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Kennedy's Disease Chat Transcript 10-06-2007
Topic: Open Topic
Host: Ed Meyertholen
TerryW: Hi Mich
TerryW: I thought I was going to be alone here today
MICH: Good Morning Terry... we're suppose to get snow this afternoon
TerryW: we got snow in the mountains last night 8" in Calif
TerryW: we need the snowpack for the water table
TerryW: off to a good start
MICH: It's the fun season for trying to get around in a power chair
TerryW: studded tires LOL
MICH: Yah... to get to the bus near my house I have to go down one of the best sledding hills in town
TerryW: it was 35 degrees here last night
TerryW: that is cold for this time of year
TerryW: wow that must be tough Mich
MICH: Do you know of any dangers for Kd people taking ED medicine?
TerryW: I have not heard of any
JoeK entered the room.
TerryW: Hi Joe
Ed_M entered the room.
TerryW: Hey Ed
Ed_M: Morning everyone
TerryW: Ed is hosting today
MICH: Are you going to LV... I can't afford it again this year... can get car to work very well and one of my power chairs just broke down
JoeK: Goodmorning from North Carolinia
TerryW: I did not know if I would be up but I went to bed at 7PM LOL
MICH: Joe and Ed hows the weather
Ed_M: Still in the 90's here in Texas
TerryW: Yes Mich I will be there,
Ed_M: but it is much hotter for Mack Brown!!
JoeK: Warm and verry verry dry
TerryW: Mich where are you located again?
TerryW: 35 here ed
MICH: I'm in Salt lake where we're about the get the best snow in the world
TerryW: oh ok
Ed_M: I would rather have the 35
Ed_M: I hate heat
MikeG entered the room.
TerryW: Susanne is in New OrLeans with Habitat for Humanity building. She comes home tonight
Ed_M: hey mike
MikeG: Hi Ed
MICH: I would like to skip the 30's and 90's and be back in Oregon
Ed_M: My daughter goes to school in NO
TerryW: I got myself a new cordless power drill that is llight weight and I can still lift "It's a black & decker Firestorm"
Alexandre entered the room.
TerryW: My old Dewalt I cannot lift any more
MikeG: I have the same problem with my 12v DeWalt Terry.
TerryW: It is more powerful than my Dewalt and it has a Lithium Ion battery which is better
MikeG: too heavy to lift over my head
TerryW: the firestorm is great
MICH: Terry...can you stop by and build me a shed for the winter... need to take everything out of the garage for a ramp
TerryW: $99 for the kit
Bruce entered the room.
Bruce: Morning all
TerryW: hi alex & bruce
Ed_M: Morning Bruce
TerryW: and mike
MikeG: Morning Bruce
TerryW: I have been so busy getting ready for next weekends Art trails exibit. I was accepted this year with my photography
TerryW: Have 4 booths to setup
Bruce: Congratulations Terry
MikeG: way to go Terry!!!
MikeG: that's great!
Alexandre: Good morning all from Brazil!
JoeK: Bruce where is Ringgold GA
TerryW: I won 1st place and Best of show in the immtermediate category at the county fair out of about 150 people
Bruce: About 15 minutes south of Chattanooga, TN
MICH: Terry... what kid of pictures do you take? Alexandre... how's the weather in Brazil?
MikeG: Hi Alexandre. How the weather down there?
TerryW: I take all kinds but my Pelican cove shot won the Best of show
TerryW: It is now hanging in a art gallery in town
Alexandre: I am anxious to participate at the conference next November to know you folks
Bruce: Terry, you were going to send me the picture of Pelican Cover
TerryW: Oh yes, I will bruce, sorry
Bruce: Alex, it looks loke we will ahve another good turnout for the conference.
TerryW: I may bring a framed shot for the silent auction,
TerryW: of Pelican cove
MikeG: We'll we glad to meet you too Alexandre
Ed_M: Yes, I was amazed at the great turnout this year
Alexandre: We hve a very nice spring sun here in Curitiba today
TerryW: Yes Alex it would be good to neet you
Bruce: Ed, is there any news on the research front worth talking about?
Ed_M: Not really
Ed_M: There is a general motor neuron review dealing with cell therapy and stem cells
Bruce: Did we receive any additional research grant proposals this last month?
Alexandre: I am very happy because I went to São Paulo yesterday and could get the American Visa to be in Las Vegas by the Confernece
Bruce: Great, Alex, are you coming by yourself or traveling with someone?
Ed_M: There also was a study dealing with effects directly on muscle cells,
Ed_M: I was told there would be another letter of intent, but I did not get one - but the LOI were never send directly to me before
MikeG: Alex, do you know if Fernando Armellin is coming to the conference?
Alexandre: I am going to USA with my son Luís Felipe, he is 27 years old...
TerryW: Bruce, I just sent it
Bruce: Terry, did you see another LOI?
MICH: Ed, is the title BSMA a misnomer... is it less direct atrophy and more that the nerves are no longer sending a message to the muscles?
Ed_M: It was from a researcher from UCLA
Alexandre: I don't know who is Fernando Armellin. He is from Brazil?
Ed_M: MIch, it was always understood that the problem was really with the nerve cells
Ed_M: when a muscle loses its nerve cell, it usually dies
Bruce: Ed, if you have a contact, you might want to get in touch with the researcher and mention we never received it.
TerryW: Frenando has not registered as of yet
Ed_M: thus the musclee attrophy
Ed_M: Bruce, I will
Ed_M: There is now data that suggests that the muscle cells may be directly affected -
Alexandre: I don't know Fernando Armelin. Where is he from?
Bruce: Ed, how would the current research being conducted by Michigan State about muscles being directly affected effect current research?
Butch entered the room.
TerryW: hey Butch
Ed_M: I am not sure - I still think that the main problem is with the nerve cells
Bruce: Morning Ron
Butch: Hi guys. How are you doing?
JoeK has left the room.
Ed_M: so, at this point, it does appear that if we can stop the nerve cell death, we will stop the muscle death
JoeK entered the room.
Ed_M: but, there are always surprises!!
TerryW: Mike did you see I added the Cell phone recycling program to the web site
TerryW: finally got a chance to
MICH: Ed, another dumn question..in ALS versus KD...the problem comes from different parts of the brain... can you expain this? Go Spartans... how is MSU related to current research?
Alexandre: Excuse me friends, but I have to lieve now, I have a compromise for lunch, here is almost noon time...good bye!
TerryW: Bye alex
Alexandre has left the room.
MikeG: I think Fernando is from Brazil. Isn't he Terry? I can't find that series of emails...
Ed_M: Mich - both diseases deal with abnormal proteins but different ones
TerryW: yes I beleve so
Ed_M: The specific area of the brain is apparently due to these different proteins
MikeG: Take care Alex - see you soon.
Ed_M: same thing with Huntington's disease and the other CAG repeat diseases
Bruce: A question I have been wanting to ask the doctors is why muscle cramping stops or slows at some point. It is so severe when we are younger and then is no longer a factor later. Yes we still have aches and pain, but not severe cramping.
TerryW: good ?
Bruce: I was wondering if it was because so many neurons have died.
Ed_M: Bruce, I am not a real doctor //3 but my guess is that once there is significant degeneration, there is not enough left to cramp
Butch has left the room.
Bruce: Yup, just what I thought.
Ed_M: yes, I would htink so
TerryW: I still get severe cramps in my neck jaw area
TerryW: that is about it
Ed_M: I get cramps everywhere
TerryW: when I yawn sometimes
Bruce: But, you are still so young!
Butch entered the room.
TerryW: I feel 80
Ed_M: after a long run, my legs muscles undulate due to little twitches
Bruce: Mine seemed to end in the late 40's or perhaps early 50's. The aches are still there, but not the painful cramping.
MikeG: that's right Bruce. I stopped having bad cramps in my early 50s.
Ed_M: It is really weird to see my leg muscles have the tiny waves
TerryW: mine stopped about 40
Butch: Seems that when the muscles get weaker the cramping stops.
Bruce: Ed, I understand what you are saying. I used to hike in the mountains and that evening and the next day I could watch the muscles going to town in the leg area.
TerryW: does anyone have problems sometimes lifting a glass of water, wrist is so weak
Ed_M: kind of a good news/bad news
Bruce: Terry, there are times where I do not focus on what I am doing and I drop something.
TerryW: comes and goes, my left arm & wrist are stronger than my right, I am right handed
Ed_M: I have always thought I was clumsy
MICH: Terry, I can relate as I use one hand to hold the other arm or leg to do alot of things
Ed_M: I drop things all the time
MikeG: same here...
Ed_M: I also have lost coordination
Butch: Switch to beer instead of water Terry. Then you won't have the lifting problem. LOL!
TerryW: lite beer :)
MikeG: Do you guys still have any of the muscle fasciculations?
TerryW: Tastes great ! Less lifting!
Ed_M: One of the exercises I try is stepping up a step and I tend to lose my balance
Bruce: Yes, Mike
TerryW: Step up a step? whats that?
Ed_M: Mike, all the time - and as I was saying, especially after exercise
TerryW: I need something to push off of
TerryW: or pull me up
MikeG: mine seem to be getting stronger again.
Ed_M: step up a step, and step down and repeat
TerryW: Ed, If I have a rail I could do that
MikeG: How's the running going, Ed?
Bruce: Ed, I built to steps for just such and exercies, but had to eventually quit because of the balance issue.
MICH: I feek great walking around in a pool for a half hour but then later my legs feel like gumby or a wet noddle
Ed_M: pretty well, I am with a running group - Austin has a lot of them - and I have been feeling pretty good
MikeG: Terry, for us, that's stepping up on a 2x4...
TerryW: I don't know how you do it ed
Ed_M: They do them in my group and I feel a bit embarrassed when I lose my balance
Dart! entered the room.
MikeG: have you run with Sean lately?
Bruce: Morning Dart
Ed_M: I cannot run with Sean - he is really fast
TerryW: Sometimes I want to just go to the park and take off on the grass and run but I know I would not make it 2 steps and I would fall so I never try
Butch: Dr. Fischbeck is supposed to see me an NIH. This would be the nine month visit that I would normally have with my general practioner. I am still waiting for his call to go to NIH. I have lost alot of weight.
TerryW: I pnly dream it now
Ed_M: We have our first race in a couple weeks and you will note the difference in times!
Dart!: Good morning All! - Sorry for being late, but forrgott that I had a wipe-out computer crash, so nothing worked.
TerryW: Ed, we are just glad that you can still do it
Bruce: In my early 40's I used to run on the beach along the ocean or gulf. It felt so good and if I fell I didn't get hurt. I miss those days.
Ed_M: As a remininder for y'all, Sean and I are running in a series of races this fall and winter (total of 86 miles in 6 races) and we need sponsors to donate to the KDA
MikeG: We need to publicize your fundraiser again!
TerryW: I need to get that also on the web site. Both Ed & Sean and Mike and Paula's
Ed_M: You can go to our website, www.firstgiving.com/distancechallege and donate there or you can send it directly to the KDA
TerryW: Sorry for the delay guys
Ed_M: We are hoping that everyone can contact friends, family and others to help us out - we feel we are doing the hard part ;-)
Bruce: Terry, have you heard back from Bummer on the new Chat program using Flash? Have they fixed any of our concerns?
TerryW: It does not look promising
Ed_M: so please pass the address to the website around
Bruce: I have to run. I need to get some things done before the big games today. Stay safe and upright out there. Bruce
Bruce has left the room.
MikeG: I sent donation requests out to a bunch of millionaires a few days ago in hopes that I might get a BIG donation - so far nada. I didn't think it would work... just had to try.
TerryW: It was worth the shot
MikeG: I think all of our donors are tapped out for the year.
Ed_M: I sent letters to my doctors, my vet, and other businesses that I deal with - I will see if that works
MikeG: We really appreciate what you are doing Ed. Hope you can hold out for the distance!
Ed_M: IN addition, a local running store has helped me get the word out before and I hope will do so again
Ed_M: MIke, I feel pretty good (I probably should not say it but I went 14 miles this morning and feel pretty good)
Butch: See you guys later. Stay healthy till next we chat. Must go for now. Bye!
Butch has left the room.
Dart!: That is absolutely great, Ed - congratulations!!!!!
TerryW: I want Bionics
MikeG: That's great Ed!
MikeG: me too, Terry.
MICH: 20 years ago when I was in my 40's managed to run around a track once...then a while later no strength to push the peddles of a bike... but little problem walking
MikeG: That suit that she had in Alien.
MikeG: We could do anything in that.
TerryW: we are all at a loss for words
MikeG: Ed, do you think a new trial is forthcoming with ASC-J9?
Ed_M: Mike, I have no idea
MikeG: How long does something like that take to set up?
Ed_M: I do not know if ASC-J9 is already appoved by the fda
Ed_M: if not, I think there is a lot of work to do to get to human testing
MikeG: oh, that would be really good if it is.
JoeK: Must leave now.
JoeK has left the room.
Ed_M: the advantage of the dutasteride study was that is was already approved and was essentially harmless
Ed_M: My understanding was the JSC-A9 has not been approved (but I could be wrong)
Ed_M: These questions should be asked at the meeting!
MikeG: I thought I read somewhere that is was used for cancer treatments but I could be confusing that with something else.
Ed_M: could be - wasn't there soome announcement that they just patented it or was that another chemical?
MikeG: did anyone get on that conference call Tuesday with the Network for good?
MikeG: They had a lot of good info on fundraising.
MikeG: I'll have to get the url for the recording and pass it out.
MICH: Just an idea off the top of my head... but I wonder if a publication or other info on KD could be marketed to KD people to generate money?
Ed_M: Not sure there are enough of us
TerryW: No, Sorry
TerryW: I was away
MikeG: Well, I need to go see about the water problem we now have in the back yard. I had a patio slab poured last week and we finally got our year's allotment for rain - all in 3 or 4 hours last night. I found where the water collects now...
MikeG: Until next chat - stay verticle!
Ed_M: what is this rain you speak of?
MikeG has left the room.
MICH: Ed, have you heard of any connection between KD and PAD, peripheral artery disease?
Ed_M: no, never heard of pad
Ed_M: what is it?
TerryW: I have to go guys
TerryW: until next timeEND CHAT