Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

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Kennedy's Disease Chat Transcript  10-06-2007

Topic:  Open Topic

Host: Ed Meyertholen


BEGIN CHAT

 

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

TerryW: chains?

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

TerryW: volunteer

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: Thanks

Bruce: Terry, did you see another LOI?

TerryW: another?

TerryW: nope

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

Bruce: Thanks

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

Butch: LOL

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

MikeG: maybe

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

TerryW: only

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)

TerryW: :O

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

MikeG: yep

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!

TerryW: bue

TerryW: bye

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 time

END CHAT