Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  10-02-2010

Topic:  Open Forum

Host: Ed Meyertholen


Stan: Hello? Anybody here? I guess I'm early.
Stan: Hmmm. Maybe I'm late. Maybe nobody will show up.
Stan: Do you suppose this could be the wrong day? Naw.
carofer: yo, stan
Stan: Hi.
Stan: I was beginning to wonder if I was going to have to do a 1 hour monologue.
Stan: Hi Luis
loshimo11: Good morning Stan and carofer. Where's everyone else?
loshimo11: Oh. Here they come.
TedA: Good morning from Richmond, VA
carofer: hello, waiting for late risers
Stan: Good morning, TedA
carofer: from felton, ca, i am allan
loshimo11: Hey carofer... Where abouts in California is felton?
ssjc: Good morning this is Stewart from Torrance Ca
carofer: just outside of santa cruz in the mountains, 60 miles south f san francisco
Stan: Don't know where everyone else is Luis. I was getting ready to do 1 hour of schtick just to occupy time .
Ed M: Good morning everyone!
Stan: Morning.
loshimo11: Stan... you're a funny guy.
loshimo11: Good morning Ed M!!!
Ed M: How are y'all doing?
carofer: good, ed
TedA: Doing great. How about you Ed?
Stan: Ok. Went to see two of my doctors this week and they say I'm fine, but what do they know.
Ed M: The weather has finally got cool here in Austin, so I am doing great!
loshimo11: Doing great, it's good to be with friends. It's actually good to be anywhere.
poohsdaddy: Good Morning guys.
loshimo11: Good morning poohsdaddy.
Ed M: Are any of you going to the conference next month?
Stan: No
carofer: i am going to sign up today for conf
poohsdaddy: A new 1st for me today.... I actually walked from our kitchen to the bedroom without my walker. Had not done that in nearly a year since I broke my leg twice.
Ed M: How did you break your leg/
loshimo11: Ed... I'm going.
Stan: That calls for a celebration Pooh. So what bar do wee all meet at?
poohsdaddy: I'd like to attend, but too far for me and no $$ to spare. Car had to get fixed yesterday.
TedA: Great news poohsdaddy
carofer: way 2 go, poohsdaddyy
ssjc: Yes, I'll be there. signed up booked the room etc (Stewart)
carofer: stewart, i am passing by torrance -- want 2 carpool?
poohsdaddy: Ed, I broke it Oct. 5th by falling down the steps at church (short handrail) and then again Jan. 15th at home falling in our kitchen.
Ed M: I have always thought that we are very lucky that the KDA has such a good relationship with those who do the research on KD - it is good not only that we get to meet them, but that they get to meet us.
TedA: Ed, I agree with that!
terryw: Helle
terryw: Hello
Ed M: poohsdaddy - I am always scared about falling, I find that I tend to trip a lot as I do not lift my legs high enough.
loshimo11: Hello Terry.
Ed M: Hello, Terry
TedA: Happy Birthday Terry!!
Stan: Hey Terry. Happy celebration of your Birthday!.
poohsdaddy: I agree... the doctors and researchers at NIH were great with the clinical trial for dutasteride.
terryw: Thank you
carofer: i am in physical therapy to learn how NOT to fall
carofer: did the article on the trial ever get published?
Ed M: Yes - if you give me a minute, I can post a link
poohsdaddy: Happy Birthday Terry ... Sorry, I did not get a reminder for you on Facebook.
loshimo11: Terry... Didn't know it was your BD!!! Have a happy one!!!
terryw: thank you
poohsdaddy: Are all of us there yet ?
terryw: Has anyone else had issues with this? lately I have been cutting orscraping myself on thingsand I don't feel it?
terryw: then I see theblood and relize what has happened
Stan: I've had it happen a few times- Left arm
TedA: No, I have not
ssjc: Thanks (carofer) Allen for the offer, my family (sister) is driving me. I'm looking forward to meeting you. this is all quite new to me.
poohsdaddy: Terry, that's not good. Have you told your doctor about it ?
terryw: it must be related to KD and the nerves
terryw: no, this is new
Ed M: terryw - all the time, my arms and legs are full of scratches that I never felt
loshimo11: Terry... How often is this happening? Are you experiencing any numbness or tingling?
terryw: no numbness that I can tell, I still feel hot frying pans & such and water
Ed M: I assume my failure to feel it is due to loss of sensory nerve cells.
terryw: it is not on he hands, only on the legs & arms and torso
Ed M: I do have numbness on the soles of my feet, the entire surface is nubb.
Ed M: that is numb
terryw: not feet either, they are normal
loshimo11: Terry... Have you had your sugar level tested lately? Loss of feeling in the limbs is one of the many symptoms of diabetes.
TedA: Terry, what is Normal!?
terryw: No Luis, I have not.
loshimo11: Terry... I believe it should be somewhere around 100.
terryw: Ted, I can feel when my cat bites or claws my hands & feet
loshimo11: terryw... Sorry, responded to the wrong question...
terryw: no problem
Ed M: Terry, how are the plans for the conference going?
terryw: The plans are done, susanne has it all wrapped up
terryw: hi don
terryw: we have a good group of Docs & researchers, about 15-20
FL-DON: Hi all from sunny fl
carofer: will the docs also be at the dinners?
poohsdaddy: Back to my earlier question... Are we all on Facebook ? I have Terry, Ed, Ted and Stan so far as I can remember.
terryw: yes, most ofthem will
Ed M: Yes, meeting the researchers is one of the things that I look forward to.
TedA: Terry, thank Susanne for all her work on the conference!
terryw: I will
Stan: I'm still on FBook for now until they piss me off again by making some ridiculous change..
carofer: is there a facebook group 4 kda?
poohsdaddy: Yes.... many thanks to Suzanne for her hard work in getting it put together.
carofer: i'm gunna sign up, even tho i don't like fb
loshimo11: Hey... Is anyone a bit more familiar with the recent MDA article which states that Dr. J. Paul Taylor has been able to identify and perhaps block the overactive AR protein that causes KD?
terryw: carofer Yes do a search in facebook for the Kennedy's Disease Associaion
ssjc: Good after this I'll search for the KDA facebook page.
poohsdaddy: carofer... Please let me know when you sign up for Facebook. It's a good way to keep in touch between ths chats here.
Ed M: What Taylor's lab did was to demonstrate some of the necessary interactions required for cell death.
carofer: is there a link 4 taylors article?
carofer: ok, poohsdaddy
terryw: carofer, on the KDA whats new page and the main page
loshimo11: carofer... you can find it at
Ed M: This will get you to the abstract:
loshimo11: In English, what does it all mean?
poohsdaddy: You can tap into a friends list to add ""mutual friends"" to your friends. I am often surprised with the people I find there. Even found one this week from nearly 40 years ago. It was great.
terryw: hi ron
Ron: i guys. Long time no see.
Ed M: What Taylor did was to mutate (change) specific parts of the AR protein (the protein that causes KD) and determined what sections are required for causing the cell death.
Stan: Hey, Ron.
Ron: Anyone hear from Murf lately?
loshimo11: Ed M... Sounds like an exciting discovery. I'm happy you are able to decipher things for us. I don't read nor understand Medical well.
Ed M: In individuals who DO NOT have KD, the AR must interact with both DNA and other proteins to do what it normally does.
terryw: Ron, Yes, he is on faebook so I see him ther all the time
Ed M: Dr. Taylor's work shows that these same interactions appear to be required for the formation of KD as well.
Ed M: loshimo11, I am in the middle of reading that paper (and another one from Dr. Merry's lab) - so these were my initial thoughts.
carofer: SARMs sound promising -- how do we get biotech firms to work on these?
terryw: Ron, how have you been?
Ed M: One of the problems with trying to cure KD is that it is not known exactly why cells die that cause KD.
Ron: Having a rough patch lately.
terryw: if you need to talk call me or I can call you
loshimo11: Ed M... Sounds exciting when the articles are translated into English. Thank you for doing this.
terryw: I willbe gone most of today but any other time
Ron: Thanks.
Ed M: The research from Dr. Taylor's and Dr. Merry's labs both deal with that. The hope is that once it is clear what is going wrong, they can try to find ways to stop it.
poohsdaddy: You guys can call me too... or, find me on Facebook almost every day.
terryw: ron, e-mail me your phone number, ok
Ed M: It is hard to stop something when it is not completely celar what is going on. - that's why the research by the scientists is so important to us.
Ed M: BTW, I beleive that Dr. Taylor will be the guest on the next chat.
terryw: yes, and at the conference
loshimo11: Yeah!!! I hope he can give us further insights.
terryw: I have to go, busy day. see you all later.
loshimo11: Take care Terry...
Ed M: So long Terry, say hello to Susanne and I will see you in a month!!
carofer: my pt has been exercising my toes to improve balance -- it has helped me
loshimo11: I have trouble with my balance... wasn't aware that toes played a role. My heels seem to be the problem.
carofer: try raising your toes -- mine don't go very far backwards
poohsdaddy: Thanks for being here today guys... Gotta get going too. Our youngest grandson is here today and a handfull for the two of us. See you again in two weeks !
Ed M: So long!
Stan: Take care
loshimo11: Take care poohsdaddy.
carofer: i was walking on my heels -- not good for balance
loshimo11: I think one of my problems with my balance is the fact that I'm putting too much pressure on the outside part of my heels. Over time, it's become a normal thing.
carofer: i had 2 consciously use my toes when walking and rising from a chair -- it feels insecure at first, but it improved my balance
carofer: only practice this when u have something or someone 2 catch u if u slip
Ed M: I think that one of the problems is that the sensory info tells the brain where my foot/leg is is defective - so I find I do not pick up my foot when I walk. I find that I tend to look down at my feet when I walk to avoid tripping.
loshimo11: Well... the wife is up and making breakfast... guess it's time to go!!! Have a good everyone!!! Stay healthy and upright!!!
carofer: ed, absolutely agree -- kinesiologic sense is gone and direct vision is substitute
Ed M: So long, must be nice to have a wife who makes breakfast - I have to make it for mine!
ssjc: Catch you guys in two weeks, Thanks Stewart
Ed M: Thanks for coming, everyone.
carofer: thanks, ed
Stan: Time for me to go. It's lunch time and I haven't done a thing yet. Yak at you all next time.
Stan: Bye all.