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Kennedy's Disease Chat Transcript 09-1-2007
Topic: A Question of Balance
Host: Mike Goynes
MikeG: good morning all...
norminstormin: good morning
TerryW: Hi Mike, I did not think I would be able to make it today but our visitor is still sleeping LOL
JoeK entered the room.
TerryW: Hi Joe
MikeG: hi Joe
TerryW: Susannes Dad
TerryW: up for weekend
JoeK: Goodmorning from North Carolina
MikeG: I'd be sleeping too oat 7:30
TerryW: am usually up by 6:30
TerryW: in bed by 8:30
MikeG: where in NC, Joe?
MikeG: me too
JoeK: Greensboro and Highlands
TerryW: I may only be in chat for part of the morning session today
Butch entered the room.
MikeG: Great - Greensboro is probably beautiful this time of year. I loved to go driving on the Parkway near Ashville when we lived in Greenville, SC.
Butch: Good morning guys. How are you all doing?
MikeG: ok, Terry - I should be able to cover the entire chat - nothing planned until later today.
MikeG: Hi Butch - doing fine here in Fla.
Gary_KS entered the room.
MikeG: Morning Gary
TerryW has left the room.
Gary_KS: Good morning! Gary Uchiyama ffrom Kansas City. It is a nice day here.
Butch: Hi Gary--guess you guys are still having the heat.
MikeG: We could use some of that rain that you guys had over here in Florida - still bone dry here.
norminstormin: nice day here too starting to get cool though
Gary_KS: Yes, it is still hot weather here, Butch.
MikeG: how cold is it up there now?
Butch: My brother-in-law lives in St. Louis so I know you are having similar weather.
norminstormin: 12 degrees f
JoeK: Mike-- Highlands elevation is 4181 feet and most of the time it is cooler then Ashville
emeyerth entered the room.
emeyerth: good morning group!
Butch: JoeK where are you from?
MikeG: Well this chat is about Balance - how does that affect you in your life? Does anyone have a solution - other than staying seated all the time?
MikeG: Morning Ed.
jameson411 entered the room.
MikeG: how's the training going?
emeyerth: Mike, just got home from a quick run with Sean
emeyerth: Very well, actually
JoeK: Greensboro, NC and Highlands,NC
emeyerth: I am feeling quite good
Butch: Ed--sure admire you being able to RUN.
MikeG: I can't run 5 feet!
emeyerth: It has nothing to do with me - I am just a late bloomer (or should I say un-bloomer)
jameson411: I can manage 5 feet, on a good day :-)
MikeG: I guess you don't have much problem with balance while you're running...
Michael17860 entered the room.
Michael17860: Hi ALl
MikeG: Hi Mike
emeyerth: I have always thought that I was a bit clumsy
Michael17860: How is everyone today?
emeyerth: and I do trip a lot, so I am especially careful when going up curbs and places where the pavement height is changing
Butch: Balance--This is a good topic. We all handle falls and being off balance in our daily lives.
emeyerth: I generally do not lift my feet up enough when I run
Murf entered the room.
MikeG: is that your secret or problem?
Murf: Morning all
MikeG: Morning Murray!
Murf: hey Mike
Butch: Hi Murf--How are you today?
Michael17860: Hi Murf.
emeyerth: morning, Murray
MikeG: how's your balance today?
Murf: Great Ron, I'm pouring concrete this morning finally
Butch: Good news.
Murf: What balance?
TerryW entered the room.
Murf: Morning Terry
emeyerth: Morning Terry
MikeG: welcome back Terry
Butch: Hi Terry.
MikeG: connection problems?
TerryW: I got kicked off the other PC, wifw had to do finances onit LoL
TerryW: on laptop now
Murf: Hey Norman, how's the weather up there?
norminstormin: little bit cool
norminstormin: had frost this morning
TerryW: so who hates to have to bend over to pick up things?
MikeG: we woke up to 80
Murf: summer is over for you and I'm watching the Hurricanes
TerryW: I wobble like a weeble
MikeG: don't mention those
norminstormin: me too when i bend down
TerryW: Ihave to hold on to something
jameson411: luckly, I can still pick up things with no problems....
Murf: I can't bend over with out going down
MikeG: yes, me too - especially when I bend over
norminstormin: i have to hold onto something or i,ll go down too
Murf: I have a few of those grab things located around the house
TerryW: It is frustrating
MikeG: have to hold on to the floor :)
jameson411: The only time I loose balance is sometimes when I change direction... the little muscles don't respond very well.
jameson411: but no big falls yet
Butch: I wouldn't mind a fall once in a while if I could get up by myself. Hate to ask for help..
Murf: Had another in the garage two weeks ago
MikeG: yes, that's what my problem is - I'm not getting the sensory signals to tell me where I am.
TerryW: i hear that mike
Murf: only scraped my knee
Murf: Lucky again
MikeG: me tto Butch
TerryW: same here butch
MikeG: falling is not fun!
Murf: I use my chair more to avoid the fgall
Sammy entered the room.
TerryW: It is hard to get up if people dontknow how to liftus. they think they can just grab our armsand lift. NOT
emeyerth: Speaking of sensory info, I have almost no feeling on the soles of my feet - they are always numb and cold
TerryW: sorry i type terrible on a laptop
MikeG: I think if anyone of us will try standing up and just closing your eyes, you'll see the 'balance' problem manifest itself.
Sammy: morning folks
TerryW: Emeyerth, i still have feeling but they are always cold even in summer
Murf: Hi Sammy
Michael17860: Hi Sammy
Butch: Terry you are right--The belt lift is the only way someone can really help me.
TerryW: Mike, or try to look thru a camer eyepiece and take a pic while standing
jameson411: what is the belt lift?
Murf: We always have to wear one
MikeG: and then - while you're feeling unbalanced - just touch tomething. The balance becomes fine again.
TerryW: you llose all senseof balance
emeyerth: I have even worn socks to bed to keep my feet warm, my wife thinks I am crazy and she is always telling me that it is so hot in the house
TerryW: me to ed
TerryW: I tuck my PJ bottoms in my socks
TerryW: looks funny
Michael17860: You can always use the belt loop if you do not wear a belt.
Murf: when someone grabs the back of your belt to lift you
Butch: Jameson--When someone can help lift you by holding onto your belt.
Murf: Sometimes you get a weggy
Murf: but that's the price we pay
Michael17860: Thats the fun part Murf.
jameson411: luckly there are all the benifits.... :-)
jameson411: like handicap parking.
jameson411: someday, I'll get a sticker.
TerryW: I was at taco bell the other day and a poor old fell on her face as she tripped while trying to get up the curb, her face hit the cement. people looked funny at me because id did not help her up, I felt so bad
MikeG: has anyone been successful in using the Liberty Cane to get up?
Murf: I needed that last night but healthy people have stickers now
TerryW: old lady
TerryW: I was just getting out of my car in the Handicapp spot
TerryW: All i could do was help her sit up
TerryW: others then came to help
MikeG: didn't anyone else try to help her?
TerryW: I explained
TerryW: yes but I was closest when she went down
MikeG: well, you shouldn't feel bad about that.
TerryW: I felt helpless
Michael17860: Terry at least you did not just walk away.
MikeG: that's right
jameson411: KD is a lifes lesson on humility.
TerryW: sure is
jameson411: we have no choice but to depend on others.
TerryW: The one thing is from the incident is I understood the way she felt when it happened
TerryW: I know she felt embarrased
Murf: Me too
TerryW: I told her I fall all the time
TerryW: but noton concrete
Murf: falling in public is embarrasing
TerryW: not on
MikeG: trying to get up is more embarrasing...
jameson411: other people understand when old people trip or fall or take their time going up the stairs. But for a middle aged man to struggle with a few stairs usually draws comments and stares.
TerryW: how does everyone do with shopping for groceries alone when they need a heavy object?
fl-don entered the room.
Michael17860: I went out and got some really good knee and elbow pads that I wear around the house if I any doing thing that I might fall.
TerryW: like water or dog food
jameson411: Most people in my life don't know about the KD yet.
MikeG: morning Don
jameson411: I can't hide it anymore
fl-don: hi all, just back from pool exercise
Murf: I get people to help Terry Its not worth trying to do it yourself
jameson411: good idea Michael
norminstormin: i always fall over when i feed mycat
Butch: Jameson--don't try to hide it. Share info with others.
Murf: Hey Don How was it?
MikeG: me too - I'm not ashamed to ask for help.
TerryW: Ihave fallen on my cat LOL
fl-don: pool water feels great. never fall
norminstormin: i did once too
jameson411: I'm going to get a YMCA membership.
jameson411: I want to swim again
Murf: Surprise the cat?
fl-don: saving my money for the conference in vegas
fl-don: and poker
Sammy: Not a balance question - sorry, I joined late. Anyone had a series of flobotomys? ( I asked for leech treatment to let the blood, but it seems things have progressed in medicine...) Did you notice any changes with Kennedy's symptoms with the flobotomys? The flobotomy's were for another adventure of mine that got identified after the Kennedys.
norminstormin: sure did
MikeG: that's one way to overcome the balance problem, Don.
TerryW: not me sammy
Murf: Don - what exercises do you do? I just installed a pool
fl-don: i walk most every day for 2 hours in a large exercise pool heated to 88 degrees. i push the water with my arms . nothing too strenuous per the doc
jameson411: wow, 2 hrs.
jameson411: you must have some serious pruning
Murf: 88 deg was that temp recommended?
TerryW: I need to go everyone. chat with you all again soon
fl-don: water takes the weight off my legs
jameson411: bye Terry
Sammy: Flobotomys for hemacromatosis. Taking a pint or so every couple weeks for a few sessions to lower ferratin/iron levels. Noticed I had a different set of weak/ sore joints in the early sessions, but it's changed/ improved (still not great) a bit with further blood letting sessions.
Murf: Later Terry
MikeG: cya Terry
TerryW has left the room.
fl-don: cya in vegas terry
Butch: So long Terry--stay healthy.
Murf: Don - did they recommend 88 deg?
MikeG: Wow Sammy, I never heard of that before.
fl-don: arthritic assn recommends temp betwen 83 & 88 for safety
Sammy: me neither. But I hadn't heard a whole lot about Kennedy's a couple years ago...
Murf: ok, I know that too hot will not work. we can't do hot tubs
Michael17860: Sammy I use to give blood every two months until I started Avodart. I never noticed any problems.
jameson411: why no hot tubs?
fl-don: any news on the research front?
Murf: They make your legs wabbly
TJ entered the room.
Sammy: Thanks Michael. Was the blood donation a voluntary thing? What's avodart?
MikeG: Morning TJ
Murf: my leggs are wabblly enough
Murf: Morning TJ
Michael17860: Murf I have a hot tub, no problem with it.
TJ: GOOD MORNING ALL
fl-don: hot water raises ones blood pressure. combined with exercise could be dangerous
jameson411: more wabblly than normal ;-)
Murf: Michael17860: what temp
emeyerth: Don, I have not seen any new scientific papers released in the last couple of weeks dealing with KD
TJ: I DID SOMETHING STUPID YESTERDAY, I TRIED TRIMMING LIMBS ON MY LIVEOAKS AND ENDED UP HAVING MY WIFE TO COME OUTSIDE AND HELP ME IN MY LEGS AND ARES ARE DEAD.
Michael17860: Yes I was up to almost 8 Gallons. I started donating when I was 18 years old. Avodart is the med. in the clinical trial.
MikeG: yep - you've got to watch over doing it TJ.
Murf: TJ - do I need to come up there?
fl-don: tks em
Michael17860: Murf 102
TJ: mY LEFT LEG HAS BEEN BURNING AND PRICKYNESS LIKE FEELING FROM THE KNEE TO THE HIP AND GOES TOTALLY NUMB, THIS HAS BEEN GOING ON FOR MONTHS AND FEELS LIKE ITS ON FIRE, HAS ANYONE ELSE HAD THIS PROBLEM!
Gary_KS: Mich, how long have you taken Avodart? Do you feel any improvement or change?
MikeG: TJ, sounds like a case of the shingles...
MikeG: you ever had them?
Murf: Michael17860: ?
TJ: Mike, what are shingles?
Michael17860: this month will be two years. I feel alittle better.
MikeG: Me too Mike - I think it may just be holding me where I was a couple of years ago.
Murf: ok 83 - 102
fl-don: shingles usually in upper extremities if bidy, neck, face, stomach etc.
Michael17860: I also take alot of other things, so it's unsure what is working and what is not.
Gary_KS: Thank you, Mich.
TJ: Mike G - what are shingles?
MikeG: nerve problems on the surface of the skin.
Barb entered the room.
Butch: Hi Barb.
Murf: Hi Barb
MikeG: Morning Barb
fl-don: shingles is a virus caused by measles.
Michael17860: thing I put on the Roof LOL
Barb: good morning
TJ: Hell, maybe I should ask my Dr. about it, what can you do for it? Anyone that knows, please tell me!
MikeG: how are things in the big D?
Murf: I have trusses
Murf: Almost like shingles but lower
fl-don: does not sound like shingles to me tj
fl-don: maybe syatica
emeyerth: I think that shingles is caused by the virus for chicken pox not measles, but I could be mistaken
Michael17860: that is a woody joke, Trusses.
fl-don: but i'm not a doc
TJ: What do you think Don? My neurologist says it's my muscle shrinking, but would it burn like that?
fl-don: right em, sorry
fl-don: i have no idea
Butch: Mary Lou had a severe case of shingles. She had 4 different pills--anywhere from 10 mg to 200 mg. The 200 mg cost 35 dollars a pill.
Murf: TJ its like growing pain in reverse I have the same thing
fl-don: i would listen to doc
MikeG: A friend of mine had shingles that he fought for months with different kinds of meds... he finally had a eppidural block that stopped the pain - they never came back after that.
TJ: All I know is when I get in my easy chair or bed, any position my leg is in it starts the burning sensation, prickness and goes numb.
fl-don: u going to the picnic at the pool monday mike?
Butch: Hey guys--I must be going for now. Stay healthy till next we chat.
TJ: It could'nt be a blood clot, could it?
fl-don: gotta go gang. luck 2 everyone. cya in vegas. bye
Butch has left the room.
Sammy: TJ - I had descended 25 flights of stairs in fairly short period and legs were totally pooched for around 1 week. I didn't have the prickliness etc. My Dr noted she was not surprised my legs were pooched, the nerves were completely overloaded with my stair adventure...Things returned to my "normal", sluggish state (feeling like I'm walking in sand) after a week or so.
MikeG: If we get back in time - we've got telethon duty from 1 - 3:30...
TJ: It could not be a blood clot could it? Obvisouly you can tell it's worrying me
fl-don: we doing telethon monday here in tampa.
fl-don has left the room.
TJ: Well, I do over do my walking, that I know!
JoeK has left the room.
Murf: TJ: Sammy thinks you just need to rest too. Why don't you just rest for a week and see
MICH entered the room.
TJ: Sammy, whtcha doing walking 25 flights of stairs?
Murf: Cemet truck is here I got to go
TJ: Good luck Murf
Murf: Stay on your feet people
MikeG: cya Murf
Murf has left the room.
emeyerth: so long, murf
jameson411: I went to the top of Notre Dame and back down a month ago.
Barb: Looks like a lot of you are helping with the Telephon. Guess I'd better go watch it.
jameson411: the next day down a ton of stairs with the Iffel tower.
TJ: Wow, Jameson, thats awesome
Michael17860: How many flights was that Jameson.
jameson411: I was toast for about 2 weeks after that
Barb has left the room.
jameson411: It felt like 1000, not really sure
jameson411: Only went from level 2 to level 1
Sammy: I had been doing OK with 4 or 5 sets of stairs - a fire alarm dictated 25 flights - I had a brain cramp and was thinking back to pre Kennedys days...
jameson411: trying to find less crowded elevator
jameson411: didn't work :-)
MICH: and I can testify that Jameson walked our Gateway mall here in Salt Lake at great speed
MikeG: I don't know about a blood clot TJ, but it sounds like you need to have a neurologist check it out. May be just poor circulation...
Sammy: Learned a painful lesson to take it easy. Was good speaking to the Dr about the nerve response thing..
emeyerth: I need to go, so long everyone.
jameson411: HEY MICH!
jameson411: yes, it was a great visit.
jameson411: First person I physiclly met that had KD
emeyerth: Mike, Sean took a picture of us to put on the firstgiving web site, I assume it will be up soon!
emeyerth has left the room.
TJ: Yeah, I told him about it and he said it was shrinking muscle. I know it seems like I have really been going down hill lately. We are booked for Vegas, hope I can go when its time!
MikeG: If your'e coming to the conference in November you'll meet several hundred of us who have KD.
Sammy: Gotta mosey here folks. Thanks for the chat. Keep well.
jameson411: Not sure that I"ll make it this year.
Sammy has left the room.
MikeG: that good Ed. I'll take a look.
TJ: You need to Jameson, its going to be awesome
jameson411: Already blew the budget this summer going to France and Yellowstone
jameson411: Trying to do these things while i still have decent mobility
Michael17860: Mike G did you get the web site that I sent you on ACJ-9
MikeG: yes, thanks. Cheap drug huh?
MICH: Sorry to pop in at the last minute... my daughter has to take one of our cars for Labor Day weekend... and I have to take my wife to work with the other right now... you'all have a great weekend
jameson411: l8r MICH
MikeG: same to you Mich
MikeG: take care
TJ: You only live once, so go into debt, its the American way!
Michael17860: I wonder why some of the other researcher dont get some and tye it on there mice?
norminstormin: gtg take care allc all
MikeG: I tink that's te next step Mike.
TJ: Hey, Jameson, its like having kids, if you waited till you could afford them, you would never have them
norminstormin has left the room.
Michael17860: I hope so.
MikeG: me too
jameson411: I'll have to think about it.
MikeG: looks the the one that will do it.
jameson411: I'm a school teacher and the timing is a bit off.
MikeG: who would have thunk it - curry...
TJ: Come on buddy, it will be great for all of us to see and meet each other!
TJ: What do you teach
MikeG: oh, that's something I never thought about jameson
jameson411: Course, I get 15 sick days per year.
Michael17860: I hope that it does not that forever to get to a trial.
MikeG: there you go!
jameson411: i feel something coming on....
TJ: Now your cooking! This is only once a year
MICH has left the room.
TJ: Has anyone had any luck solicting items for the auction>
jameson411: In some ways, I am a little intimidatd
jameson411: I am still pretty moble and such...
TJ: your lucky
jameson411: not sure I want to see what is in store a few years down the line
Michael17860: See you all later, got to cut grass.
jameson411: to be honest
Michael17860 has left the room.
MikeG: I'm going to bring something small and light - like jewlery...
jameson411: I have a piano that no one plays ;-)
Gary_KS: Bye all
TJ: Good Mike, Jameson you never know what the future holds
jameson411: bye Gary
MikeG: Bye Gary
TJ: Bye Gary
jameson411: I am enjoying the moment, ever so thankful for what I have and what I can still do.
Gary_KS has left the room.
TJ: Hey ship it there we'll sell it
MikeG: well, I'm going to save the chat and get out of here - take care everybody.
jameson411: me 2
TJ: Okay, take care and I enjoyed talking to you all
jameson411: good bye gentlmen. Stay up right... physically and mentally
jameson411 has left the room.
TJ has left the room.END CHAT