Kennedy's Disease Association

Kennedy’s Disease Knows No Boundaries...

• terryw
• kdfl
• patrick
• mikeg
• bruce
• don48312
• lenj
• teda
• john-c
• gross
• sek
• john-c
• fee

kdfl -- {welcome kdfl}

terryw -- Hi KDFL

terryw -- How is everyone this morning?

mikeg -- I've been staying with Don & Judy since Wednesday - looking at

homes down here.

kdfl -- Good Morning Terry, Mike & I are sitting right next to each other

here in rainy Sun City Center, FL.

mikeg -- This is supposed to be SUN City but all I've seen is RAIN for 3 days!

kdfl -- WETTTTTT, and WETTER

bruce -- {welcome bruce}

terryw -- Its been over 90 here

mikeg -- Terry, how many questionnaires have been returned so far?

terryw -- Hello Bruce

bruce -- Good Morning World

terryw -- Temps breaking records here

don48312 -- {welcome don48312}

bruce -- In Pennsylvania also, just 40 degrees lower than yours

bruce -- Morning Don

butch -- Good morning to all. Just another beautiful day here in Amish

country Lancaster Pa. You are right Bruce--our weather has been great.

john-c. -- Butch: I'll be in Lancaster on 3/19. want coffee in the afternoon??

terryw -- So, we are very excited about the upcoming conference that we

are planning in Baltimore in OCT

bruce -- Baltimore will be a treat for those people that have never been

there before. The Inner Harbor is a great place to visit. The National

SeaQuarium is really a wonderful attraction.

terryw -- Yes bruce it should be good for those who can attend, It will be

good to see those again from last year and also to meet new people that are coming.

don48312 -- Bruce, do they have a Hooters in balt?

bruce -- Hooters? I don't know, but assume so. They are everywhere these days.

terryw -- Hi Don

kdfl -- We beat you Don.

don48312 -- yup u beat me, I had the ladies to contend with

don48312 -- good morning all from the KD capital of the US

lenj -- {welcome lenj}

john-c. -- {welcome john-c.}

terryw -- LOL Don

don48312 -- morning Bruce

butch -- {welcome butch}

terryw -- Hi Len and John

terryw -- Hi Butch

lenj -- Good morning everyone

terryw -- Anyone have anything specific that they want to talk about today

teda -- {welcome teda}

mikeg -- Hey, Len! I REALLY like Sun City. I can see why you guys bought

there in Vegas.

lenj -- Mike You must come and visit before you decide on Florida.

terryw -- We get up to Vegas all the time so it would be good to get some

KD people out our way

mikeg -- We'll just have to do that Len.

don48312 -- We have been holding a KD symposium here in the southeast

john-c. -- 'morning friends

terryw -- Thetas great DON, Little get together are always good

don48312 -- we had a nice get together last night at our first banquet. we

have so much in common

teda -- Good morning all

don48312 -- terry, did u have anything scheduled for this morning?

bruce -- Morning, John, Butch and Teda

terryw -- Hi Ted

john-c. -- please send the rain to Maryland

john-c. -- yes, but I've N E V E R been there LOL

terryw -- you guys.

bruce -- Don, I thought you were talking about the "owl"..... LOL

don48312 -- yeah, right bruce, lol

don48312 -- I went to the Daytona 500 last weekend. it wuz a blast.

terryw -- So who has what hobbies and are you still able to do them now

with KD?.

don48312 -- I had to give up woodshop as too dangerous now. I am into

NASCAR auto racing, and Tampa Buccaneers football now.

teda -- The Buc's got our Coach Gruden

don48312 -- yup, we stole a good coach, sry

john-c. -- driving??

lenj -- Yes driving his wife crazy

don48312 -- lol, not driving, just a spectator

butch -- I understand we are doing hobbies for todays chat. I used to do

alot of hobbies before KD. Some require more physical dexterity than I

have. Some others require more total movement. Most sports are out.

terryw -- I love to fish but now I have a problem getting down to the lake

shores to fish also my hands have a hard time tying hooks & such on

terryw -- Hillsides and rocky shores are hard for me

terryw -- I guess there is always the DOCK.

bruce -- Cindy and I loved to hike in the mountains. Had to give that up

(too dangerous). I loved racquetball and tennis. Gave them up, also. I now

am an avid reader, do web design and publishing, and enjoy the movies.

john-c. -- Terry, don't forget the cooler with the beer

terryw -- Yes,, We need to find other hobbies or alternative ways to still

do our old hobbies

terryw -- OK John

lenj -- In Buffalo they have a deck overhanging on inlet, just for

handicap fishing--all level

teda -- Use to snow ski and mountain bike, now its things closer to home

bruce -- Len, Ice Fishing?

john-c. -- but who wants to ICE fish in June??

terryw -- Last time I went to the lake and rented a aluminum boat to go

fishing I had a hard time getting in & out of it.

gross -- Terry, I used to fish from a float tube; not enough leg strength

to make one go anymore. Wonder if an electric float tube would work?

terryw -- I bet it would gross, but wouldn't it be hard to get in and out of it?

gross -- it probably would, Terry. Getting into the waders is hard enough!

don48312 -- Here in FL, they have lots of Handicapped fishing areas

mostly on docks and old bridges.

lenj -- No Lake Erie didn't freeze this year--too much toxic waste

terryw -- I also make movie action figure models when my hands are up to it.

don48312 -- What is ice and snow?????

john-c. -- Boats are a problem: in/out

terryw -- we need that here Don.

terryw -- Don,, it comes out of our freezers. LOL

john-c. -- Amen

don48312 -- rotfl

sek -- {welcome sek}

terryw -- Hello SEK,,

terryw -- Sek, What is your first name if you dot mind.

sek -- hallo terry sorry for nick I’m camillo

terryw -- OK Hello Camillo I am glad you are here, Everyone Meet Camillo

sek -- ive lost last chat due a stupid error time-conversion

terryw -- Thetas OK Sek,, now you made it that’s what counts

sek -- sure

lenj -- Terry--Quest magazine called me yesterday , I told them to get

hold of you and Susanne and they said they would.The article ON kd IS FOR

THE June EDITION

terryw -- GREAT Len

gross -- {welcome gross}

don48312 -- hi Cammilo

john-c. -- better work on that license..lol

sek -- hello to everybody

john-c. -- Hi Camillo

sek -- hi john

don48312 -- terry, any idea yet, of dates for Balt?

butch -- Hi Cammilo. Glad you could join us. Bruce--how was your helping

of crow that we had to eat because of our Eagles not making the super bowl?

bruce -- Butch, I was proud of the "birds" even if they lost. I was happy for N.E.

bruce -- You know, I love the chat room. These times together make me

laugh - the humor is great!

terryw -- I am glad that the KDA has helped to form so many new friendships.

butch -- Terry--who will be the Doctors who will be asked to join us in Baltimore?

lenj -- {welcome lenj}

terryw -- Its been in the 90's here the past few days

john-c. -- OK, I need some help: Bruce, you're in Lancaster, probably the closest.

bruce -- No, Butch is in Lancaster. I am about 30 miles east in the

Philadelphia area.

bruce -- John, what kind of help do you need?

john-c. -- Have to get in the boat today (same Alum that Terry rented)

and work around a break in the pond wall.

john-c. -- OK..both cam help today.

john-c. -- can, (not cam).

butch -- John C.How can I help you?

john-c. -- I can't type w/o looking at the keys. Still get it wrong. Sorry.

john-c. -- Butch: You can position the boat while I fumble, drop the

tools, shovel the 2# (instead of 10# of dirt each time) etc. . As much

moral support as physical.

don48312 -- its been a rough weekend here, with 3 KD caregivers (wives),

who dont take any guff from us 3.

don48312 -- len, how is the move to LV coming along?

lenj -- Starting April 23--no more Buffalo jokes--moving to Las Vegas--HOT

HOT HOT jokes only

terryw -- Len how are you handling the move,, It must be hard getting

everything packed with having KD.

teda -- LV is a smog city

don48312 -- if u dont go outside of the casino, smog is not a problem!

bruce -- Len, congratulations. my one brother with KD is in Phoenix and

loves the warmth on the muscles and bones.

don48312 -- we probable will make it to LV be4 the year is over

terryw -- We are thinking about relocating but I am worried on how I

willget everthing all packed up & such.

kdfl -- Terry, you'll have to pay someone else to do it like I did.

terryw -- I guess hire a company. But I have always moved myself

gross -- Terry, For help moving, try checking with a church youth group;

they love to take on projects like helping people move; at least many of

the groups I have known! An army of teens can make short work of the job

of packing.

terryw -- Hello Gross, I did not see you come in. Thank you for the info.

don48312 -- my wife had to do almost all of the packing, with friends

packing/unpacking the trailer. ya gotta not do what ya gotta not do

teda -- Terry, where are you thinking about moving?

terryw -- Possibly thinking about Redding CA (Lake Shasta area) or Bend

OR, Or Ca GOld country.

teda -- My father-in-law lived his last 10 years in Redding. Nice place,

we have concidered it also.

terryw -- Did he like the Redding area Ted?

teda -- He liked it very much. The summers get hot but the mountains and

streams are very close

bruce -- We will relocate to the South the end of this year. I have the

same concerns, Terry. Cindy will have the brunt of the work, unfortunately.

butch -- John C. I understand that you are from Westminister MD. How far

are you from Baltimore?

john-c. -- 45 minutes.. I'm your local info guide.

bruce -- John-c, Little Italy is one of my favorite places to visit (great food).

john-c. -- Mine too, Bruce. Courted Mary in restaurants there; still do.

sek -- --Bruce I understand what you mean with 'great food', i'm from Italy

don48312 -- when i was in Marines, we made a practice military landing in

Sardinia, Italy.

mikeg -- I've always liked photography and I can still do that with KD.

terryw -- Mike, we just got a new Digital camera finally.

terryw -- I have been waiting 5 years to get one

teda -- I recently got a cheap digital camera to try it.

bruce -- Terry, what kind of camera did you get? I am seriously considering a digital.

terryw -- Mike I bought the Minolta DIMAGE 7. Its 5.2 Mega Pixels

terryw -- Sorry, I mean Bruce

john-c. -- I shake too much for my film cameras.does digital "freeze"better??

mikeg -- john-c: If you get the Steady Shot option, it will stabalize the shaking.

terryw -- John.. I use a tripod but with a digital you can see if the

picture is blurry and retake it,, thats an advantage.

john-c. -- Terry: have seen my daughter do that.saves film and $$$$.

terryw -- I also bouth a photo printer and it does just as good a job as

the photo places

terryw -- Bought

terryw -- Gross,, what is your first name?

terryw -- If you don't mind?

gross -- Mark. I took your suggestion to be around this morning. I've

never seen chat before.

terryw -- Thank you Mark/Gross thank you for coming.

gross -- Terry, you are welcome

bruce -- Gross, if this is your first time, I apolagize for all these

guys. Terry is the only sane person in the group.

terryw -- LOL Bruce

gross -- bruce, no need!

john-c. -- Was sanity a requirement??

don48312 -- Camillo, where are you from?

john-c. -- Bruce: drop a line after this is over. We'll meet for a meal one day.

terryw -- Teda,, I like it HOT better than COLD

teda -- It is northern CA so the winters do get cold at nite and 40's

during the day. It is a 4 hour drive from our home.

lenj -- Sorry I just company and have to leave. Goodbye all

don48312 -- bye len

john-c. -- Good luck Len with the frozen fish

terryw -- Bye Len

kdfl -- Terry, are you talking to the computer this morning?

terryw -- Not this morning. KDFL

fee -- {welcome fee}

terryw -- I get so frustrated not being able to to such simple things that

I used to take for granted.

teda -- Amen to that!!

john-c. -- Terry, we all do, Im sure

bruce -- On a more serious subject, did anybody see the US/Russian hockey

game last night? What a great game!

john-c. -- Great Game!!

fee -- hello every1

terryw -- Hi Fee, Welcome, Can I get your fist name if you don't mind?

fee -- Fiona (Fee)

teda -- Welcome Fiona

terryw -- Hi Fiona, How did you learn of this chat session?

terryw -- Fee, sorry

fee -- You can call me Fee

terryw -- OK

fee -- im on loads of MDA chats

terryw -- fee, thanks for dropping in.

don48312 -- hi Fee

terryw -- fee, what do you have?

john-c. -- Hi fee

fee -- is it time to go????

kdfl -- Fee, are you MD or KD?

terryw -- Fee, whe have 45 more mins

don48312 -- no fee, still 45 min 2 go

fee -- I have Multicore/Minicore Myopathy, Hypotonia and Scoliosis

fee -- its under MD

fee -- what do all u have?

butch -- Fee--I have KD. Diagnosed by Dr Fishbeck in 1999. I was so

greatful to find Terry and the KD chat room to get answers to many of my

questions.

terryw -- Fee, todays topic is hobbies

terryw -- or anything else you may want to talk about.

fee -- ok I'll stay till the end

fee -- I like swimming

terryw -- I like swimming also.

sek -- I prefer take sun

fee -- how may times do u go

sek -- I love water, i live near a big lake, Garda lake

terryw -- Not often,, I dont have a pool, and the beach is close but its

hard to get back out of the water.

fee -- do you not have a public swimming baths

don48312 -- we have a wading pool here in Sun City Center that has a chair

lift that puts one in/out of the pool.

fee -- we have a pool at my school with a chair lift thing

john-c. -- I need that chair for 3 days to fix the pond.

john-c. -- Bring that chair: it's just the ticket!

kdfl -- Here in Sun City Center we all types of pool access means. Some

have ramps, some have steps, and some even have a lift chair.

butch -- don 48312--When were you in Sardinia? I was there in 1959 & 1960.

I was also a marine. we were a air and naval gunfire unit.

don48312 -- electronic warefare Butch. was in Sardinia in 1963 on a Med cruise

sek -- don 42312 I was during an holiday some years ago in Sardinia and I

remembers a great underboat near US base. I don't remember name of Islands

maybe S. Stefano

terryw -- Underboat = SUB ?

sek -- a submarine!

don48312 -- we also went to Valencia and Mjorca Spain

butch -- Don 48312. Going on Med cruises was just like getting a all

inclusive vacation from your uncle sam. What type of company were you in?

don48312 -- electronics warefare company. stationed in Camp LaJeune, NC

mikeg -- Here is a LIVE shot of John & I in the computer room at Kings

Point in Sun City Center, FL

http://webpages.charter.net/rmgoynes/General/MVC-211X.JPG

terryw -- I have just recently gotten ito photography.

terryw -- to see some of the fisrt shots I took yesterday go here

www.kennedysdisease.org/dimage.html

fee -- I hate having my photo took im very shy

terryw -- Good PIC Mike

terryw -- I just got the camera 2 days ago

fee -- COOL

john-c. -- you "tech wizards" blow my simple mind each time we talk

terryw -- the DIMAGE 7 has a Big zoom 35-210mm

bruce -- Terry, you take pictures of nature, animals , or what. 5.2meg is

pretty impressive hardware.

john-c. -- good photos, Terry. Got to see w/o disconnecting: i'm learning.

mikeg -- Great shots Terry! I have been looking for a Minolta film scanner

that will scan slides as well as negatives. I really like the resolution

that it offers. That way I can still use my 35mm camera and digitize the

shots with mega pixel results.

sek -- I told a pic

fee -- its nice to find ppl like urself i wish i could

terryw -- fee, you just did.

bruce -- fee, keep searching and they will show up, and, come visit with

us any time you can. We enjoy the company.

fee -- I mean with multicore/minicore myopathy

fee -- I love the MDA chats

terryw -- Fee, Kennedy's disease was also supposed to be so rare. But

since I put up my website I have found many many with it. I was orginally

told that only 40 familys worldwide had this disease. Since then we have

found over 450 people worldwide because of the website www.kennedysdisease.org

bruce -- 450 and growing....

terryw -- yes, we get about 1-2 new people a week that contact us.

gross -- Terry, if the occurance is supposed to be 1 in 40,000; that would

mean 1000+ KD cases in California alone!

terryw -- Yes Gross, THe people that found the KD website are people that

have PC's and thought of looking on the internet for info and found us. I

am sure there are many others that don't have PC's also in other countries

that don't seak english that dont know about us.

bruce -- fee, where do you live?

fee -- COOL. i live in england

john-c. -- Butch, can you drop in to the FL guys before you show up here

in Westminster??

don48312 -- all KD'ers welcome here in Sun City Center, FL

don48312 -- and we also have a Hooters nearby

john-c. -- probably no cold weather either....some folks have all the

amenities.

don48312 -- what is cold?????

john-c. -- Don, you've got a one track mind. That was 45 minutes ago!

don48312 -- lol

john-c. -- There's also a GREAT OLD bar in Balto called the OWL bar, in

Add'n to Hooters

kdfl -- Don, have you ever really gone to Hooters or won't Judy let you go?

don48312 -- been there 1 time, with judy

terryw -- Don is a Hottermaniac

john-c. -- When you're in Balto, we can go to the OWL bar for a yard of

beer: friend of mine owns the place.it's in the old Belvedere Hotel.

don48312 -- sounds good john

fee -- how much does it cost to set up ur own website?

terryw -- fee, make yourself a personal webpage.

terryw -- Free

fee -- really?

terryw -- www.geocities.com or many other places give you free space

terryw -- a free web page builder also

fee -- let me get pen and paper

bruce -- The owl?

fee -- only 14 people in england have my disability

terryw -- fee, if you need help in setting up a website I can attempt to

help you, E-mail me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

fee -- thanks terry

fee -- i am 13 can i still set it up?

terryw -- You are welcome

terryw -- I think so fee.

fee -- COOL

butch -- It is very hard to read and type answers or questions as the chat

moves on. Sometimes I know my answer is far from where the question was asked.

fee -- the AOL chats go mega fast

bruce -- Butch - I agree. This chat room keeps the mind and fingers active.

terryw -- John, we wioll be coming in a day early to check out the sights

in Balltimore

patrick -- {welcome patrick}

terryw -- My typing stinks

terryw -- Hi Patrick

fee -- no it dont terry

john-c. -- I have same problem Butch. My hands don't keep up with my

mind......in fact, my mind is slower than my hands today.

terryw -- when my hands get cold they are no good to me.

terryw -- they are a little cold now

bruce -- Welcome Patrck

john-c. -- yes it does Terry!! lol

butch -- John--You said you would be in the Lancaster area on 19 Mar. Did

you happen to call Annette Clipman? Are you going to meet with her?

john-c. -- yes.we've corresponded. Do you know her?

butch -- John C--Yes Annette is my daughter. She invited me to come to

join you and her that afternoon.

john-c. -- Annette & I have sent a few Emails back/forth.

patrick -- Hi Terry. I had a meeting to go to this AM, and just got home.

Hope everyone is OK.

don48312 -- mike, the girls r acting up here

kdfl -- Don, I'm sure you can handle them.

mikeg -- I was hoping you'd be able to handle then for an hour!

john-c. -- Hi Patrick

terryw -- If anyone is in the market for a digital camera contact me and I

can give you some tips

teda -- Thanks Terry, maybe after I play with my cheap one I'll want to

upgrade

bruce -- Well, I have got to say Goodbye. I need to run by the office for

a few things. Take care, stay healthy and happy, and GO USA!!!!

patrick -- Speaking of hands, does anyone ever have the feeling that their

fingers or hands 'go to sleep'. or feel tingly?

terryw -- Yes Patrick I do, nut not tingle,, they just don't respond

terryw -- but

kdfl -- Patrick, I don't have trouble with tingling. They just don't work

when they get cold.

patrick -- I've noticed that my bulbar symptoms seem to be increasing

lately. Weaker shoulders and handgrip, plus the tingly feeling in my

fingers. I just wondered if it was related to KD or something else at work.

terryw -- Sounds like KD Patrick

butch -- Patrick--Yes--I have a tingling feeling in my left indexz finger

all the time. Some times other fingers are affected also. But, mostly my

left hand. I do alot of writing thru the day and I think that is why most

of the tingling is on my left hand.

patrick -- My neck's been getting noticeably weaker. When I work on

something and look down, it really cramps up. I think it must pinch a

nerve, too.

bruce -- {goodbye bruce}

fee -- ill email u later terry my mate has come online now and i hadly eva

catch him so i have to go now take care all luv Fee

terryw -- Bye Bruce

terryw -- Bye Fee

john-c. -- Bye Bruce.

john-c. -- GREAT!!

patrick -- How 'bout those Kansas Jayhawks?

john-c. -- LOL Terry. Nailed another one.

terryw -- THe olympics have turned into a real Whiners fest.

terryw -- I want a gold medal also.....LOL

sek -- Terry, thanks for all but now it's time to leave on. i'll email you

this week. Sorry but it's a bit difficult to follow actively

conversations. See U

patrick -- The favorite wine in Salt Lake City restaurants is "Give me a

gold medal toooo."

sek -- bye to everyone

john-c. -- Bye sek

terryw -- Ok, Sek,, thanks and I will talk to you soon. I will be away on

vacation til Thursday

sek -- terry good 4u

don48312 -- bye Camillo

teda -- And you deserve one Terry!

sek -- bye

sek -- {goodbye sek}

terryw -- 15 min left

patrick -- Speaking of hobbies, does anyone collect coins or minerals?

terryw -- I have a great coin collection

don48312 -- i collect stocks

john-c. -- Pennies in a bottle

teda -- a little bit of coins, my dad was the real collector

john-c. -- OK, here's my weakness for collecting: I have about 85

miniature whiskey bottles, still full.

patrick -- I found a box of coins I'd saved as a kid. My Mom had put them

away when I left home, and my sister help onto them when my Mom passed

away. She recently gave them to me, and now I've got the bug again.

mikeg -- I wish I had collected pennies insteaed of stocks!

john-c. -- that should be 850

don48312 -- john, breing your wiskey to Balt. your friends will help u lighten your load

butch -- You guys all must be rich to collect coins, stamps antiques and

the such. When I set too long all I collect are flies. LOL

kdfl -- My wife is the collector. She likes Norman Rockwell Figurines.

john-c. -- penny stocks..before or after EndRun??

patrick -- John, I've got a bunch of miniature Tobasco sauce bottles,

still full, from my Army rations. I'll trade you... ;-)

teda -- I,ve got sports memoribila, cards, signatures, etc.

terryw -- John, Small world,, I have about 300 Miniture liquer bottles all

FULL from allover the world. I have been collecting them for 25 years

john-c. -- and you thought all we had in common was KD.LOL

terryw -- I have some real unusual bottles

terryw -- I will take a Digital phot and send it to you

patrick -- A odd fact some of you might not know. When I was in the

service and we had an inspection coming up, I had to get an especially

good shine on my boots. I kept a miniature bottle of vodka in my shoe

shine kit. Mixed with polish, the vodka really helped build a great shine.

gross -- I used to collect and restore'50s Matchless motorcycles. only

have one left, unridden for many years.

patrick -- What's a Matchless motorcylcle?

terryw -- Matchless?

gross -- During the 50's it was the world's largest producer of

Motorcycles, located in England. in 60's became AMC and absorbed Norton.

Gone in '68, a casualty of Englands early bout of 'globalism'

patrick -- Cool. I had a few bikes when I was yonger. I always wanted to

get an old Triumph and restore it.

butch -- Terry: I hope you are taking Sudsanne with you. You both have

earned some R&R.

butch -- Terry: That should be Susanne.

terryw -- Yes butch, Its a relocation reconnisance mission actually.

john-c. -- {welcome john-c.}

john-c. -- back again

don48312 -- rehi john c

terryw -- 5 min warning until Auto cut off

don48312 -- been cut off be4, lol

don48312 -- mike, soups on

john-c. -- LOL!

butch -- It has been great meeting with you all again. Hope you all stay

healthy and strong till next we meet. Must sign off for now.Good bye.

terryw -- Good chat today everyone. met some new people

terryw -- Bye everyone

butch -- {goodbye butch}

teda -- Take care til next time

gross -- Patrick, I always wanted a Vincent..

don48312 -- cya in 2 weeks

kdfl -- I think I'll list all the people at the top this time.

teda -- {goodbye teda}

john-c. -- I'm outta here. Bye all. Enjoy the vacation Terry.

don48312 -- {goodbye don48312}

mikeg -- OK, I'm on the way. Everyone have a great day and until we chat

again - hang in there!

mikeg -- {goodbye mikeg}

patrick -- Adios amigos. Ciao. Tchuss. Later, gators.

kdfl -- Goodbye all.

john-c. -- {goodbye john-c.}

patrick -- {goodbye patrick}

kdfl -- {goodbye kdfl}

gross -- God bless you all, now and ever and forever

butch -- {welcome butch}

john-c. -- Butch; What's your email address?

butch -- This e-mail address is being protected from spambots. You need JavaScript enabled to view it