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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

Murf: tea?

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

Murf: chairs

mobiusloop entered the room.

Butch: sorry---i'm on phone

mobiusloop: Good morning!

Murf: Morning mobi

TerryW: Hi

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

Murf: 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: Kelly

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!

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,

TerryW: spelling

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.!

kellyC_: terry!

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: Yes

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

mobiusloop: Yakima

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: lol

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

Murf: yup

mobiusloop: Yeah, I think breakfast is ready

TerryW: thanks,  bye everyone

Murf: cya

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

Murf: //15

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

Murf: lol

MICH: what does 18r mean?

jameson411: later

jameson411: l-eight-r

Murf: good one

jameson411: ty

jameson411: thank you

jameson411: lol

Murf: do you text?

jameson411: laughing out lound

jameson411: loud

jameson411: no, but i am a teacher of teenagers

jameson411: sooo

Murf: nm

jameson411: nm?

Murf: Not much

jameson411: oh

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: mhbstis

jameson411: ?

jameson411: lol

Murf: must have been some thing I said

jameson411: :-)

Murf: cya

jameson411: yafg

jameson411: you;re a funny guy

Murf: lol

Murf: Mich

Murf: whats happening ?

MICH: Going to my 11 year old grandsons football game shortly...

jameson411: fun

jameson411: NE Patriots... much shame

jameson411: cheaters

Murf: cool, my grand daughter is 4000 miles away

jameson411: I'm a loyal fan and bummed

jameson411: i don't have grandchildren

jameson411: yet

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

jameson411: Ariah

jameson411: A-rye-ah

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: cool

jameson411: she is excited for it this year

Murf: dream on my friend LOL

jameson411: lol

Murf: as long as she finds love and is well treated. You can't ask for more

jameson411: yes

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 Nov