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. Thanks to them, I have a lighthouse to help find my way."

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Kennedy's Disease Chat Transcript  08-15-2009

Topic:  Open Forum

Host: Murray Williams



UTE: Good Morning Bob, what part of the country are you in?
murf: Hey guys
UTE: Good Morning Murf
murf: hey UTE
murf: What does that stand for?
poohsdaddy: Good Morning
UTE: What does the hour glass mean beside Bob's name?
murf: Morning pooh
murf: he is not hear
murf: probably gone for coffee
poohsdaddy: How's everyone doing today?
UTE: So he's only here in name??
murf: Good ... how u doing?
murf: LOL
murf: Hey Syan
poohsdaddy: Awake and just getting started... very tired for some reason.
murf: Stan
stan: Hi everyone.
murf: Me too ... can't type
UTE: Me too... fell on back of my head the other day and still kind of queezy
poohsdaddy: What was Terry's "Urgent Message" about?? I got into this okay today.
murf: Are U ok?
murf: Did u get a cat scan?
UTE: I'm going yo have a catscan on Monday
poohsdaddy: UTE< I could send you our cat. No one else wants her.
murf: ok u got a head ache?
murf: LOL
UTE: I'm not much at taking care of animals either anymore
murf: Last time I did that was during the study in NIH
poohsdaddy: Whaat's our topic ? or Open Forum ? today.
murf: open ... what do u want to talk about
murf: Hey Ron
Bruce: Morning All
murf: Hey Bruce
poohsdaddy: My cousin, who had surgery last month, is doing fine. The hydrocephalus was not related to his KD.
murf: Pooh ...u got something u want to talk about today?
murf: ok lol
Ron: morning guys.How are you all?
murf: how did he come through recovery
murf: Morning Ron
loshimo11: Good morning everyone. This is Luis Shimomura joining in from an unusual sunny San Francisco morning.
poohsdaddy: I'm open to almost anything. I'll try to keep up with everyone else.
murf: Morning Luis
Bruce: Did anyone view the KDA Forum these last couple of days? Maria Pennuto just had her research paper published on IGF-1. It is interesting and looks promising.
loshimo11: Hey Ron...
murf: Sunny & 84 in Houston
murf: Could you give us a breif on it Bruse?
murf: Bruce
poohsdaddy: He has been going to Physical Therapy and Occupational Therapy since coming home. When I talked to him, he said he was finally starting to feel like himself again.
murf: great news!!
poohsdaddy: Yes please, Bruce...
Bruce: IGF-1 - I don't think I am smart enough to do that. But, what I will say is that in the mouse models (those with KD) it showed thatstrength was better, they lived longer, showed less sumptoms.
murf: Sounds promising
poohsdaddy: Bruce, is there a link for us to look it up?
Bruce: The published papers are way over my head, but we are trying to have Maria join on us a chat so she can explain it better to all of us.
gary_kc: Good morning, all. This is Gary joining from KC. It is a nice sunny day this morining.
murf: our mouse models paid good dividends
stan: I just got back yesterday from a month-and-a half long educational and promotional trip to a local hospital and nursing home and and still tying to get caught up on all my mail.
loshimo11: Morning Gary.
murf: Hey Gary
Bruce: Yes, there is a link.
murf: Hey Dart
gary_kc: Hi fur.
gary_kc: Hi murf.
murf: lol
Dart!: Good morning All!
gary_kc: Hi loshim11.
murf: I am furry
loshimo11: Hi Dart.
UTE: Stan, what city is the hospital in?
murf: I hope Bob is ok
stan: Marshall, Michigan
Bruce: The link to the forum article is:
murf: I'll have to check that out
Bruce: Another ray of hope on the research front In January of 2008, the KDA awarded a $25,000 grant to Maria Pennuto, Ph.D. from the National Institute of Health. Her research into the potential benefits of IGF-1 looked promising at the time. Maria and her colleagues have just published the findings of their research. You can read more about it by following this link: Importantly, augmentation of IGF-1/Akt signaling also improved motor performance, body weight, and muscle and spinal cord pathology, and extended survival in the SBMA mice. "Our study establishes IGF-1/Akt-mediated inactivation of mutant AR as a strategy to counteract disease in living animals and is the first to demonstrate that skeletal muscle is a viable target tissue for therapeutic intervention in SBMA," concludes Dr. Pennuto. This appears to be another step forward and opens doors for additional research and possibly a clinical trial. Even though the KDA is a small organization, often we have provided the 'seed money' to allow promising research to continue until other funding becomes available. For those of us who have met Maria, Isabella, and several other young researchers working to find a treatment for KD, we understand how fortunate all of us are that another generation has picked up the baton and continues to move towards the finish line (finding a treatment or cure).
murf: I need to file for SS this weekend
murf: We are so lucky
murf: for a bunch 500 affected people that all these researchers are working on a cure
murf: where are we today on that number Bruce?
Bruce: I'll have to check and get back to you.
murf: no problem ...just thought u may know off the top of ur head
murf: It's about 500 so we are very very lucky
murf: We need to thank these people every chance we get
Bruce: 517 men with KD and 100 carriers
loshimo11: Bruce... we've never met face to face but I wanted to let you know how appreciative I am for all your efforts in our battle against KD.
Ron: Did anyone hear from Terry?
Bruce: Thanks, we all do what we can.
murf: not lately
loshimo11: Hope he's OK.
Ron: Sent him an e-mail about 2 weeks ago, but no reply.
Bruce: Last weekend I decided to start a blog on "Living with Kennedy's Disease." It contains personal thoughts and adventures of mine. If anyone is interested, the link is:
poohsdaddy: I sent a message to him yesterday. Thanks Bruce, I'll write down the info.
murf: Bruce could u e-mail me that pls?
Bruce: Terry has been very busy around the homestead. With the horses (one being sick) and the dogs/cats as well as general maintenace, he is buried.
murf: I'm in the other room on the laptop
Bruce: It is on the way, Murray
murf: thanks man
murf: I think he is out of the fire areas so far this yr
Bruce: Terry's colt had some time of intestinal or stomach disorder that caused a hole in the side of the horse about the size of a .45 cal. bullet. It was huge and all the way into the abdominal cavity. He was really busy with that I know.
murf: that was very graphic
murf: looked like a gunshot
poohsdaddy: Our computer is very slow... and freezes up lately. Our son's friend is looking into helping us a new one from the "Geek Squad" at Best Buy where he works.
poohsdaddy: Anyone hear from Angela or NIH since last time ?
Bruce: The Roger and Beverly from MN are having trouble getting on the line today. Did anyone else have any problems?
murf: I speak with Angela fairly regular
murf: their talking about another trial before we get too old
murf: lol
Ron: Too late. lol
murf: lol
gary_kc: I took a physical checkup and I was told that my bone mineral density is high risk, -3.3. I am using a wheelchair for 6 years since I could not walk.
murf: I've been scared to check
poohsdaddy: She must be very... but another study sounds great. I'd definitely be willing to participate if they want me again.
murf: I'm not walking at all any more either
murf: get in line .... I'm first
murf: lol
poohsdaddy: Thanks... I'd gladly follow you ... or anyone ... just to be included.
murf: We got your back and we will all go together
poohsdaddy: Sounds good to me.
Ron: Murf--how is TJ doing?
Bruce: I was diagnosed with severe ostioporsis (sp) a couple of years ago after several bad breaks. I am now doing several exercises to try to improve the bone strength as well as eat better foods for bone strength.
Dart!: I am sorry to read of y'all not being as mobile as you would like to be. Better days ahead!!
murf: Very Depressed so I'm taking him to the gun show tomorrow then he'll come back for a swim
Ron: Your a good friend.
gary_kc: Bruce, thanks for your advise. I will have to do exercises.
Ron: Depressed and GUN SHOW ---not a good idea.
poohsdaddy: Bruce, Ditto. That's one reason that I keep going to physical therapy and exercise. I believe that it all helps.
Bruce: Check out my latest "Smart Exercise Guide" (2009 version). The physical therapist gave me some exercises specifically for increasing leg and bone strength. They work!
murf: Pooh I just bought an HP with 2GB CPU & 3GB ram for $500
murf: not at Best Buy
gary_kc: Bruce, thanks. I have the copy.
murf: its what I'm using now
poohsdaddy: Murf, that sounds good... but he can re-cycle and get it FREE.
Bruce: You would not believe the improvement in my ability to walk, stand, etc. plus the improved confidence. I have been on the program for nine months and it works. I am really appreciative of the work the PT did for me.
murf: woo hoo best price u can get
murf: lol
murf: u guys realize its 40m yrs since Woodstock?
murf: just 40 yrs
gary_kc: Bruce, I have a friend who is a PT. I would ask my friend, too.
murf: lol
Bruce: As Murray mentioned earlier, there is a good possibility that a IGF-1 clinical trial could be ready in less than a year. There is some more testing needed, however, before it is approved.
Dart!: That is a great vote of confidence, Bruce! Where is that program to be found?
Bruce: "If you're going to San Francisco, be sure to wear flowers in your hair ..."
murf: lol
murf: we are getting older
Dart!: Thanks a bunch for the directions!
Bruce: I also wrote a little about in my blog (yesterday's and today's posts).
Bruce: Gary, make certain the PT is familiar with KD ... do not harm ... and the effects of over-taxing the muscles.
gary_kc: Bruce, thanks lots for your excellent documents.
Bruce: Hopefully, the writing in my blog is cleaner than what I am typing here today.
murf: my typing is getting really bad
Bruce: Murray has an excellent guest coming up on the mid-September chat.
murf: Diane Merry
murf: She made the move of the KD mice
murf: Movie
Bruce: And, the 2nd chat in November and 1st in December will be hosted by Ed. He is excellent at explaining current research in a way that even I can understand it.
Dart!: We are very blest with interesting guests, and thanks go nto those who arrange for them!!
Bruce: Diane is the lead KD researcher at Thomas Jefferson University.
murf: That movie is in the KD server Bruce
murf: we are not allowed to distribute
Bruce: We hope to publish the KDA Newsletter in the next couple of weeks. There are several good articles in my opinion. We have the excerpts of Dr. Lieberman's chat for those that missed it.
Bruce: Murray, I am not certain. I did not have it.
Ron: See you all. Stay healthy.
gary_kc: murf, can we see the movie in server now?
murf: University u know
Bruce: Take care Ron
murf: yes itr is
murf: I put it in
Bruce: Sorry, I thought you were asking if it was there ...
Dart!: And if you think your typing is bad, comparing to some hanwriting, it will be good!
murf: lol
Dart!: 'hand'
gary_kc: murf, thanks. I will check it later.
stan: Yes, make sure the PT knows what KD is. I just spent a month-and-a half, most of which explaining what KD is, handing out pamphlets. I got a feeding tube because of my trouble swallowing with no helpful info or treatment to improve my swallowing. I will say that all thw Drs. I was involved with were very interested inthe KD site and what I showed them.
poohsdaddy: My handwriting is no where near what it used to be.
loshimo11: My handwriting has deteriorated to the "chicken scratch" mode.
Bruce: Dart, I agree. When I write the address on an envelope, I am amazed it ever arrives where it is supposed to.
murf: ok If u can't find let me know because I know for sure on my back up
loshimo11: I'm even having trouble signing my name. It's a long one...
poohsdaddy: Is that why so many businesses have gone to the instant checking "withdrawal" systems??
murf: online banking .......yes
Bruce: Stan, I am sorry to hear that. There are some excellent swallowing exercises on the web site. I use them every day and they seem to help. They might help you improve your strength in the bulbar area.
Bruce: Are any of you using a C Pap or B pap? The reason I am asking because an associate wrote wondering if it would help him.
stan: Thanks Bruce, but they haven't yet. That is why I opted for the last ditch feeding tube.
poohsdaddy: Time for me to get going... We've got the grandchildren here for the weekend. They really tire me out, but we both enjoy doing it.
Bruce: Stan, have you tried the one where you hold your tongue between your teeth and swallow ten times? That one has really helped me with my choking.
Bruce: Enjoy, Pooh. Thanks for joining us today.
murf: Pooh stay healthy
loshimo11: Take care poohsdaddy.
poohsdaddy: Best to all !! til next time. BYE.
stan: The exercise needs to work faster and show improvement faster than the weight loss. That is the problem.
Bruce: Well, I have to run :} also. My wife is waiting for me. Take care and stay update and healthy.
murf: C ya Take care Bruce
gary_kc: Bye Bruce.
loshimo11: Take care Bruce.
murf: any one got anything on their mind?
murf: they need to get off?
murf: any one still here?
murf: lol
gary_kc: murf, yes I am.
loshimo11: I think we're still here.
Dart!: Yes, Murf and all, we seem to have hit 'backwater' and are going nowhere!
gary_kc: Does anyone know any article of IGF-1 in web-site?
murf: lol
murf: Gary check ours
murf: we have a few links
gary_kc: murf, OK. I will check later.
UTE: Sorry, I'm kind of slow this morning... debating whether I should get the C scan before Monday... pressure in head builds up in my sleep... but there's always tylenol
loshimo11: OK guys... Time for me to head out the door. Stay healthy and vertical.
murf: we really have the best website for this stuff the doctors say
Dart!: Don't forget to save this chat, whoever does, OK?
murf: Yes stay vetical
murf: Auto save now
murf: thats good
Dart!: You guys are soooooooooooo organized!!
stan: Still here. Have a lot of stuff on my mind, Too much to put here I think, too. I will say that I was impressed with the DRs and Nurses I met the last month. None even knew what KD was, yet were all very interested in learning more, especially when I handed them all pamphlets. I need to find a MDA location near me. (<50 miles="" br=""> murf: we're getting better
murf: Stan did u find one?
murf: Most Drs have never heard of this disease cause it's so rare
stan: I feel like I am in the wrong chat group. Same responses, or no responses. No, not yet murf
gary_kc: stan, the following is MDA link. Hope you can find near your area.
murf: Not getting responses from KDA?
murf: or MDA
gary_kc: I got go too. Stay healthy all until the next chat. Bye
murf: ok Gary take care
stan: So far, nothing I did not already know, or have not already seen or found myself. When I ask a question, I'm looking for something new, more.
Dart!: It would seem that we have arrived at the time where we will be chucked out! I have appreciated getting back with Y'All! Be good - and careful!
murf: we all are but you are totally up to date then
stan: Anyway, you all take care.
murf: u 2 Stan c ya
UTE: I would think Stan, that your university towns, Ann Arbor and E Lansing doctors or Mda could give you the best directions?? oop too late
UTE: Murf, Bob, Dart... have a good week
murf: I think he was talking about KD information but the best info so far is on or links are on our website
murf: c ya
UTE: Stan missed the meeting but I think his wife was here, where doctor talked about the research going on at U of M and MSU... catch you next time
murf: ok stay healthy