Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  09-04-2010

Topic:  Open Forum

Host: Mike Goynes


Bruce: Good Morning, Rich and Mike
MikeG: Hi Bruce and Rich
UTE: Good Morning...
Bruce: I am not certain whether I will be on the total time. We have family coming sometime this morning.
MikeG: we've got a beautiful day going in Florida today.
MikeG: ok
Bruce: Ours is BETTER!!!!
UTE: Bruce, your in Atlanta
Bruce: Lows this morning were 60 and the high is supposed to be 83
Bruce: About an hour north of Atlanta
MikeG: I don't know if we'll have many today being a holiday weekend...
Bruce: Tomorrow morning the low is supposed to be 53. I am wearing my jeans.
UTE: And the begiining of football seaseon!!!
Bruce: Right on!
MikeG: :)
Bruce: Morning Poohsdaddy
MikeG: how's the weather in WI today?
poohsdaddy: Good Morning All ...
Bruce: Yes, I have been waiting for the fall kickoff of college football. It makes the weekends interesting again.
poohsdaddy: Daylight and upper50's now.... I'm guessing. Haven't been out today.
Bruce: Morning Ted
TedA: Good morning from Richmond, VA
MikeG: we've had such poor turnouts at our preseason games that they don't even televise the games...
MikeG: morning Ted
Bruce: I was out watching the beaver this morning taking their morning swim around the lake. ALways nice to start the day that way.
MikeG: nice
poohsdaddy: I watched most or the pre-season Packer games; and liked the 59-20-ish against the Colts.
UTE: Bruce, how big is your lake?
Bruce: Is anybody running Windows 7? I am considering updating from XP Pro.
MikeG: me2
TedA: Yes I have Windows 7
Bruce: Rich, it is a small springfed lake of 11 acres surround by woodes on one side.
poohsdaddy: Yes... I'm on #7. It installs the updates automatically.
Bruce: What do you think of it Ted. Is is worth the upgrade?
UTE: Sounds beautiful and like the lake I grew up on in Michigan
MikeG: did anyone upgrade from Vista?
TedA: It has some things that XP did not, but I'm not really great on computers. It is working good for me.
Bruce: Rich we have all kinds of wildlife ... Great Blue and Green Herons, otters, beaver, osprey, great egrets, bald eagles, etc. etc.
Bruce: I never get bored taking my dog for his walks around the lake.
MikeG: sounds nice Bruce... want some company next week?
Bruce: Come on up. We have all kinds of room.
MikeG: how far are you from Blairsville?
MikeG: morning Stan
Stan: Morning everybody
Bruce: About 1½ hours or so across the mountains. Ellejay is an hour from home.
UTE: Stan, been out to your lake lately?
Bruce: Morning Stan
Stan: This past Thursday
MikeG: we'll take it into consideration - maybe on the way back on Friday.
Stan: Morning Bruce
Bruce: Mike, we are five minutes from I-75.
UTE: Bruce, what kind of dog do you have?
MikeG: sorry to hear you can't make it to the conference Stan - it sounds like it will be a good one.
Bruce: Beagle ... eleven years old. A stray that showed up on our door and could hardly walk. He had everything wrong with him and the vet wanted to put him down. We said NO and the rest is history. He is a great friend and a joy to be around.
MikeG: I know a lot of us can't travel very well - especially throught airports.
Stan: Too many things going on and not enough money Mike.
Bruce: I know very few that are doing well with their investments, jobs, houses, etc. during this economy. Tough times!
UTE: Bruce, I have a five month old cone head this morning...he's a pomeranian/multse who just got neutered yesterday
Bruce: Not a happy camper today I bet.
MikeG: we need to have smaller get-togethers in different regions of the country that people could drive to...
Bruce: Yes, Mike, we tried that once and perhaps it is time to try it again.
Bruce: My dod g did not like the cone around his head.
MikeG: I bet that's not the only thing he didn't like... :(
TedA: More local / regional meetings sounds good to me. Driving is easier then flying unless it is a long distance
Bruce: I believe the issue is how far is too far.
Bruce: I use to travel 50% of the time on my job. I cannot even consider taking a trip today by air ... especially a long one.
Stan: I have to drive at least an hour to get to an airport to even go anywhere else in the country.
MikeG: yep - we could pick several big cities and do simultaneous get-togethers,
TedA: Maybe someone could take a suvey as to who would likke a reginal meeting and find out in what areas this would be doable
Bruce: What was it about six or seven years ago we had the one in Pennsylvania?
UTE: Speaking of flying...if anyone ever flys or drives thru Salt Lake to get to Yellowstone or elsewhere, stop by
MikeG: I would be willing to drive 8 hours with no problem at all.
poohsdaddy: Sounds like a good idea to consider regional meeting.
Bruce: My problem is bathrooms (finding one that I can use ... get up afterwards).
MikeG: Rich, we have some friends who just got back from there. We were kidding them about being Bonnie & Clyde a few weeks ago.
poohsdaddy: I know what you mean Bruce.... I had to ask my son for help one day this week to get up.
MikeG: me 2 Bruce - need the tall potty.
TedA: I would be willing to drive 6 hours. Richmond is 2 hours from DC, 3 from Baltimore, close to Norfork and cities in North Carolina.
MikeG: and grab bars would be even better.
UTE: I had to drop out of a MD support group here in Utah as public transportation is my maIN MEANS of travel now
Bruce: Speaking of tall commodes, have you noticed how many handicap stalls are always occupied when you need one?
MikeG: yep - by perfectly capable people too!
poohsdaddy: YES.... and many places that claim to be accessible really are not for those who need them.
Stan: Makes it easier to read a paper or magazine. Isn't it what they are for?
TedA: They are occupied All the time and by able body (AB) people.
Bruce: I had to go a few months back and stopped at a Visitor Center. Every stall was occupied. A wonderful janitorial person guess my need and opened up a single handicapped bathroom around the corner for me. NICE
MikeG: lucky!
UTE: At work I need both the ADA rails and side of powerchair to get up in wc
poohsdaddy: It bothers me to go shopping.... or elsewhere and see the AB using the parking designated for those of us who really need them.
Bruce: I love the handicapped marked stalls that are normal height and the hand rails are very low. It does me no good. Fortunately, I carry a tallette with me and that adds 4½ inches in height.
TedA: Even when I can get standing again then the challenge is to get the pants up, shirt tucked in and belt buckled
MikeG: Ted, Richmond would be a very good spot. We could pick cities like that and Atlanta, Chicago, etc...
Bruce: Ted!!!! Right on. That is so difficult when you are already tired from struggling to stand up.
MikeG: yes - and the button on the jeans buttoned!!!
Bruce: We sound like a bunch of old farts having coffee at the local shop on a Saturday morning.
TedA: I usually dress next to the bed so I can lie down to do half of the dressing. Easier then fighting gravity!!!
MikeG: :)
poohsdaddy: That's when you need a really good friend for help... or you may become acquainted with a stranger quicker than antiipated. :|
MikeG: have you been sailing lately Ted?
TedA: Cut the button hole just a little bigger helps
MikeG: good idea!
Bruce: Poohsdaddy, my wife has had to walk into a men's room more than once in the last few years to bail me out.
Bruce: Morning Terry
TerryW: Hello
MikeG: hey Terry
Stan: Morning Terry
TerryW: Been a busy week
poohsdaddy: Been there, done that. Had the cook and dishwasher come in to help at a restaurant a while ago.... They were not embarassed nearly as much as I was. lol
Bruce: We are having a complaint session this morning about handicap restrooms, etc.
TedA: No sailing yet in VA. Sportable Extutive Director and I wrote a grant proposal to US Paralympics Military and we will here bi 9/18. When we get it we will get sailboats to start our program next Spring
UTE: Terry, how are things at the ranch
TerryW: Been outside most of the week. Getting water lines hooked back up to the horse arena to keep the dust down when Susanne rides
TerryW: 4 large sprinklers to spray over the 100 X 90 arena
Bruce: Terry, you always have some project going on out there.
TerryW: Yes, I can't keep up
TerryW: But I do my best
Bruce: Terry, it keeps you young.
TerryW: Next is Solar
TerryW: 42 panels
Bruce: When will you be totally green?
TerryW: Our electric bill runs about $400 a month
TerryW: goes up 8% a year
Bruce: WOW!
MikeG: good for you, Ted. I hope you can get it approved - I know how much you love sailing!
Bruce: I miss sailing. It was one of my real joys in life.
TerryW: Our stable roof is setup at the perfect angle
poohsdaddy: The last couple weeks have been rough here for my wife and me. We had to have our dog and cat put to sleep.... And her sister died last Thursday. We're still in shock over it.
TerryW: SOrry Pooh, that is so hard to do
TerryW: :(
Bruce: Tough times ...
MikeG: the MDA sponsors an ALS day in Clearwater every year - very nice facility!
MikeG: sorry to hear that poohsdaddy
TerryW: And then to lose a family member, So Sorry
Bruce: For several years we chartered a 41 foot C&C and sailed the San Juan Islands. It was the greatest!
MikeG: nice!
Bruce: I still like the ""J-boats"" for fun though.
MikeG: some beautiful water there
TedA: Any sailboat is fun!
poohsdaddy: She had retired recently to care for her husband who has been ill for years with dimentia or Alzheimer's.
MikeG: yep - I used to do the trapeeze on hoby cats
Bruce: WOW, that is really tough on the family.
MikeG: pretty wild!
TerryW: Handicap bathrooms LOL, WHen I go into the grocery store and try to use the urinal I stand and sway back & forth can't hardly balance, people walk in and think I am drunk
TedA: Me too, Hobbie 16
TerryW: I usually try to use the stall if it is not in use
Bruce: I look for someplace I can stand against a wall or stall side for support.
TerryW: do the one armed stand against the wall
MikeG: that's what I do - go for the corner
TedA: At the YMCA where I have been doing 3 work outs a week in the pool they let me use the Family changing rooms w/ shower, ADA toilet w/ grab bars.
MikeG: that's good
poohsdaddy: We keep and empty ""soda bottle"" in the car just in case I need it. Have to aim very carefully!! ;)
Bruce: Funny
MikeG: lol
Bruce: Handiwipes are good to carry in the car also,
TerryW: With all the stuff I have to do around here I don't need the gym :) It's workout enough
poohsdaddy: Got 'em
TedA: Have you heard about Travel Johns? Very compact and easy to use.
poohsdaddy: ??
MikeG: Ted, how long do you walk in the pool?
Bruce: I have always said we need to write about our experiences because they make for some of the funniest scenes. Not even Saturday Night Live could play it as well as our personal experiences.
MikeG: true - :)
poohsdaddy: Doesn't get as embarassing as it used to either to ask for someone to help, but give new meaning to ""custopmer service"" personnel.
TedA: 30m minutes 3 times a week. I mix it up with swimming, jumping, treading wateer, stretching, etc.
Bruce: When I broke the tibia and fibula that one year, I learned how to bite the bullet when it comes to finding places to go when a safe restroom was not readily available.
MikeG: very good
Bruce: Morning Luis
TerryW: I have tons of real granite boulders here on the property but I had to end up buying a huge fake hollow one to cover the new wellhead
TerryW: LOL
MikeG: hi Luis
loshimo11: Good Morning everyone!! Sorry I'm late joining in... Had to run some early errands with the wife.
MikeG: so you got your well put in?
TerryW: yes 36GPM
TerryW: Yipee
Bruce: Luis, did you ever explain to your wife that the KDA chat room is far more important than any of her errands?
MikeG: and drinkable!
TerryW: compared to the 3/4 GPM we had
TerryW: Yes pure from deep granite reserves
TerryW: clear clean
loshimo11: Bruce, I've mentioned it to her many times!!! She just doesn't listen well!!!
poohsdaddy: Bruce, do you think she'd believe that ?
MikeG: that 1 1/2 horse shallow well I have produces 60 GPM but it's not at all potable!
Bruce: I believe my wife is hard of hearing because she hears very little of what I say these days.
Bruce: I am always recommending this or asking her to do it this way and she just does not hear me.
MikeG: selective hearing - :)
TerryW: when I get tired Susanne says I mumble and sound drunk
poohsdaddy: It's called ""Marital Deafness""..... We all have it once in a while.
loshimo11: Bruce... Actually, she tells me it's selective hearing... one of her many gifts...
Bruce: I love it!
Stan: Bruce, it's the right -brain, left-braiin thing. You're talking to the wrong side of her head.
Bruce: You guys are making me laugh today. Thanks
poohsdaddy: I have a good excuse.... deaf in one ear since birth.
loshimo11: Terry... my wife says the same thing... I'm starting to think I'm drunk all the time.
Bruce: Morning Yakima
TerryW: It's pretty bad when you walk into a Bar and you have KD, you get to the counter and they say ""No more for you buddy"" :D
Bruce: How are things in the Apple Country
MikeG: morning Kid
poohsdaddy: Do any of you know how to prevent a sneeze ? Take a laxative --- and you'll be afraid to sneeze. hahahahaha
Bruce: Good One Terry
TerryW: thank you, I will be here all week
loshimo11: Terry... that's a good one!!! Hadn't heard it before!!
yakima kid: Hello, too early for me!
TerryW: Just mader it up
TerryW: How about those guys trapped in that mine in Chile?
TerryW: Hoppe they get them out
MikeG: before Christmas!!!
TedA: They are going tom have a long wait to see the sun again.
loshimo11: I remember many years ago, I had to drive my brother in law to the emergency room when he started experiencing chest pains. The ER was at the top of the hill and when we got there, they wanted to take me in instead of my in-law. True story.
poohsdaddy: Heard they could be together there for 10-12 more weeks.... depending on the drilling of another shaft.
Bruce: I man walks out of a convenience store with two foot long hot dogs, a large bag of chips, a gallon of ice cream, and stuffing a jelly donut in his mouth. A homeless man sitting by the door said, ""Please Mister, I haven't eaten in three days."" The man finished stuffing the donut in and replied, ""Man that is great! I wish I had your will power.""
TerryW: I hear they are sending them down lots of stuff to keep them busy. I heard that they are not sending down any Ciggs or Alcohol, I guess In Chile thy don't server Miners also :)
TerryW: Bad Joke
TerryW: Head that one this weel
TerryW: week
TerryW: That would be a terrible situation to be in
MikeG: I wonder what they do about the waste??? send it up?
TerryW: I was thinking that also Mike, probably bags to do it in
Bruce: It still amazes me that they cannot reach them. The families must be going crazy.
TedA: dig a hole and bury it
poohsdaddy: Hope they all get along with one another.... No arguing... and no place else to go.
TerryW: that is going to be a movie of the week
TerryW: and a book
yakima kid: keep it up, I'm still asleep!
Bruce: Maintaining your sanity would be difficult ... nothing really to do and no sunlight.
poohsdaddy: I was trapped in the elevator in the Sears Tower in Chicago several years ago; and can only imagine what it's like for them.
Bruce: Morning Paul
TerryW: Bruce makes a great greeter
MikeG: the picture I saw looked like they were deep in a mountain... I wonder why they don't drill in from the side instead of the top?
Bruce: Being stuck in an elevator would be no fun.
TedA: How long were you traped in the elevator for?
Paul Sramek: Good Morning
MikeG: hi Paul
poohsdaddy: And there was a pregnant lady there too.... for nearly eighteen hours.
TerryW: wow Pooh
Bruce: In my last year at work when stairs were becoming more difficult for me, we had a fire drill. Walking down two flights of stairs when people are rushing by is no fun. I was the last one out of the building and as soon as I arrived, they sounded the all clear.
loshimo11: Wait... she was only pregnat for 18 hours??
MikeG: lol
Bruce: Eighteen hours would be difficult ... no food, water, or facilities.
TedA: Hope everyone was friendly
poohsdaddy: No, she had already been expanding for eight months... and was in the elevator for 18 hours.
Bruce: What floor were you near?
yakima kid: mabe a woman volinteered her hand bag?
poohsdaddy: Between 98 and 99.... or near the top. It had been a power failure on a Friday afternoon.... until Saturday.
Bruce: Well, family have arrived, I need to go. Thanks for the laughs today guys. It was a great session. Enjoy the holiday.
TerryW: I have to go let the horses out. Susanne is asleep still, Her dad is visiting and he is asleep also. I am an early riser so I get that duy
TerryW: duty
UTE: At work when we have practice firedrills they have a handcart type things that they strap me down to to get down the stairs
TerryW: take care all
MikeG: later Terry
Stan: Bye Bruce, Terry
UTE: Bye till next time
yakima kid: This late-riser is going back to bed!
MikeG: I bet the odor was pretty bad whe they finally got you out.
MikeG: bye Kid - take care
Stan: I get to go out and work in the yard after the chat.
poohsdaddy: Thanks guys.... See you here again in two weeks.
MikeG: I have two phone calls to return...
MikeG: Thanks everyone for your input today – it kept the chat very interesting. Have a great holiday!
TedA: Take care and see you in 2 weeks
MikeG: we'll talk the idea of regional meeting up at our next BOD meeting.
MikeG: later Ted
Paul Sramek: Take care see you next time
MikeG: ok, Paul - take care
MikeG: enjoyed it - until next time... take care!
Stan: Ok, Bye All.
loshimo11: I'm the last one out. Will make sure to turn the lights off.