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  05-05-2007

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT

 

TerryW: Hi

Dart! entered the room.

TerryW: Hey there

Dart!: Good morning, Both!

TerryW: I think Murf is away for the moment

Dart!: That is allowed, Terry.

TerryW: I just woke up 5 min ago

TerryW: I am in Calif

Dart!: So you didn't have farr to go to get to 'the room'!

TerryW: nope, have not even used the bathroom yet LOL

Dart!: Now is the time - after Murf is finished.

TerryW: haha

Dart!: This is a wonderful medium for contact, no?

TerryW: yep,  it is avaliable anytime.

TerryW: 24hrs a day

Dart!: How are the fingers working today?

MICH entered the room.

TerryW: good so for,  they are warm

Butch entered the room.

TerryW: hi guys

MICH: Morning All

Dart!: That is the trick, isn't it - to keep the fingers warm, and Good morning to all.

Butch: Good morning guys. How are you doing?

Murf: Morning

TerryW: doing ok

Murf: I'm back

TerryW: hey murf

Murf: Ya, hows everyone this morning?

billeric entered the room.

Butch: I've been having alot of trouble lately. Seem to be weaker.

TerryW: me also Buth for some reason

billeric: Good Arizona morning to you guys

TerryW: Butch

Murf: I could not confirm with Dr_D

Dart!: Just tickety-boo here, thank you. Sorry about the weaker thing, Butch!

MICH: I'll third that weakness

johnweeb entered the room.

Butch: Can't seem to bounce back as quickly.

Murf: Ron _ I don't bounce when I hit the floor anymore either

TerryW: Murf, you were not able to get a hold of Nick

TerryW: ?

Murf: No

TerryW: hmmm

TerryW: It may just be us KDers then

TerryW: things happen

Murf: I just tried the three phone numbers I had

Murf: We'll reschedule if he doesn't show.....no big deal

TerryW: yep

Butch: How was the last chat with Angela?

Gary_KS entered the room.

Murf: Two guests in two chats is two much for one guy

Butch: Did she answer alot of questions about the trial?

TerryW: Hi John, Gary

Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.

Murf: Morning Gary

Butch: Hi John and Gary,

billeric: Hi Gary

TerryW: I have a question for all of you

johnweeb: hey all!

Murf: Hey John

craig_h entered the room.

MikeG entered the room.

TerryW: does anyone else have problems with the bowel muscles and going to the bathroom. Pushing?

Murf: Yup

MikeG: greetings from sunny Florida!

craig_h: howdy all

TerryW: It is getting bad for me.  I have been trying fiber suppliments

Murf: Ended up with a huge you know what

Butch: Yes Terry. Feel the need but many times have to work real hard to get results.

TerryW: yep Been there

TerryW: Thrombosed Hemmeroid

Murf: I need to take prunes and medication when they don't work

TerryW: had one a year ago

Murf: You got one to Terry?

MICH has left the room.

johnweeb: terrible constipation last  6 months, never  problem before

TerryW: I have had 2

TerryW: had to have them lanced

TerryW: and drained

Murf: I've had one for 2 years

billeric: Terry, I read something the other day that has helped me.  I take a tablespoon of medimusil every morning with 8 oz. of juice.  This has really helped me.  Feel much better without frequent urges.

TerryW: I will have to try that.  My pain meds cause constipation

MikeG: I take Metamucil too.

MikeG: keeps me regular

Murf: Terry - what if you don't get them done?

Butch: If you take metamucil be sure to drink alot of water, If not your bowel will become very hard.

TerryW: Murf you need to get them taken care of

Dart!: Ooooohhh, that sounds nasty, Terry! I am embarrassed to ask my question, as I would ratherr have my problem.While we are waiting - Does any of our group have their fingers go 'wonkey', disobedient, at times? If so, what is your sollution?

MikeG: yes - very true.  I drink about a gallon of water a day.

TerryW: they can cause real problems if you dont

Murf: I went to a specialist and he did a colonoscopy

Murf: Said "see you in ten years"

TerryW: disobedient?

Dart!: Yes,

TerryW: uncontrollable?

Dart!: Yes, Terry , fingerss that won't do as their told.

Dart!: 'they are'

MikeG: yess - especially during typing...

TerryW: Only when cold or trying to work with small objectls like puttin a nut on a bolt

billeric: I have never expieranced that Dart

TerryW: thy go dead

MikeG: or buttoning a button'

TerryW: yes

Dart!: Hohh, buttons for surre!!

TerryW: frustrating

johnweeb: do any of you suffer from head drop? it's become my no.  l problem.

MikeG: that's what the button hook is made for.

MikeG: works great!

Murf: I used to tie flies but I can't get their legs together any morre

MICH entered the room.

Murf: for fishing

TerryW: does anyone else have what john typed

TerryW: cant hold head up

MikeG: not me

Dart!: I am working on a rig to assist my head-drop problem, and will kep you posted.

Dart!: Very good one, Murf!

Murf: //0

johnweeb: is dr. di joining the group?

Butch: Once when I was riding the mower and it was particularly rough ground I had a hard time holding my hed up after I was done mowing. Got tired more quickly,

MikeG: I have a slight problem holding my head up as I get up from a laying down position.

Murf: I could not contact him this morning and I forgot about the chat til last night sorrt all. I'll reschedule with him at a later date.

TerryW: Butch I have found if you hold your head in a position looking down for a period of time I find it hard to lift it back up for about 3-4 days afterwards

MICH: Is anyone of Zicor or Simvastatin to deal with cholesterol...as far as my head goes...sometimes hard to raise it up while laying in the tub...and its weak on one side to were I can sleep only on one side

Butch: I'm usually looking up. Need all the help from above that I can get,

MikeG: How about Dry Mouth - is anyone experiencing that?

billeric: I take Lipitor Mich

TerryW: I yhink that if you read a lot that the head drop problem would be worse

johnweeb: i am unable to hold my head up normally anymore...sad.

Murf: johnweeb: How long have you had KD symtoms

TerryW: I wish there was something to help you john

Dart!: Another good one, Butch! We are a 'funny' bunch this morning! I didn't realize the 'head- drop' was such a popular problem!

johnweeb: 10 yeard on KD, but 3 years active

Butch: John--what do you mean 3 yrs active?

craig_h has left the room.

Butch: John--can you wear a cervical collar?

johnweeb: neck collars help  bit.  doc now thinks i'm in early stages of parkinsons  too

MikeG: Sorry about that, John.

Butch: Sorry to hear that John. That is more than you should ave to deal with.

johnweeb: active means it domminates my ifestyle--walker, wheelchair., etc

Murf: Ok thats me

MikeG: Do you have the shakes that accompany Parkinson's yet?

Murf: Shakes and ttremors are also KD

johnweeb: my left arm and when i eat

MICH: I'm using a wheelchair (power) too... a walker is in my future too as I don't bounce as well as I use to

Murf: I have a walker & three chairs

MikeG: That's true Murf.  But nothing like Parkinson's.

Murf: Ya my heart goes out to you John

Dart!: I have tried a flat stick stuck in my belt, John, and a wear a ball-cap hooked to the top end of the stick with a little bungy cord.

johnweeb: thanks

TerryW: really dart?

Murf: LOL Dart you dweeb

Murf: LOL

TerryW: got me haha

Dart!: Yes, Terry - I would like to patent it, but I see now that there are manny people that need the solution NOW!

Dart!: A straight stick works, but I know a fellow who can shape the stick to one's back.

Murf: What are we all doing to raise funds for research?

Murf: I just started an eBay store

MikeG: Yeah, like my nephew Sean.

TerryW: cool

Murf: Will be donating directly from the store to KDA

MikeG: We need a 10k roll-a-thon.

johnweeb: has anyone heard how the NIH atudy is going?

TerryW: We have sold many things on Ebay for the KDA

Murf: Mike - He's done great!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

MikeG: yep - still getting donations!

Murf: wow You'll have to total it and then we'll need to present him with something at the conference

Murf: One of our trophys Terry

Murf: John - They are talking about criteria to cut the study short but we are still with the original game plan

johnweeb: cut it short? why?

Murf: They are talking about criteia (if this and this then this)

Murf: If there is a clear benefit and no side affects they may cut it short

johnweeb: what does that mean?

johnweeb: so the med isa working?

Murf: We have had one death on the study remember so I doubt this will happen

Murf: They don't know John

Murf: They are only talking about it

Butch: Mike--I hope Sean knowss just how much all his efforts for the KDA are appreciated. He is doing a GREAT job.

johnweeb: damn i am so hopeful.

billeric: Got to go guys.  Packing for our annual Mn. summer move.  I bought a lap top with wi-fi so will be in touch.  Stay up right.

TerryW: bye Bill

billeric has left the room.

Butch: So long Bill--stay healthy.

MikeG: He sure is - and I let him know it every time I talk to him.  We need more folks like him that are on fire!

Murf: We all are but we are testing an FDA approved drug that may help our sysmtoms or have other benefits. We simplely don't know yet and this all takes time

Murf: I'm doing this for my brother's kids. I doubt this will help me

Murf: too far gone in the head anyway!! LOL

Butch: Murf--How is your brother? Does he have more symptoms than he had in NOLA?

Murf: Yes he's got a new chair

Murf: He was at Baltimore not NOLA

johnweeb: i want a  miracle now. i;m selfish.

Murf: We all do John

Butch: Right Murf--Terry--How is Susanne doing? I know she has a very busy work schedule.

Murf: All we can do is raise money and give it to these researchers then x our fingers

TerryW: Susanne is still very busy but i am trying to slow hwr down some

MICH: Murf, what kind of chair does he have... I'm going from an old Jazzy to a Quantom 5000

MikeG: Just like all of our caregivers I guess...

MikeG: They mean SO MUCH to us.

Murf: WOW sound sfast!

Butch: Wish we could come up with something like Am Idol did. Raised over 70 million in a very short period of time.

TerryW: I was thinking the same thing Butch

TerryW: We need celebs

Murf: Only difference is the doing part

Murf: do what you can

Murf: and we'll get there

Butch: Maybe we could be Am Idol senior edition. LOL

Murf: and cripple section LOL

Murf: I can do a great chiken on the kitchen floor

TerryW: We need someone to get on the Oprah show

Murf: chicken

Murf: if only Terry

TerryW: We have written them

TerryW: no response

Butch: Sounds like you are volunteering. Is that right Terry?

TerryW: Motel and others also

Murf: who do you know that has a chance better than a snow ball?

TerryW: Montel

Murf: Hows he

Murf: whos he

Murf: she

TerryW: I guess they would rather have fortune tellers on

Gary_KS has left the room.

Murf: what ever sells

TerryW: Montel Williams

TerryW: he has MS himself so I thought he would be more understanding

Gary_KS entered the room.

Gary_KS: I was kicked out because of inactive. LOL

TerryW: really gary?

TerryW: strange

Murf: Really?

Murf: must be a setting on your browser are you dial-up?

TerryW: I will have to ask the chat hosting Co. about that

Butch: Sorry that Dr Nick couldn't be here today. Hope we can get him to reschedule. Good job Murf.

Gary_KS: No, I am using DSL.

Murf: Good job? I fell asleep on this one!

jameson411 entered the room.

Murf: Sorry all

TerryW: Hi jameson411

jameson411: good morning

TerryW: you are tardy LOL

TerryW: you have to stay after now

Murf: retardy LOL

jameson411: but i have a pass...:-(

Murf: and write in the blackboard?

TerryW: Murf //10

MICH: How are things in CT?

Butch: Retardy just like the rest of us.

jameson411: wonderful

jameson411: 60's, sunny and fabulous

Murf: James - sorry I waas thinking of me not you WELCOME!!

Murf: //5

jameson411: And I'm sitting in front of a computer doing homework... :-(

TerryW: Well all,  I have to go,  talk with you all again in 2 weeks

TerryW: murf you gonna save after

jameson411: was it something i said?

Butch: So long Terry--stay healthy.

TerryW: no Jameson

jameson411: lol

Murf: yup Terry Take care

TerryW has left the room.

MikeG: Same here Terry.  Hope everyone has a great day. Later.

MikeG has left the room.

Murf: see ya

Butch: So long guys. Stay healthy till next we chat. So long.

Murf: I messed up on our guest today

MICH: Won't be able to join in two weeks so talk to you'all in June

Butch has left the room.

Dart!: A great day to y'all, until next time!

Murf: sorry all and I'll see if we can re-schedule later

Dart! has left the room.

Gary_KS: Bye, all. Take to yours later.

Murf: James you doing ok?

jameson411: yah...  ok

Murf: John  you ok

Gary_KS has left the room.

Murf: Mich ... Gary

johnweeb: do we have anyone in chicago who knows any of the producers of oprah?  that's how it's done. terry and suzanne would mke a great story for her.

Murf: They would and I think it was sent to her but never got past the producers

johnweeb: got to go to a  producer

Murf: I really don't know how that stuff is done but ya, I think you need to know someone

johnweeb: contact is everything

Murf: How do we get in to see a producer?

Murf: I can't even go to a party

jameson411: $120, I can go see the producers in NY

johnweeb: have too know someone

Murf: Isn't that where you meet them?

MICH: Brain storming... how about Larry King?

jameson411: but the seats aren't vewy goood

Murf: I'll send you the $120....can you do it??

jameson411: it was a joke....

Murf: oh

jameson411: i was talking about the broadway play

Murf: rats LOL

Murf: LOL

jameson411: the producers

jameson411: sry

johnweeb: anyone would be good but  oprah would  be the ultimate

Murf: Doh

Murf: agreed

jameson411: since we're brainstorming, what about a publicity stunt?

Murf: we would get big exposure

jameson411: something that gets attention

Murf: what are you thinking Legally

jameson411: Like we all walk/roll/crawl  across country

jameson411: yes, legal

MICH: I totally agree Oprah would be great and their story is great... what about person of the week on the national news or where they pick a human story to go after every week

Murf: Big organization....not many of us....might work.......

Murf: I guess we just need to keep writting these places again and again

jameson411: stories of selflessness and triumph... overcoming increadible odds to do the impossible... thats was Oprah/tv world wants

jameson411: certainly Terry applies...

Murf: Sounds like we have an author!

jameson411: so how do you get the attention

jameson411: lol

MICH: Got to run... so see ya next time

jameson411: bye

Murf: See ya Mich

MICH has left the room.

Murf: I need to go too ... saving now

END CHAT