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Kennedy's Disease Chat Transcript 10-7-2006
Topic: Open Forum
Host: Murray Williams
Murf: Morning Science Teacher
scienceteacher: yes it is...
Murf: Have you been here before?
scienceteacher: good morning to you
Murf: Do you have KD?
scienceteacher: I was diagnosed last week
scienceteacher: and you?
Murf: Me too welcome
Murf: Where are you from?
scienceteacher: CT, USA
Murf: I'm in Houston
scienceteacher: have you been here before?
Murf: Will you be attending our conference next week?
scienceteacher: ? didn't know about it.
scienceteacher: where is it?
Murf: Yes I'm one of the board members
Murf: In Atlanta
scienceteacher: No, not going to be there.
Murf: Info on the website
scienceteacher: ok, thanks
Murf: I bet you have a lot of questions
Murf: I'll answer all I can
scienceteacher: The KD website has good info... but I have many more.
Murf: We all do
scienceteacher: How long have you known?
Murf: I was diagnosed in Holland Oct 1999
Murf: My brother at the same time in Canada
scienceteacher: age? I'm 33
Murf: My story is on the website
Murf: I'm now 50
Murf: Looking back I had symtoms at 35 +/-
Murf: Just a little weakness at that time
scienceteacher: My symptoms started a few years ago. I have difficulty with stairs and can't run anymore.
craig_h entered the room.
scienceteacher: but i'm still mobile
craig_h: good morning
Murf: Yup you have KD
Murf: Morning Craig
craig_h: how is it going Murph?
Murf: I use a wheelchair at work now and have for about 3 years
scienceteacher: how about speach?
Murf: Good looking forward to the conference
Murf: Ya I talk through my nose
scienceteacher: that is my biggest concern... I've been a teacher for 2 yeaars know and I love it. I can teach if I can't walk... but difficult if i can't talk
scienceteacher: I can talk comfortable. Minor neck cramps, but nothing bad
Murf: It's funny at the conferences we get a dozen of us all talking through our noses LOL//1
scienceteacher: I wonder how long I have before I can't teach anymore. Is there a standard time line for progression or is it different for everyone?
Murf: Craig This is a new person that was diagnosed last week
annmariejj entered the room.
scienceteacher: hi Craig
craig_h: hi teacher. sorry to hear that, where are you located?
Murf: No everyone is different. thats why we started this website to help people through this time
kellyC_ entered the room.
Murf: We are always available so do not be afraid to call or e-mail
scienceteacher: i appreciate that
annmariejj: Good morning everyone.
scienceteacher: hi :-)
Murf: Morning Kelly & annmarie
kellyC_: good morning alll....
craig_h: teacher, I was diagnosed 5 years or so ago. I still get around on legs, but rely on a cane more now. At times I run out of breathe when talking. But everyone seems to have slightly different reactions
annmariejj: What are you guys chattin about this morning
Murf: Kelly - you coming next week?
kellyC_: to the conferance?
kellyC_: no cant afford it murf ty
scienceteacher: I'm newly diagnosed and am asking a bunch of questions.
scienceteacher: that is one of the lines of conversation.
craig_h: teacher, we have all been there, fire away
annmariejj: My husband was diagnosed I think 4 years ago, his brother is also diagnosed.
Murf: We need to do something about that next year. Please remind me
annmariejj: We just went to the store to purchase him a scooter, his legs are getting worse
Murf: Ann (can I call you that?) how old is he?
kellyC_: annmarie.... Iam 43 yrs old,,, my legs are still ok at times,,, i have speech problems lotsa weakness lots of muscle spasms
annmariejj: Did you guys hear about the Mayo clinic trials?
JoeK entered the room.
craig_h: teacher, anytime you have questions or need someone to talk to, do you use yahoo messanger?
annmariejj: My husband is 44 and my brother in law is 49 I have to take care of both of them
Murf: We are in NIH clinical trials fro KD now
annmariejj: My brother in law has choking problems.
scienceteacher: thanks craig
kellyC_: hole old is he annmare
Murf: Some of us do too
annmariejj: Husband 44, brother in law 49
annmariejj: I actually had to call 911 for my brother in law
kellyC_: ooooo,,,, ok ty
annmariejj: But science teacher at least you are corresponding with people, my husband won't yet.
annmariejj: I think the first step is to talk to people and not feel like you are alone.
Murf: Ann - we need to try and relax in those situations but its hard to do
scienceteacher: it is what it is... there is no denying my condition
annmariejj: Oh no his face was blue, we had to call 911 he has to go on a liquid, soft food diet.
craig_h: I've actually had a good week. I went into work for half a day every day, worked at home the other half. Could of stayed longer, but my boss keeps an eye on me and insists I don't over do it
Murf: This is a teriffic bunch of guys on here every fir4st & third sat of every month
kellyC_: Hows.. the NIH, trial coming along for us kd men is the drug helping anyone yet??? or maybe to early to tel yet ?
scienceteacher: how about exercise... anyone of you do anything regularly?
kellyC_: yes they say the swimming pool is really good for us kd men
scienceteacher: i love to swim, I'll join the ymca this week :-)
kellyC_: and stretches
Murf: To early to tell i think
kellyC_: ok murf ty
annmariejj: My husand is in the pool all the time. I showed him moves that i do in yoga and he can do them in the pool. it is amazing
craig_h: good days/bad days .... but I might be on the placebo, just never know
scienceteacher: it seems you don't have trouble typing.... is this chat difficult?
Murf: Some of us don't and some do lite exercise likeTai Chi
kellyC_: I"am going to NIH nov 29 it'll be my first time
annmariejj: How do you sign up for the trials?
craig_h: I just make more typos that I used to
kellyC_: they pik you
Murf: Some times the fingers cramp up
craig_h: me to Murph
scienceteacher: or a twich make you hit keys you didn't mean to...
annmariejj: scienceteacher do you have facial twitchs to?
Murf: Ann - Contact John Coakley - info is on the website
kellyC_: I have alot of sporadic ataxi in my hands..... weird hey!!!!!
annmariejj: Thanks Murf.
craig_h: teacher ...... do you teach high school kids?
scienceteacher: i love it!
scienceteacher: this is my second year
Murf: Ann Yes but not so much any more
annmariejj: I am afraid to teacher high school I actually teach elementary school.
scienceteacher: the older kids are easier to control
annmariejj: I dont know I teach 5th now and I think my hair is going grey.
Murf: I teach Kid s too 30-45 yearts old at work //2
kellyC_: it'll hit him lateron in life
annmariejj: this actually might help everyone here.
craig_h: the guy that played football at Miami ?
annmariejj: I actually started on the criminal court system and thought kids would be easier. go figure.
annmariejj: wow I can't to tell my husband. he is a big fan of his. this might help him
annmariejj: where do you teach science teacher?
JoeK: craig what is name of football player from Miami?
scienceteacher: question for kd sufferers here................ once symptoms were known, how many years before you need a walker or wheel chair
annmariejj: if he used steriods would it help?
annmariejj: My husband was diagnosed I thik 4 years ago, he needed a cane after 2 years of being stubborn.
scienceteacher: how reliable is the source?
craig_h: teacher, I've only had to use a wheelchair once. I'm usually ambulatory, with a cane
kellyC_: were all differant with our kd
Murf: Everyone is different but I was 4 yrs from diagnosed to chair. I still walk some
annmariejj: my husband also gained over 100 pounds because they were not sure what he had and perscribed peraste I think when you take it you gain weight
annmariejj: They say if he can lose the weight he would stand a better chance at walking.
craig_h: well, am I still allowed to dislike the Miami Huricanes? laughing
scienceteacher: craig... when did symptoms first appear
kellyC_: my fine motor skills are getting worse
Murf: Thats a big issue
annmariejj: they say the weight makes it harder for him to walk. they want him to lose the weight that the meds put on but he can't lose the weight because he can't work out.
craig_h: mine? about 10 years ago, now that I think about it, diagnosed 5 years ago maybe 6
scienceteacher: so my guitar playing days are limited... bummer
kellyC_: i was diagnose in 1998 and now on a full time pension now
annmariejj: my husband say very bad facial twitches but fine motor skills are great actually.
annmariejj: say should be has.
scienceteacher: so there is hope that i may still be reasonably ambulatory into my 40s... that would be good
Murf: Ann he needs to try a little but no over doing it. That hurts too much
scienceteacher: good to know ann.. ty
craig_h: I can speak to the weight lose helping. When I was diagnosed I lost about 100 pounds. I was walking perfectly fine, climbing stairs, etc. Then weight started creeping back and I feel aweful. Am trying to get weight back off
annmariejj: Murf he will try and mow the lawn still. God help me.
craig_h: teacher, how old are you ?
scienceteacher: i'm 33...
craig_h: I was about 37 or so before I felt it. I'm 47 now
Murf: Thats not good. too much I think
annmariejj: Murf tell me about it. Moderation is what I say.
kellyC_: you should be ok till ur in ur 40;s science teacher i think?
Murf: We all have pride that gets in our way at first.
annmariejj: Its hard, I've mentioned anti depressents also. I think he's not keen on pills.
scienceteacher: that would be great... I'm hoping for that
kellyC_: I take clonazipam for my muscle's and helps me sleep
Murf: I'm still working full time (50-60 hrs a week) for a major oil service company. I should be ok for another 5+/- yrs
annmariejj: scienceteacher everyone's kd is different. With my husband and his brother they are two totally different symptoms but same disease.
craig_h: the biggest problem I had was asking people for help. Like in a store asking someone to hand me something from a bottom shelf, asking someone to carry something to my car ....
scienceteacher: i'm learning that here
scienceteacher: thanks ann...
annmariejj: its just amazing for me. you would think it would all be the same and its not
Murf: You have to adapt to the changes in your body or you will fall and brake bones
scienceteacher: sorry for the long name 'scienceteacher' is a lot to type.
Murf: hows that?
scienceteacher: or Mr. Teacher... lol
kellyC_: science teacher read some of the personal stories on herethe kd web page there very good!!!! very informative
scienceteacher: just kidding
Barb entered the room.
scienceteacher: ok, i will
Murf: Morning Barb
scienceteacher: maybe i'll write my own
Murf: Humor is our best medicine
kellyC_: u should
Murf: Please do!!
scienceteacher: why did the girl scout sleep with marshmellows, gram crackers and chocolate?
scienceteacher: she wanted to sleep s'more
Murf: Hows Dallas this morning?
Barb: going to cool off a bit
Murf: Time joke LOL
Barb: big football weekend here TX vs OU
scienceteacher: sry, I'll keep those to myself.
craig_h: Teach, I've been to the Otis Elevator test tower in Bristol, CT, you near there ?
scienceteacher: no, i'm near the NY boarder
Murf: Barb - I'll be leaving for Atlanta tomorrow so I'll need to pack. Hope that doesn't kill me!
craig_h: hope all y'all travel safe down ther
Murf: I'll root for TX anyway
Barb: wish we could travel more. Just too difficult.
Murf: Driving down with TJ
scienceteacher: I love football
Murf: He's says HI by the way
scienceteacher: go Patriots
annmariejj has left the room.
scienceteacher: How do you tell people about the disease.
Murf: I should travel with my job but I can't any more either
Barb: before kd we travelled all the time to see our children (now grown). 2 on west coast. 1 in CT and 1 here in Dallas
scienceteacher: obviously, I won't be able to hide my cane (when I need one) from friends and family.
Murf: We have the web site and we have sent flyers to neurologists in the US
scienceteacher: How did you tell people without feeling like you were soliciting sympathy?
craig_h: why hide it? it's part of life
Murf: about 7000 of them
scienceteacher: right, i agree.
scienceteacher: don't want to hide it, but don't want to trumpet it eaither
craig_h: I just say I have a muscle condition. If they ask more, I tell them
kellyC_: and i had gave the kd pamplets to the nero's here in canda
Murf: You need to face it to over come it
Murf: This is miss diagnosed as ALS a lot
scienceteacher: ya... the neurologist that diagnosed me didn't seem to know a whole lot about the disease
kellyC_: i tell pple i have a muscle wasting disease becasue they heard of kd lol
craig_h: at first I was told it was Kenedy's Syndrome, not Disease, Syndrome shounds so much better !!!
kellyC_: never heard of kd
kellyC_: there is 5 differant names for kenndys disease
scienceteacher: thats nice... "hello, I'm Joe and I have muscles wasting disease... pleased to meet you" ;-)
Murf: We'll be meeting with the only doctors and researchers looking for a cure at the conference next week.
kellyC_: type 5- of SMA;;;...... sbma.... kennedys sydrome,,, bullber muscle atrophy the list goes on
JoeK: I printed some pages from the KD web site that I give to any doctor that I go to visit
craig_h: I usually don't mention Kennedy's unless they are specically asking questions. I usually just say a rare inherited condition. People don't seem to back away if they know it is inherited and they can't catch it from you
Murf: Teach - you Kill me!! //2
Barb: We hope you learn something good!
scienceteacher: good time, thatnks craig
Murf: Ya'll should try and make it next year
scienceteacher: tip.. not time
scienceteacher: good tip :-|
Barb: I suppose most of you know about the Medicare benefit for home health aid?
craig_h: I don't
Murf: Tell us
Barb: We learned about it recently and now have daily bath and dressing help. Also have physical therapy and speech therapy.
MikeG entered the room.
annmariejj entered the room.
Murf: WOW good to know. Is that a State thing?
Murf: Welcome back Ann
Murf: Morning Mike
MikeG: Morning Murf
scienceteacher has left the room.
Barb: Requirement is you MUST be homebound. Also they require a skilled nurse and then you can have the therapist, etc. No, it is Federal Medicare.Once you are approved it cost you nothing.
MikeG: Sorry I'm late - had a siding estimate going on...
Murf: We'll have to hold posting this chat for a bit
james entered the room.
Murf: Morning James
james: i am "scienceteacher" no more..... i am now james
james: james is easier to type... didn't think about it when first signing up.
Murf: Glade you could make it Mike
Barb: The best way to get info and get started is to see your doctor's social worker. Most docs have them.
james: but don't worry, i am still the witty lovable guy you've all gotten to know
annmariejj: I will be right back, this actually perked him up.
annmariejj has left the room.
james: this is good for me. It is making me feel normal again since i was diagnosed
Murf: O ya tHATS WHAT THEY ALL SAY
james: ok, i was never really normal to begin with
james: i admit it
Barb: leaving now. gotta get busy
Barb has left the room.
Murf: Take care
Murf: I'm glade your feeling better James
Dart!: Good morning, Y'all.There is a super weight-loss program available now, called Sureslim. Very successful - nothing fancy, but it is designed for each person.
Murf: Morning DART
james: I'm into the South Beach diet.
Murf: Cool - where is the info?
Murf: I'm on Atkins
Dart!: Thanks, Murf - I was on time but couldn't find the key for the door.
Murf: Me too
kellyC_: anybody want some of my skinnyness lol//1
Murf: I'll take some!!
kellyC_: ok no problemo murf
Murf: Any one want some blubber?
Murf: This is a really good chat
james: I haven't told my mom that i've been diagnosed yet.... she'll be devistated.
kellyC_: sure is...ANY HOW GOT TO GO ALL OF MY KD FRIENDS SEE YA NEXT TIME... BYE ALL
james: by kelly
kellyC_: BYE JAMES AND EVERYBODY
kellyC_ has left the room.
Murf: James - She may (probably) be a carrier. My mother was (GOD bess her)
james: she is the one that first told me the disease is in the family cause one of my cousins was diagnosed last year
Murf: Take care Kelly
MikeG: Murf, what time do you arrive in Atlanta?
Dart!: I have only a Calgary Alberta phone # - 403 237 7646. A relative has lost over 100# in 6 months and is feeling great!
james: she is... though she doesn
james: doesn't know it yet
craig_h: james, probably better to tell her before she notices signs and begins to worry
james: she lives 4 hours away, i don't want to tellher over the phone
Murf: I'm driving with TJ so we'll be taking our time. Maybe Monday night or Tuesday morning
james: next time i see her I will.
MikeG: I'm driving up with Don - probably will get there about 2 or 3pm Tues.
Murf: Good idea James
james: I haven't said hi to Mike yet.... hello Mike.
Dart! has left the room.
MikeG: Hi James
james: kd sufferer?
Dart! entered the room.
Murf: See you there!
MikeG: diagnosed in 1990
james: wow.. old timer with the kd
Murf: Be good to meet Don finally
james: are you moble?
MikeG: pretty much - use a cane most of the time
james: I'm new to the kd diagnosis, but i've had progressing symptoms for 3-4 years
Murf: See James - No problem with the kids till you early 90's
Murf: your 90's
JoeK has left the room.
james: got it... took me a minute
james: any one talk to joeK?
james: I didn't see anything from him.
Murf: I just noticed my self. I hope so
Murf: I feel bad now, hope he's ok
MikeG: Murf, I haven't seen you since the FSMA in Chicago.
craig_h: well ............... hollar at y'all next time
james: well the good part is i'll retire from teaching BEFORE I become one of those grizzled old teachers that hates kids and shows movies all the time.
Murf: WOW that was before we started our own conferences. Long time
james: by craig... nice to meet you.
Murf: Caig see ya man
Murf: Take care
MikeG: Yep - nice to be going to this one for sure. Lots of folks that I've never met before.
Murf: It'll be great
james: ty. I'm sure i'll be in touch.
craig_h has left the room.
Murf: I always come away feeling so much better about life
MikeG: Very true!
MikeG: Well, have a safe trip and I'll see you in Atlanta
Murf: You bet Mike
MikeG: you guys have a great day. TTYL
MikeG has left the room.
Murf: James the physics here is usually gravity
james: experiments in falling bodies i take it
Murf: I used to fall all the time but then I started using a chair more and now don't brake my bones in my feet anymore
james: ouch... thats a good thing
james: to pick up a conversation that was started way back... how do you talk through your nose?
Murf: In one year broke my right foot three times and my left once
Dart!: What does the conference do, Murf, to give you a better attitude about life?
james: and do either of you go to an MDA clinic? That is what my neurologist suggested.
Murf: Easy James I open my mouth
Murf: Dart If you go the the conference page on our website you will see the past conferences
Murf: It's theriputic to talk to others with this disease for a few days
Dart!: Thanks, Murf, - and sorry that you have the bone problem!
james: Muscular Dystrophy Association...
Murf: People that understand what you are going through because they are going through the same thing
Murf: James I go once a year
james: to an MDA clinic?
Murf: They chat my progress LOL
james: your progress in to digression
Murf: They also paid for part of my chair
Dart!: That sounds good - to talk to others that understand the disease
Murf: We're not cripples , we're physically challenged
Murf: Thats why I go every year
Dart!: Very!! challenged!
james: nice talking to you. I'm gonna go for a walk in the woods while I still can :-)
Murf: There are 309 of us in the US now with James
Murf: James - did you register on the website yet?
james: yes, a few days ago.
james: that is how i found out about this chat room
Murf: I'm glade you did
james: me too
james: thanks for your openness and encouragement. Talk to you next time.
Murf: You take care and remember if there is anything you need or want just let me know2
Murf: Take care
james: by Dart!... sorry we didn't chat much.
Murf: You too Dart
james: Murf, where is your story on the KD sight?
Dart!: We will do it better next time.
Murf: in stories under Murray Williams
james: thanks... bye
james has left the room.
Murf: Take care all
Murf: You ok Dart?
Dart!: So that pretty much is a wrap, Murray - I look forward to our next visit.
Murf: Me too. see you in a few weeks
Dart! has left the room.END CHAT