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Kennedy's Disease Chat Transcript 11-17-2007
Topic: Post KDA Conference Thoughts
Host: Terry Waite
TerryW: Hi everyone
MikeG: Hi Terry
Gary_KS: Good moring! Gary Uchiyama joined from Kansas City.
JoeK entered the room.
Gary_KS: Hi All.
JoeK: Hi from North Carolina
MikeG: Another GREAT conference last week.
billeric: I sure enjoyed the conferance Terry. I was really tired at the end of each day from concentrated listening. Those were some great presenters with some tough stuff to present.
craig_h: Joe, I'm about 2 hours north of Greensboro
TerryW: Yes the conference was great, I wish more of our members could come
Rick: I had a really good time and you all made my wife and i, feel at home, Thanks!
kellyC_ entered the room.
billeric: We enjoyed your company Rick. Fun time at dinner.
kellyC_: good Morning to all
Rick: Thanks, I like to enjoy myself and better with the company of others.
TerryW: Now, the post conference work has begun, Getting the information & photos from the conference up on the website. It may be a couple of weeks because of the house stuff that I have to get done here before the winter weather sets in,
TerryW: then I can come in and work on the web stuff when its cold outside
billeric: We got the list of participants from Sussane. That was nice.
TerryW: I have to get the outside stuff done while I can
MikeG: I sent my movies and pics to Murray. Do you need a copy also Terry?
Michael17860 entered the room.
TerryW: Yes, they were good mike
Michael17860: Hi all
Rick: I got my list to, thanks Terry.
TerryW: hi michael
TerryW: you are welcome
TerryW: so for those of you that attended the conference, what did you like best?
MikeG: The link I sent were just still photos. You should see the movies. Like Maria's Mouse Movie...
Butch entered the room.
TerryW: hi ron
Michael17860: any great news from the conference?
Rick: I think the Split session of us & the wives etc went well.
Butch: Hi guys. How are you all doing?
craig_h: hi Butch
TerryW: Yes, Michael, Much promising research with various compunds
TerryW: on flies & mice
kellyC_: how was the discussion on the KD trial? anything promising so far?
billeric: I sure enjoyed Ed meyertholens (sp) lecture on a non scientific explanation of K.D. However Dr. Kurt is so good and down to earth he is hard to beat. Both excellent.
Butch: Was there much discussion about the ongoing trial.
TerryW: My wife and Ed are coming up with an abbreviated version document to go on the website talking about the research and what went on
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TerryW: Yes butch but they could not give much info because it is not complete yet
Rick: Don't forget the cure, if you don't mind being castrated! ouch.
kellyC_: when is the trial end terry?
TerryW: They are going to find another way I am sure Rick
TerryW: 1 more year Kelly
kellyC_: ok ty
billeric: Good idea Terry especially for those who just found out they have K.D.
Butch: hope so anyway.
TerryW: The Auction & dinner went well
TerryW: Ed the Auctioneer was great
billeric: And how!
Butch: Hey Rick--did you drink a beer for me?
Rick: Not just 1.
Butch: I sure missed seeing you guys at the conference.
TerryW: we were thinking of you ron
Butch: I saw some of the pictures taken. You are all as good looking as ever.
TerryW: Iwish we had more time for the mens session, It always seems to go so fast
billeric: I have only been to two conferances but it sure is fun seeing the folks you chat with or have met before. Interesting to see how we have changed over a year.
TerryW: Just in the last 30 minutres 2 more e-mails came in with 2 new KD members
Butch: Terry--I hope you had a nice visit with your Mother. Is she doing OK?
TerryW: not so good butch
Butch: Sorry to hear that.
TerryW: mentally she wants to give up
TerryW: I wish i lived closer
TerryW: to be able to visit her
Rick: I found it hard to please the wife with doing some sight seeing, just did not have the energy after the day had finished.
Butch: If anyone can talk her thru it --that would be you Terry.
kellyC_: anymore kd guys from canada terry?
kellyC_: like new members who joined
TerryW: Ron, I have trouble talking myself through somedays
Butch: I understand
billeric: I felt the same way Rick. The intense days are a sign we really were involved
Butch: We do the best we can
TerryW: 1 from Poland, the other from MN
kellyC_: ic... ic.... ok ty
Rick: Its too easy to give up. We are all here for a purpose.
TerryW: Music is very theraputic
TerryW: I like the old stuff
TerryW: takes me back
Butch: You can't imagine how hard it is to lose your caregiver and love of your life.
TerryW: No , I cant ron :(
TerryW: I would be devastated
TerryW: You are strong Ron, hang in there
Butch: Somer days are better than others.
billeric: Wouldn't we all?
TerryW: she is still looking over you
Butch: Just one more challenge.
TerryW: Guardian Angel
craig_h: sorry to hear that Butch
Butch: It sounds like you guys had a great conference. Just sharing stories is a great binding for us all.
TerryW: Butch I am sure that these next couple of months will be real hard, if you need someone to listen call me
Butch: Thanks Terry.
billeric: Should mention Terry. That John Coakley is a heck of a guy. He sure makes those conferances hum. Fun guy at the dinner and auction too.
TerryW: We want to see you at next years conference
TerryW: John's energy is amazing
billeric: Sure is!
MikeG: That's so true Bill!
billeric: Love the t-shirts Mike.
Butch: I'll be there. It was just too soon this year. Our anniversary was nov 7th. 48 years!!!! Wow.
TerryW: We understand
MikeG: Did your Sun City get as cold as ours? We came back to 57 and thsi morning it was 47 here!!!
MikeG: Wow, Ron! How old ARE you?
billeric: Been real warm Mike. Most days in the 80's. Nights in the 60's.
Rick: I found it all amazing, and everybody was great. For me it was the first time i met others with KD. I was diagnosed in may 2000.
TerryW: It has been in the 70's here, This week I repaired my garden tractor, got firewood ready to go, got the boat witherized and am builing a gate while the weater is wrm and my hands work still
TerryW: I am so sor & exhausted but I still have about 2 days work outside
Butch: Mike--67 years young.
MikeG: nice - that's what we usuall have... we're colder that I have been this time of year down here.
TerryW: I have the little kid from across the street hemp me when I need it
MikeG: wow! I thought you were much younger!
billeric: You accomplish a heck of a lot more than I do Terry. If I get one thing done per day I am happy.
TerryW: I take many breaks, like one every 10-15 mins to recharge
Butch: Terry--you certainly have alot on your plate.
TerryW: Yep, It stresses me out sometimes
MikeG: Terry, you're looking better than you did when I first met you in 2001! Must be the exercise.
Butch: Don't see how you do what you have to do.
TerryW: It is the mountain air
Rick: I believe i must have been the youngest one at the conference (42), but it was good to see the older guys still pushing themselves.
craig_h: I have my 18 month NIH visit in less than 2 weeks
billeric: I take lots of breaks too Terry. Helps you to keeep going but sure slows down the project.
TerryW: Before I begin any project I lay down for about 1.5 hrs and get a full charge
MikeG: tallest too!
Rick: I seems to take me a week to do a days work and plenty of sleep in between.
TerryW: I feel like a NiCad battery
MikeG: same here - everything I do takes twice as long as it used to.
MikeG: Bill,was Bud older than you?
Butch: I must go for now. I hope you all stay helthy and strong till next we chat. Bye.
billeric: It was interesting to hear about the health care system in the U.K. Rick. Somehow, ours doesn't seem so bad.
Butch has left the room.
MikeG: or were you the oldest there?
TerryW: It took me 15 minutes to put a water drain plug in the boat engine block the other day because it was on the backside of the engine and I had to reach around behind it and my finger & hand dexterity was gone
TerryW: I was ver frustrated
billeric: No Mike. I think I am about a year older.
Rick: It was once very good.
MikeG: I know exactly what you're talking about Terry. I don't do any work on my car anymore - even oil changing is a pain!
billeric has left the room.
Rick: But underfunding, to many chiefs and no staff does not help.
billeric entered the room.
hank entered the room.
billeric: Sorry guys, suddenly I lost the chat room
TerryW: I had to crawl into the engine compartment and do that task. At one point I was so exhausted I could not get myself back out and I had to wait 20 mins before I had the strength to crawl back out
TerryW: I was oh, great now I have to stay here until Susanne gets home
TerryW: then yell for her to come rescue me
kellyC_: gosh terry u have to be careful....lol
Michael17860: with out going to an accountant, does anyone know how much one can write off on taxes on a indoor swimming pool?
JoeK: Hank where are you in NC?
TerryW: hi Hank I did not see you come in
Rick: I had a fall at the top of the driveway and had to crawl back to the house to use the stairs to get up.
Rick: the only problem, iwas wearing shorts and cut my knees up. It was painfull.
craig_h has left the room.
billeric: I know you would have to have a doctor give you a certificate of need. I'll bet Murray williams could tell you.
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TerryW: As you guys mentioned, I think that the things that keep me active on the property here have toned what muscle I have left and kept my weight in check so I look better but I know that I am weaker than I was last time you saw me
TerryW: I have lost 15 lbs since last time you guys saw me
Rick: I weighted myself today and found out that i have lost a stone (14lbs). I was supprised.
billeric: I fell backward into a suguaro cactus and had to crawl into the house with my back full of cactus needles.
MikeG: yes, Murray could tell you for sure.
TerryW: OUCH Bill
billeric: 2 years ago.
MikeG: sounds too painful to think about.
TerryW: oh, Ouch anyway
Michael17860 has left the room.
TerryW: are you all still here??
billeric: I could notice on the guys that we all have weak pelvis-girdle muscles. Must be one of the first muscle groups to go. Makes our walk jumpy and not smooth
Rick: Looking at getting an electric chair, as the one i used at the conference helped reserve my energy for a longer day!
TerryW: also when I go to sit down on a toilet I start to sit and then slam I drop like a rock on the toilet seat
MikeG: the KD strut...
MikeG: me too Terry
TerryW: good thing I have a sturdy toilet
Rick: Make it into a dance, lol.//4
billeric: Me too Terry
jameson411 entered the room.
jameson411: good morning everyone
TerryW: Jameson you are late, now you have to stay after LOL
jameson411: i have a pass
TerryW: OK, Epteins mother note?
TerryW: remember Welcome back Kotter
jameson411: sorry, before my time.... :-|
Rick: i have that problem to. I feel like the toilet is going to break. Thats a frieghtening thought.
TerryW: how old?
TerryW: oh, yeah I guess so LOL
Gary_KS has left the room.
jameson411: i remember vague things about Kotter... Ebsteins mother is not one of them :-)
JoeK: HANK are you close to greensboro, NC?
TerryW: It's funny when I go into a public restroom to take a pee and I stand at the stall I sway back & forth because off my balance, Other people in there must think I am drunk
TerryW: Maybe I should start singing old Irish drinking songs ans slurr the words
jameson411: ya... sometimes when I turn around, I get a little off balance and do the drunken sway thing
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TerryW: It would be funny if a cop ever pulled me over and wanted me to walk the line
billeric: Worse yet Terry. When you must use a regular stool at a public restroom and then try to figure how am I going to get off this thing.
jameson411: ask for a wheel chair
TerryW: I don't drink & drive ever
TerryW: I hardly even drink
TerryW: makes me so tired
jameson411: but no one would ever knowthe difference ;-)
billeric: One beer a day while I watch the news
Rick: Or your on the toilet and can't cleanse yourself as there is no room to open your legs.
TerryW: You need more than 1 beer these days when you watch the news
TerryW: sad to watch what the world is coming to
billeric: Your right!
jameson411: with my bells palsy, i tend to slur my words... I could be sneaking nips between classes and no one would know
MikeG: so true, Terry!
TerryW: Jameson has it improved any
jameson411: every day a little better :-)
jameson411: anyone have problems with blinking becuse of KD?
MikeG: yes, my eyelids are weak.
TerryW: not here, I do get some twitching of the eylids occasionaly though
TerryW: drives me nuts
jameson411: Mike, do your eyes dry out?
MikeG: that's why they don't stay open all the way anymore.
Rick: The problem seems to be that everybody looks at disability as a wheelchair issue, so everything is to low, causing us problems.
jameson411: dry eyes stink
MikeG: yep! I have a problem in the morning just getting them open enought to see where I'm going...
TerryW: I replaced my 3 toilets in the house with ones that are not real tall but about 3 inches higher that those real low ones
Rick: I have had squinting for many years.
TerryW: they look normal in the bathroom
jameson411: I'm so blessed in my job. The elevator is right across the hall from my classroom. And the bathroom is right there too.
Rick: European toilets are quite high to.
jameson411: I have stairs leading up to my toilets
jameson411: 8 feet hight
billeric: Terry, before I forget it I sure want to thank the crew that put the conferance together. I was part of the crew that did the San Dieago one and I know the number of phone calls made etc. This years crew did a fine job. Thank you.
TerryW: My toilets are also longer and have the European countoured seats
TerryW: Very comfortable
TerryW: I hate those little round toilets
jameson411: toilets are not an issue for me yet... luckily
Rick: They should do bigger toilets for those of us with larger rears.
TerryW: King Camode
MikeG: that's what we put in our house Terry. Now when I go to a normal toilet, it looks like a baby pot...
TerryW: yes Mike
Rick: do you have a bitergrated bidet in your Terry?
TerryW: still do it the manual way LOL
Rick: I looking at having that once i have moved.
TerryW: Well everyone I have to to get ready for our KDA board meeting. See you all online soon
jameson411: how about showers? I have the standard tub/shower and sometimes get nervous when i do the drunken turn thing
jameson411: bye TerryW
JoeK: need to leave now
jameson411: thanks for hosting
billeric: Thanks Terry
JoeK has left the room.
billeric has left the room.
TerryW: Jameson, Get those suction grab bars
Rick: Because of my back condition as well, i find it hard to reach. Does anyone else have that problem.
MikeG: well, I have to go - need time to do some other things before our BOD meeting in 30mins. See ya.
jameson411: rick, not yet.
MikeG has left the room.
jameson411: ok Terry
TerryW: rick, reach what?
Rick: cleaning oneself
TerryW: no problem here
TerryW: See you all later
TerryW: byeEND CHAT