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Kennedy's Disease Chat Transcript 02-17-2007
Topic: Positive Thinking, Changing your Thought Process
Host: Terry Waite
TerryW: Hi all
Duane entered the room.
TerryW: Sorry I messed up on the date
Duane has left the room.
MICH: Good Morning Terry
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: roll call
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
jameson411: i plan on putting one up once i tell my family
TerryW: anyone can type up their story and I will add ut
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.
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
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
robazbob: I grew up in Hampton
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
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
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
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: 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
TerryW: or the bones will wither away and break easily
TerryW: sorry finger nymb
TerryW: see ")
Duane: no heavy objects here.
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
kellyC_: stretch them
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
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: 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
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.
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
robazbob: short haired st bernard mastiff mix
TerryW: Actually we are more of a risk going down a hill than walking up a hill
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.
Duane: burrrrrrr! no cold for me...
Dean: The cold weather is good. It makes you forward of the warmer weather.
Dean: to not for
TerryW: Today is going to be nice here. Outside day
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
Butch has left the room.
TerryW: Thanks everyoneEND CHAT