Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  11-17-2007

Topic:  Post KDA Conference Thoughts

Host: Terry Waite



TerryW: Hi everyone

norminstormin: hello

MikeG: Hi Terry

Gary_KS: Good moring! Gary Uchiyama joined from Kansas City.

JoeK entered the room.

Gary_KS: Hi All.

Rick: Hello.

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.

Rick: Hello.

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?

MikeG: Camaraderie!!!

craig_h: hi Butch

TerryW: Yes, Michael,  Much promising research with various compunds

TerryW: on flies & mice

Michael17860: great.....

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

norminstormin has left the room.

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

Rick: lol.//2

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: OK

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

Butch: Yep

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.

Butch: Thanks

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

TerryW: help

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: yep

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.

Rick: Bye.

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

TerryW: very

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

TerryW: LOL

kellyC_: gosh terry u have to be

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

TerryW: Welcome

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.

kellyC_ has left the room.

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.

Rick: ouch.

TerryW: OUCH Bill

TerryW: when

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: lol

jameson411: i have a pass

TerryW: OK,  Epteins mother note?

TerryW: Ebsteins

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?

jameson411: 34

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

TerryW: LOL

Rick: lol

jameson411: lol

jameson411: ya... sometimes when I turn around, I get a little off balance and do the drunken sway thing

vikes51349 has left the room.

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: LOL

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!

Rick: lol

TerryW: Jameson has it improved any

jameson411: yes

TerryW: good

jameson411: every day a little better :-)

TerryW: :)

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.

MikeG: yes

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.

jameson411: jk

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: nope

TerryW: still do it the manual way LOL

Rick: I looking at having that once i have moved.

Rick: lol

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: IOC

TerryW: no problem here

TerryW: See you all later

TerryW: bye