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  06-5-2010

Topic:  Open Forum

Host: Bruce Gaughran


Bruce: Morning Stan
Stan: Good morning Bruce
Bruce: We are early or everyone else is a little slow this morning
Stan: We're early
Bruce: How are things going?
Stan: Busy. A lot going on.
Bruce: I just saw a good video (YouTube) where two brothers gave there other brother a rebuilt golf cart. He has KD and could not get around the lake campground any more. He used to ride bikes so they put a Harley emblem on the front so that he could ride around.
Bruce: Morning Ron
Stan: Morning Ron.
Ron: ood morning guys. How are you?
Bruce: Doing just fine, guy.
Bruce: How are things in beautiful Lancaster County?
Stan: I'm doing good, keeping busy. A lot going on and a lot of projects.
Bruce: Projects keep you off the streets at night
Bruce: Morning Murray
murf: Morning
Bruce: More Ted
Bruce: Morning Mike
Stan: There are no streets here. I'm in the country. Morning Murf
TedA: Good morning from Richmond, VA
Ron: Hi Murf.
MikeG: Morning Bruce
MikeG: hi
murf: Morning gang
Stan: Morning Ted, morning MikeG
Bruce: Murray, I am interested in hearng more about the leg braces.
Bruce: Morning Luis
murf: we might have Billy on line today
Stan: Hi Luis
murf: he is very very happy with them and says they gave him back 15 yrs
loshimo11: Good morning everyone. This is Luis Shimomura joining in from what appears to be a nice day in San Francisco.
Bruce: Morning Don
MikeG: hey Don
Bruce: Morning Gary
loshimo11: Hi Bruce and Stan
Gary_KC: Good morning. This is Gary joining in from Kansas City. It is 75 degrees with overcast this morning. It began hot summer in Mid West.
Ron: Who has the leg braces?
Gary_KC: Hi MIkeG and Bruce.
MikeG: yeah, I'd also like to know about those leg braces...
Stan: Good morning Gary, Don
murf: Billy Noack is the only one that I know of yet
Bruce: Murray, you said he is getting around just fine using them? What do they look like?
murf: I booked an appointment as soon as I heard
Ron: Was his legs giving out on him?
MikeG: Don, I think we missed Spring althgether here... :)
murf: this is a link to the closest looking brace I can find on the internet
murf: He was falling lots like we all do
FL-DON: yup, winter 2 summer
loshimo11: We're still getting rain in parts of the Bay Area here.
FL-DON: gm stan
Bruce: We are hot and humid, but no oil up this way yet ...
Bruce: Morning Terry
murf: Bruce - you won't get any :)
TerryW: Hello
Stan: Hi, Terry
murf: hey Terry
loshimo11: Bruce, are you worried about the oil situation with hurricane season coming up?
Bruce: No, Luis. That was just my joke for the day.
loshimo11: Hi Terry. How are you today?
Bruce: It is a serious situation, however.
MikeG: Murf, that looks more like an AHO (ankle to hip orthotic)
murf: It's in the gulf and will not go out and around Florida to come up the east seaboard
loshimo11: Sorry Bruce... I'm suffering from brain fog this am.
Ron: Hey Murf--How is your stock doing?
murf: MikeG yup but more I look at it more i think it will work
TerryW: [b]Hi Luis, I am not doing well, have not felt good the past few days. Feel real weak for some reason.
Bruce: Morning Poohsdaddy
murf: It will force the shin back ... locking the knee
TerryW: [b]Maybe the drastic weather change
MikeG: yep - let us know how it works out for him.
FL-DON: terry, i go through the weak periods also
TerryW: [b]60's to 90's
murf: Ron what stock?
loshimo11: Sorry to hear that Terry. Hope it's all a temporary thing.
TerryW: [b]thanks
murf: TerryW you getting that SARS from Susanne again?
loshimo11: What is this brace we're talking about?
Ron: Thought with the offshore oil spillage your stock would go way down.
TerryW: [b]nope murf
murf: Billy Noack got some braces that he said gave him back 15yrs. they look like this
FL-DON: brb
murf: Ron I'm retired but HAL, RIG & BP stock is all down
murf: :)
murf: LOL
MikeG: it would be impossible for you to have a knee give way with that brace.
murf: The brace looks like it forces the shin back locking the knee
murf: They say that if you can stand it will help you
loshimo11: I actually got a pair maybe 20 years ago that look very similar to the one in the link. Couldn't drive using them and I never got used to them as I fell several times while using them. I remember they were supposed to help me with my ""drop foot"".
murf: I ve been in this chair now for 2 yrs
Bruce: Morning Orchid Lover
loshimo11: I'm not sure if they perform differently now.
murf: loshimo11 these are carbon fiber and as light as a feather
MikeG: I have some AFOs too but have also fallen using them
Bruce: Murf, have you seen the person who fits you yet?
murf: A lot of development in the last 20 yrs
Bruce: Morning PA-Paul
orchid lover: good morning, Bruce
murf: Yes and I ordered mine, I get them this coming Wednesday
Bruce: Do you raise orchids?
PA-PAUL: Yes morning all
MikeG: when you fall with them you go down on your knees and can really mess the knee caps up!
poohsdaddy: Good Morning ... to all. Has anyone notices the new ""Pepsi Refresh Project"" ?? I had it ""pop-up"" on the side while on Facebook this week. Can we get involved again ??
Bruce: Well, let us know how they work for you.
loshimo11: MikeG... Hey, I remember that happening to me!!
murf: When fall my knees buckle
Bruce: Poohsdaddy, the KDA decided to wait a few months before trying again. We just did not seem to have the support needed on a daily basis to make it happen.
loshimo11: poohsdaddy... I voted for Kennedy's every day for almost a month. Everyday, our position kept going down.
MikeG: it really hurt but I guess it's better than breaking bones...
Stan: It didn't make sense to me either. I had family and my former co-workers voting and it wasn't enough
orchid lover: where do you vote this thing? I will try voting it, too.
poohsdaddy: My whole family said they had trouble getting through the ""sign in"" process, but still voted nearly every day with my wife and I voting for KDA>
murf: I advise anyone that want's a chance to walk again to go see their neurologist or Podiatrist and ask about this brace. Take the link with them.
Stan: Voting is over orhid lover. It was in April and May
Bruce: Yes, we believe that many people initially voted, but over time they just forgot or something else happened. It was disheartening to see us go the other direction. I don't believe we ever got below 84.
orchid lover: i see, thanks for letting me know, Stan.
MikeG: I voted every day (and several times during the first few days - until they fixed that) I think we had a lot voting but other events had more.
Bruce: For anyone that noticed, there was a patent awarded this week for a remedy to KD. I am writing about it tomorrw in my Living with KD blog.
poohsdaddy: Maybe we could raise the ""awareness level"" by keeping something about KD on our Facebook pages... or to the contacts on our e-mail lists.
orchid lover: Can you give me the link to your blog,Bruce?
Bruce: The link to the patent award info is:
orchid lover: Thanks.
PA-PAUL: thanks bruce
Bruce: Do not get excited. In checking with Dr. Fischbeck, it appears to be for the first or second clinical trial in Japan. It was applied for in 2006.
loshimo11: Bruce, your blog is very inspiring as well as interesting. I check it out every morning!!!
Bruce: Thanks Luis
Bruce: Dr. Fischbeck is checking with a couple of the researchers named in the patent to try to get more information. The initial trials were not very positive.
Stan: I'm concerned with the side-effects of the treatment. I don't like side-effects. That is why I quit taking my cholesterol meds.
Bruce: Stan, this drug has many - many - many potential side effects.
MikeG: ... like castration...
Bruce: The biggest one for me is that it is the ""C"" word ... chemical castration.
Stan: I know, that is the problem. I don't need more complications.
MikeG: here here
PA-PAUL: Stan YES almost all Cholestrol med have a side effect of ""muscle weekness"" like i need that
Bruce: When reading most meds, it seems that almost every one has some side effect that I already have.
MikeG: I'm taking Zocor - is that what's making me weaker?
loshimo11: I wish there was some medication with muscle strenghthening(sp) side effects.
Bruce: Orchid Lover, the link is:
orchid lover: Thank you, Bruce
TerryW: I wonder how amny KDers take Depression meds?
TerryW: many
TerryW: I have not so far
Stan: MikeG, check out the information on Zocor, or ask your Pharmacist. It could be.
Bruce: Did anyone see my blog about ""When is a scooter not really a scooter?"" That is a neat device. I can see an application of this wheel in future wheelchairs.
MikeG: me neither... yet
Bruce: Nope
MikeG: ok, Stan - will do. Thanks!
TedA: Thanks fro the info about the side effects of Cholestrol meds. Dr just put me on a couple of months ago
poohsdaddy: Terry, My doctor had me taking Citalopram for a while, but I stopped because I didn't feel that it made any difference..... after about six months.
Stan: I don't take depression meds. It is very difficult for me to become depressed. I do get angry and sarcastic at times.
loshimo11: Bruce, I saw that. Looks like fun but a bit dangerous to me.
Bruce: Stan, I understand those traits.
PA-PAUL: I dont understand.. after years of mis diagnosis a dr said i was severly depressed.. I told himm "" if you dr could help me, maybe I would have nothing to be depressed about...
Bruce: I was impressed with the writer who had never tried it before. Within minutes he was going all over the place with the uni-cylce.
Stan: I saw the article on the UX3 a few months ago. I thought it would only be practical indoors. Very limited battery life. Wouldn't work here.
TerryW: I get very depressed when I take allergy meds
TerryW: Always have
TerryW: Doc's dont know why
poohsdaddy: I think we can all get ""frustrated"" when the things we want to do have become ""used to"" do things ... or just ""can't do"" things.
Bruce: Stan, almost anything they initially test has poor life. It is only after many modifications do they come out with something that is functional. Most of these experimental vehicles or suits never make it past the initial trials.
MikeG: not too much depression here - just get angry like Stan
TerryW: I am angry that I am depressed
TerryW: :)
PA-PAUL: me too
loshimo11: Stan, as Bruce mentioned, if it could somehow be incorporated in a chair format, it may get a larger audience.
MikeG: poohsdaddy - that's it for sure
Bruce: Anger and frustration are what I live with. It is because of what Poohsdaddy just mentioned. Frustrated I cannot do something and then I still am stubborn enough to try and that makes me angry.
TerryW: Exactly
Bruce: But, we seem to put on a good face and go on with life. Nothing we can do about it.
PA-PAUL: and like terry I have been on 6 or 7 different depression meds and NON seemed to do anything...
Bruce: Exercise is my only real release. It really helps me physically and emotionally (endorphins).
loshimo11: PA-PAUL... That's depressing!!!
PA-PAUL: Yes Yes
poohsdaddy: It's the ""simple"" or ""little"" things.... like being able to take my dog out, helping around the house.. and yard, etc. My wife has to do almost everything since I broke my leg twice.
Stan: I'm still trying to catch those endorphins. I saw them in the ""Battle for Endor"", but haven't seen them since.
TerryW: Susanne works and travels and I try to take care of everything here and it has become so tough
Bruce: Poohsdaddy, you sound like me. I have so many broken bones it is amazing. The golf cart made all the difference for me. It allows me to take my dog for walks four times a day.
Bruce: Stan:}
MikeG: I couldn't survive without my golf cart.
loshimo11: Terry... I admire you. I get panicky sometimes just when my wife goes out to work and I'm alone in the house.
poohsdaddy: Stan.... ditto to Bruce's comment. :-)
TerryW: 7 cats, 2 huge dogs, 3 horses, Just giving the cts flea meds has become a half a day job not to mention when and if I catch them I can hardly squeeze the flea med tube LOL
Stan: I have never broken a bone. Guess I'm lucky.
Bruce: Before I forget, mark you calendars for Saturday, July 17, chat. I want to discuss the Natural History of Spinal and Bular Muscular Atrophy (the study and our experiences). It could be interesting (I hope so anyway).
MikeG: loshimo11 - do you have one of those Life Alert buttons?
TerryW: <----never broken a bone either
loshimo11: MikeG. Nope. Just carry my cell phone (even to the bathroom) at all times.
MikeG: it sure makes a difference when you know help is just a button push away!
PA-PAUL: I to have not broke a bone SINCE diagosed with KD
Stan: What? Nobody like my joke? Typical.
Bruce: Stan, didn't you see the happy faces. We thought is was great!
orchid lover: I thought it's funny, Stan.
poohsdaddy: I also keep my cell phone nearby or in my pocket 24-7.
Bruce: Thank God for cell phones.
PA-PAUL: me too it is my link to help
Stan: Sorry, they didn't come through on my screen. Guess it's time for a software upgrade.
Stan: I still have not gotten into the habit of carrying my cell phone. There is nobody around, and I usually don't get any reception here.
TerryW: Same here stan, no cell reception
Bruce: It is the first thing I clip onto my jeans in the morning.
TerryW: I have cordless though
Bruce: Ron, are you getting kicked off?
Ron: Yes___
TerryW: first thing I drop in my jeans is my right leg :)
TedA: I also have my cell near all the time plus a Lock Box outside the house so someone can get a house key using the combiation. Fire Dept has used it in CA
poohsdaddy: I've accidentally called 9 1 1.... and learned how to lock the buttons on mine. The response time here for the ploice to check on me was great both times that happened.
Bruce: Great idea, TedA
loshimo11: Terry... I ended up buying a new cordless 6.0 DECT phone. It's amazing how far the reception goes.
orchid lover: I have a question. I was reading throught the article about IGF-1 had promising effects in mice with ALS. Have you talked with your doc about IGF-1?
TerryW: I have had that Dect 6 for about 2 years now, It reaches about 1000 ft
TerryW: all over the 5 acres +
Bruce: Luis, I have the same technology. It is 500% better than my previous 2.0.
TedA: Also use Bluetooth so I do not have to lift the cell to my ear and hold it there
Stan: TedA, I have a keypad lock on my front door. All fire and police have to do is punch in the code.
Bruce: Orchid Lover, the IGF-1 testing continues at NIH.
loshimo11: I bought a Panasonic model that is usable even when the power goes off.
orchid lover: NIH?
Bruce: IGF-1 appears to work well for mice that have not experienced symptoms. The current testing is to see the effect on mice that already have shown signs of KD.
Bruce: National Institute of Health in Wash DC
orchid lover: I see.
Bruce: I believe IGF-1 shows the most promise right now for KD.
loshimo11: Haven't heard much about the upcoming conference in San Diego later this year. Is it still a go?
Bruce: YES
TerryW: been having problems opening the cars doors, we go to drive someplace and I think they are locked but then Susanne opens her door and looks at me, The door was unlocked but to heavy to open sometimes
Bruce: You should see something coming out shortly.
Stan: Funny you mention IGF-1. My son has to go for some tests about that.
TerryW: have to pull real hard, heavy doors
orchid lover: I was doing a search, and learned that some places sell IGF-1 for body builder. I wonder if one with KD can try to see if it helps
TedA: What is the deadline to register for the conference
Bruce: No ... the dosage is most important and it has to be IGF-1 for muscles.
PA-PAUL: Yes Ofrchid lover that would be interesting
Bruce: There are several IGF-1 drugs out there, but only a few target the muscles.
TerryW: Ted, we should be posting that info soon,
orchid lover: right, if a doctor can monitor the dosage, i wonder if it can be done.
TerryW: Ted, Susanne is still in bed, she is working on all the conference stuff
TedA: Thanks Terry
Bruce: Orchid Lover, like so many things, it might appear to work in mouse models, but the dosage might have to be so large to work for a man that it could cause all kinds of other problems.
poohsdaddy: Mike G, have you talked to Pauline lately ?
Bruce: I know that the older I become, the more desparate I am to see a cure. But, I am also concerned about doing more harm than good.
orchid lover: right, and in order to avoid many side effects, the dosafe has to be low, and then it might not work.
Bruce: Morning Jack
PA-PAUL: then they should be trialing it on elephants toooo
TerryW: I wonder why kept getting kicked out of chat
MikeG: We're going to meet her for lunch next weekend
JACK: Good morning
orchid lover: haha, PA-PAUL, that's funny!
loshimo11: Terry... Say ""hi"" to Susanne from the rest of us.
TerryW: ron
TerryW: ok luis
MikeG: we usually take her out once a month
Bruce: Just ten years ago, for example, they felt that testosterone injections would help. Now we know that that is adding gasoline to a fire.
orchid lover: it's just that when the muscle is slowly weaker, it's hard to sit around and not try things that might or might not work
Bruce: I understand.
poohsdaddy: Mike, Please tell her we're having a family ""re-union"".... and she can call me or family for the details.
TerryW: I am going to buy an Ironman suit :)
MikeG: ok, will do
MikeG: where will it be?
loshimo11: Terry... Order an extra one for me.
Bruce: I still think about tryung HAL. That sure looks interesting.
poohsdaddy: My wife keeps telling me that she'll wrap me in bubble wrap for my own safety..... :-}
loshimo11: Bruce... I think Hal may be ready for the general public soon.
Bruce: That is a good one
PA-PAUL: what is HAL
Bruce: Luis, It is my understanding that it is being used. You cannot buy it and you have to go back to Japan once a year for tweaking.
Bruce: You can only lease the unit.
JACK: I am glad you asked paul i was late and wondering
Bruce: HAL is an exo-skeleton that is robitic in nature. Creates super soldiers ... leap tall building with a single ..
MikeG: how long do the batteries last on HAL?
Bruce: Right now they are up to 2½ hours I believe.
JACK: I would just be happy to walk normal again
Bruce: It takes thirty minutes to recharge.
PA-PAUL: Me I would love to ""stand""
MikeG: it would be bad to run out when you're far away from home... can't put it in 'free-wheel'...
Bruce: No ...
Stan: Yes, put us all in RoboCop suits, gun included.
Bruce: I am certain that soon you will be able to plug it into the cigarrette lighter in your car.
MikeG: :)
Bruce: Well, I have to go guys. I have enjoyed chatting today. Stay upright!
loshimo11: OK guys. Time for me to go. Everyone stay healthy and upright!!!!
poohsdaddy: ;) ;)
PA-PAUL: ditto
PA-PAUL: bye
MikeG: well, guys - I need to go. Take care! Until next time. bye
JACK: Have a great day
orchid lover: Have a great weekend, everyone!!! It's so nice to chat with you all! Please take good care!
TedA: Have a great day
Stan: Ok. bye, Take care.
Gary_KC: It was interesting chat today. Thanks. Bye.
poohsdaddy: Bye... See you again in two weeks.
orchid lover: bye :-)
JACK: Next time i will have to be on time