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Kennedy's Disease Chat Transcript 09-15-2007
Topic: Open Topic
Host: Murray Williams
Murf: morning Terry
TerryW: Just got up a few min ago
Murf: you need coffee?
TerryW: I need something LOL
Murf: I'm on my 2nd pot
TerryW: Don't drink coffee
TerryW: Waiting for pain pilll to kick in
Murf: mine have already
Murf: Angela wants me to ask my doc about quinine
Murf: the malaria drug
TerryW: John C knows all about Quinine I think
TerryW: Quinine Sulfate?
Murf: may work
Murf: don't know
Murf: she just said it may help
Murf: with muscle pain
TerryW: Be right back, bathroom break
Butch entered the room.
Murf: I just bought quick books pro 2007 - $129
Gary_KS entered the room.
Murf: Hey Ron
Murf: Morning Gary
Butch: hi guys
Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City. It is cloudy this morning.
Murf: Terry had to go to the WC
Murf: 78 and sunny in Houston for once
TerryW: I am back
Murf: QB pro is for business more than personal
TerryW: Hey Gary, you back from Japan now?
TerryW: I just read above LOL, I guess so
Gary_KS: Terry, Yes, I had a good trip. Thank you.
TerryW: My new dogs are gettin big
Murf: thats ok I've got a business to but will have to buy a personal version I guess
TerryW: They ar 45 lbs and 4 months old
Murf: Ron what happened to the pictures you weere going to e-mail
mobiusloop entered the room.
Butch: sorry---i'm on phone
mobiusloop: Good morning!
Murf: Morning mobi
TerryW: If I fall down now the dogs can do one of two things, either drag me to safety, or lick me to death LOL
TerryW: My dogs like to eat the Horse poop, so licking is out
mobiusloop: missed the last chat. was there any new info presended by the doctor?
Murf: I needed to hear that Terry lol
TerryW: I call it the way i see it
kellyC_ entered the room.
Murf: Morning Kelly
kellyC_: good Morning Murf
Murf: cold up there yet?
kellyC_: its getting there now yup it was 16 yesterday.
MICH entered the room.
TerryW: I have been having real problems at night with the dry drowning lately, I can hardly get to sleep, I keep choking, about a dozen time each night
TerryW: I wonder what is going on
Murf: You'll need to come to Vegas for a break in Nov
TerryW: I will be there
Murf: Sorry Terry
kellyC_: yes Murf?
TerryW: Hi Mich, everyone I missed
MICH: Terry, I had dry drowning only a couple times this week during the day
TerryW: I hate it
Murf: Kelly - you'll have to come to Vegas if Canada gets to cold
mobiusloop: Terry, I have the same problem. I have to lay on my side to avoud sinus draining
kellyC_: Ihad a few to last week got up choking really bad
TerryW: It makes me feel like I am going to die soon
kellyC_: LOL yuo murf it would be nice..
TerryW: If I get a cold I feel I am done for
TerryW: I hope to not get sick
Murf: I'm healthy as a horse LOL
kellyC_: my docter wanted to put me on Zoloft lol I had told him... no thank you!.. I'am not depressed!..lol
Murf: Just can't walk .... legs hurt ..... etc ...etc
MICH: I wish there was a little more know about the chemistry of KD so we might have a better idea how reactions are caused particularly with daily drugs we take interacting with our CPK
jameson411 entered the room.
jameson411: hey all!
Murf: Kelly I just went off Zoloft and now on Cymbalta best thing I've done in a long time
jameson411: good morning
mobiusloop: I think maybe if I address the snoreing problem I can prevent the chocking
TerryW: I will be right back
Murf: Morning James.
kellyC_: is that rite murf?
kellyC_: did the Zoloft do anything for u in regard's to KD?
mobiusloop: What do you take the Zoloft for?
kellyC_: I didnt want to take it My GP wanted me on it for some reason?
kellyC_: Zolofti said no thank you!
MICH: Anybody perfer a Internal Medicine doctor, or MDA doctor over a GP or Family doctor?
mobiusloop: What symptoms does the Cymbalta help?
TerryW: Back again
kellyC_: Terry I hope those choking spells leave you from here on.... there has to be something or some kinda med to help us with those choking spells anyone know of something etc..Meds etc...
TerryW: thak you, I hope so
mobiusloop: A Nurologist here in Yakima identified my problem and then backed off with "nothing I can do". GP reads the lititure and then offers nothing.
MICH: I don't think an inhaler would probably help esphophagile (sp?) spasms? (dry drowning)
TerryW: Mich I am not sure that will help
TerryW: worth a try
TerryW: Everyones so quiet
mobiusloop: Would it be possible to assemble all the pertinate remarks by doctors on these chats and e-mail it to everyone?
kellyC_: Gosh I have been having throat spasms to! Actually I have alot of problems in my Neck throat.odd time speech.. My Tongue curling up on me... lotsa problems there as appose to the legs and arms... spasms etc..
MICH: Has anyone had their CPK or CAG levels checked more than once?
mobiusloop: not me!
kellyC_: I have not to Mich? think we should? have that done?
mobiusloop: I wonder too
TerryW: Mobius, That would probably take a bit of time. Right now I am swamped with lots of projects here at the house and it takes me great effort to just take care of those things. The most I can do now is continue to post the chat transcripts for all to read through. I am sorry I wish I could do more.
mobiusloop: tthanks for your efforts Terry
TerryW: You are welcome.
MICH: Well the reason I brought it up is that alot of cholesterol medicines say they can have side affects for the muscles and I guess CPK (muscles leaking enzymes) might be able to measure there affect??
TerryW: It has gotten really frustrating lately for me because it seeem that doing 1 simple task around the house takes the energy righ out of me for a few hours
mobiusloop: But I keep thinkimng that there may be a bit of info out there that I'm missing
Butch: I notice lately that when I am mowing the grass that my neck gets tired from holding up my head. I guess that it is from the bouncing around on the lawn mower. Anyone else experencing this type of problem?
TerryW: Mobious, have you read the transcripts of the doctors chats
mobiusloop: Yeah, sore neck muscles
kellyC_: Yes Butch,, I have alot of problems with the neck like that to
mobiusloop: Terry, No I need to do that
kellyC_: Swallowing food backing up in my throat etc....
Gary_KS: Mich, it is interesting for me because I am taking cholesterol medicines.
TerryW: I have a power drive mower but I can no longer mow hardly, the turning of the mower does my legs in and they turn to mush after a few runs back and forth and then they collapse
TerryW: Susanne Mows now
MICH: Does anyone use a ramp to get in and out of their house (avoiding steps)? Gary what cholestrol medicine do you take?
mobiusloop: I have to sit up or lean forward a bit to swallow anything
Butch: Seems like we must always face the challenges. Right?
mobiusloop: Beats the alternative
TerryW: Susanne was just diagnosed this week with Fibromyagia
Butch: Ramps are definately easier than steps,
kellyC_: its Weird tho? i have had a throat Assessment done twice one @ the NIH and one here in Saskatoon and they says its ok? I just dont know?
kellyC_: or dont understand
Gary_KS: Mich, I am taking Tricore 145MG/day and Niaspan 750MG/day.
kellyC_: Gosh sorry to hear about Sue there.!
TerryW: Susanne is worried now that she will not be able to do the things that I can not
Butch: Terry--you must keep Susanne helthy. She is your guiding light,
TerryW: I need to buy that book "Why bad things happen to Good people"
TerryW: Seems not fair
Butch: Wealll need some type of care giver. Either family or friends.
TerryW: Must be in gods plan someway
Murf: I'm back
MICH: Yes, wives give us alot of extra support... and we need to not let them go overboard for their sake
Butch: Sometimes the challenges seem too much. But, they say that God only gives us what we can handle.
Murf: Phone call from the grand baby
TerryW: like the country song says "God gave us mountains so we can learn how to climb"
TerryW: By Lonestar
mobiusloop: I am very grateful to have a lovely lady of 76 who is healthy and strong as well as pretty.
Butch: Has anyone heard from Chas and Anna Lea lately?
TerryW: Not lately
Murf: I'm greatful I live in a country that accomodates me and that I have KD and not ALS or something worse
Butch: I must go for now. You all stay healthy till next we chat. Good bye.
TerryW: U to butch
Butch has left the room.
Murf: P s Grande Prairie Alberta is +8 C
Murf: se ya Ron
mobiusloop: A nice 69 degrees here in Yakia
Murf: sorry guys I must have missed something
MICH: Murf is it still wet in TX and Jameson, hows the weather?
Murf: 81 and sunny at the moment. Humberto did not leave much rain here
jameson411: wet and chilly.....
jameson411: i love it after a week of hot and humid
Murf: It went through the same place Katrina did two years ago
MICH: We're still in the 80's in SLC
TerryW: Jameson, you feeling Blue today?
jameson411: my favorite color... but not my outlook
TerryW: that is good
mobiusloop: It's a stand out!
TerryW: Murf, you gonna save the chat? I need to run and get some stuff done
mobiusloop: Yeah, I think breakfast is ready
TerryW: thanks, bye everyone
MICH: I'm not looking forward to the cold and snow...last year I leaned against the house to get out the door but this year I'll have to crawl to work if I don't have my son-in-law build a ramp
jameson411: makes reading who says what easier... i wish ya'll pick some color :-)
TerryW has left the room.
Murf: How about black? lol
Murf: my name is green
jameson411: with red names? Sounds great
Murf: xmas is coming
jameson411: is santa good to someone?
Murf: green & red
jameson411: quiet this week.
Murf: I hope to have my pool ready by then
jameson411: after 2 months of work, our house is finally resided.
Murf: I missed 1/2 the chat with my grand daughter
jameson411: grey with maroon shutters. It looks soooooooooooooo good
Murf: right on James
Murf: it's worth doing up your house once in a while
jameson411: we did lots of work inside too. It was exhausting but worth it.
jameson411: we had 50 year old, mint green aluminum siding.
Murf: has any one had problems with this subprime thing?
MICH: Jameson, did you do alot of the painting and did you get any help
jameson411: Heidi and I did it all.
jameson411: we have a small house so it wasn't too hard
Murf: no way I could do that
kellyC_: well got to go All see ya next chat bye all
kellyC_ has left the room.
jameson411: the wall prep and sanding was the hardest
Murf: Stay warm Kelly
mobiusloop: Bye guys, I smell bacon!
Murf: mobiusloop: cya
jameson411: 30 minutes of sanding and i have trouble holding my arms up
jameson411: l8r mobius
mobiusloop has left the room.
Murf: I've been doing some work too. telling my contractor what to do
MICH: what does 18r mean?
Murf: good one
jameson411: thank you
Murf: do you text?
jameson411: laughing out lound
jameson411: no, but i am a teacher of teenagers
Murf: Not much
MICH: Sorry... I'm slow this morning... youall have a great week
Gary_KS: I got go. Have a nice weekend. Bye.
Gary_KS has left the room.
jameson411: bye gary
Murf: c ya guys
jameson411: bye murf
Murf: must have been some thing I said
jameson411: you;re a funny guy
Murf: whats happening ?
MICH: Going to my 11 year old grandsons football game shortly...
jameson411: NE Patriots... much shame
Murf: cool, my grand daughter is 4000 miles away
jameson411: I'm a loyal fan and bummed
jameson411: i don't have grandchildren
MICH: but it might be just the tip of the iceburg in sports
jameson411: my daughter is 15.... hopefully still 10 years away
Murf: this one will be the only one so is very special
Murf: lol James you never know YNK
MICH: Jameson, how does your daughter spell her name...
jameson411: I better be at least 10 years away from being a grandparent
Murf: 25 is old these days you know
MICH: I'll be thinking of her everytime I here about lacrosse
jameson411: many couples are waiting till hey are in their 30s before having families....
jameson411: she is excited for it this year
Murf: dream on my friend LOL
Murf: as long as she finds love and is well treated. You can't ask for more
jameson411: that is my wish.
MICH: So Murf, what city is 4000 miles away?
Murf: may a little older
Murf: Grande Prairie Alberta
jameson411: got 2 go fellas. See ya l8r
Murf: cya James
Murf: take care
jameson411: ty, u2
jameson411: bye Mich
jameson411 has left the room.
MICH: Have you gotten to go up there very much... I'm going to go to my grandkids in AZ next week
Murf: GP is 400 miles north of Calgary
Murf: 3/4 of the way from the boarder to the 60th paralell
Murf: south east of Anchorage
Murf: wayyyyyyyy up there
MICH: Well you take it easy and talk to you in a few weeks... wow that a long trip even by air
Murf: cya Mich
Murf: Las Vegas in NovEND CHAT