| Kennedy's Disease Chat Transcript 9-15-2007 Topics: Topic: Open Topic Host: Murray Williams | ||||
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BEGIN CHAT 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!..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, 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
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