Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  05-05-2007

Topic:  Open Forum

Host: Murray Williams



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 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 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