Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

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Kennedy's Disease Chat Transcript  11-21-2009

Topic:  Open Forum

Host: Ed Meyertholen



Trailblazer: Good morning to everyone, it's been a while since I've been on the chat, hope everyone is doing well, TJ.
dbymay: Good morning, this is my first time signing into the chat room. I appreciate all of the support found on the KDA website and am eager to learn more.
loshimo11: Good morning everyone. This is Luis Shimomura joining in from a rather sunny but cold San Francisco.
loshimo11: Where's everyone?
Ed M: Good morning everyone
loshimo11: Good morning Ed.
billeric: Good morning guys from lovely Arizona
gary_kc: Good morning! This is Gary joining from Kansas City. It is cloudy and 45 degree this morning.
billeric: I haven't seen you for a year or two Ed. Are you still able to do the running bit?
Trailblazer: This is TJ from Hockley, Texas and it's 50 degrees and raining since yesterday!
Ed M: Yes, I am still running, however, not quite as fast as I used to be
billeric: I am really surprised. Your K.D. sure has been slower progressing. Most of us can hardly walk.
loshimo11: It seems that over the past few months, there's been more information published in regards future treatments. Anyone excited over that?
Trailblazer: Your right about that!
Trailblazer: What treatments?
Ed M: Yes, I do not understand how - my throat muscles are quite affected.
Trailblazer: Mine as well Ed, and my feet are hurting so bad with Nuropothy
Trailblazer: I'm taking Lyrica for it
Ed M: My feet are always numb - I have very little feeling on the soles of my feet.
billeric: Mine are somewhat Ed. I really have a nasal sound. MDA suggests I look into a device that does a pallet lift.
Trailblazer: Ed, seems like that would make it hard for you to run.
Ed M: I have the nasal sound and I have to concentrate when I eat something that requires a lot of chewing
Trailblazer: Hi, Terry, tj
TerryW: Hello
billeric: Morning Terry
Ed M: It does not appear to affect my running - it does not hurt, just numb.
Ed M: Hello Terry
billeric: Has anyone tried that pallet lift.?
gary_kc: Hi Terry.
TerryW: Does anyone have problems with food getting caught in the tonsil cavities in the back of their mouth
loshimo11: Trailblazer... We were fortunate to have Dr. Pennuto in our last chat who provided info about her IGF-1 updates.
Ed M: I find food gets stuck if it is too large and I have not chewed it adequately.
Trailblazer: Well I have type 2 diabetes and my feet hurt so bad I use Lyrica and a steroid cream on them, I can't even to have a sheet touch them and sleep with them out from under the comforter.
TerryW: I get small particles of food impacted into the pockets in the back of the mouth
Trailblazer: What's the IGF-1
TerryW: hard to get them out
Trailblazer: Hi, Murf, where you been I called 3 times this morning?
murf: hey TJ
Ed M: IGF1 stands for insulin like growth factor 1, it has been found to relieve symptoms of KD in mouse models
Trailblazer: Are they going to a human study with it soon?
Ed M: It is hoped that it may help humans (us!),
dbymay: I'm in sunny Lebanon, Ohio.
Ed M: IGF-1 is a protein released into our blood, the studies indicated that increasing the amount was beneficial.
Trailblazer: So is it coming out to us anytime soon?
Ed M: THere needs to be a clinical trial to determine if it is effective in humans
loshimo11: Thanks for the layman translation Ed. I find it more and more difficult these days to understand all this high level language.
Ed M: The bad news about it (assuming it is effective) is that it would have to be injected, cannot be given orally.
billeric: I agree. Ed's presentations on KD are truly down to earth
Trailblazer: Murray, why don't you come out after the chat and let's go to Carter's Country?
Ed M: I do not know if you all heard, but the results of the clinical trial have been published - to to and then press the link that says open access
Trailblazer: Ed, is it fair to say that it wasn't successful?
Ed M: The page that I linked does have the summary,
Ed M: Dutasteride did not cure us, at least not in two years.
Ron: Good morning guys.
Ed M: This did, however, give a lot of important stats on men with KD, information that is important but was lacking
Trailblazer: Hi ron - tj
billeric: Ya but, I'll bet you didn't have to get up to pee at night!
Trailblazer: Hey Terry, how have you been, still taking care of your horses?
Ed M: The information from the study also will probably be used in the future trials with regard to which tests were the most informative (helpful?) in determining if a drug or treatment is effective.
TerryW: Yes TJ, but getting real hard to do
Trailblazer: So are there any more KD studies upcoming fairly soon?
TerryW: Ed, I went to that link and the page loaded ok, I then clicked Open access and it said :Page not found""
Ed M: We are hoping that NIH is preparing for one, but I have not heard any details at this time.
Ron: hi
Ed M: Terry, it open for me, the direct link is and then download the pdf version.
TerryW: Hi ROn
TerryW: ok, thanks
Ed M: One can also google the title (Clinical features of spinal and bulbar muscular atrophy) and look for the link from the journal Brain
Ed M: It may also be that another paper may be coming (just my guess) that will center on the effect of dutasteride, this paper is more, imo, a description of the measurements that they recorded.
Ron: This group is pretty quiet this morning.
Ron: TJ--hoy have you been? Haven't seen you on chat for quite awahile.
Ed M: I think that everyone is waiting for the Boston
Ed M: college /UNC game !!
Ed M: If only I could type
Ron: HOW
loshimo11: Ed, my problem with most medical articles is that although they're written in English, I can't understand them.
Ed M: I have the same problem!! I think, however, we can understand much of this one.
Ed M: It does not have a lot of the detailed experiments that require biology knowledge - if one was part of the study, I think that most of what they are referring to will seem familiar.
Ron: TJ--are you OK?
loshimo11: OK. I'll give it a shot. Just wish there was a portable Ed M translation device available for sale to handle these type of situations.
billeric: well said losh.
Ron: lol--so right.
Trailblazer: Hey Ron, I had AOL and it would not load for me so I changed to Netzero and now I can.
Ron: Murf--have you seen TJ lately?
Ed M: When there is paper published that deals with some of the molecular mechanisms in the cells, I have a lot of trouble understanding it. There is a lot of jargon in the molecular biology world that gets my head spinning.
Trailblazer: Ron, I have been really depressed for a while and have been staying holed up in my bedroom most of the time. I don't get out much.
Ron: Sorry to hear that. You are such an outgoing guy.
Trailblazer: Thank you Ron, your a heck of a nice fellow.
Ron: Murf--are you OK?
murf: yup
loshimo11: OK gang. Breakfast is waiting for me. Gotta go. Don't overdo the Thanksgiving eating thing. Stay healthy and vertical!!!
murf: i'm ok
Trailblazer: So has there been any discussions about holding a KD conference next year?
Ron: I have been loosing weight lately so I had a feeding tube insereted directly into my stomach. I can still eat by mouth but, this is a supplement that goes directly into the stomach.
billeric: Is that a KD related problem or something other?
Trailblazer: hey, Ron my new email address is This email address is being protected from spambots. You need JavaScript enabled to view it. email me sometime, TJ. That's pretty tuff I bet Ron, is it helping you?
Ed M: There has been discussion about a conference in San Diego in November,2010, but nothing definite.
Ron: KD I think.
Trailblazer: Thanks Ed
billeric: I loved the last San Diego conferance. Would certainly go again.
Trailblazer: Well, I hope everyone has a safe and nice Thanksgiving Holiday, goodbye until next time, TJ
Ed M: Well, the weather in SD should be good!
Ed M: So long, TJ
dbymay: I am fairly new to the KD issue have been diagnosed this year. It answered many questions as to why I feel so much older than I am. The physical therapy advise has been very helpful and it is working. My strength and stablility is improving/
Ron: Well guys--I must go for now--Stay healthy till next we chat.
billeric: Always is, good for us limpy buggers.
Ed M: dbymay, how old are you, if you do not mind my asking?
dbymay: I am 56 and thought that my problems were weight and back issue related and am thankful to know the true reason.
Ed M: Did you know that KD ran in your family or was this a surprise?
dbymay: It was a surprise, however as I have researched and then discussed things with one of my Aunts it has come to light that my maternal grandfather likely had KD. He died in 1969 and had been diagonsed with ALs years earlier and had more than one doctor expresss surprise that he was still alive. I also have a nephew who has been confirmed as KD.
Ed M: This is similar to my story, although I have several cousins who were diagnosed (that is why I was tested) in 1999 - it was a surprise to me!
billeric: Thanks Ed for hosting the chat. Always look forward to hearing from you. Happy Thanksgiving.
Ed M: Apparently I do not produce a big turnout!! Not a lot of us here this morning.
gary_kc: Happy Thanksgiving days! Stay healthy till next chat. Bye
dbymay: I hope you all have a great Thanksgiving. I have much more to be thankful for this year. Knowing the why makes it easier to deal with; I now have a plan to work and so far so good. It may not be pleasent knowing what can be my future, but it could be so much worse.
Ed M: That is so true.
Ed M: Have a great thanksgiving!
dbymay: Until next time, thanks!
Ed M: So long.
Ed M: Gotta go, murf, till next time, Happy Thanksgiving.