Kennedy's Disease Association

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"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
6-30-01
Topics: FSMA Conference Q&A

Chat Participants:

  • terryw
  • lenj
  • don48312
  • danyel
  • billeric
  • teda
  • butch
  • yves
  • mikeg
  • bruce
  • vern
  • teda
  • patrick

Begin Chat


don48312 -- {welcome don48312}

terryw -- {welcome terryw}

terryw -- hi don

don48312 -- HI TERRY

terryw -- be right back

don48312 -- just getting rested from chi

don48312 -- Judy and I agree, no more 1 day fly in and out's. we were exhausted when we got home. it was nice to meet all the kd'ers though

terryw -- I am back

terryw -- I got very lucky on the way back to LA, I schmoozed with the ticket counter attendant and she upgraded me into 1st class

terryw -- never flown 1st class before. WOW

terryw -- Lazy boy recliners

don48312 -- that is great. about a 3 hour flight then?

terryw -- almost 4

bruce -- Flying in first class makes a big difference - room to get up and move around etc. My company allows me to fly first class whenever I

travel. It does make a difference.

don48312 -- did sue move to 1st also?

terryw -- Sue flew in a separate flight to her next business location

don48312 -- right, forgot. u told me that be4

terryw -- did you see the pictures I sent you

don48312 -- got your pictures. go ahead and use them for the KDA site

terryw -- thanks

bruce -- {welcome bruce}

terryw -- hi bruce

don48312 -- hi bruce

bruce -- Greetings world

teda -- {welcome teda}

don48312 -- hi teda

mikeg -- {welcome mikeg}

teda -- Good morning everyone

mikeg -- Hello from Atlanta, GA

lenj -- {welcome lenj}

terryw -- hi mike, how is Paula

don48312 -- hi mike. how is Paula?

mikeg -- She's getting a little bit better every day.

don48312 -- tell Paula she can borrow my chair if she wants to, lol

mikeg -- She would take you up on it if she could get up & down stairs in

it...

lenj -- Mike tell Paula that len & jeanne say hello

terryw -- hi len

lenj -- Best wishes and hellos from Buffalo

billeric -- {welcome billeric}

terryw -- Hi Bill, sorry we missed you at the conference

don48312 -- hi bill

billeric -- Morning folks

terryw -- I have to leave today in 1 hr exactly to pick someone up

don48312 -- hi len

butch -- {welcome butch}

terryw -- hi butch

bruce -- Hey Butch, welcome...

don48312 -- hi butch

butch -- BRUCE SORRY DIDN'T GET TO CALL YOU THIS WEEK BUT WE WILL GET TOGETHER SOON.

bruce -- I look forward to it.

don48312 -- len, been playing poker on puter all morning

lenj -- Hi don, I'm sure you're winning if it's not real money

don48312 -- right. why cant results be same in casino in vegas?????

butch -- HI ALL. HOW IS EVERYONE DOING SINCE OUR LAST CHAT?

terryw -- Real good, all recovered

billeric -- Terry, did you get a chance to video any of the conference?

terryw -- Yes I did, The sound turned out a little low though but it can be heard ok if you turn up the volume

billeric -- Good Terry, now how can we buy a copy from you?

billeric -- Great Terry. Looking forward to it.

lenj -- Terry, how about copying the tape and selling copies to us. I'd like to have it for my doctors.

don48312 -- me2 terry. would tape work in a vcr?

terryw -- Don, yes we will be sending out an e-mail on the tape soon. We have to figure out how we are going to do it.

lenj -- Terry, Duane Benson also has the conference on tape

terryw -- The meeting was real good. Do those of you who attended agree?

don48312 -- conference was super

lenj -- Terry I keep describing it as the family get-together at Christmas. Meeting all the people was the best part, and the immediate bonding was super

terryw -- yes len. I thought so also

bruce -- Was there very much on KD and KD research?

don48312 -- bruce, whole sat afternoon was KD

bruce -- Thanks Don, that sounds great.

danyel -- {welcome danyel}

terryw -- hi danyel, New to the room ?

butch -- I can't tell you how much last chat meant to me because of the info gained thru just chatting.

danyel -- Hi terry I am the lady that wrote you last week about my 31 husband. Thought I'd see what was going on here.

vern -- {welcome vern}

don48312 -- hi danyel

teda -- hi vern

terryw -- Great Danyel, glad you could make it

don48312 -- hi vern

vern -- Hi everyone, boy am I late

butch -- Some times the things you all went thru don't seem important but some of us are just getting to that point of needing the information you share with us.

vern -- Terry, It sure was great talking with you earlier this week.

terryw -- Good to talk to you also Vern.

bruce -- So attendees - what is new an exciting in the world of KD research?

terryw -- The research that they are doing is moving ahead well. they now have a SBMA Mouse model and are going to be screening 1400 different FDA approved compounds on the mice for a possible drug to be created that may be able to treat KD if the get a Hit on the screening

don48312 -- we should have Todd Allen explain the research part, lol

terryw -- Yes Todd would have been great in this chat. Dr Todd Allen to the KD room STAT!!! LOL

don48312 -- rotfl

lenj -- Too bad I have no idea what Todd is talking about. he talks at doctor level not laymen.

terryw -- Him & patrick should talk

terryw -- Patrick & Todd speak the same Dr lingo

terryw -- the more funds the research firm gets the more resources they can put at the testing

patrick -- {welcome patrick}

patrick -- Hello everyone!

terryw -- hi patrick

don48312 -- hi pat. u were missed at the conference

vern -- Hello Patrick

mikeg -- Pat, sorry we missed you there.

patrick -- I really wanted to go, but I encountered some insurmountable obstacles. I'll get there next year for sure.

terryw -- Thanks for all the pictures you sent Mike

don48312 -- yes, great pictures mike and terry

terryw -- Soon everyone will know after I post all the pictures & conference write up by Susanne

don48312 -- I think all the great looking women with us are so very lucky to have such handsome husbands

terryw -- Yes in Deed

lenj -- I said that at the conference but the women just looked at me funny

vern -- Terry, are highlights of the KD conference going to be on our website?

don48312 -- it is neat knowing what all of you look like

mikeg -- What is the best web site to help us understand a little bit more of what Todd and the Drs. were talking about?

patrick -- I just talked to our local newspaper. It looks promising that they will do an article on the KDA and I, or maybe a series. Although it's just a little rural paper, the editor think he may be able to get it

syndicated.

vern -- Patrick, I'd sure like to have copies of the format, maybe I can get our paper to run also

terryw -- Any Press is good Press

bruce -- Terry, I saw the press release in Yahoo Finance on your interview about KD. Great article.

terryw -- Thanks Bruce,

patrick -- I had my biannual check in with my neurologist. I was his show and tell patient for four residents. I used it as an opportunity to preach the gospel of KDA.

lenj -- patrick I charge the residents to feel my vibrating jaw

patrick -- Well, they looked at my vibrating tongue. However, they were all guys, so I didn't let them check it out...

yves -- {welcome yves}

vern -- Hi Yves

yves -- Hello, I am Yves From Yves

terryw -- In the conference Dr Fischbeck & Dr Merry publicly recognized women as also showing symptoms of KD. We feel that that is in part by our contacts and information the KDA gave them in part. We are their conduit to the KD community and with this information I think we and the world will have a better understanding of KD.

billeric -- Hi yves

don48312 -- hi Yves

butch -- How are the cookbooks doing in your areas? In our area they seem to be doing OK. Hope to use the cookbooks as a tool to spread the word on KD.

terryw -- The cookbooks are going very well in all areas

terryw -- Vern gave me a call with some great news last week. He is getting the cookbook flyer published in motor home magazines across the country. Great work Vern !!!

lenj -- Terry, tell them about your idea for fundraising cross country.

vern -- Terry, I'll send you a copy of the Homeowners magazine where our article and order form will appear in late July-August

don48312 -- kudos' to vern

terryw -- We cannot speak on fundraising for the KDA in an MDA chat room. sorry

lenj -- Sorry

butch -- Terry-Annette will be seeing you soon on your turf. I think she will have some good info for you.

terryw -- Yes, she is a wonderful person and a real go getter

patrick -- A little sad news. My second cousin (he was 72, 21 years older than I), Richard Torczon, succumbed to several bouts with pneumonia. He had KD, and as an older patient, was first diagnosed with ALS, then MS, and about 6 months earlier than I, with KD when the DNA test became common. I'd seen him at family reunions in his wheelchair, but we have BIG reunions, he wasn't a close relative, and I never actually met him in person. After I was diagnosed, I called him, and we became good friends over the past 6 or 7 years. We had the same number of CAG repeats, and our symptoms' onset and progression were very similar at similar ages. I was unhappy to hear he'd died, but his wife said he passed in his sleep and that he led a good life. It was expected, but unexpected...

terryw -- Sorry to hear that patrick :(

bruce -- Sorry, Patrick....

don48312 -- sorry to hear pat

vern -- Sorry to hear of his passing, but if I have to go I hope it's in my sleep. Don't like pain.

patrick -- Interestingly, although KD men sometimes have fertility challenges, he fathered five kids. Either that, or his wife was really friendly with the mail man (just kidding).

mikeg -- Sorry Pat, that is how both of my uncles went.

don48312 -- mike, did your uncles have KD?

mikeg -- Yes but they were diagnosed with 20 other diseases - all wrong.

butch -- Patrick-Sorry to hear about your cousin. Spreading the word on KD is one way to help stop misdiagnosis of the many muscular diseases.

terryw -- I started taking the Multi B complex & folic acid this week and muscles feel a bit stronger than usual. this is the first thing I have found that has any affect on me.

don48312 -- my MDA neuro prescribed frolic acid and vita b but I feel no difference

terryw -- it seems to be helping me a bit

mikeg -- Don, how much Folic Acid are you taking?

don48312 -- not sure. Judy hides my pills and I cant get them just now. I will try to remember to get info 4 you.

don48312 -- actually, Judy hides everything, lol

vern -- Terry, Thanks for the hint on stretching leg muscles prior to going to sleep. Legs are starting to respond

terryw -- you are welcome vern.

vern -- It's also reducing the aching, burning in my legs Hooray!

bruce -- Stretching has really worked for me also. I am very limber now. The other benefit is that I am less prone to injury when I fall.

patrick -- My neurologist wants me to go to a physical therapist for stretching lessons. He's concerned that my ligaments and tendons will tighten and shorten, as I don't use my muscles as much.

terryw -- That's what I think is happening to Vern

bruce -- Patrick, start slow and don't push. I am now much more limber than my wife. I can touch the palms on the floor without bending the knees or perform the Yoga "plough" without a problem. Start slow - warm up first and don't push - it will happen naturally.

patrick -- I started taking Creatine a few weeks ago. I'd read about it, and it seems to help, but it's really hard to tell, as I have 'good days' and 'bad days'.

patrick -- I've been taking tizanidine hcl for over 6 months now. It was prescribed by mn neurologist. It was developed for other neurological conditions. It really reduces muscular twitching and spasms. It's main

side effect for me is that it makes me sleepy, but that is a good thing a night. I know it works, 'cause if I don't take it (like if I have to drive somewhere in the morning or work on a project), I start twitching a lot

after a couple of hours. I recommend it to anyone with bad twitching or cramping.

mikeg -- Pat, do you notice any strength changes with it? I was wondering if it was the opposite of Mestinon which causes increased twitching (at least for me).

vern -- I'm taking Trazadone and Neurontin. Seems to help

don48312 -- I take Neurontin and it makes me sleep like a baby

billeric -- I also take Neurontin and believe it helps with sleep

patrick -- I do not have noticed any decreased strength with tizanidine. He'd tried me on several so far. One really made me feel weaker, especially in the legs and back. Another allowed me to run fast, but that

was because it loosened my bowels, and I HAD to move fast to get to the water closet...

don48312 -- Judy says hi to all you conference attendees

terryw -- Tell her hi back

terryw -- Dr Fischbeck & Dr merry are great people

lenj -- What does everyone think about a KDA weekend get together at some central location, sort of a low rent internal conference. Be careful with Creatine they said at the conference that it could cause kidney problems.

terryw -- Yes good point Len.

don48312 -- yes Len, Las Vegas gets my vote

terryw -- We know you Don,,,Las Vegas man LOL

lenj -- Don VIVA all the way

terryw -- VEGAS Fanatic

vern -- How about San Francisco, less chance of loosing the farm

don48312 -- and cheap

mikeg -- What is Frisco central to?

don48312 -- Vegas is cheap. cost me an arm and a leg last time in SanFran

lenj -- las vegas is an inexpensive place to fly to and stay IF you control the gambling

yves -- lenj. It is a good idea. We have a sepcial KD W-e each six month also in Yves

yves -- During these KD meeting spouses are also invited

lenj -- Yves I'D love to come to Yves. My knowledge will probably get me arrested

yves -- Our next French KD Week-end will be held in 23 September in PARIS

terryw -- Yes, anything has to be cheaper than that hotel in Chicago. $33

dollars a day for parking. :( my god!!1

terryw -- And we cant forget that wonderful pasta dinner in the hotel :(

vern -- If we have in SF, I promise I'll walk in

don48312 -- lol vern. but we will have 8 dancers carry vern in in Vegas, lol

mikeg -- about as central as Buffalo - right Len?

billeric -- How about Phoenix in mid-winter?

lenj -- Niagara Falls Canada is very inexpensive November to June

patrick -- How about Vancouver? I've heard it's beautiful, the US dollar goes further, good connecting flights, and I think they speak both English and French there...

terryw -- who is Yves, Do I know you.?

don48312 -- Yves terry

terryw -- Is that Yves, Ok You are usually signed in as Yves

yves -- Terry - I am Yves I thing you know me a bit

terryw -- yes, sorry did not recognize the logon.

danyel -- I apologize for kind of changing the subject, but could you guys tell me some things I could do to help support my husband physically and emotionally? He was healthy in September, and is now having problems walking very far or even standing up.

don48312 -- dany, does he have Kennedy Disease?

danyel -- Don, they haven't decided yet. They said ALS (that's what his grandfather on his mom's side was DX with) All other tests have come back negative, they drew blood for DNA for KD on Tuesday and now we wait. After I emailed terry, I mentioned it to the neuro and now she thinks that may be it.

don48312 -- dna will tell you if its KD.

terryw -- Danyel, you should know for sure very soon

terryw -- Danyel, progression from my point seems to go in spurts or stages and then flatten out for a while.

terryw -- I am now in a flat spot or a minor regression stage it seems with the new vitamins I am taking

patrick -- Danyel, send me an email. I'm helping my sister (a social worker) with a couple of MS patients and I might be able to help.

terryw -- Patrick I don't know if she has your e-mail

patrick -- Danyel, email me at This email address is being protected from spambots. You need JavaScript enabled to view it.

bruce -- Danyel - I am also available if you want to chat offline. You are critical to your husbands health issue. I am at This email address is being protected from spambots. You need JavaScript enabled to view it..

lenj -- Danyel, help him when asks. Don't baby him. Does he use a cane to help get up, a lift chair

terryw -- Danyel, the main thing he need right now is to know that you will

be there for him always.

bruce -- Terry, good point. We men have an ego and when we think we can no longer be manly, we (I) tended to think my wife might not want me any more. Boy was I wrong. Thank God!!!

vern -- Bruce, if I hadn't had the support of Peg, my wife, I'd probably be shriveled up in some hospice waiting to die.

bruce -- Vern, you got it. My wife kicks me in the butt when I need it and comforts me when I need that also. I have said that I am the more fortunate man in the whole world.....

don48312 -- many of us can say that bruce

lenj -- aren't wives great I don't know what I would do without her

danyel -- Thanks terry. I will be. We just renewed our wedding vows last week for our 10th anniversary and there was a special emphasis on "in sickness and in health"

don48312 -- happy anniversary Danyel

terryw -- Yes, anyone can become ill at any point. We have to bee their for each other.

don48312 -- do they know where the 2002 FSMA conference is, and will KD meet then also?

terryw -- Not yet Don, they mentioned Indianapolis.

bruce -- {welcome bruce}

vern -- I think it's amazing. we all have KD and everyone's story is a bit different, but yet the same

don48312 -- true vern

terryw -- Yes Vern, that's a strange thing about KD

lenj -- That's why the conference was so great. We got to compare our similarities and differences

bruce -- Vern, that is what is amazing about KD. It is different for most everyone, yet similar. That is also why it is so difficult to diagnose. I have two brothers with KD also, and they have similar and different

symptoms.

teda -- And most of us were misdiagnosed

vern -- I do think we're making progress with the medical profession. Two years ago if you said KD to most docs, all you would get was a raised eyebrow.

patrick -- I was able to talk with my neurologist at length as I was his last appointment and he had to impress his residents. Actually, he (Dr. Festoff) is a world class researcher and has developed meds for other diseases. In KD and many other diseases, the exact mechanism of neuron sickening and dying is not understood. In KD, although we have expanded repeats in the AR gene, the link between that gene and the apoptosis of the neurons is unknown.

lenj -- Terry, did doctor Fischbeck send back the approved survey?

terryw -- me also

terryw -- Yes, but with some change recommendations

yves -- Hello, I like to know everybody what actions do you make to find new KD

yves -- Write in news paper, T;v, meetings,....so ;;;so

terryw -- Sorry Yves, please clarify

patrick -- Yves, we've talked about that. We want to get on some of the major television talk shows and get KD and KDA known to the world. If any of you have any ideas, let us know. If you can get interviewed by the media, DO IT!

mikeg -- Pat - You and Todd definitely need to talk!

patrick -- OK, Todd, wazzzzzup?

patrick -- I'm jealous. Been married, but haven't been for many years. All I have is a new kitten, and just when I think she is listening to me, she goes to sleep...

terryw -- How is the kitten patrick, not tearing up the place I hope.

terryw -- what Kittens?

patrick -- My kitten adopted me. Her name is Pearly, she's white on the bottom and calico on the top. She just wandered into my yard one day, crying and lonely. I think someone couldn't give her away, and just

dropped her off on the road. She IS a comfort, though. At least, most of the time, when she isn't into her exploring and scratching mode...

terryw -- We need to get patrick hooked up LOL

patrick -- I am blessed with three sisters and a brother. They live all over the US, but we have all gotten much closer since our parents passed away. Sometimes it amazes me how much they care about me.

bruce -- If there has been a blessing with KD, it is that I found out what is really important in life. Love. (Boy is this getting mushy)

vern -- Not at all Bruce, I think in a way, this has given me new insights into what is really important in life.

danyel -- nice to know you guys can get mushy too. Now go tell your wives how great they are.

billeric -- Thanks, Danyel

don48312 -- I just told her a few years ago danyel

danyel -- lol don

bruce -- Terry, maybe this should be a future subject for the chat

vern -- What Patrick's kitten?

terryw -- Great topic LOL

bruce -- Terry, maybe a future subject for the chat room is on "support".

terryw -- Yes good subject, you guys come up with great topics

danyel -- so how can I chat with some of your wives to get input on what I can do?

terryw -- we can set up a chat in the Chat Cafe on the website for a certain time if you like. We can coordinate it

don48312 -- I could ask my wife to e-mail u danyel?

bruce -- Danyel, send me an email and Cindy will respond. She has plenty of insights and isn't bashful.

butch -- danyel-maybe you can give your email address and then some of our ladies can get in touch with you.

danyel -- Our email is This email address is being protected from spambots. You need JavaScript enabled to view it.. Would like to correspond with the wives if they want.

lenj -- Danyel, my wife Jeanne would be happy to chat with you. She would

like to see a wives chat room. E-mail This email address is being protected from spambots. You need JavaScript enabled to view it. phone 716-649-1428

terryw -- Hey everyone. Check out www.dialpad.com Get a mic headset and make all your USA long distance calls for free thru your PC. I use it and its saving the KDA a bunch.

terryw -- Just plug in the headset, sign up online and then call call call

butch -- It seems that the more we share info the stronger and more knowledgeable we become.

vern -- That was really cool . I've not yet gotten set up , but it's on it's way

bruce -- For what it is worth, read my story on the website. It is mainly focused on what Qigong has done for me. I can't swear that it will change anyone's life, but it has definitely changed Cindy's and my lives.

terryw -- I have to leave for the airport in 5 min.

don48312 -- to pick up sue terry?

terryw -- No my brothers Kids. he called me this morning

mikeg -- Terry, you guys have a safe trip and watch for curbs...

terryw -- yes indeed

billeric -- Thanks folks, I have a new neurologist appointment on Monday. Do I have a load of stuff to throw at him!

don48312 -- we have 2 of Judy's nephews here for 3 weeks and they are eating me to the poor house

butch -- Terry-thanks again for your leadership. I know you couldn't do it without Susanne so thanks again for your guidance.

terryw -- You are welcome Butch

vern -- Drive safe, and we'll talk again in two weeks or maybe sooner if I can ever raise anyone on the 24 hr chat room

terryw -- Mike, did the lawyers come running?

mikeg -- Not yet - everyone is trying to blame everyone else.

don48312 -- I told my neuro to visit the KDA site and she did

terryw -- That's great don, www.kennedysdisease.org (PLUG PLUG PLUG)

danyel -- thanks for everyone's advice

don48312 -- ill tell Judy danyel. we are here to help if we can

patrick -- I'll send you an email danyel. I guarantee it won't be spam. :-)

patrick -- Information is fuel. Knowing how to use it turns that fuel into power. We all help each other with sharing information and in learning how to use it. We may be physically weaker than in years ago, but we are stronger people today, and get stronger each time we interact.

terryw -- I have to run now. I mean limp slowly. You all have 15 min left. I will talk to you all soon. look for the pictures 7 conference highlights on the website in the next few days or so.

vern -- Again I feel so much stronger mentally after these sessions.A lot less expensive and more informative than going to the doctors.

lenj -- danyel, be sure to check out the biographies on the KDA web site. They might give you some insight

billeric -- Thanks Terry. Bye

terryw -- bye all

patrick -- Adios, Terry

vern -- So long, Terry

mikeg -- Actually I thing we know more about KD than 95% of the doctors out there.

patrick -- You got that right, Mike

danyel -- I know you do. Our neuro didn't even really understand what it was until I told her about the information I found on your KD site.

lenj -- Your right Mike but we still need to learn more

vern -- Most of us went through a war just getting the right diagnosis. From the devastating diagnosis of maybe MS, then ALS then the reprieve of KD, something we can work with.

patrick -- I've seen a lot of health care professionals' eyes glaze over when I start talking about CAG repeats. I think they must have slept through molecular biology in med school :-)

don48312 -- u sound like Todd Allen pat, lol

patrick -- At least a diagnosis of even KD was better than thinking I was going crazy 'cause I couldn't get stronger and the physical therapists and docs said I was OK...

don48312 -- bye terry

mikeg -- Bye Terry - I'm outa here too. See ya all next time.

mikeg -- {goodbye mikeg}

don48312 -- danyel? do you live near a big city, or near a MDA clinic?

danyel -- we are going to a MDA clinic, just a very small one

don48312 -- danyel, neuro at MDA clinic should know about Kennedy's

butch -- This is Butch signing off and wishing you all good health until your return to the next chat in 2 weeks.

vern -- Well, It's time for a cup of coffee, so I'll sign off for this session. Keep spreading the word.

don48312 -- bye butch

patrick -- Tchuss, Butch

don48312 -- bye vern

patrick -- Well, that coffee I rented has to be turned in for recycling. I think I'll be going, too. Take care, everyone.

don48312 -- I'm outta here also. till next chat

butch -- THANKS MDA FOR PROVIDING THIS CHAT ROOM FOR US TO GAIN INFORMATION...THANKS..

lenj -- Goodbye everyone. See you in two weeks Don say hello to Judy for us

billeric -- Bye , See you in a couple weeks.

danyel -- {goodbye danyel}

patrick -- {goodbye patrick}

teda -- Goodbye to all til next time

teda -- {goodbye teda}


End Chat