Our Focus Remains on Research, Education and Support
The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.
Will my child be born with this DNA defect?
It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.
Kennedy’s Disease Knows No Boundaries...
It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.
What is Kennedy's Disease?
Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.
| 2002 - June 15, Prescriptions & Alternative Medicine |
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Kennedy's Disease Chat Transcript 06-15-02 Topics: Prescriptions & Alternative Medicine Host: Terry Waite
Chat Participants: terrywbruce mikeg wapita rea peter-s johnm billeric daveg terryw -- {welcome terryw} rea -- {welcome rea} bruce -- {welcome bruce} peter-s -- {welcome peter-s} johnm -- {welcome johnm} billeric -- {welcome billeric} daveg -- {welcome daveg} wapita -- {welcome wapita} terryw -- hello rea rea -- good morning rea -- I sent u an e-mail terryw -- under what name? rea -- Ruth rea -- I feel like a kid in a candy store. this is all so new to me terryw -- OK, Ruth, Welcome, More should join soon bruce -- {welcome bruce} bruce -- Goo Morning, World! bruce -- That is GOOD Morning rea -- hi bruce bruce -- Hello, how are things going today? terryw -- Hi Bruce rea -- well, it is cold and damp here how about you bruce -- Cool, damp - I guess the same. I am in the Philadelphia area. Where are you located? rea -- I am in NY bruce -- I have family in the Phoenix and Tucson area. They say it is very hot there. 110 - ouch! rea -- not far from u Bruce bruce -- I was watching the US Open - what a miserable way to play golf. It weren't for the money, they probably wouldn't be playing this week. terryw -- It's been hot here, I am filling in for Susanne who had to do some work this morning preparing for a week out of town on business in Chicago terryw -- Ruth, how is your husband handling the KD diagnosis? terryw -- Maybe he can join in on the chat someday if he feels like it. rea -- terry rea -- Tommy died rea -- it is 8 months now terryw -- Oh, I am sorry, rea -- he was diagnosed when he was 40 rea -- he did prepare me and himself rea -- but he stayed with me for 17 more years terryw -- I am sorry Ruth. my wife has been communicating with you mostly and I went back to find your e-mails and I misread it. I am truly sorry rea -- that is OK terry rea -- terry rea -- Tommy took no medication terryw -- TY Ruth peter-s -- {welcome peter-s} bruce -- Hello, Peter peter-s -- Hi all this is my first time doing this so I hope it all goes OK I'm from Tasmania Australia and its 12.24 am on Sunday bruce -- Peter - don't you know it is time for bed down there? peter-s -- way past my bed time. I guess you guys are all from USA terryw -- hi Peter, glad you stayed up to join us rea -- hi peter peter-s -- looking forward to the discussion. How does it go And hi to all! This is quite exciting! terryw -- Yes Peter, We wanted to have another chat time for our friends in your part of the world but we needed a volunteer to host the chat but had no one come forward yet. HINT HINT peter-s -- OK Ok I get the hint terryw -- I take ULTRAM for Muscle pain I get terryw -- Has anyone read about Green Tea? peter-s -- Yes I have it often terryw -- I just read a study on Green tea and the possibility of it slowing muscle wasting rea -- Tommy did not like tea. he was stubborn rea -- lol terryw -- It said that green tea has Antioxidant qualities that slows deterioration bruce -- Green Tea appears to be good for almost anything. I drink Bantcha Twig Tea every day (it is the stems of the green tea - no caffeine). terryw -- I have read that you have to drink 7 cups of green tea a day peter-s -- I am taking barley green and Creatine Has anyone else tried that bruce -- What is barley green? I haven't heard of that before. terryw -- I am not sure bruce peter-s -- barely green is cut barley grass that is dried and powdered. It tastes and smells like grass bruce -- LOL Peter - how do you get it down? peter-s -- You hold your breath and gulp! it is supposed to activate your system to enable it to receive the good stuff you are supposed to follow up with johnm -- I don't like to take anything that I have to hold my breath for. peter-s -- Further information Its made in the US and the brand I use is by AIM and it comes from Nampa id (where’s that) bruce -- Peter, do you find these two items helpful? How long have you been taking them? rea -- am I the only female with all u good looking men terryw -- LOL, Thank you Ruth rea -- no bruce -- Ruth, Well, I can't speak for Peter, but Terry is the only good lucking guy that I know of on the chatroom. peter-s -- I’m certainly not the hulking Aussie male. This thing has certainly taken away any chance of that rea -- have u all met in person terryw -- Some have met Ruth. A whole bunch more of us are going to meet this Oct at the Kennedy's Conference in Baltimore johnm -- {welcome johnm} bruce -- Hello, John. Welcome - We have a lovely group this morning. terryw -- Hi John peter-s -- Hi John rea -- terry tell me the date for Oct please terryw -- Ruth its Oct 13-15 on our site there is lost of info www.kennedysdisease.org rea -- tks terry terryw -- It would be good if you could come Ruth rea -- I will do my best would like u all to know me and tommy terryw -- Does anyone here get QUEST magazine from the MDA? rea -- yes I do terryw -- Quest Magazine did a major write up on Kennedy's disease this last issue 4-5 pages terryw -- the only thing that they forgot to mention in the article is us as a support group for Kennedy’s disease. terryw -- From the article in QUEST magazine it looks very promising for a future cure or treatment for KD. At least that’s what the doctors are saying. bruce -- Let's all pray the article is right. Our future generations depend on it. terryw -- Yes johnm -- Terry, it's just too bad that it probably won't come in time for most of us. terryw -- This came from the doctors that will be at our conference in Oct. We will learn more info from them there johnm -- Hi all from rainy Florida this morning. peter-s -- My treatment has changed my life around. I don’t know how or why but my naturapath is working wonders on me terryw -- what is Naturapath? peter-s -- Sorry Terry, my bad spelling, you know someone who does traditional medicine terryw -- Peter, what kind of treatment is your Naturapath doing for you? peter-s -- OK Its a number of things. First I have reflexology and cranial sacral massage. I have a diet rich in Omega 3 fatts (fish and greens ) as well as an antioxidant called microhyrdrin, barley green and Creatine Omega 3 supplements, calcium magnesium tablets and LOTS of carrot and celery juice. I see the lady once a week and went from being the ultimate skeptic to a true believer peter-s -- I’ve just looked at my typing My only excuse is that its late here johnm -- Peter, don't worry about your typing and spelling. We all have the same problem. rea -- can I ask u all something bruce -- Please, Ruth rea -- are u wives helping(if married) and any children(besides adoption) peter-s -- My wife is my tower of strength terryw -- I don’t understand the ? Ruth. Please clarify if possible bruce -- Ruth, my wife is a saint. I don't know what I would do without her. We have two children - one adopted. rea -- u have a child normally rea -- well terry bruce -- In fact, I find it interesting that she would want to put up with me as I go through all of this. It must be love!!! terryw -- No Kids here rea -- I brought Tommy home on a ventilator rea -- I was his nurse johnm -- My wife also really helps me. Sometimes she does things she really doesn't need to. terryw -- Susanne has not been on any kind of birth control for may years, and still no kids rea -- not care giver but nurse(nodegree) rea -- we could not have kids rea -- do to the disease rea -- hate that word disease rea -- I would rather use condition peter-s -- yeah Ruth disease is like you can spread it like the flu or something billeric -- {welcome billeric} terryw -- I have had fertility tests and they say I have quality but not quantity but I guess that does not matter terryw -- it only takes 1 rea -- terry it does not matter rea -- so did Tommy bruce -- Ruth, I lost my brother this winter (another KD'r). His wife and children went through a lot for three months. I emphasize with you. rea -- bruce I had Tommy home for 4 months johnm -- Ruth, how old was Tommy and how long did he have KD? rea -- John rea -- Tommy was diagnosed when he was 40 and he died at age 57 rea -- 8 months ago rea -- listen guys rea -- I don't not what you all to be down terryw -- Hi Bill peter-s -- hi bill rea -- no motility terryw -- I am extremely careful not to be around sick people who have colds rea -- STAY AWAY FROM PEOPLE WHO HAVE COLDS, THE FLU rea -- if u guys get sick with colds or flu it lasts forever terryw -- Yes Ruth, colds can be killers for KD individuals billeric -- Sorry for the lateness folks, had trouble getting on peter-s -- But once you are on you can talk to people who can share. This is great guys bruce -- I don't take any medication or natural supplements. I tried some for a time or two. I use Qigong and Yoga today as my way to cope and stay healthy and happy. Whatever works.... peter-s -- You are right Bruce What works for me may not for other . I'm no expert, just a guy whose been told he had KD johnm -- I only use vitamins and one 300 MG neurontin per day. billeric -- I use one multivitamin , 4 neurontin and 2 400 vit. E a day. johnm -- I take 2000 IU vitamin E, 1000 vitamin C, Vitamin B1 complex, Multivitamin, and 600 MG Caltrate +D bruce -- I also take natural vitamins - E, B complex, C and a multi. I am not certain they do anything - but it don't hurt. johnm -- I guess I don't see much help from the things I take either, terryw -- I have no problem with adoption, it would just have to be a child that is 2-3 years old that can help care for themselves because I feel I could not care for an infant myself while Susanne works terryw -- I am so glad that we have a good turn out today for this chat. It has been slow in here lately. bruce -- I think the host brings out the best in people. You are a natural draw, Terry. peter-s -- Terry to replace Jay leno terryw -- Thank you Bruce. Its all of you that keep me going terryw -- without you all I would be down peter-s -- I know how you feel terry. I had a session of dry drowning last night and went to bed really depressed. terryw -- I hate those Peter peter-s -- Scared the life out of me and the family. The worst part was that I was drinking a glass of red wine and it went all over the paper. What a waste. Has anyone had any had any success with any treatment for that billeric -- I have never experienced the dry drowning bit. Thank goodness. bruce -- Peter, I am have been successful - it only happens to me rarely these days. Mostly when I am not thinking about what I am doing. I do a throat massage every morning and evening and that seems to help. peter-s -- Thanks Bruce. What does that involve rea -- u all can do this there seems to be some help for u all daveg -- {welcome daveg} peter-s -- hi daveg terryw -- Hi Dave, You are new to the chat? terryw -- Dave where are you from? bruce -- Hello, Dave. daveg -- Hi Terry have just registered and working out how to do this terryw -- Dave have you Joined the KDA? daveg -- Yes - I signed up a couple of months ago- my first time on the chat though terryw -- Dave you from AUS? peter-s -- daveg my first time too. chat virgins daveg -- Yes to both of those Perth Western Australia -losing my chat virginity is not too scary! peter-s -- How long did it take for people to get their diagnosis I was told it would take me three months rea -- Tommy was diagnosed with ALS at first rea -- then sma terryw -- Peter once its sent to the labs here in the USA it takes about 10 days rea -- finally we read about a blood test in the mda mag johnm -- Ruth, I think all of us were diagnosed with ALS first. rea -- so it did take some years bruce -- I was one of the fortunate few that was correctly diagnosed. Of course I was fortunate enough to have Fischbeck as my doctor. rea -- I wrote to him years ago to ask for help terryw -- rea, you get QUEST? rea -- yes rea -- still do terryw -- It's a good magazine rea -- yes it is now peter-s -- Daveg Hi mate another aussie. I’m from Tasmania. Its time we took these guys from the states on! rea -- Bruce rea -- bruce peter-s -- Ruth Yes I was diagnosed with ALS or motor neuron disease first. Boy was that an ordinary 6 weeks until the doctor said no that’s it was KD terryw -- I helped self Diagnose myself rea -- so did we bruce -- Peter- "ordinary 6 weeks" - I can about imagine. peter-s -- how much excise do people do rea -- doctor told us not to bruce -- Peter, I exercise two plus hours a day (morning and evening). But, my exercise is Qigong - it doesn't cause any damage if performed correctly. I also meditate for 30 minutes after each practice. johnm -- I don't do much exercising at all. A few arm and leg exercises in the morning is all. bruce -- I used to do regular exercises (weights, squats, etc.), but they did more harm than good. rea -- don't over do it peter-s -- Ruth you are right. luckily have my guardian angel (wife )nto keep me in check. I feel so good now. gone from walking only 10 metres to walking 4 km each night terryw -- that’s great Peter, Wish I could johnm -- Bruce, SQUATS???? I would never get up if I tried that. peter-s -- squats would test me rea -- no squats!!!!!!!!!!! terryw -- I look like a infant when I get up off the floor. I am on al fours and my but is in the air rea -- just do some walking bruce -- That was a few years ago, John. Today my only wish is to be able to get up off the floor each day. terryw -- Look just like a baby trying to get up and walk rea -- lol billeric -- No squats here either. Can't get up once I am over center. rea -- there are now special chairs that help peter-s -- ha ha I know what you mean. I left the gym as they had no weights small enough and all the ladies used to wup me bruce -- I have a technique now where I place a card-table chair next to me and I go from the floor to the chair - then it is pretty easy to get up from there. johnm -- I don't even try to get up off the floor any more. The only time I do is if I end up there by mistake, and then have to crawl to something to get some help. terryw -- Ha Ha, I could see myself at the gym. Some big muscular guy over me with a bar with no weights, saying Push Push! I'll spot ya. LOL daveg -- Bruce, do you think doing weights accelerated the deterioration? Or would it have happened anyway? rea -- yes that is what Tommy did rea -- BILL daveg -- I take a fold down fishing stool with me anywhere out of doors so that if I sit on the ground I have got something to pull myself up with. bruce -- I know I damaged my muscles. Of course, I always pushed a little to hard and far. Denial - or something. That is when Qigong came to my rescue. rea -- we were at the als clinic in NYC terryw -- My doctors could not figure it out so I helped by trying to find info. johnm -- I didn't go for the blood test until my cousin told me about KD. terryw -- That’s one reason we formed the KDA rea -- it was right there in the mag rea -- we asked for the blood test terryw -- To get the word out since there was very little info prior to the KDA web site peter-s -- daveg do you have an email mine is This e-mail address is being protected from spambots. You need JavaScript enabled to view it rea -- there was no info for us terryw -- I think only myself and Patrick had sites talking about it peter-s -- the KD page was so good. Terry, you were a godsend for us. we left the specialist not knowing a thing about KD terryw -- We are getting very close to doing a mass mailing of a KD brochure to 9,000 Neurologist about KD terryw -- Its a very nice brochure terryw -- we have been working on it for a while. It's almost done rea -- terry send me a brochure please daveg -- Hi Peter - been watching Cricket and Rugby tonight to stay awake -must be pretty late in Tas - peter-s -- Terribly late daveg and cold as one thing. I've got a blanket over my legs rea -- Tommy has a first cousin in New Jersey that has it rea -- u men are so lucky we had NOTHING peter-s -- how slow/ fast have people decines been and has anyone improved billeric -- My feet are my most concern now. Burn like the devil after a little walking. Any ideas? rea -- foot powder terryw -- Bill, that’s the Lactic Acid burn from the feet muscles peter-s -- billeric- come to tassie right now cold enough to fix that problem. I used to get that now they just tingle terryw -- over used rea -- has nothing to do with KD from what I have learned rea -- Tommy never had that problem rea -- and he did a lot of walking peter-s -- bruce, what Qigong and where could I find out about it bruce -- For starters, try my web site: http://www.geocities.com/bgaughr/ It will get you started. There are some links to help find local teachers in the world. Send me your email address and we can chat more about it. This e-mail address is being protected from spambots. You need JavaScript enabled to view it peter-s -- thanks bruce peter-s -- you'll have to send me pictures rea -- terry rea -- really of use rea -- over use terryw -- I walk on my heels, I pound them so hard they hurt terryw -- My balance is gone rea -- feet and legs got tired, but never burning terryw -- a wind can knock me off balance peter-s -- Terry. I did that and walked on the outside of the soles of my feet. like I was walking on hot coals rea -- I know terryw -- Bruce will be at the conference giving a session on it rea -- just a small crack in the sidewalk billeric -- I walk flat footed. Thought I may be using some different muscles. johnm -- Terry, my balance is gone also. I have to have something to hang onto whenever I walk. bruce -- Heal pain is fun - you are right Terry. I am also concerned about a good gust of wind in the winter time. terryw -- I can put no load on the front of my feet. I will collapse billeric -- Me too Terry terryw -- I walk on my heels through the house. I sound like godzilla coming. Boom Boom Boom rea -- gentlemen rea -- I am going to leave u all we have been there in everything u say rea -- please if u need your wives to talk rea -- e-mail me rea This e-mail address is being protected from spambots. You need JavaScript enabled to view it peter-s -- take care Ruth rea -- or caregivers terryw -- Thanks for coming Ruth bruce -- Take care Ruth. Thanks for joining us today. terryw -- Ruth we have special Caregivers and wives chats from time to time rea -- thank u all really rea -- please let me know I might be helpful billeric -- By Ruth terryw -- OK Ruth, thank you again rea -- {goodbye rea} peter-s -- does anyone swim billeric -- During the winter Peter. terryw -- I love to swim Peter but have not in quite a while bruce -- Peter, I enjoyed swimming. It was just getting out of the water (or ocean) afterwards that was my problem. terryw -- Same here Bruce peter-s -- I know what you mean. That was my first indication I has a problem I went skin diving and the tanks and weights made it impossible for me to get back up billeric -- Sun City, AZ. pools are handicap designed. So are lots of the folks. terryw -- Bruce, last time I tried that I tried to walk back out of the waves and could not, they knocked me down and I laid there foundering in the waves like a beached whale until someone helped me LOL. peter-s -- good comment billeric. I manage a service for people with disabilities. I didn’t think I'd possibly end up as a client! johnm -- Sun City Center, FL pools are handicap designed also but I haven't taken advantage of them like I probably should have. daveg -- Peter I swim but we are fortunate to have a public pool which has walk-in access through the kid's paddling pool. I can't manage swimming pool steps anymore. Swimming in the ocean is just too scary these days, getting in and out ... peter-s -- I had the same experience terry. so much for the bronzed aussie heroat one with the surf!! billeric -- Agree peter. terryw -- At least in California we have the baywatch crew to help me :) terryw -- So now I fall more often at the beach if you know what I mean :) peter-s -- Pammy and the guy who used to have a car that talked to him. Scary Terry, stay out of the surf johnm -- Terry, with my luck it would probably be one of the big burly GUYS!!!! bruce -- Terry, you'll do anything for attention! terryw -- LOL terryw -- Bruce,, that’s just me.. you have to learn how to work this disability to your advantage. peter-s -- sympathy and pity that always gets the girls terryw -- I always position myself in front of a lifeguard tower with a cute girl lifeguard. peter-s -- can I ask question again. Has anyone improved at any time terryw -- Not Myself johnm -- Peter, I haven't seen any improvement. My decline has been gradual though. billeric -- No improvement here. bruce -- Peter, from my perspective, that is a difficult question. I am better than I was five years ago in most areas. A few areas are worse. I am better mentally and emotionally and in many cases physically. But, I haven't reversed the process. I have learned to live with it and to use muscles and train other muscles to help compensate. wapita -- {welcome wapita} terryw -- Hi wapita, Where are you from? wapita -- {goodbye wapita} peter-s -- how many people have family members who seem to have the condition billeric -- None here peter terryw -- I have 2 brothers that I think have it but have not been tested yet. johnm -- I just talked to my brother and he has a feeling he has KD but doesn't want to be tested. He is 51. peter-s -- yeah john m my brother 42 is the same bruce -- Well, guys, I have to sign off. We are going shopping. Thanks for the entertaining and enlightening time. Hope to chat with you again soon. bruce -- {goodbye bruce} terryw -- Goodbye Bruce, Take care billeric -- See ya Bruce. peter-s -- talk soon bruce. I’ll email you johnm -- {welcome johnm} terryw -- John, You get booted out of chat? johnm -- Terry, yes I did. No apparent reason. peter-s -- do people have weakness in all of their bodies or only in ce3rtain parts, say like legs peter-s -- my word it must be late my spelling is so bad terryw -- Peter my weakness is whole body billeric -- Legs, shoulders, arms the most noticeable peter. terryw -- I also have vocal weakness and lungs peter-s -- mine is only in the lower part of my legs. it feels like the muscles are always tight. its been suggested that I have hereditary spinal paraplegia johnm -- Peter, only in legs, arms and hands. peter-s -- that means I could be a fraud! I' may have to hand back in my membership terryw -- Peter my symptoms stayed in my legs for 4 years before it progressed up to the rest of the body peter-s -- cool terry. Just as long as I can ride my bike for a few years peter-s -- motor bike that is not pedal power terryw -- Peter when you walk long distances or ride do your legs burn afterwards, get real hot to touch? johnm -- Peter, I liked the pedal power. I really miss being able to ride. When I got here 10 years ago I was still riding and really got to check out the area. peter-s -- no they used to feel really rubbery like I was drunk after the change in diet and reflexology they got better They feel slightly crampy in my calves after as long walk, say 5km + billeric -- What basically did you cut out of your diet peter? peter-s -- red meat coffee processed carbs like chips you know all the good things terryw -- Peter do your legs still have reflexes at the knee? peter-s -- yeah they still kick out when tapped but a little slower johnm -- My knees have no reflex action at all. terryw -- Most KD individuals lose Knee reflex action early on/ peter-s -- Oh I feel I should go and test them to make sure I'm not kidding myself terryw -- within first few years terryw -- Peter, were you going to e-mail a picture for your story peter-s -- yea I will do that this week. have to go to the beautician. work just got a digital camera so look out terryw -- We have about 10 min left for the chat. It will auto cut off at that time. johnm -- Terry, this one will be really hard to get in line. We have really covered a lot of subjects. It may take a little longer to get it back to you. terryw -- OK, No problem John. Thank you peter-s -- tomorrow is going to be write off its 1.35 am I haven’t been up this late since I was a teenager terryw -- Peter I appreciate you staying up so late to join us peter-s -- this is really great. I have a great support group but they haven’t got this dammed thing. Its good to share billeric -- Gotcha peter. billeric -- We feel the same. Neat deal. johnm -- Peter, glad we are all here to help in any way we can. peter-s -- I reckon I have had the condition for 3 years. gradually getting weaker terryw -- Yes Peter, we are here every other week in chat. terryw -- You are always welcome, even if your diagnosis comes back as Non KD peter-s -- I'll be here as long as its on a weekend and my hectic social life dosnt interfere (LOL) terryw -- {goodbye terryw} terryw -- {welcome terryw} billeric -- By Peter terryw -- LOL Knocked myself out peter-s -- see you soon terry I'm off too as its now late take care guys johnm -- Looks like you had a little problem also, Terry. terryw -- see ya later terryw -- whos still here, its going to cut off in mins peter-s -- I'm still here Oh there's the log out button peter-s -- {goodbye peter-s} johnm -- I am. billeric -- I am still here daveg -- I'll say bye and thanks for the chat terryw -- I am going to go also,, Bye all billeric -- Thanks terry johnm -- Good Bye all. Talk to you next time. terryw -- {goodbye terryw} johnm -- {goodbye johnm} daveg -- {goodbye daveg} billeric -- {goodbye billeric} End Chat |
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