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Kennedy's Disease Chat Transcript   02-17-2007

Topic:  Positive Thinking, Changing your Thought Process

Host: Terry Waite


Chat Participants:

TerryW
Jameson411
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 This email address is being protected from spambots. You need JavaScript enabled to view it. 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. This email address is being protected from spambots. You need JavaScript enabled to view it.

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

END CHAT

Chat Participants:

TerryW
Jameson411
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 This email address is being protected from spambots. You need JavaScript enabled to view it. 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. This email address is being protected from spambots. You need JavaScript enabled to view it.

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

END CHAT