Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"As a mother with a son who has KD, I appreciate those of you who are so dedicated to informing the public of this rare and difficult disease."

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Kennedy's Disease Chat Transcript
8-25-01
Topics: Numbness

Chat Participants:

  • meshack
  • mikeg
  • kdfl
  • speedy
  • terryw
  • lenj
  • butch
  • bobh

Begin Chat

terryw -- {welcome terryw}

kdfl -- {welcome kdfl}

lenj -- {welcome lenj}

kdfl -- Good Morning Terry. Looks kinda slow starting this morning.

terryw -- hi

terryw -- Yes it is slow,, was waiting 10 min alone

terryw -- How are you all doing

mikeg -- {welcome mikeg}

mikeg -- Greetings from Atlanta

terryw -- Hi Mike

kdfl -- John is doing great after getting back from vacation. I feel pretty good, I only fell once and my leg is finally starting to feel better.

lenj -- Terry hello-- I'm all set for winter Dec-Mar 6th--Boulder Palms on Boulder Highway.

mikeg -- Hi Len, are you in Vegas right now?

lenj -- No Mke I/m in sunny Buffalo

terryw -- That’s great Len

lenj -- Hi Mike haven't talked to you in a while

mikeg -- Hi, Terry. How are you doing?

terryw -- I am doing OK, Breathing problems

mikeg -- How so?

terryw -- who me mike?

mikeg -- Yes, Terry, what breathing problems?

terryw -- Shortness of breath, Don’t have a lot of energy

terryw -- Voice is going quite alot lately

kdfl -- My voice comes and goes. For a while it was pretty bad but lately, it has been real good.

mikeg -- I can relate to the voice going (slurred speech) but I haven't had breathing problems yet.

kdfl -- No breathing problems for me as yet either.

lenj -- Mike how is Paula doing?

speedy -- {welcome speedy}

terryw -- Hi Speedy,,Are you new to the room?

speedy -- Yes I am new You will have to be patient with me I have never done this before.

terryw -- Larry, you are doing fine

terryw -- Speedy, what’s your first name and where ya from if I may ask?

speedy -- My name is Larry I live in Iron Station NC

butch -- {welcome butch}

terryw -- Hello Butch

speedy -- it took me for ever to get in here. The time on my computer was set wrong.

terryw -- Do we know you speedy?

terryw -- Thank you Larry, Welcome Do you have KD?

speedy -- Yes terryw I was diagnosed in 93

terryw -- Larry, are you on our mailing list?

speedy -- terryw I which mailing list are you referring to mda?

terryw -- no Larry, The Kennedy’s Disease Association mailing list

terryw -- Larry, have you been to www.kennedysdisease.org

speedy -- no ineed to know how to get on it.

terryw -- Larry e-mail us at This email address is being protected from spambots. You need JavaScript enabled to view it. or go to

www.kennedysdisease.org . that is the mail Kennedy’s Disease association web page.

terryw -- OK Larry?

speedy -- Sure I got it terryw I will email you

terryw -- Great Larry,, We will get you all set up.

butch -- Good day to all. Sorry to be late getting on line.terryw -- Who would like to start a topic, the main topic for today is NUMBNESS.

kdfl -- I guess NUMBNESS really isn't a problem for me as yet either.

lenj -- I have numbness in my right hand, primarily in my index finger and thumb with overall weakness in right arm.

mikeg -- The only time I have numbness is after I fall...

speedy -- I don’t have any numbness just weakness & loss of muscle tissue in my right hand

kdfl -- I have right side weakness also and my hands aren't working as good as they once did. I know what I want to do but sometimes have trouble getting the job done.

lenj -- After I fall, I just hurt all over

terryw -- I have loss of tissue in both hands

terryw -- my hands are always real sore

kdfl -- I have no pain at all.

meshack -- {welcome meshack}

terryw -- hi Meshack

meshack -- thank you, had a little trouble getting in

lenj -- I now have trouble eating right handed, I must keep my elbow on the table and pivot rather than lift or support my right with my left.

butch -- I first started to feel numbness in my left index finger. It progressively gets worse. One of the things I miss is being able to whistle a tune. I think KD is the cause of this by me not being able to form the mouth to do so.

mikeg -- I feel exactly the same way, Butch. I can't whistle either.

terryw -- I can still whistle

mikeg -- Terry, I'm jealous - wish I could..

kdfl -- Eating still works for me right handed but I sometimes have to hold the utensils with a fist rather than normal.

terryw -- meshack,,,, may I ask your first name and where you are from?

meshack -- I am Reuel, from Shreveport, LA

meshack -- was dxd with ALS in 1987, but am wondering if correct dx, exploring KD as possibility

mikeg -- Butch, is the numbness always there?

butch -- mikeg Yes the numbness is always in my left index finger. Sometimes it is more noticeable than other times.

bobh -- {welcome bobh}

lenj -- BOB, are you new to the site?

terryw -- Hi Bobh, I did not see you log in. Are you new?

bobh -- Usually asleep at this time. Renumbness: Does anyone experience numbness in the hands and feet? Peripheral neuropathy?

terryw -- Yes Bob, I do somewhat.

terryw -- Bobh: Do you have KD?

bobh -- Yes I have KD. It is always easy to tie symptoms to KD and assume nothing else is wrong.

terryw -- Bobh: Do you know about the Kennedy’s Disease Association Website and are you on our Information mailing list?

bobh -- terryw: I have been more active in the past. email name is rheitzman.

terryw -- Yes we have ya bobh.

terryw -- Meshack: It is very possible that you may have been

mis-diagnosed. many who come to the Kennedy’s Disease Association were

prior diagnosed with ALS

meshack -- Had not heard of Kennedy's till a few weeks agokdfl -- Reuel may want to check the web site also and find out about Genetic testing to determine if he has Kennedy or not.

lenj -- meshack, you should ask your neurologist to give you the DNA test to differentiate between Kennedy’s or ALS

terryw -- Hi Reuel, I am glad you found us. The Kennedy’s Disease Website is at this link: www.kennedysdisease.org

speedy -- Terryw I was misdiagnosed at first,,

butch -- Mikeg glad you responded because I wandered if anyone else has this same problem. I have heel pain which I think is more than normal wear and tear.

lenj -- butch, mine is in my right put us together and we're in good shape.

butch -- lenj-- I guess if we all get together we still make a few good men. I am glad to be working every day and being able to do the things I can do.

speedy -- Butch I know what you are talking about working. Iam working all the time to.

terryw -- Meshack: Please visit our webpage.

kdfl -- I think most of us were misdiagnosed at first.meshack -- I am going to check web site and also get neuro to check for possibility

mikeg -- Reuel, how old are you and are you still walking?

meshack -- I am 75, still use walker inside and either w/c or scooter outside. can drive, swallow, bath and dress self.etc

kdfl -- I'm 66 and about the same as meshack. My wife won't let me bathe myself anymore since I broke my foot last year. Other than that I am still pretty self-sufficient.

terryw -- That’s Great Meshack

terryw -- Meshack: e-mail us at This email address is being protected from spambots. You need JavaScript enabled to view it. to let us know what

meshack -- voice is fading, though can still be understood by those who want to, can't whistle though

mikeg -- Reuel, I doubt VERY seriously that you have ALS. You need to check out the KDA website for more info that I'm sure you will be able to relate to. you find out. OK?

butch -- I still wish to thank Terry for coming on line to lead the way for us to communicate our problems and challenges we deal with each day.

terryw -- Thank you butch

lenj -- Ihave numbness and pain in my ankles constantly. Does anyone else have this problem?

bobh -- My hands and feet are numb. Numbness is climbing up my legs, above the knee now. Not painful however.

meshack -- I have swelling in feet, though that is probably poor circulation, had heart attack 2 years ago

bobh -- I'm thinking my numbness is something besides KD. But my GP assumes KD first. I have a Neurologist appointment soon, she has seen ALS patients so may have better insight.

meshack -- Is there any treatment for KD, and what if any

terryw -- Meshack: No current treatment at this time, Getting closer though.

butch -- meshak-- The only cure for KD is us getting together and planning our plan of attack for the next day, week, month, or year.

meshack -- is there a KD chat other than this Saturday chat in this room?

terryw -- Meshack: Not at present, We are looking for someone that can host for other time zones if you are interested?

lenj -- Bobh I also have spinal stenosis and my neurologist thinks the numbness comes from that--I feel KD

butch -- One of the worst things about KD is not being able to exercise like we should. We know that exercise at a certain point we reach a point where we cannot repair the muscles we use to exercise.

kdfl -- Has anyone had any luck with the OPEN chat room that Terry has set up.

terryw -- KDFL. I don’t think anyone uses the 24hour chat, I am thinking of removing it.

terryw -- No One is using the message forums also. We need to start using them more.

butch -- KADFL-- SEVERAL TIMES I WENT TO THE CHAT ROOM TO FIND NO ONE THERE. I THINK THE BEST WE CAN DO IS TO COME ON LINE ON THE HOUR OR HALF-HOUR.

butch -- Sorry-- The cap key seems to come on all by itself. Of course it couldn't be that I forget to take it off.

kdfl -- I've tried a few times but there hasn't been anyone there. As mentioned before, we may need to set up regular times.meshack -- I am on line several hours a day on Steve Holly chat, would look in on KD chat if knew how to get there

terryw -- Meshack when you e-mail me I can give you directions, OK

kdfl -- The message forums would probably be a better place to go as then people could respond at their convenience.

meshack -- I have an appmt with MDA neuro on Sept 12 I have a lot of questions for him!!!

bobh -- lenj - easy to blame KD - other things can go worng - and be right! in spire of KD

bobh -- spire=spite

butch -- I hope that the Jerry Lewis telethon which is coming up will show and tell a little more about KD and its symptoms so that more people will be educated about KD.

terryw -- I Hope so also Butch, Maybe Annette would be better to contact him. What do you think?

butch -- I know that Annette would be glad to and between her and Susanne they sure would be the prettiest spokespersons we could get to speak for us.

terryw -- You are Right Butch about Prettiest 2

butch -- Terry--Is there any way we could get you to contact Jerry about our plight to inform the MDs and laymen about KD?

terryw -- My Father used to be friends with Jerry Lewis way back in the 50's and 60's. I am not sure if Jerry would remember him though now.

terryw -- Jerry Lewis gave my father a sterling silver trumpet.

terryw -- My father died in 1983

meshack -- the telethon this year is going to feature ALS and have prominent ALS victims featured

lenj -- Speaking of the telethon are any of you going on your local channels to speak about KD. I here you can ask to.

lenj -- hear

mikeg -- Len, I have an interview set up on a local Atlanta station. I'll b sure to get a plug in for the KDA website.

terryw -- That’s Great LEN

lenj -- Mike G, not me has the interview

terryw -- Oh Sorry, Great Mike, PLUG AWAY for the KDA

speedy -- Terry where are you from? I go to the als clinic every 3 months in Charlotte with Dr. Rosenfelt

terryw -- I am from Los Angeles California Area

meshack -- {welcome meshack}

meshack -- back again, got the AOL boot

butch -- today’s topic--numbness-- I heard fingers, lower legs thighs, hand and lower arm numbness. Are these correct?

bobh -- I have some numbness in the face as well. Swallowing still OK for me.

bobh -- I feel my numbness is progressive. May be due to something else. Could be poor circulation, early diabetes.

terryw -- {welcome terryw}

butch -- Do the facial exercises help with numbness or swallowing? I still get embarrassed when talking and I get tired and can't form the words to enunciate the way that I know the words should be pronounced.

lenj -- Butch my facial exercises include stuffing my face with food.

meshack -- yea len, me too, too much

kdfl -- Len, I guess my exercises are the same as yours. Thanks for the chuckle.

lenj -- Terry--when is the survey coming out so we can truly compare symptoms?

terryw -- {welcome terryw}

terryw -- Len, I think Susanne is putting the finishing touches on it right now.

lenj -- Terry, then we can put statistical data to work and know or might know which symptoms are kd or which to look in another direction for.

butch -- I sure feel for you younger men out there with the KD symptoms. I am 61 and can accept my limitations but I also know how you 35 and 40 year olds must feel at this stage of your lives. I still am glad we have the leadership we have and some of the best doctors in the world doing research to find a cure for us.meshack -- at 75, cures will probably be too late for me but I still want to advocate for research

terryw -- We have about 15 min left in chat

bobh -- Remember KDA is much better known know and early diagnoses is common. SO the 35-40 types have plenty of time before they experience all the problems the older folks experience.

butch -- One thing I am glad for is that you men haven't lost your sense of humor during our chats.meshack -- sense of humor and faith are all that makes each day possible

bobh -- Make that KD not KDA - although KDA is better know now to!

lenj -- Butch, humor is my way of dealing with KD If I lose it I’m cooked

bobh -- I like to blame my misspelling on KD as well!

butch -- Terry--I think you should have another caregiver or wives or helper chat to encourage them and to help with their problems that they have.

lenj -- Bitch(BUTCH) that's a great idea the wives need as much support as we do.

meshack -- I wish I could get my wife to use puter for chats, she is afraid of this machine

terryw -- I am having chat problems today

lenj -- Darn numb fingers

bobh -- Are there any good stats on jow many KD cases there really are?

terryw -- {welcome terryw}

terryw -- Bobh, We know of at least 600 or so now.

meshack -- terry, your puter is on a baanana peel, keeps slipping out

terryw -- about 350 in the KDA database, the others are in Japan.

mikeg -- I believe that my wife, Paula is trying to get a wives support group going.

bobh -- What is the basis for 600? KDA contacts?

speedy -- It has bee nice talking this morning. I have some work to get done before the nascar race tonight Hope to see you all next time.

terryw -- by speedy

terryw -- We will be automatically logged off in 5 min

meshack -- bye speedy, enjoyed visit

speedy -- {goodbye speedy}

mikeg -- I gotta go too... until next time - hang tuff!

speedy -- {goodbye speedy}

lenj -- I've been kind of down this week. Talking to you has helped. I hope everyone feels better after these chats. I know Ido. Thanks again Terry

kdfl -- Good chat. See you all next time.

meshack -- thank all of you for chat, will probably see you again

mikeg -- {goodbye mikeg}

terryw -- {welcome terryw}

terryw -- Bye Everyone

kdfl -- {goodbye kdfl}

lenj -- see all of you in two weeks. Goodbye all

butch -- Numbness is the topic for today--I guess my brain numbness is the worse as I get older. Is this KD or just a sign of getting older?

terryw -- Feel Better Len

meshack -- {goodbye meshack}

bobh -- Hey everyone - after this closes move over to the KDA chat cafe and say hi!

terryw -- Can some of you still here go to the 24 hour chat for a test?

terryw -- I am going now

terryw -- Bye everyone

bobh -- See you at: http://www.kennedysdisease.org/24hourchat.html

butch -- I think we should have classes at the gym to teach us how to fall without getting hurt. From some of the talk we have all experienced falls of one sort or another.



End Chat