!!

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

Butch: Good!

Dart!: Good thinking, Murf!

Murf: It's a bummer when we loose it

Murf: LOL

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

Murf: pretty

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!!

Murf: lucky

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