| Kennedy's Disease Chat Transcript 2-17-2007 Topics: Topic: Positive Thinking, Changing your Thought Process Host: Terry Waite | ||||
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Chat Participants: TerryWJameson411 MICH butch Duane Dart! Robazbob Craig_h Apache KellyC billeric Dean BEGIN CHAT
TerryW: Hi all jameson411: hello! Duane entered the room. TerryW: Sorry I messed up on the date Duane has left the room. MICH: Good Morning Terry jameson411: np Dart!: H'lo Terry - let's hope that this is a good day for All! TerryW: I was busy doing so many things that I missed changing the date MICH: I didn't notice any date mess up? TerryW: Hold on let me check robazbob entered the room. Dart!: You do just fiiiiiiine, Terry, and it is good to have you aboard! And yes, what date? TerryW: The subject said the 17th but the text in the message read the 3rd TerryW: the KDA chat reminder Duane entered the room. Dart!: It worked here! TerryW: hi duane TerryW: hi rob and Jameson MICH: Robazbob, is Peoria near Phoenix? Duane: hello all, TerryW: mich TerryW: roll call Duane: here robazbob: Peoria is about 10-12 miles west of Phoenix so yes it's close TerryW: Jameson I see you mentioned something about the personal stories above before I came in? what was it about jameson411: just wondering if dart or mich were on there TerryW: oh TerryW: ok jameson411: i plan on putting one up once i tell my family TerryW: anyone can type up their story and I will add ut TerryW: ok Butch entered the room. TerryW: I am sure glad I don't live back where all that heavy snow is Butch: Good morning all. How are you all doing today? robazbob: me too Duane: it has been awhile since I participated in a chat I feel like a newbie...so many new names TerryW: doing good jameson411: i'm just glad that i can still shovel... :-) Apache entered the room. TerryW: I loose balance when I use a shovel robazbob: me too Butch: It sure was good the last chat to have 24 people on the chat. Dr. Kurt sure brings us out to chat. TerryW: Yep MICH: I loose balance even before the snow comes and it gets below freezing...muscles must freeze up Duane: i missed the fischbeck chat how was it? robazbob: that's one of the reasons I moved to AZ TerryW: It was good duane, the transcript in on the web site Duane: ok TerryW: transcripts page MICH: Rob, where did you live before AZ? robazbob: born and raised in New Hampshire jameson411: me too craig_h entered the room. jameson411: i grew up in portsmouth.... TerryW: hi vraig TerryW: craig robazbob: I grew up in Hampton jameson411: neighbor! craig_h: Howdy jameson411: when did you leave? Butch: Here in Penna. it is very cold and the little snow we had all turned to ice. Much harder to deal with than snow. robazbob: What year did you graduate high school jameson411: 1991 jameson411: u? TerryW: so what does everyone do to snap themselves out of a down mood to think more positive robazbob: I graduated in 84 and moved to AZ 1999 Duane: change meds...lol jameson411: Terry, I think about what i still have... jameson411: rather than what i've lost kellyC_ entered the room. billeric entered the room. Dart!: I think about all those poor jiggers in various parts of the world that have life tougher than I do. jameson411: sappy i know craig_h: terry, anywhere I go, I see people in worse condition than I am. That's when I become grateful for what I do have. robazbob: that's a great outlook very positive Apache: I get out and do something that I enjoy and am still able to do. MICH: I try to keep busy to avoid moods... but the glass is getting more than half empty so I occationally let off steam Duane: try to stay active during the day, look forward to springtime and working in garden Butch: Terry--most times talking with other KD'ers about problems we share, lets us know that we are not the only ones dealing with these problems. TerryW: How do you deal with things that need to be done on your property or around the house projects that are hard to do or you can no longer do? billeric: Good morning guys from sunny and warm Arizona jameson411: and greetings to you from sunny and freezing CT robazbob: what part of Az billeric? craig_h: hire it out Apache: Good morning Bill. It is a beutiful morning Dart!: There are advantages to having a heavy-duty son-in-law living close by. billeric: Sun City robazbob Apache: I live in Apache Junction/Gold Canyon TerryW: Does anyone else find it hard to hire out work knowing that you should be able to do that project. That is the problem I am having MICH: Bill, you're one of three making us jealous of that AZ weather Duane: rely on family to help with tasks. was hard at first to ask for help, not a problem now. my brother is glad to help and we enjoy each other's company robazbob: I live in Peoria right down the road Butch: Terry--I don't see how you deal with all the tasks you have with the horse ranch you deal with every day. TerryW: feel worthless Dart!: Terry - for sure!! TerryW: I am trying to figure out how to deal craig_h: I'd rather hire it out (such as mowing the yard) than falling down dealing with trying to get back up TerryW: Butch it is getting real hard since susanne works all day late most times and is out of town a lot billeric: Lets get in touch robazbob Duane: I've learned what my limitations are and accept them. much better than doing too much and regretting it for a week or two craig_h: I just do the little things I can, and try to do them the best I can TerryW: My motto is not to Live like you are Dying but to live like you are trying TerryW: I try jameson411: nice motto robazbob: I would like that my e-mail is robarizonabob@cox.net and phone # is 623-444-9882 Butch: Good motto Terry. TerryW: I try to do it to test myself Apache: I agree with you Duane kellyC_: It's good to keep positive..... about things jameson411: sometimes I do have an attitude of "that's too hard, why bother..." billeric: hiring good help for small jobs is a problem. Sometimes worse than trying to do it yourself TerryW: Jameson we all get that way sometimes jameson411: but then we get a foot of snow and I get to clear the driveway while my wife watches from the den window :-) TerryW: yes bill exactly Duane: I learned 3 years ago not to mow the yard, I fell and almost chopped off my foot! craig_h: the last month has been (mostly) the best month I've had in last year and a half Butch: Terry--I still like Patricks motto--let your attitude determine your ALTITUDE. TerryW: I cant call a handyman and say I would like you to remove a bolt TerryW: LOL MICH: Terry, do you have a big dog, like a husky, that you could train to help out both you and the chores? Duane: terry buy a dremel tool...I found it works great for bolt or nail removal, better than a hacksaw TerryW: no dog here just cats & horses Duane: I have a big dog, all he does is help himself to food and dog biscuits- LOL jameson411: dogs are a lot to handle... my black lab keeps me on my toes (and sometimes sends me on my butt) Apache: I am fortunate to have a friend that lives upstairs during the week who is a big help doing things around the house that I can't. billeric: got it robazabob Duane: jameson, mine too. I learned quickly. especially after he took me down chasing a rabbit TerryW: I had a small leak under a sink at one of those twist turn off knobs and just getting under the sink and trying to lift my arms up let alone having the hand strength to hix the leak was almost impossible TerryW: what do you do in that situation when no one is around TerryW: other than panic jameson411: get a bucket to catch the water TerryW: LOL TerryW: I got it but it took everything I had Butch: Just like you did Terry--try to fix it but if you can't-=---so be it. TerryW: Do any of you still try to lift heavy objects jameson411: then a little prayer of thanks... Duane: call the fire department...they have to respond jameson411: yes :-( billeric: I make sure i have a stool around before I ever get down. I need to get my knee up on something to get the rest of the way up. TerryW: It is good to lift objects that are not real heavy but the max that you can handle to keep your mones in condition Butch: Every thing I lift is a heavy object. LOL MICH: Lifting my own arms or putting on a coat is exercise enough jameson411: mones? TerryW: or the bones will wither away and break easily TerryW: sorry finger nymb TerryW: numb TerryW: see ") Duane: no heavy objects here. jameson411: lol kellyC_: LOL jameson411: I am in the beginning stages, so my struggles are still very minor jameson411: stairs are now a struggle... especially if I'm carrying something TerryW: Just lately I have progressed to this stage jameson411: but I can do it robazbob: no stairs for me anymore about a year now TerryW: I know they will find a treatment for this, it's just a matter of time & funding Butch: Dealing with situations that we can't control are depressing. Depression often excellerates conditions of KD. Apache: I even have trouble with 4-inch curbs TerryW: Yes Butch TerryW: me also Apache Duane: learn your limitations and don't over do it. then your not disappointed. TerryW: I have to use a parked car to get up the curb robazbob: me too apache I have to plan out any path before hand billeric: I find walking in the swimming pool is actually fun verses walking otherwise is not fun. TerryW: I am afraid that i will get hit by some owner someday Duane: me too. Apache: Me too Terry Duane: only if you scratch their car Terry jameson411: who gets muscle knots? jameson411: and what do you do about it? kellyC_: i get them alot... TerryW: Jaemeson that happens in the beginning stages mostly Apache: Stretch kellyC_: stretch them jameson411: ok TerryW: some have them later also but not as often robazbob: mine started in high school back in 84 jameson411: i'm not talking about cramps, that i've been handling since high school... TerryW: FIrst cramps I remember were in 4th grade TerryW: running the 440 TerryW: severe cramps robazbob: feels like the muscle is trying to leave your leg TerryW: I thought everyone got them Butch: Terry--you have a great memory--running the 440---WOW. TerryW: I could run the 100 yard dash fine, in fact I was the 2nd fastest in the school jameson411: I'm talking about how the muscles get into these hard knots for days, weeks, months on end... they don't hurt, its just weird. kellyC_: Actually I know a fellow KD'er who's in his 70's and he never had muscle spasms ? weird i thought? TerryW: Jameson how old are you again? jameson411: I remember playing soccer... running for hours at a time :-) ahhhh those where the days jameson411: 33 TerryW: ok Duane: like restless legs, urge to move them or walk around. can't sit or lie still? jameson411: I have restless legs big time Duane: do you take mirapex? billeric: Those old buggers with K.D. are pretty sturdy Kelly! jameson411: never heard of it kellyC_: LOL..... yup for sure bill Duane: that's what dr prescribed. check with your dr...it works for me jameson411: anyone suffer from regular acid reflux? robazbob: I do too even standing still they want to move does anyone get what I like to call clown feet when you are tired and your feet slap the ground jameson411: lol jameson411: i can relate TerryW: not here rob\ MICH: Jameson, In high school decades ago I was both a soccer player and swimmer...and much later I was a logger for a summer...so good strength til the 40's... and in mid-forties also got acid reflex jameson411: my good strength days ended in my late 20's robazbob: me too jameson TerryW: I remember in the beginning stages in when my legs would feel like they were on fire after doing anything TerryW: hot to touch TerryW: Lactic acid burn kellyC_: yup know the feeling terry.... TerryW: I no longer get that billeric: I was in my 40's when I first noticed strength loss. Couldn't do push-ups any more. Duane: mine feel numb after standing or walking...don't have diabetes kellyC_: Once the muscle spasms are GONE!.. then motor funtion is a problem..Anyone can quote me on this if they like? Duane: all i can do is push away from the table Butch: How many have diabetes---type 1 or type 2? robazbob: I need chairs with arms on them to get out of that's why I bought a counter height dining set billeric: wish I could do that Duane! craig_h: only found out I'm diabetic (type 2) about 2 months ago, since starting meds, I've felt better than in 18 months MICH: I don't have diabetes but my wife does, do you Butch? craig_h: I bought that type table also rabazbob Butch: Yes--I have type 2--controlling with mediction. Duane: Terry, I urge any participant that is experiencing depression to visit with their dr. Even if they currently take anti-depressant. Maybe time to change. It worked for me. Apache: I don't have diabetes, but my Dr. told me to watch my diet because KDer are prone to get it. robazbob: I have gained alot of weight since going on anti-depessants kellyC_: Apache? thats what I hear to from PPLE? TerryW: I just bought a strange contraption that I have not received yet that is a seat that you strap to your butt that has a pole that looks like it is coming out of your butt. It was mainly used by farmers milking cows, it adjusts from 13" - 18" in height and has a spring at the base. It will allow me to work in the garden and get up and down hopefully Duane: I've gained 10 lbs since I changed anti-depressant. I feel much better. TerryW: Has anyone see these Apache: I asked my Dr. to give me something to help me loose weight and he prescribed an anti-depressant jameson411: terry, it sounds useful... craig_h: Terry, I'd like to know how that works when you get it TerryW: I will let you all know once I get it robazbob: which one apache? Butch: Remember terry--the pole goes AWAY from your butt. LOL TerryW: LOL Duane: no terry.; I found a plastic garden stool / bench that has handles to help me up from kneeling position. Duane: good one butch TerryW: those are good also Duane billeric: I just got my first lift chair. Fells like living in luxury. Apache: My primary care physician, not my neurologist MICH: I'm close to needing a walker that has some kind on hydrolics for lifting you off the floor TerryW: Duane I have areas in the center of the garden wher I can't place a bench or it would hurt the plants kellyC_: WELL I HAVE TO RUN.... JUST GOT A PHONE CALL... SEE YA ALL... NEXT TIME... Apache: Terry, sounds like a pogo stick for the butt. LOL TerryW: MICH I do the baby stand jameson411: bye kelly kellyC_ has left the room. TerryW: I look like an infant learning to stand Butch: So long Kelly--stay healthy. Duane: good point...let me know how the pole works...I get down and need help getting up, as all of us do. robazbob: when I could get up that's how I looked as well Terry Duane: I know my neighbors think, poor ole drunk guy...if they only knew. TerryW: LOL robazbob: I was known as the drunk guy at bowling due to my falls Duane: are you sure they were'nt bud lite falls TerryW: Duane, that reminds me. WHen I go in storesI wobble back and forth when I stand due to balance issues and I am always wondering if people think I am smashed LOL robazbob: Well maybe some times but not always lol Duane: you know it. Apache: MICH, My motorizwd chair lifts 6-inches. When I fall, I get on my knees with my arms and as much of my weight as I can support onto the seat of the chair, then lift it the s-inches. It helps me get back on my feet billeric: I fell this week trying to play golf. Fell on the green. Didn't get hurt but sure felt foolish. TerryW: BEaches are a whole different problem Duane: i hope you didn'[t tear the green TerryW: trying to get out of the water at the beach is almost impossible TerryW: very very hard robazbob: I laugh most of the times I fall people say it looks like I meant to fall (I am good at it) Butch has left the room. Duane: I have much problem walkin on uneven surfaces. would not try the beach Butch entered the room. billeric: didn't look duane. only thing I could think of was, was get away. TerryW: Sand or Mud is a no no to walk in Butch: Sorry--got bumped. Duane: when I fall I have to crawl to something I can use to pull myself up. TerryW: I know that Duane MICH: Apache, I have a Jazzy powerchair with lift but I once broke off one of the arms trying to get back on it and can't seem to find the right angle anymore, so settle for one or two passers by getting me up TerryW: I have fallen under my horses feet many times TerryW: I have been lucky so far craig_h has left the room. Duane: be careful...they may get tired you lying underneath them. jameson411: a few weeks ago, a co-worker gave me a playful push in the back... i went down like a sack of potatos at a french fry convention Dart!: Terry - they don't spook on you? Somehow, animals seem to undertand limitations of their owners. Butch: Sometimes leaning forward to give or get a hug can almost put you down. Crazy isn't it? Apache: Fortunately, my friends know that I don't need any help falling TerryW: Dart! they know something is wromg with me I think robazbob: after the chat on the 3rd I went to get the newspapaer and the driveway was wet and boom down I went Duane: My dog likes to lick my legs. But I think its cause he wants a biscuit TerryW: my driveway is gravel jameson411: my puppy is oblivious to my limitations... he'll pull my down a hill and turn about and lick my eyeballs TerryW: not much concrete here Duane: gravel sure is hard on the ole knees TerryW: lol jameson jameson411: my dog is a joy... MICH: Terry, can you put some patio blocks for some steps to avoid the gravel... gravel can wear me down for a long time billeric: I really feel naked walking without a cane. I know it has helped me prevent a fall or two. TerryW: I have to wear ankle high boots to walk on gravel or my ankles give side to side robazbob: I have a 110lb puppy that knows my limatations and that I can not catch him to scold him when he chews on things Butch: Jameson--you have to get him to pull you UP the hill. Going down is easy. TerryW: 110 lbs, I would ride him Duane: LOL robazbob: short haired st bernard mastiff mix jameson411: WOW TerryW: Actually we are more of a risk going down a hill than walking up a hill TerryW: falling Duane: get a front end loader to scoop the poop ? TerryW: How is the slober Rob robazbob: I have a wonderful girlfriend for poop scooping I bought her the dog last may robazbob: the slober is not as bad as like Turner and hooch dog Butch: What would we do without our care givers. I hope you all have someone to depend on. robazbob: when small he would use me as a napkin Duane: Pets are wonderful therapy. I wouldn't trade mine for a million bucks. Maybe a billion though. robazbob: billion yes not a million though lol Butch: Duane--are you refering to Lori. LOL billeric: Got to go guys. Talk to you in a couple weeks. Stay upright. Thanks Terry. robazbob: my dogs know when I am in the blues and try to give as much support as possibkle and blam I am happy again Duane: My lab is 6 yrs last month. I worry about what I'd do when he's gone. billeric has left the room. Butch: So long Bill. stay hea;lthy. MICH: I can't even bend over to put water or food in a pets bowl... and even a wiener dog is too heavy to lift... so no pets although I'd love one... my wife has enough work just lifting me robazbob: I have to go but like the times I have chatted before I feel as good as possible thank you everybody Duane: I travel to DC in two weeks for followup with clinical trial. Hope the snow is melted by then robazbob has left the room. TerryW: Cats are easy, they just climb up your leg to you with their claws //10 Butch: So long Rob. Dean entered the room. TerryW: Hi Dean TerryW: you are tardy LOL Apache: I use a 1-qt water bottle to fill the dog's bowl Butch: Morning Dean. Dean: hay terry TerryW: detention for you Duane: My brother has two minature wiener dogs and a golden retreiver...thank goodness the small ones know how to jump. TerryW: Yep Duane, I don't think you want the retrever jumping up on you MICH: Dean, good morning, what part of PA are you from? Dean: How is everyone feeling TerryW: doing ok jameson411: under the weather, but in good spirits! Duane: fine here MICH: rolling along Dean: Folcroft, Pa A small town og about 4,000 right out side of Phila. Butch: Enduring the cild and ice. Butch: Cold Duane: burrrrrrr! no cold for me... Dean: The cold weather is good. It makes you forward of the warmer weather. Duane: yepper Dean: to not for TerryW: Today is going to be nice here. Outside day TerryW: 60's Butch: Dean--I am in Lancaster, PA. E-mail me. RonaldLou@comcast.net TerryW: warm in sun though Duane: nice thing about SE New Mexico, The snow melts about two days after falling. jameson411: same here, only it'll be in the 30's... much better than the 10's Apache: Supposed to be near 80 here today - beautiful Duane: Low 60's here Duane: Apache, where are you from? jameson411: if it reaches the 60's here this time of year, everyone cries "global warming!" MICH: high 50's today, but snow in Salt Lake on Monday? Apache: I am in the Pheonix AZ area jameson411: Course, when it drops below zero, no body says "global freezing" Dean: Ok Butch going to work now will have to get back to you. Duane: Jameson, I bet not...funny how that works... MICH: Dean, where do you work? jameson411: Dean, making up for arriving late by leaving early ;-) TerryW: OK all, just a few mins left officially but you can continue to chat if you wish Duane: Apache, I have a friend that recently moved to Phoenix...he loves it...moved from S Central Illinois Apache: Has he spent a summer here yet? Butch: Thanks for chatting today. Thanks Terry for hosting. Must go for now. Stay healthy till next we chat. Bye.. Dean: Mich i work at the Commodore Barry Bridge in Bridgeport, NJ Duane: Nope...but he's lived in SE NM for 12 years prior...gets hot here too jameson411: //63 Butch has left the room. TerryW: Thanks everyone
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