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Kennedy's Disease Chat Transcript  10-7-2006

Topic:  Open Forum

Host: Murray Williams


Chat Participants:

Scienceteacher
Murf
craig_h
annmariejj
JoeK
Barb
KellyC
james
Dart!
MikeG

BEGIN CHAT

 

Murf: Morning Science Teacher

scienceteacher: yes it is...

Murf: Have you been here before?

scienceteacher: good morning to you

scienceteacher: nope...

Murf: Do you have KD?

scienceteacher: I was diagnosed last week

scienceteacher: yes

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

scienceteacher: naturally.

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?

scienceteacher: ya

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

scienceteacher: ok

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?

scienceteacher: speech

Murf: Good looking forward to the conference

Murf: Ya I talk through my nose

Murf: You

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: lol

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?

scienceteacher: CT

Murf: No everyone is different. thats why we started this website to help people through this time

scienceteacher: ok

scienceteacher: thanks

kellyC_ entered the room.

Murf: We are always available so do not be afraid to call or e-mail

scienceteacher: thanks

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?

Murf: Ya

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

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

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

annmariejj: oh.

scienceteacher: ya

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: yes

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: lol

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

scienceteacher: ?

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: Teach

scienceteacher: ok

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

Murf: //1

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!!

Barb: hello

scienceteacher: why did the girl scout sleep with marshmellows, gram crackers and chocolate?

kellyC_: lol//6

scienceteacher: she wanted to sleep s'more

Murf: Hows Dallas this morning?

Barb: going to cool off a bit

Murf: LOL

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

kellyC_: BRB>>>>

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.

kellyC_: back

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

scienceteacher: nero's?

kellyC_: neaurologist's

scienceteacher: oh

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.

scienceteacher: jk

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!

kellyC_: lol

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.

Murf: OK

Murf: Teach

Murf: //2

james: ty

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

Murf: //0

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?

kellyC_: LOL

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: yep

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: //2

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.

craig_h: you to James ..............  if you need anything "This email address is being protected from spambots. You need JavaScript enabled to view it."

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!

james: my email is "This email address is being protected from spambots. You need JavaScript enabled to view it.".....  now you know what science i teach. :-)

Murf: What?

MikeG: Well, have a safe trip and I'll see you in Atlanta

james: lol

Murf: Physics

james: ....yes

Murf: //2

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: lol

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

Murf: Yup

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: LOL

Dart!: MDA?

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...

james: MDA

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: yes

Murf: They chat my progress LOL

Murf: Chart

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

james: wow

Murf: James - did you register on the website yet?

james: yes, a few days ago.

Murf: 309

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.

Dart!: Thanks

Murf: You too Dart

james: Murf, where is your story on the KD sight?

Dart!: We will do it better next time.

james: ok

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