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Kennedy's Disease Chat Transcript 05-05-2007
Topic: Open Forum
Host: Murray Williams
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.
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?
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
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: 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
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?
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"
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'
Dart!: Hohh, buttons for surre!!
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!
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.
TerryW: really dart?
Murf: LOL Dart you dweeb
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.
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: 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?
Murf: Hows he
Murf: whos he
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?
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: 60's, sunny and fabulous
Murf: James - sorry I waas thinking of me not you WELCOME!!
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
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....
jameson411: i was talking about the broadway play
Murf: rats LOL
jameson411: the producers
johnweeb: anyone would be good but oprah would be the ultimate
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
MICH: Got to run... so see ya next time
Murf: See ya Mich
MICH has left the room.
Murf: I need to go too ... saving nowEND CHAT