| Kennedy's Disease Chat Transcript 8-04-2007 Topics: Topic: Open Forum Host: Terry Waite | ||||
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BEGIN CHAT
Murf: Morning TerryW: Hey there norminstormin entered the room. TerryW: Morning Murf: Hey norman norminstormin: good morning Murf: How is Northern Ontario? TerryW: I am just trying to get going, early here norminstormin: very nice weather Murf: Terry - how the weather in California? TerryW: It has been Hot, A/C broke yesterday TerryW: A Large capacitor in the /C heat exchanger/compressor went bad Murf: 79 in Houston and the A/C works //1 TerryW: fixed now TerryW: I have a home warranty that I bought Murf: good Norman doesn't have to worry about A/C just heat!! TerryW: It pays off for me every year Murf: I do that too. pays for itself every year TerryW: yep Murf: Norman - the fishing should be getting good. are the bugs out in full force? norminstormin: lotsa black flies norminstormin: fishing is awesome Murf: yup , just like I remember it //2 TerryW: I had a man call me the other day that was 80 years old and was just diagnosed with KD TerryW: He did not show any symptoms until 6 months ago TerryW: Very strange Murf: really - wow TerryW: I told him he was kucky Murf: how old are you Norman? TerryW: lucky norminstormin: 44 Murf: ya, I'll say TerryW: he was a marathoner also Murf: Have you registered with Terry (KDA) YET? norminstormin: no i dont think so TerryW: so what is the hot topic of the day? MICH entered the room. Murf: wHEN WE GET FINISH jUST GO TO THE kda SITE AND jOINwhen we get finish just go to the kda site and join norminstormin: ok i will thank you TerryW: hi Mich Murf: it doesn't cost a thing but it allows us to find out how many KD'ers are out there and you can elect to receive up-dates if you want MICH: Good Morning Terry, Murray and Normin Murf: Morning Mich norminstormin: good morning mich Dart! entered the room. MikeG entered the room. TerryW: Hey Dart! Murf: Morning Dart Mike TerryW: mike norminstormin: hi dart MikeG: Morning norminstormin: hi mike Dart!1813 entered the room. MikeG: we finally got some sun in sunny Florida Murf: another dart ... morning TerryW: hmmmm? Murf: Looks like no rain in Houston for one day Dart!1813: G'morning All! Murf: they're calling for rain tomorrow TerryW: Will the real Dart! please stand up Murf: My contractor is working like mad out there to get something done MikeG: Tampa had over a foot of rain in three days! Dart!1813: The 'real' one does not have a 1813! TerryW: no rain here since Feb TerryW: we need it bad Murf: want some? Murf: I can't keep it out of the pool. TerryW: Have you been watching the bride tragedy? MikeG: we had the same problem until last week, Terry. TerryW: terrible Murf: ya bad luck MikeG: yep - Florida is now in the process of condemming bridges... Murf: they think there are 8 more to find TerryW: could have been way worse Murf: Bush just landed there TerryW: if the river was a deep river Murf: or if it was in the heart land Murf: Mississippi closed Murf: Market crashes TerryW: I hear that Michael17860 entered the room. Murf: Headline news for sure Murf: Hey Michael Michael17860: Hi All' TerryW: hi norminstormin: hello michael MICH: How are things in Paxinos?... what is a Paxinos? Michael17860: does any one have a trailer carrier for their scootter? TerryW: I have an external platform lift that hooks up to my receiver hitch MICH: No trailer, I use a Gmc Yukon for my powerchair MikeG: no - I carry mine in my van. Michael17860: Paxinos is in PA, and things are great here Mich. Murf: Mine goes in the back norminstormin: dont have a scooter just got a cane Murf: I need to get a trailor to haul 5 - 6 chairs to Las Vegas mjo5712 entered the room. TerryW: How are everyones Abdomen muscles, are they weak? when you bend down is it hard to straighten back up? Murf: Norman - you need a 4 wheeler and a skidoo Murf: //2 norminstormin: yes that,d be good Michael17860: I have been pricing them, ( the ones that hook up too the back of the truck) kind of salty..... MICH: Terry, for sure hard to get back up after bending MikeG: oh yeah - sometimes I can't get back up... need to help myself up with my arms.\ norminstormin: it,s very hard to straighten back up Murf: and a boat ... i'm jealous Murf: Me too mike norminstormin: have a tough time getting out of chairs Murf: I had to get a lift chair for the house Murf: It stands me up TerryW: I have found that long drives on windy roads is real hard on me due to your automatic reflex around corners to tighten up the muscles in the turns, I fet real sore TerryW: i Get Murf: Terry you need to get a Lexus TerryW: side support seats TerryW: ? mjo5712: ive been doing exercises 4 to 5 times a week and ;my back is always sore Murf: get Susanne to buy you one TerryW: LOL MICH: Murf... did you find that insurance or Medicare doesn't cover lift chairs anymore?? TerryW: I still drive my 1992 Toyota 4Runner, 200,000 miles and still runs and looks excellent, a little less power though Murf: I claimed mine on my flex account Michael17860: Mike G how are you feeling? MikeG: not bad, just a little sore in my lower back. Paula got a pedometer and started doing 10k steps a day so I got one and was surprised to find that I do about 2 or 3k steps a day in the house - without a cane. Murf: My pool will go on income tax and uncle Bush will pay for some Michael17860: Good for You........ MICH: For the Vegas Conference... what it exactly is the part about a dinner with Knights?? Josting? MikeG: how 'bout you? TerryW: Mike I was doing about 7-8 k a day MikeG: how long ago was that Terry? TerryW: but now Its is less since I got the Yamaha Rhino to get me around TerryW: 8 months ago MikeG: that's good. MikeG: I was surprised - I had no idea I was walking that far in the house... Michael17860: Not Bad over did some house work, and had to take it easy for a few days. TerryW: I have found that it is still good to walk as far as you can to keep the muscle that you have in tone TerryW: if you dont walk at all I found that it makes it worse mjo5712: does anybody still ride stationary bike for exercise Murf: It's a dinner show where you eat in the stile of Knights without knives or forks and watch (cheer) for your knight to win. King Aurthor stuff. It's the best dinner show in Vegas TerryW: I hear that Michael MikeG: that's exactly right Terry. TerryW: Murray is going to Joust on Horsback for us Murf: not me //10 TerryW: He is hgoing to use his can as a joust pole norminstormin: i gotta get some sort of exercise regiment cuz i cant even walk half a block without having to lean on something TerryW: cane TerryW: not Cann LOL Murf: LOL MikeG: Michael, I find that if I over-do, it takes me sometimes weeks to recover. Not good to to too much... TerryW: Norm, just take it easy Murf: and my Xterra as a horse norminstormin: i try to TerryW: do only what you feel is comfortable Michael17860: Mjo do you ride a stationary bike, how long do you do it for? mjo5712: i have a exercise regiment but it does'nt help the walking problems Murf: We start falling when we over do it kellyC_ entered the room. MikeG: mjo, I was told that a recumbent is better exercise for us. Murf: Hey Kelly Michael17860: I have been taking creatine and it help me recover alot quicker. norminstormin: does anyone have any problems with their arms mjo5712: i ride 25 to 30 mins 3 to 4 times a week TerryW: Downhill walking is most dangerous I think kellyC_: hi all! good morning! TerryW: hi Kelly Murf: Kelly meet norman both first Canadians kellyC_: hey terry! norminstormin: hi kelly kellyC_: Norman? from what province in Canbada TerryW: Bananas help norminstormin: ontario MICH: I've started to use a walker on the grass in our yard... and should try some walking in a pool... anything else is short distance... a few feet... arms for sure aren't very good... an blood test is showing extra creatine from muscle inflamation kellyC_: oh ok.... hi norman plz to meet ya am from Sask mjo5712: what is recumbent exercise norminstormin: nice to meet youtoo kellyC_: //1 ..TY Michael17860: I put a banana in my oatmeal every morning MikeG: a recumbent bike - the laid-back kind. MikeG: the only thing about a recumbent bike is I can't keep my feet in the pedal straps... norminstormin: the other day at work my left arm just went toatally weak could,nt even lift it over my shoulder Murf: Gary is also from Norther Sask but is not on this morning. He normally goes to the conferences so expect to see him in Vegas for sure. MikeG: they have several at the gym here in Sun City Center but I can't use them... :( mjo5712: my mid section is strong for exercise but i have to watch how over doing especially the wieghts kellyC_: yup i get like that alot Norman! esp when i do hard work with the arms then they just dont work! weak Muscles norminstormin: that gets like that lots now Murf: The only muscle in my body that is still strong is between my ears (I think) mjo5712: i picked my bike up at garage sale 30 dollars kellyC_: Dont do any Lifting or strenous stuff involving the Muscles.. Norm! or otherwise we pay for it ...lol mjo5712: ive had to repair it several times norminstormin: i was just bagging groceries and had to stop kellyC_: @times i cant hold a cup of coffee myself //15 Murf: Repetative work kills us kellyC_: yuppers Murf MikeG: mjo, you and Don & I need to meet and do lunch or dinner sometimes with our wives. Michael17860: Has any one tried electronic muscle stimulator? Murf: Like pulling a one armed bandit MikeG: we're only 20 miles or less away. mjo5712: im trying to get fit enough to operation on my knee MikeG: you ever eat at the Brandon Ale House? Murf: mjo5712: bad knee? Murf: Mine buckle and down I go! norminstormin: so does mine MikeG: Michael, my brother has - said it works pretty well. mjo5712: mikeg lets do lunch. anywhere Murf: I'm top heavey mjo5712: need knee replaced Murf: heavy Michael17860: Been think of getting one, But not sure..... kellyC_: LOL I now have a big belly myself... LOL.. never had that before//6 kellyC_: and skiiny little arms and legs lol Murf: Get a power chair first MikeG: my chiropracter used one on me when I was in Atlanta. Kinda weird getting shocked constantly... TerryW: Kelly, Like an olive on a toothpick? kellyC_: is that like a EMG? Mike? Murf: TerryW: LOL kellyC_: lol yuppers Terry MikeG: no - it's a pad that has electrods on it and the doctor uses it to stimulate your muscles. kellyC_: oooooooooo..ic.. ic... ok! MikeG: no needles... Michael17860: if it contracts the muscles, like they are working, it would seem to help. MikeG: EMGs suck! kellyC_: yeah i had that done before yup Murf: No needle on EMG any more MikeG: I think we all had to go through that trama... Murf: We get them every year in NIH for the trial kellyC_: Try going to spend 3 days in a Sleep Clinic.. LOL with all those wires hooked up to ur head lol MikeG: no needles??? mjo5712: has anybody had any major surgery Murf: This year was only an hour //2 kellyC_: yeah i had mine done at the NIH..... murf Murf: No they use electrodes now kellyC_: and here in sask a few tomes lol MICH: Amen to sleep studies... I failed for a CPAP... as I roll around too much... settled for oxygen concentrator Michael17860: Yes Mjo, Back surgery and sinus surgery. kellyC_: Really! Mich! bummer Murf: I have a CPAP too TerryW: They issued me a CPAP, I returned it because I roll too much TerryW: I now user nothing Murf: a lot of us have them or BIPAP's kellyC_: my test came back Inconclusive on the sleep study? they said i had this then they said i had that LOL//2 kellyC_: they had no Idea lol Murf: LOL Murf: they weere asleep kellyC_: lol yeah for sure Murf Murf: they will be talking about the trial at the conference this year mjo5712: michael any complications from being knocked out for operation Murf: Dr. Fischbeck will have an hr & half kellyC_: Si Murf... when is the study done @ the NIH soon I assume? Murf: mjo5712: you need to talk to your anistis .... the guy that knocks you out mjo5712: I hear some reading may come up falsely Murf: Another 1 1/2 yrs MICH: I just turned 61 about a week ago... body feeling it... blood not getting to large intestines so now using Metamucal and Aspirin for the 1st time in my life. kellyC_: Ic.. Ic.... ok ty Murf! MikeG: mjo, be sure to tell the anestisiologist that you have KD. Murf: I used Propofal 150mg TerryW: Mjo, print out the info on the KDA site on surgery and KD and giv it to them Murf: worked out better than what he was going to give me Murf: They always like that Michael17860: The only problem I had is when I had the sinus surgery done. I had blood cloths and they got stuck in my throat, and they had to suck them out. But as far as being knock out, and them bring me back it was no problem. I did tell them that I had MD and they knew what to do. mjo5712: yes i will look on the kda web sight. thanks all Murf: It's on the home page (about middle) TerryW: the yellow triangle kellyC_: Hey storminnorman,, you still working? norminstormin: yes i,m still working kellyC_: what do u do? norminstormin: i,m just a cashier now kellyC_: oh ok thats great! to hear Murf: As long as you can guys!!! (me too) we're lucky TerryW: Normin, how can you stand up for that long norminstormin: i used to to be a reciever kellyC_: yeah goop point terry Murf: stool norminstormin: they got a stool for me to sit between custumers TerryW: good kellyC_: Awsome! Norman Murf: I asked the same question last chat //2 norminstormin: my co-workers have been so supportive Murf: great minds think alike TerryW: :) MikeG: Well guys, I've got to go take care of disposing a safe for Pauline Mengel. When John passed away in '04 he didn't have the combination written down anywhere and Pauline had to have it ripped open. Now she has a 200# boat anchor in her garage and she has gotten quotes from $100 - $200 to haul it off. I'm going to attempt to pick it up with my chair lift (if it will do it) and haul it off to the dump. norminstormin: they,re always on me to help kellyC_: we have Dementia Murf lol is that KD related//2 kellyC_: just jokes TerryW: Wow mike Murf: Take care mike Dart! has left the room. Murf: LOL ya... TerryW: be careful Mike MikeG: ok, until next time - stay verticle MikeG has left the room. kellyC_: so are u takin any meds Norm and if u are what kind? Murf: My lift would handle it if I could get a good grip on it norminstormin: not taking anything kellyC_: oh ok TerryW: Just so you all know, TYPOS are always allowed in the KD chat room. We realize that our fingers always don't do what we tell them Murf: I often wish there was a camera on me ... like yesterday I got a new printer. 30 lbs on my desk 3 ft off the ground kellyC_: well folfs got to go here the ol- lady is having a garage sail..... Dart!1813 has left the room. kellyC_: folks i mean Murf: Take care Kelly kellyC_: you all take care see ya next time bye all Dart! entered the room. kellyC_ has left the room. MICH: Speaking of fingers... does anyone have a few that don't want to work? Murf: yup norminstormin: mine are slow but still work TerryW: right now they are doing ok because it is warm Murf: especially when they get cold or I use them too much TerryW: yep TerryW: I can no longer tie a hook on a fishing line Michael17860: Murf how do you get the Gov to help put in a pool? Murf: they cramp and stop working when I type too much (good for about 3 hrs) norminstormin: when i,m out too long i acan,t even put a hook on either Murf: Me neither terry //10 TerryW: Guess I need to hire a Hooker for that TerryW: I mean someone to tie the hooks on Murf: I need it for medical theraphy (exercise) Michael17860: what % are you talking about? TerryW: Fishing mjo5712: i can still tie a hook but sure does take a long time. fish quit biting Murf: has to be over 7% of your income TerryW: we can no longer tie a fishing hook on the line Dart!: That was pretty good, Terry, about the hook help! TerryW: TY Murf: then not sure what it works out to but you claim on medical expenses Michael17860: Thanks Murf: I have a prescription and I'm waiting on a letter for the dr. Murf: Your accountant can help you Murf: I don't know how that will work in Canada ... sorry guys Murf: you'll have to move to Texas where the weather is warmer Michael17860: I here alot about water theraphy, no one near where I live to get it. Getting a pool would help. mjo5712: warm wheather means more grass mowing Murf: This is bad but thats what the Mexicans do Murf: they cut grass for 25 bucks TerryW: Well everyone we are getting close to the end of the scheduled chat (5mins) you can stay on chat if you wish but I stop the logging of the chat at 30 past the hour Murf: you can't do it yourself for that Michael17860: But do they cut wood??????? mjo5712: i dont pay nobody for something i can still do Murf: I use natural gas //2 MICH: Grass cutting is my wifes job now Michael17860: OUCH Murf: mjo5712: good man (I can't walk any more) Murf: Michael17860: LOL mjo5712: i use a riding mower and wife does the trim Murf: That would work Michael17860: Well guy's see you all later, got to cut grass. Murf: TJ stil;l cuts his too mjo5712: for now it does Murf: LOL later Michael norminstormin: well i gotta run seeya all later take care Michael17860 has left the room. TerryW: See you all later Murf: Cya norman
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