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Kennedy's Disease Chat Transcript 12-16-2006
Topic: Open Forum
Host: Terry Waite
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
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
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.
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.
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
TerryW: to pull them back up
TerryW: I hat that
Dart!: That sounds a bit familiar!
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
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.
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
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
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
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
Murf: Thanks Ron
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
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_: lol...it 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
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
TerryW: do you have KD?
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)
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
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
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.
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
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
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: Jameson--what do they do for you?
johnweeb: i have a PT who comes to our home/....like 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
johnweeb: MOST NEUROS DONT HAVE A CLUE
Murf: Wow how is that?
MICH: JohnW...what part of LA are you IN?
jameson411: I don't need any aids yet
TerryW: Dozen???? I find that hard to believe
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
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)
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"
Murf: Where did the yr go?
johnweeb: off to do errands and shop. happy holidays to you all!
Murf: I need to get this going again Craig
TerryW: bue John
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
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
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
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)
jameson411: ya, i would get a lot of leg cramps even when I was a teenager on the swim team...
craig_h: as a teenager, I would wake up screaming with claf cramps
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
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
jameson411: bye all, thanks for being here...END CHAT