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Kennedy's Disease Chat Transcript  12-16-2006

Topic: Open Forum

Host: Terry Waite

Chat Participants:




TerryW: Hello Dart!

Dart!: Good morning Terry - couldn't sleep?

TerryW: I could not either, back pain

Dart!: My sympathies!!

TerryW: but it goes away ans soon as i get up and walk and stretch for 5 min

TerryW: wierd

Dart!: Hard to sleep when you are walking around!

TerryW: throughout the night the pain builds and tightness of the backs muscles

TerryW: as soon as I get up and do some stretching it goes away for the day

TerryW: then it comes back the next night

Dart!: That is sooooooo bad. At least you get SOME relief!

TerryW: After I walk around and stretch I can then lay back down and sleep for about 4 more hours with no pain

Dart!: My wife has trouble like that, and spends many hours in her easy-chair

TerryW: It is like the miscles all tighten

TerryW: muscles

Dart!: Would infra-red help?

TerryW: not sure

TerryW: we have a really nice massage chair from Panasonic that helps

Dart!: It would be worth a try, and certainly would do no harm.

TerryW: We are expecting a storm tonight

TerryW: yesterday I got the property ready,  Made sure everything is tie d down

MICH entered the room.

Dart!: Yes, massage is good, and the chair is better than trying to find a therapist in the middle of the night.

TerryW: winds expected here on west coast area

TerryW: hi MICH

TerryW: whats the scoop?

MICH: Good Morning Terry and Dart, 60 degrees here yesterday, snow and 27 today in Utah!

TerryW: My wife Susanne has been in bed for 2 days now with the Flu, this is her 3rd day

TerryW: Its not a cold

TerryW: I got my flu shot she did not

Dart!: Morning Mitch! When is the coast going to get reli8ef from wind? S/E B.C has been having a terrible time, as has Washington.

TerryW: I have not caught it so the shot I got must be working

Dart!: S/W B.C.!!

TerryW: I hope they find those 3 on Mt. Hood

Butch entered the room.

TerryW: hi Butch

Dart!: Bad place to spend the night, but they are reported to have plenty of supplies

Butch: Hi Terry

Dart!: Hi Butch!

TerryW: I hope they are all in that snow cave

MICH: Definitely a flu shot is a must with KD...yes praying for those guys on Hood...lived in Portland for 25 years

Murf entered the room.

Murf: Morning

TerryW: Hi Murf

Butch: Hi also to Dart and Mich nd Murf

Dart!: H'lo Murf

Murf: What's happinen?

TerryW: I could not even take 1 step in deep snow, I would fall over. LOL and deep I only mean 8 inches

Butch: Almost spring like weather here in Penna.

Dart!: Nothing new here, except that today is going to be a great day.

Murf: You got lots of snow Terry? 8"

TerryW: no snow yet but they are expecting tonight

TerryW: high winds also

Murf: The NW really got it

TerryW: I have a wierd funny question for ya all

Butch: I guess the quad will get a workout then.

Murf: ok

Murf: shoot

Murf: //14

Dart!: Simple question?

TerryW: DOes anyone else have problems when getting up off the toilet and trying to pull back up their underwear stepping on them and then you cant lift your leg to get it off the britches

Murf: Yup!!

TerryW: to pull them back up

TerryW: LOL

TerryW: I hat that

Dart!: That sounds a bit familiar!

TerryW: hate

Murf: I hate that

TerryW: I about fall over

MICH: Exactly...also need the sink counter to help with the boost off

Murf: Mich - I can't do it with out one

JoeK entered the room.

Butch: No body wants to accept help especially with toilet problems.

Murf: Bend over ... fall over!

TerryW: also going to sit down I can lower myself to about 7" from the lid and then slam I freefall the rest of the way onto the pot LOL

TerryW: I feel that I am going to break the toilet sometimes

Dart!: A good thing is to screw a heavy-duty handle securely to thw wall, in just the right location.

Murf: I got those handrails on both toilets so they guide me on approach. LOL

TerryW: runway lights?

Murf: Slam it on the deck like an aircraft carrier

TerryW: Hi Joe

Dart!: Funny, but not a joke!  person can take a nasty fall that way!

Murf: As long as my tail hook doesn't get snagged

Murf: //11

JoeK: good morning from NC

Dart!: Morning NC.

TerryW: Murf, how is work,  Has it calmed down any?

JoeK: make sure you have installled a high toilet

Butch: No one knows just how complicated things become when you can't do something and have to improvise. We are all pretty good about doing that.

TerryW: yep

MICH: What's a real bumpy ride is when the counter isn't by the toilet and you try to slide off and walk on all fours to something else to boost off

johnweeb entered the room.

Butch: Morning Joe and John.

TerryW: I feel like Nasa when I can't do something.  Houston we have a problem... Then I think of a way to fix it or get it done another way

kellyC_ entered the room.

TerryW: Hi John

johnweeb: morning!

Chuck entered the room.

TerryW: Hi Chuck

Murf: I'm almost finished the one thing, Just review before publishing but I'm already getting full up for next year. I still need help

Butch: Hi kelly and Chuck (Anna Lea)

TerryW: I understand Murf

kellyC_: good morning..!

TerryW: Hi Kelly I did not see ya come in

Murf: Gee I never heard that one before Terry ... LOL

kellyC_: LOL .... ok

kellyC_: i sneaked in terry lol

Murf: I know how Susanne felt now two years ago

TerryW: Murf we have to kkep our options open to figure out how to get things done when no one is around

Murf: Hey Kelly! Cold up there?

kellyC_: gosh yes..... lots of snow here its storming now

Murf: Terry I'm talking about my paid job

TerryW: I know

Chuck: Hi to all.  I am going to type you a short (as possible) of our experience at the Alternative Gift Market.

Murf: Yeh Chuck

craig_h entered the room.

craig_h: good morning

Murf: Morning Craig

TerryW: hi craig

craig_h: how are y'all ?

TerryW: fine so far

TerryW: WIfe has Flu

TerryW: been home sick for 3 days

TerryW: I have not caught it

TerryW: :)

Murf: Good thing you got your flu shot

craig_h: butch, I never got an email from you so we could of met in Bethesda

TerryW: I got my shot

kellyC_: //13

MICH: Craig, do you and Chuck ever get together being a state apart?

Butch: Craig--looked for you there but, couldn't find you.

TerryW: I have been stressed out the past 3 days thinking I am going to get it

Murf: I go to Bethesda Monday

craig_h: never met Chuck ............

craig_h: my visit to Bethesda wasn't to great

TerryW: John,  So I hear you had a great visit to the NIH

Dart!: Heavy doses of Vit C keeps me free of 'flu and colds! I couldn't get along without it!

Murf: Why not?

Butch: Be sure to use to Murry belt. LOL

craig_h: they discovered I'm diabetic ..........  talk about a double whammy

TerryW: I have been playing Russian Roulette, I have been eating at taco bell the past 2 weeks

TerryW: LOL

Murf: Thanks Ron

Murf: LOL

kellyC_: I had to withdraw from the kd study myself.. however i was there nov 29  to dec 2//10

Murf: Why Kelly

TerryW: I figured that if I was catching the flu the Ecolli from Taco Bell would battle it

TerryW: hehe

johnweeb: i was at NIH 12/6-7 in survey, i was no, 50 in test after dropouts. greatest experiences of my KD life

kellyC_: i have a few issues from my past in regards to travel... with customs....

Chuck: There were 16 different non profit organization participating.  It was a bad Saturday for people to attend in this small "burg" but we felt a lot of educations went out to those attending.  They are going to try to get a better date next year.  Each group had a table and some very elaborate (we are looking for ideas and suggestions for next year from all of you).  It made us feel good to have so many people stop by and inquire about Kennedy's.  Terry, I am forwarding you a check from this event for $100. this year and we hope perhaps this could grow, however, every dollar helps.  Thanks to John C., Bruce and Terry for sending brochures etc.

TerryW: thats great John

TerryW: No problem check

Murf: Got it

TerryW: thank you for your time and effort

Butch: I know that the workout we get at NIH certainly takes its toll on us. They make us do the timed walk then--do the stregnth tests when we are already tired.

TerryW: I mean no problem chuck

TerryW: and anna

craig_h: doctor Li's house of torture

craig_h: that made her laugh

kellyC_: wasnt that bad guys LOL.......

johnweeb: wish dr di prospero could be my reg neuro

TerryW: Anyone here burn wood for heat?

craig_h: I was just picking at Dr. Li

MICH: Butch...Nih test sounds like the same test I nearly fail every morning getting out the front door

TerryW: how do you deal with getting the firewood around

craig_h: Doctor Nick was cool, met him for first time

Butch: Mich--I hear you.

johnweeb: and joe shrader my theraapist!

kellyC_: Joe he was cool and he sure talks alot LOL

Murf: TJ is off to the airport to pick up Weaser & Charlie but says HI & Merry Christmas to everyone

craig_h: is joe the doctor with the computer hooked to the straps ?

kellyC_: yup he is

johnweeb: amazing team of pe ople but joe and alison are leaving

craig_h: joe is a nice guy, you don't see him on second visit

Murf: Alison is leaving too?

craig_h: and doctor Chen left already

Butch: Where are Joe and Allison going

johnweeb: yes new project

Murf: Sharu I knew about

Murf: wow

jameson411 entered the room.

MICH: Did you guys here the news story this week about someone taking to the courts the issue of after preliminary tests the FDA should make test medicines available to all...especially if person has a life threatening disease?

johnweeb: jjo prinate practice

TerryW: hi Jameson

jameson411: hello

TerryW: welcome

jameson411: ty

TerryW: do you have KD?

jameson411: yes

craig_h: Jan. 1 there is a new main contact ..... Angela Kokkinis

Butch: Terry, how many brochures do you have left? I would like to get brochures out to all who will help spread the word about KD.

jameson411: I've been here before... under the guise of 'james'

jameson411: my real name is jameson... which i prefer

TerryW: We have a bunch, how many do you need

TerryW: Oh OK Jameson

Murf: Craig I see her on Monday

craig_h: Murf, I meet her for just a few minutes, seemed very nice ............. (to of gone to West Virginia U ............  I've already been on to her about that)

Murf: LOL

Butch: As many as we can get. Wish we had more at the conference. A good place to distribute them.

MICH: Jameson, what part of CT are you from?

Murf: Terry we'll need to bring them all to Las Vegas then we

TerryW: Butch we will talk at BOD more on the brochures

TerryW: yep murf

Murf: 'll print more with the correct address

jameson411: SW portion mich.

craig_h: word of advice, if your second visit is on Monday morning, they schedule bllod to be drawn at 9:00 ......go early ............  I wainted until almost 10:30 without being called back

jameson411: MICH, ru near here?

craig_h: monday morning in that dept. is nnuts

Murf: I hear ya

Murf: ty

MICH: Jameson, decades ago I was in NYC and Mich but then on to NW and now Utah

Butch: Terry--under the participants, would it be possible to list the persons state?

johnweeb: how many of you are having hand and  arm weakness?

jameson411: i am

kellyC_: same here

Murf: I think most of us Jameson

TerryW: Butch did you right click on the participants and view profile

Murf: John

TerryW: that is the only way I think

Butch: John--my weakness comes and goes--sometimes it is better than other times.

MICH: JOHNweeb...I have to use counter a work to move arms... so yes

craig_h: I'm over all feeling weaker, but hoping getting blood sugar level under control will help some

jameson411: does anyone here go to physical therapy?

Butch: Terry--yes but just thought it could be with the sign in name.

Murf: no

TerryW: Butch not unless they created their ID like  TerryW_CA

Murf: Physical therapy is computer killing games

Murf: Mental too

Butch: Terry--yes that is what I mean.

MICH: Some PTs remind me of nurse crotchit...but they are good a prescribing a good power wheelchair

johnweeb: new wealness in left grip, paim in right upper arm comes and  goes

Murf: Right sholder is weaker than the left

craig_h: johnweeb, I've had the upper arm pain ......  I have a small 3 pound weight that I'll play around with,  it actually helps me

TerryW: Crotchit?  or Cratchit LOL

TerryW: Crotchitch

TerryW: hehe

Murf: Me too Craig but it shrunk

Butch: Dr Li doesn't like to hear "I can't" does she. I know what I can do and what I can't do.

craig_h: laffs .........  1 pounder ?

Murf: 1 ozer

Murf: LOL

jameson411: who gets the muscle knots?

Murf: I still do

Murf: 8 yrs now

jameson411: I can't seem to get rid of them in my lower thighs or in my shoulders

MICH: A gallon of milk is my work out from the frig every morning

TerryW: Yesterday I had a hard time just holding my arms out to wash my hands under the sink,  Today I am better

craig_h: well butch, guess she has to push us to get the best results they can. That's why I call it Dr. Li's house of torture

jameson411: I just went to the MDA clinic at UCONN.

Murf: They will get less frequent (mine did)

Butch: LOL

Butch: Jameson--what do they do for you?

johnweeb: i have a PT who comes to our home/ to find a dr li in LA

jameson411: confirmed my diagnosis

jameson411: the local nurologist i saw here knew very little about KD

Murf: I'm going to do the MDA walk / ride this year with TJ

Butch: Do you need any hospital equipment that you might get from the MDA.

jameson411: so I was refered to a Dr who has several (he says a dozen) KD patients

craig_h: local neurologist I went to at first knew he detected something, but wasn't sure what

jameson411: Butch, not yet


Murf: Wow how is that?

MICH: JohnW...what part of LA are you IN?

Murf: who

jameson411: I don't need any aids yet

TerryW: Dozen???? I find that hard to believe

johnweeb: TOPANGA

Butch: Who is this Dr. and where is he located?

jameson411: I'm still very mobile and able to conduct life normal.

jameson411: TerryW, me too

Murf: Very lucky Jameson

craig_h: jameson, how old are you ?

jameson411: i know

johnweeb: dr li is a woman at NIH

jameson411: but i am in my early 30's, i have a long life to live with this lovely disease

craig_h: hope it stays that way for you jameson.

TerryW: Jameson I was in my 30's when diagnosed

Murf: Been there Jameson I'm 50 now

jameson411: I was reading your bio...

MICH: I found both while living in Oregon and UTAH, that the head neurologist of the ALS clinics is a good source of info

craig_h: I was early 40's when I found out

jameson411: I'll post one once I tell my family

TerryW: Its a long Bio Jameson

TerryW: I try to keep it updated, did you find the time log helpful

JoeK: Most doctors do not know about KD  === when I go to a new doctor I take  printed pages from KD web site.

jameson411: TerryW, yes I did

Murf: Joe - good idea

jameson411: thank you for posting and running all this stuff.

Murf: I need to up-date my bio

jameson411: It is helping me cope with this new life challenge i have

TerryW: It takes a lot of work from a lot of people on our board of directors

jameson411: i must

jameson411: it must

TerryW: we are all volunteers

Murf: Just got put in United Who's Who

TerryW: doing our best

Butch: Terry--hope Susanne gets over the flu without you getting it. Did she get a flu shot?

TerryW: No butch, she never does

craig_h: jameson, I know when first diagnosed, the feelings you have. But when you need help, you will be suprised how much people are willing to help if you just ask

johnweeb: My typing skills have slowed....hell for a writer. is this common

jameson411: i'm learning that, thanks craig

TerryW: I can type better than write

TerryW: that is for sure

craig_h: that was a tough hurdle for me Jameson, asking

Murf: Jameson - We're here any time for you

Chuck: A BIG BIG thanks goes out to all of the BOD.  They do a fantastic job!!!!!

kellyC_: LOL yes that gos for me to.... cant write to much.... my fingers spasms out lol

TerryW: thanks chuck

jameson411: Murf or Craig... do you have bio's on the KD site?

TerryW: Kelly, sometimes I can't even sign my name on a credit card purchase with KD

TerryW: then other times its fine

Murf: Kelly - you need to pull them out of the freezer once and a while. Come down here for a visit.

MICH: JohnW...I use to run the back office of stockbrokerage firm...but then tried outrigger for fingers...and finally three fingers stopped lifting so I no longer do that and do a lot of key pecking

craig_h: no I don't Jameson, guess I should

Butch: Writing gets worse as the tremmors get worse.

TerryW: cold effects it badly

Murf: Jameson - Under Murray Williams

jameson411: It is nice to connect name with face :-)

kellyC_: LOL ok will do that

Murf: Door is always open to KDers

johnweeb: my wife pays akk bills now, addresses all cards

TerryW: We need to ask members if they would like to submit personal stories for the site and include a picture

Murf: My ugly mug in on the website too

TerryW: need some fresh ones

Chuck: I write very very little.  I can't even read what I write myself.

Butch: Murf--Tell TJ and weeser and charlie that we wish them a Merry Christmas,

kellyC_: its weird the neuro at the NIH put a cold pack of ice on my forarm to see if the cold affects my fingers it all was ok???? guess i had a good kd day that day?

jameson411: Murf I've read you bio...

craig_h: chuck must be a doctor then, lol

Murf: ok Ron

TerryW: Kelly it's not the forearm, it's the fingers

JoeK: Why are you folks not completing you user profile???

TerryW: put them in a glass of ice water and see what happens

craig_h: joe, we are lazy

Murf: ok

kellyC_: yeah.... lol

Murf: We need to look into that Joe - Terry the profiles do not complete Why?

Butch: Before we close down for today I want to wish you all a Merry Christmas and a happy new year. Stay healthy.

TerryW: Joe, the user profile only displays certain info for privacy reasons

Murf: Ron you to and family (the girls)

Butch: Thanks.

MICH: Yes, happy holidays to all...with Xmas only 9 days away!

craig_h: are there any guests scheduled for up-coming chats? those are usually so informative

TerryW: I asked Santa for a External Bionic muscle suit at the mall .  He said to me "Kid you will put your eye out with that"

kellyC_: LOL

Murf: Where did the yr go?

kellyC_: //4

johnweeb: off to do errands and shop. happy holidays to you all!

Murf: I need to get this going again Craig

TerryW: bue John

TerryW: bye

JoeK has left the room.

jameson411: bye john

craig_h: Murf, ask Angela when you see her !

Chuck: Merry Christmas to all....

TerryW: U 2

Murf: I will and I still want to get others involved

Butch: So long Joe and John--stay helthy.

TerryW: are we all chattted out?

craig_h: thanks Murf

Murf: only 10:15 where is everyone going?

MICH: I've got to make a new years resolution to at least get exercise in a pool...but getting showered and changed before I get in is the big step

TerryW: yeah

TerryW: yea

craig_h: any of you got diabetes? you think that's effected you with muscles?

TerryW: not me

kellyC_: Well have to go and plug in my car so it doesnt freeze up on me merry Xmas to all..... see ya all in the new yr.....

Murf: TJ has type II I do not

TerryW: craig that is a good post for the KDA forums

MICH: My wife has diabetes...she gets numb feet too

craig_h: ok, Terry, will do that, good idea

Murf: Take care Kelly

Butch: Craig--yes, I have type 2 diabetes. Taking metformin.

kellyC_ has left the room.

jameson411: bye Kelly

TerryW: what are the signs of diabetes

craig_h: they started me on glucophage

Butch: Same thing.

craig_h: Terry, I didn't know I was .....  but eyesght been getting blurry, tired all the time

TerryW: I should look it up on the net

TerryW: I find answers to everything on the web

craig_h: local doctor thinks I'm getting a double whammy, because sugar stays in the viens, not getting to the muscles

Chuck: Terry, I think the surest way to tell if you would be diabetic is thru bloodwork....

Murf: Mostly with over wieght Terry I don't think you have to worry but it doesn't hurt to check

TerryW: ny bloodwork always comes back good

craig_h: NIH saw my ketone levels was pretty high

jameson411: my daughter has type 1 diabetes

Chuck: Then believe it - don't need anything else on your mind.....

Murf: Terry is about 100 lbs //2

craig_h: yes, I have to get weight off. When first diagnosed, I lost 100 pounds, about 70 is back now

Murf: Sorry Terry LOL

TerryW: only thing I worry about is elevated liver enzymes, from the meds

Murf: Me too

craig_h: so day after Christmas, back on diet hard !

jameson411: Terry, are you on the clinical med trial?

TerryW: I don't drink so that is a plus for my liver

Chuck: Agree Terry.

TerryW: No I am not Jameson

Murf: Me too Criag thinking about that one that sends you meals for a month

TerryW: I never smoked either

TerryW: I do have very high BP though

craig_h: INutriSystem Murf?   That's my diet, only diet that's ever worked for me

TerryW: 165 0ver 114

Murf: I did both until two yrs ago

Murf: Thats the one!

TerryW: they are trying to control it

craig_h: hardest thing with nutrisystem is getting that darn box into the house and unloaded into shelves, lol

TerryW: LOL

Murf: Mine BP is now under control 134/78 this morning after vacuming

TerryW: as soon as I move my heart races

Murf: Is it frozen Craig?

TerryW: bp goes up

jameson411: are any of you swimmers?

Murf: Not good Terry

TerryW: I used to be so fast a swimmer

TerryW: I could beat anyone

craig_h: no Murf , it's all either microwave, add hot water, or just open and gulp

Murf: I used to Jameson

Chuck: I was down to 124 lbs. but have been working and got up to 130.  I think a lot of my weight problem is due to it is harder to get food down a lot of the time.

Dart!: 'SureSlim' is proving to be a VERY good eating program, and it is all regular food!

craig_h: nothing frozen

TerryW: then I got terrible leg cramps swimming

Murf: Cool

TerryW: foot cramps

craig_h: Murf, most the food actually isn't bad at all

jameson411: i need to do cardio exersise and I love swimming (used to be pretty fast myself).  Just wondering what kind of issues that KD sufferes have with swimming

craig_h: but I found I can't cheat at all on it, cause then I can cheat again, and again

Murf: Craig thats good to hear, maybe it will work

TerryW: Any diet that lets me eat chocolate is a diet for me (Commercial)

TerryW: LOL

jameson411: ya, i would get a lot of leg cramps even when I was a teenager on the swim team...

Murf: LOL

craig_h: as a teenager, I would wake up screaming with claf cramps

craig_h: calf

MICH: Swimming is good...only having been a good swimmer in youth... bad if over do it

TerryW: I just thought everyone got the leg cramps. I never suspected anything

jameson411: i hate claf cramps... those are the worse ;-)

Butch: So long for now. Hope you all stah helthy till next we chat. Bye.

craig_h: I get toe cramps now

Butch has left the room.

Murf: Jameson - You need to come to the KDA conference in Las Vegas next yr.

TerryW: I would get terrible cramps in my stomach muscles to wher it looked just like a scene from the movie alien

TerryW: would knot up and push out 2-3 inches

craig_h: Merry Christmas and a Happy Healthful New Year

Murf: Terry - LOL

jameson411: i'll look into it... i've always wanted to go

TerryW: those cramps killed

jameson411: vegas that is, not a KD conf

MICH: I would say cramps near stomach were my first signs of KD decades ago...when I didn't know what KD was

Chuck has left the room.

Murf: Nov 6-8th 2007

TerryW: OK all, we have a few minutes left in chat

craig_h: later y'all

TerryW: then i will save the transcript

Murf: Craig -Take care

craig_h has left the room.

TerryW: Murf My mom is planning on going to the next KD conference

TerryW: she lives in Vegas

Murf: Jameson - We're going early and spending a week

Murf: Cool

jameson411: I'll save the vaca time :-)

TerryW: mybe even my brother will come

Dart!: A pleasure being with y'all again. Terry, I hope that Susanne is soon over her 'flu!

TerryW: OK everyone,  Have a goo one

TerryW: good

jameson411: bye all,  thanks for being here...