Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  03-18-2006

Topic: Mentally and Emotionally Coping with KD

Host: Bruce Gaughran

Chat Participants:




Bruce: Start Chat - The Topic Today is:  Mentally and Emotionally Coping with KD

TerryW: I am just in time

Bruce: Barb, you need to wait until we receive instructions.

Ron--PA: Hi Terry.

Barb: OK  Thanks.

Bruce: Again, WELCOME to everyone.

Murf: Morning Terry

TerryW: I did not know if I would make it to chat today

TerryW: things worked out

Bruce: Whether effected with KD or a spouse or family member, everyone has to change their lifestyle once symptoms begin to control their lives.  I thought it would be good to discuss how we all cope with these changes.

Murf: No problem - I'm usually always here

TerryW: been busy trying to clean up after the storm

Murf: What did you get?

Ron--PA: Mentally we have to cope with KD. Emotionally it is a roller coaster ride. What do you guys think!

kellyC_: I moved again and was lifting boxe's etc.. gosh my legs and arms were sore i couldnt walk for a day then depression set in! knowing that in the future ill be using a cane then walker, possibly wheelchair kinda made me sad.

TerryW: Large amount of snow for this altitude in Calif  18 inches

Gopher entered the room.

craig_h: well Bruce, my best game plan is a since of humor

Bruce: I also know that it is often easier to cope the older you become and is very difficult when first diagnosed.

TerryW: broke a lot of oak trees

craig_h: sense

Murf: Where is Calif ? In CANADA? LOL

Murf: WOW

TerryW: Talking to people and not holding in the frustrations is a good way to cope

Bruce: Definitely a sense of humor is needed.

TerryW: yes

Murf: You got it Bruce!

Bruce: Right, having someone to share your thoughts and feelings is also important.

Barb: We have been up and down.  My husband has had several broken bones. Two broken hips in the last ten years.  In the past year he broke his shoulder, wrist and damaged a hip again.  Now he seems to  be healing well and has been walking with a cane again.

billeric: I think we all have bouts of depression after we find we can't do one more thing.  I think it is really important to know this is going to happen but don't let the depression hang on too long.

TerryW: Lack of self worth from not being able to do the things around the house is a probem

kellyC_: gosh.. i guess i know what to expect in the future with KD.!!

craig_h: yes Terry, I try to make sure that people at work have at least a small idea what I'm going thru. They have been great about keeping an eye out for me. When I'm having a bad day, there is always someone that "just happens" to walk out with me

Bruce: That is another aspect of KD that I have also experienced, Barb.  The problems when an injury occurs.

PA-PAUL entered the room.

Bruce: Morning, Paul


Murf: I have broken my foot 4 times in one year. Our muscles do not hold the bones together like they used too,

PA-PAUL: almost gave up

Murf: Morning Paul

Ron--PA: Alot of guys can't accept the fact that they need a cane. A cane is't to help you wald but, to keep you from falling down.

kellyC_: yea ron for sure yup.

Ron--PA: WALK!!

Murf: We also don't heal as fast anymore.

Bruce: I used the term "Coming out of the closet" recently for someone who was afraid to tell his girlfriend and employer about his KD.

Murf: Or waddle

Barb: We saw the neurologist last week;  he said this was the first time he had ever seen John walk. And said he seemed a little stronger than a year ago.

Ron--PA: Hi Paul--have a bad time getting onto the chat?

PA-PAUL: ye i can relate to waddler

Bruce: I think it is important that we can talk about it openly and without embarassment, but in the beginning it is something we try to hide ... out of embarrassment, shame, concern, fear, etc.

billeric: It is hard to accept that we are handicapped but I think this is a needed step

Gary_KS entered the room.

PA-PAUL: YES after 3 tries i almost said the heck with it and gave one more try and got lucky

Murf: You can't hide KD for long

Gary_KS: Good morning, all.

kellyC_: no thats for sure murf

Barb: I don't see how you can hide it at all.

Murf: What was happening Paul?

Gopher: Also it is difficult to talk about something you don't know about

kellyC_: pple can see it on our faces,, with the muscle twitches and fascilations etc

PA-PAUL: it just kept saying my account was not active

Bruce: I remember making excuses to others about an injury or back pain or anything other than the truth, because I didn't want others to know and possibly think less of me.  That was a mistake.

Murf: I was thinking about camo for my wheelchair

TerryW: I met a Pastor from a nearby church last night at a neighbors place for dinner.  He asked me where I worked and I told him I do not because of KD and I explained to him what was happening,  He said that he would never have known by looking

Ron--PA: I think sometimes we don't letm people know about KD is because of insurace.

TerryW: we look normal just have worn out batteries

kellyC_: lol yupper terry aint that the truth

craig_h: one of the biggest problems is everyone wants me to go on long walks, or work out with them. They can't comprehend that someone those things are worse for me

Barb: Is insurance a problem?

MICH: Murf, what is a camo??

Bruce: Right, Ron, insurance is an issue if self-employed, but shouldn't be an issue if working for a company.  That is why we have insurance.

Murf: Bard - only if you need a medical to extend or add

PA-PAUL: Barb- I am not sure.  I have been told not to change insurance carriers

TerryW: I did the same bruce,  People just thought I had become Unsocialble

Murf: Camo paint or netting so no one knows

kellyC_: as for me when i was working in the mine's i kept to myself never had coffeee with the pit crew

Bruce: Craig, I miss my sports and especially hiking in the mountains.  We used to do it all the time.  That was hard on me and the family when I had to give it up for safety reasons.

Ron--PA: Hi Gary.

kellyC_: i was ashamed of my KD

craig_h: I agree Terry, people think I'm anti-social ......  but I'm scared to go to a restaurant or a movie theater

Bruce: I thing we all were at one time Kelly.

kellyC_: yeah....

Gary_KS: Hi Ron.

Bruce: Coming out of the closet was difficult for me, but also was the best thing I ever did.  People are wonderful and helpful once they know.

Bruce: Before that they thought I was unsociable also.

PA-PAUL: Yes anti social*** when you go to someone house and cant get off their tiolet,  it happened.

Bruce: Or to a restaurant, Paul  ...

billeric: One of worst fears Paul

MICH: Craig, Carmike Theatres here let a wheelchair and attendant in free...but my wife usually ends up paying a fortune for the coke and popcorn

Bruce: Having KD also means being a Boy Scout again ... BE PREPARED!

PA-PAUL: yes they are all supposed to be ADA but they are not All

Murf: Or fall out side a restuarant and can't get up cause you broke a foot

TerryW: When I meet people and I tell them I have Kennedy's Disease they look at me strange and assume I am a womanizer, drink and drive off  of bridges LOL

TerryW: All kidding aside I hate the word Disease

Bruce: My van has so many items in it just in case I have to use a rest room that is not handicap accessible.

PA-PAUL: hey Mich where are you and the carmike theaters

Gopher has left the room.

kellyC_: LOL here in canada pple say u have KD...Whats that? kraft dinner LOL

craig_h: True Terry, UVa first told me Kennedy Syndrome ......  I liked that better than Disease

Murf: Bruce - I agree we have to plan every trip out side the house!

TerryW: yes

Ron--PA: Most of us have that difficult time getting off a low toilet. If this happens to you, take your belt from your pants and put it on your waist. Makes it easy for help to lift you.

TerryW: People hear Disease and sometimes think they can catch it

Bruce: Good Idead, Ron

MICH: PA- paul I'm in Utah

Murf: Good one Kelly

PA-PAUL: and they have Carmike there

Bruce: Our spouses also have to be mentally and emotionally prepared.  They have to anticipate all the things that could happen.

kellyC_: ty murf LOL

craig_h: When the doctors told me I had Kennedy's ............  I said "Doc, how did I get something from a liberal?" ...........  that was the last reaction he expected

TerryW: lol

Bruce: Sometimes they are the reasonableness in the equation ... asking whether that can be done or whether I am over-doing it, etc.

billeric: Thats a good idea Ron.  I have mulled that situation over in my head lots of times.

craig_h: low toilets and low chair in doctor offices should be banned !!!!

MICH: Yes, Carmike is in Utah

Dart!: That is a good option - 'Syndrome'! And for a fact, embarrassment is what I have a problem with, being seen as something that I was not!

craig_h: wow, this is the most active I've seen this chat !!

Bruce: The other thing I learned was that people generally want to help, but need to be educated on what to do to help.

PA-PAUL: Mich I too have the carmike theaters here.

TerryW: It's a good Topic

TerryW: many of us need an outlet

Bruce: Being explicit about your needs and potential concerns is a great first step in helping others to understand.

Dart!: Has not someone invented a circle cushion that could be carried in a pocket, then inflated when the occasion merits?

Murf: I agree Bruce we have to help ourselves. God has not taken our brains yet!

PA-PAUL: good idea Dart

Bruce: Dart, I am not aware of that device, but they have an up-lift seat that is extremely useful.

TerryW: I went to see a therapist for the first and only time a month ago and she told me what I already knew but I was in fear of letting it out.

TerryW: I already knew what I need to do and I am doing it now

Murf: Keep going Terry - I see one once a week. It works

Ron--PA: I think tht needing help by someone other than a caregiver, is the most imbarassing moments to deal with. Especially in a restroom situation.

MICH: I would assume that Carmike in Utah had some of their multiplex theatres that had hadicapped seatting to close to the screen, but if I check which of the theatre inside has the seating not just in front of the screen it works out... but maybe they didn't goof and have to settle in other states??

PA-PAUL: terry I have been seeing them many different ones for about 6 years and they dont help  i should say they did not help me

TerryW: I am not to that point yet Ron

Bruce: I know that all of us feel down at times or feel sorry for ourselves.  That is only natural.  But, all I need to do is look at someone who is in much worse shape (cancer, heart disease, etc.) and realize how fortunate I am.

TerryW: Paul I think the same for me. I already knew what she told me but was afraid to face it

craig_h: I feel lucky that I have a laptop at work and the company lets me work from home on those really bad days

TerryW: but I was hurting myself more by holding it all in

Murf: TJ just called and he can't login he tried tree times and re-registered once. Terry he will contact you.

kellyC_: I dont mind talking about Kd to pple here saskatoon sk. it helps me cope alot better

Bruce: Sports use to be an outlet for me.  I could exercise or place a game of something, work up a sweat and feel all the stress drain away during the game or practice.  Learning to get rid of the emotions and stress without exercise was something more difficult, but still something needed.

PA-PAUL: yes Terry that is the good side to Talk about it with someone who dosen't mind hearing

kellyC_: within myself

Ron--PA: If you can't talk to a therapist you can always talk to a much higher power!!!!!!

Murf: It does help to talk

Bruce: Also, it helps to know that we are not alone.  There are many others with KD that are there for us if needed.

TerryW: Murf tell TJ to go into his IE security settings and set the level to low and then try

kellyC_: alot of early diagnosed KD guys are in denial example my male cousins etc

Murf: Thats not it this time

TerryW: hmm

PA-PAUL: Murf  I know i had the correct info (i have it written down) but it still said not authorized

Bruce: Kelly, I think we were all there at one time.

kellyC_: yeah.... i guess yup

Murf: Could be the same problem as Paul today

Ron--PA: Nice to hearing so much sharing of ideas and tips from you all today.

TerryW: I was not in denial, I just held back to the KD community my feeling of what was really happening to me because I felt that I had to be strong for them

Bruce: I wrote a short story several years ago about a person finding out he has KD and the steps he had to go through to gain acceptance.  It was fiction, but based quite a bit on my acceptance path.

Dart!: Is it common to experience muscle-wasting with KD?

Bruce: Yes

MICH: One step at a time is always my motto...even when I find myself on the floor trying to go out the front door and need to push up on several different chairs to finally get up... finally getting out the door is a rush.

TerryW: Yes dart

kellyC_: yes it is  dart

craig_h: actually when I was told it was Kennedy's ..  I was just happy it wasn't Lou Gehrig's

TerryW: good point craig

Bruce: The muscles and motor neurons are slowly dieing.

PA-PAUL: I guess the bad thing when talking about it (KD) is when you finnaly get someone to understand then  see the fustration / pity on their face Boy it gets me down fast

Ron--PA: Bruce--you should share your story with us some time.

Bruce: Okay

Bruce: Paul, people feel sorry for you when they don't understand.  Once they understand, things change and they begin to accept you as you are ... mentally strong, but physically handicapped.

craig_h: it's the same with anything. You start telling someone about Kennedy's, and you can tell by their eyes. They can't wait to tell you about someone they know worse off.

Bruce: It was mentioned earlier that you need someone that you can really share your thoughts and emotions with ... someone that you can occasionally dump on.  That is healthy.

Murf: The greatest scientific mind in our time is in a wheel chair and he can't talk either

kellyC_: Dart,, KD;s progression  rate is all differant for us men. of all ages group's, some are weaker than others .walking lifting etc!.. it dont matter how old we are

PA-PAUL: when I can "think about others worse off" then I can accept and be glad its not worse But only then.

Bruce: Sometimes it helps to tell the person that you are going to dump on them and that you don't really need anything, but an ear to listen.

PA-PAUL: who is that murf

Dart!: Asto progression, Kelly, to quote Dr. Phil - "What is -- IS!

Murf: I can't remember his name but he uses an electronic voice thing

PA-PAUL: auwsom

craig_h: William Shatner uses an electronic voice thing ??

Ron--PA: Terry, I was glad you finally got to to talk with someone. You ALWAYS  are the strong one. Sometimes we all need to talk with someone.

Murf: Glasses and a grin os all you see

Bruce: I read a book a few years ago, "Learning to Fall" by Phillip Simmons.  Phil has ALS and his book is one of inspiration, because he doesn't dwell on what he couldn't do, but rather what he could do.

Murf: Not that one Craig LOL

Bruce: I wrote Phil and email afterwards and he responded back.  It was great to see someone living with ALS that appears to understand that he still had a purpose in life.

PA-PAUL: Bruce  I think most of us know that and agree with that BUT too often forget

PA-PAUL: i will look for his book

Barb has left the room.

Bruce: I know it is hard on my wife also.  I often believe it is harder on her than on me.

MICH: I think there's a lesson to be learned from Christopher Reeves and his wife as they had a short life but full life

Ron--PA: If you don't do anything else today----Thank your care giver.. Give them a big hug.

Bruce: Right on, Eric

PA-PAUL: who is eric

billeric: good point Ron.  Without care givers we are in deeep do-do

Bruce: The other thing that I consider important is to look for ways to stay active and mobile.

MICH: Sorry for the confusion ... MICH is Eric

Dart!: Someone in this group spoke of the name of that scientist who is confined to a wheelchair - he is a genius who has studied the 'black holes' in spacee. Smart, but I don't know what good that will do mankind.

Dart!: True, Bruce -it IS harder on those who live with us - they are so concerned that we can take a fall.

Bruce: Continue to stimulate the mind as well as the muscles and most importantly, stimulate the sense of humor.

Murf: Dart - Thats the guy!!

billeric: Well said Bruce

Bruce: John Coakley has one of the best at making me laugh by expressing his experiences.

SEAN_IRWIN entered the room.

Bruce: Sean, welcome

Murf: My point was that we can still think and we only have physical limitations

Ron--PA: Hi Sean.

SEAN_IRWIN is currently away.

SEAN_IRWIN: hey guys

Murf: I miss the Coakley corner

PA-PAUL: one last comment Maybe that would be a good guest for the oct conference a psycologist who deals with MD or ALS people

Murf: Morning Sean

Bruce: Good thought, Paul

SEAN_IRWIN: i finally broke free on a saturday this is my first chat you guys might have to help me out

Murf: Got someone in mind?

craig_h: doctor phil?

Bruce: I have a couple of really dumb, but funny movies that I will put on when I feel a little down.  Blazing Saddles and Young Frankenstien.  I still laugh even thought I can repeat most of the lines by heart.

Murf: Just say whats on your mind Sean. We're very open here

Ron--PA: Isn't it amazing that no matter who writes a short story, we can all relate to the circumstances that affect us in the sme way. Sometimes very funny, other times really sad.

MICH: Sean, how are things in Knoxsville and how long have you had KD?

craig_h: Bruce ....  let's not sit around the campfire with beans !

Bruce: Sean, the topic is Mentally and Emotionally Copying With KD.  We started at 10:30 EST today and it has been a good subject.

PA-PAUL: Welcome Sean

Bruce: Right Craig!!!!

Gary_KS has left the room.

TerryW: Sorry everyone, I need to run, I mean waddle.  talk with you all next time

Bruce: My point is that do something that makes you laugh.  It releases so much stress that it is healthy for you.

Ron--PA: The short story I was refering to was about Kennedys Disease.

TerryW has left the room.

billeric: By Terry

Murf: Take care Gary & Terry

Gary_KS entered the room.

Ron--PA: So long Terry. Stay healthy till next we chat.

Bruce: Welcome back Gary, did you get kicked out?

Murf: Hey Gary again LOL

PA-PAUL: wife and i went to see the movie "failure to launch"  really was a good laugh

SEAN_IRWIN: thanks,  i am very interested to know some of the other side effects you guys have with the disease and compare my symptons.  thanks for the warm welcome .  i have had kennedys disease since 7/05.

Gary_KS: The server connection was down for me. LOL

craig_h: Bruce, when I get down I listen to music from my younger years. Allman Brothers, Marshall Tucker, Skynyrd ..... it takes me back to happier more mobile times

Murf: How old are you?

Bruce: Sean, we are all of different ages here, but have one thing in common ... KD

PA-PAUL: Im 60

SEAN_IRWIN: i  am 40 years old

kellyC_: am 43

Murf: 50

craig_h: 46

Ron--PA: 65

Bruce: Ron and I are the ancient ones here

Murf: Do you have facial twitches yet?

billeric: billeric----71


Bruce: Oops .. make that Bill being the winner of the prize

Murf: I had for years then they kind of went away

kellyC_: neck spasm's yet sean?

Gary_KS: 49

billeric: Hurray- at last I won something!

Murf: I've been in and out of a wheelchair for about 3 years

Dart!: To quote George Burns - 'You are just damned kids!"

SEAN_IRWIN: i have them in my face legs and arms  also my speech is affected at times

kellyC_: yes same here sean same sytoms yup

Bruce: Sean, there are many symptoms that are common, but also some that are unique to the individual.

SEAN_IRWIN: yes i have neck spasm's also

Bruce: Some come and some go, some stay forever

kellyC_: i have nasel voice now at times when tired

PA-PAUL: it seems odd but guys who began symptoms early seem to have more vocal effects

Bruce: Fortunatey, the several muscle cramps went away for me.  Now that was painful.

kellyC_: my tongue is wasted pretty good now

SEAN_IRWIN: do you guys wake up in the middle of the night with leg cramps

kellyC_: yes always have leg muscle spasms at nite ongoing

Murf: The best thing about a KDA conference is the 10 guys that are all talking througgh their nose!

MICH: PA-Paul I'll turn 60 this summer!

PA-PAUL: its great mich

Bruce: The muscle cramps were something happening in the 30'sand 40'sfor me.  They went away in the 50's.

Murf: Happy Birthday Mich

SEAN_IRWIN: that sounds encouraging

Bruce: NASAL sounds are common among us...

kellyC_: yah bruce i heard that to from another kd'er yup

Murf: We know what your going through brother

Bruce: And, we are here for you

Bruce: Our conference this year is in Atlanta, consider joining us.

SEAN_IRWIN: today is my wifes birthday (Cheri) i am having a surprise party for her tonight at "bone fish grill"

Murf: Oct 11-14th

Bruce: Bone Fish is one of my favorite eating spots.

craig_h: sean, back in september I went thru 3 weeks I could barely stand. Been gradually improving actually. Past two weeks I've actually been able to get out of floor with out aid of the couch.

Dart!: Could the cramping be parrtly from a lack of calcium / magnesium?

billeric: I can notice a lot more people asking me to repeat something I said.  I know I am not speaking as clear as I once did

Ron--PA: Sharing is Caring!! Talk about your situation.

SEAN_IRWIN: lobster tails with the warm butter "the bomb"

Murf: Me too Eric

craig_h: past 2 weeks am actually walking better than before September

Bruce: One thing about us KD'rs.  We still love to eat!

Bruce: Great Craig

Murf: Craig - did you loose wieght?

craig_h: man I wish I lost .....  am trying

PA-PAUL: for me its ( eating) is all I enjoy

kellyC_: Well all of my kd friends got to go you all take care till next chat bye all..

Murf: I feel better when I loose a pound or two

kellyC_ has left the room.

Bruce: There is five minutes left in the official chat.

SEAN_IRWIN: guys i have had so many illnesses in the past 20 years it is overwhelming.  in the spring of 1983 i had brain surgery done to install a  shunt.  in the fall of 2002 i had stage

craig_h: when I first was diagnosed, I lost 100 pounds. I felt wonderful. I didn't really have any walking troubles. Now, majority is back and I am a mess

Bruce: Weight is always an issue for muscles

craig_h: so the weight has to go !!!

PA-PAUL: yes I am over 300 lbs

PA-PAUL: self defeating too

SEAN_IRWIN: four cancer.  i got down to 100 pounds and was in intensive care for 1 week.   i am a cancer survivor on top of everything else

billeric: Does anyone know if they have selected the drug trial participants?

Murf: I wish we could just cut it off!

Bruce: I try to maintain my weight and when I go up 5%, I immediately cut back until I am back to fighting weight once again

craig_h: I was about 290, got to about 180 .....  on the Nutri/System diet

Bruce: No, we are still waiting the final word on the trials

Ron--PA: Sean--sounds like you are a survivor--Way to go.

SEAN_IRWIN: i am very interested in knowing more about the trial

billeric: Thanks Bruce

MICH: My doctor said I might lose muscle if I lose too much fat... so its a no win situation?

Dart!: You have my vote as well, Sean!

Bruce: Go to our web site and read the NEWS section on the right.  It has all the information.

PA-PAUL: kinda stupid you know you must loose but cant deal with giving away the last thing i enjoy

Murf: Saen - e-mail John Coakley. he's on the BOD

SEAN_IRWIN: do you have his email address

Bruce: TWO MINUTES ... I repeat ... TWO MINUTES

Murf: This email address is being protected from spambots. You need JavaScript enabled to view it.

craig_h: Bruce, thanks for today's topic ......   very lively chat today

SEAN_IRWIN: thanks

PA-PAUL: thanks all

Murf: good chat today

Bruce: I enjoyed it also.  It was fun and thanks for joining me

PA-PAUL: catch you all later

PA-PAUL has left the room.

billeric: Got to go guys.  Great chat.   Bye

Bruce: If you want to stay on line afterwards, you are welcome to.  Some of us have a BOD meeting to attend.

Murf: Take care Paul

SEAN_IRWIN: my first chat was great talk to you guys later.

Ron--PA: Stay healthy all. Must go for now. Bye.

craig_h: until next time !!

Ron--PA has left the room.

Bruce: Sean, if you have any personal questions, please drop us a line at the KDA email address.

craig_h has left the room.

billeric has left the room.

Bruce: Be safe everyone