Kennedy's Disease Association

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Kennedy's Disease Chat Transcript 01-11-03

Topic:  General Discussion/Open Forum

Host: Terry Waite


Chat Participants:




   butch -- Good morning to all who may be coming aboard today. I guess I'm 
first but definitely not last. OK Patrick, where are you.
terryw -- I suppose he will be here soon.
butch -- Good morning Terry.
terryw -- hello
murf -- {welcome murf}
murf -- Good morning all
butch -- Good morning Murf. How is Karol? Hope she is well.
murf -- She's OK, sleeping
terryw -- Patrick got a new MAC I thing and I hope he was able to get it up & running
butch -- Hey Terry. Did Patrick sell the car to get his new Mac?
terryw -- not really sure, have not heard much about it from him?
billeric -- {welcome billeric}
butch -- Good day Bill.
terryw -- We were so sad to see Annette leave the KDA this week but understand her other commitments. She was fantastic for the KDA.
murf -- That was a shock
terryw -- Yes it was.
butch -- I'm sure her heart is still with the KDA, but, she has to take
care of home first, then give what she can for the KDA. I know you and
Susanne know just what I mean.
terryw -- Yes we do butch.
terryw -- Hi Bill
terryw -- Hey Murray
murf -- Morning Terry
billeric -- Good Morning Folks. Nice day in Phoenix. 70 today.
terryw -- watches Bill as he rubs it in good... LOL
murf -- WOW Houston is at 51 burrr
billeric -- This sun sure helps put up with KD.
terryw -- Yes it does Bill, the warmth really helps KD a lot I think.
butch -- In sunny penna. it is about 27 degrees with alot of wind. It will
not even get above freezing today.
terryw -- I really hate the winter months
terryw -- I would love to move to Hawaii
terryw -- even if I had to live in a shack
murf -- I can't handle the cold at all any more
billeric -- Is your hernia still bothering you, Terry?
terryw -- I still have not gotten to a doc but its not bothering me much.
It just looks bulged out a bit but I thinks its because I have lost mass
in the area and the old scar tissue & plastic mesh they installed on the
left side is there.
terryw -- Not sure if its a real problem or just looks strange
billeric -- Sounds reasonable Terry. Were sure vulnerable for those things.
We really have to struggle to do some(most?) things.
murf -- Is there a KD board meeting this weekend?
terryw -- Yes Murf, right after the chat?
terryw -- why do you ask?
murf -- John was saying a decision will be made on the conference
terryw -- Murf, It is going to Be in New Orleans.
terryw -- In Nov
butch -- Terry, You said you were going to start exercises for you back
and stomach. How is it working out?
terryw -- I have done some but did not want to over do it. But on the days
I did light weights (very light) and did my back & stretching exercises I
felt a bit stronger & better the days after. I bought a back exercise book.
butch -- I've started walking on a treadmill. I'm getting a little farther
each day. I also find it easier as I go. Guess it is working.
terryw -- that's good butch
terryw -- I have lost 8 lbs in the last 2 months in prep for the cruise so
I cam eat & gain it back
terryw -- I just hope that I can do most of the onshore stuff.
walterpon -- {welcome walterpon}
butch -- Terry--be sure to take along pants sized for 34, 36, and 38 for
you will need them until the end on the cruise.
terryw -- ok
terryw -- LOL Butch, we are so looking forward to this.
murf -- When do you leave terry?
terryw -- end of month
terryw -- Hello Walterpon,
terryw -- Walter are you new to us in the KDA?
walterpon -- yes
butch -- Hi Walterpon. Where are you from?
murf -- Welcome Walterpon
walterpon -- Nigeria
terryw -- Walter do you have Kennedy's Disease?
walterpon -- yes
walterpon -- no to Kennedy disease
terryw -- Have you been to the Kennedy's disease site at
butch -- Walterpon--when were you diagnosed? If you have any questions
about KD these guys are the ones to ask.
terryw -- need a small break
billeric -- Shall we give him one guys?
butch -- YES!!!!He and Susanne certainly have earned a rest from all of us.
billeric -- And how. We would be lost without them.
walterpon -- I want u to explain this MDchat for me, so that I can have a
date with u
terryw -- date? Walter
john-c. -- {welcome john-c.}
walterpon -- yes
terryw -- Hi John
johnm -- {welcome johnm}
murf -- Hi John
murf -- ('s)
walterpon -- a convenient date for both of us
terryw -- Walter, the chats are every 2 weeks here at the same time
walterpon -- Next week Tuesday will be ok by me
terryw -- Walter the chats do not run on Tuesdays only Saturdays
terryw -- every other week
walterpon -- when exactly on Saturday?
terryw -- 07:30 Pacific standard time. you can see the schedule here
butch -- Good morning John C. What is your best joke of the day?
terryw -- ty all, We have to get geared back up for a new year of KDA plans
terryw -- Hi Johnm, did not see you sneak in here
terryw -- Does anyone's middle to upper back hurt when they sleep at night?
murf -- Only my lower back
billeric -- I don't have back problems at night Terry.
butch -- My lower back also. I think that I am getting too much sleep.
Since I retired I am getting at Least 7 or 8 hours of sleep. I only used
to get 5 or 6 hours of sleep for many years.
johnm -- No lower back problems for me either.
terryw -- Butch if we lay in one position for to long the back tightens up
I think
murf -- butch me to, only when I get 8 hours of sleep
murf -- I have to lay on my back becuase of my CEPAC machine
terryw -- How's that working for ya murf?
murf -- On longer falling asleep in meetings, worth it
terryw -- that's great murf
murf -- Karol doesn't miss the snoring either
butch -- Good morning John M. How is sunny Florida?
johnm -- Sunny Florida has been pretty sunny but rather cold this winter.
I've had to wear long pants quite a bit this winter. Shorts today though.
butch -- OK John M--rub it in. Here in PA we are wearing our heaviest
coats not shorts. I envy you.
john-c. -- In MD it's 23 and blustery cold.
terryw -- John did you get my msg. about calling you for the meeting?
terryw -- John-c
john-c. -- {welcome john-c.}
terryw -- John-c did you get my MSG about calling you for the meeting?
john-c. -- 10-4 : on your computer, Terry.
john-c. -- Hi guys: anyone but me having a hard time with getting on the
chat today?
johnm -- John-c, no problem with the chat. Looks like Patrick forgot or
hasn't got that APPLE up and running yet.
terryw -- I was just going to say that john
johnm -- Looks like I'm a little ahead of you this morning Terry.
butch -- No John. We are not having any trouble getting into the chat. As
you can see we have caller ID so we didn't know if we were going to let
you have your say today.
john-c. -- Good one, Butch!
butch -- Thought you'd enjoy that.
terryw -- John-c I just got your e-mail. Thanks
john-c. -- I'm going to miss Annette and her enthusiasm, Butch. Glad we're
reasonably close to you guys.
terryw -- Yes, Annette gave us all inspiration.
butch -- John C. I'm sure Annette feels much better about resigning since
you will be there to designate those tasks which she did.
walterpon -- {goodbye walterpon}
john-c. -- {goodbye john-c.}
terryw -- Looks like John-c is having problems with the chat
john-c. -- {welcome john-c.}
murf -- Looks like it, phone lines?
john-c. -- Not the phone.....MDA sent me to a READ ONLY page w/o ability
to talk.
terryw -- John-c,,, have a seat & stay LOL
john-c. -- This ain't fun to an old non-tech guy
billeric -- Wonder what time it is for Walterpon?
butch -- I hope Walterpon didn't get offended by our chatter. If he has
specific questions he should contact us through our e-mail.
murf -- He would be about 5 PM
terryw -- its 5PM for him
terryw -- yep
billeric -- Not bad, I thought worse.
johnm -- You guys got that time zone thing down pat. I looked at it the
other day and couldn't figure it out.
terryw -- I use the world time site to convert times. Its great
johnm -- Thanks Terry, I'll try that.
terryw -- johnm just pic a location and it will show you the time there
butch -- John c. I told you we have control of the site. If you don't tell
a joke we will kick you off again.
murf -- Butch - falling down LOL
terryw -- lol butch
john-c. -- Murf & John M;;; you guys ought to help Butch & me with the
snow we've gotten. I still have about 1" left on the ground.
john-c. -- LOL again guys.
johnm -- John-c, You can keep all the snow. I have no desire to even see
snow EVER again.
murf -- johnm - me too, I'll turn on the TV
murf -- John-c can't send you much sun, it's only 51 in Houston.
terryw -- I don't know how you guys in the snow do it.
billeric -- Me neither. I have enough trouble walking on bare ground.
billeric -- All of the below, John
butch -- Snow days are alot easier since I retired. If I see snow, I roll
over and go back to sleep. Not hard to deal with. But of course, Mary Lou,
going out to do the shoveling, for me this is very hard to accept. What
would we do without our significant others?
johnm -- Butch, I'm with you all the way on how much help our significant
others are to us.
john-c. -- Mary has been the best help for me.
terryw -- speaking of that I need to get Susanne to mow the lawn. LOL
terryw -- I wish I could do more
johnm -- I think that is one of the hardest things for me to accept. Not
being able to help out around the house and do all the things that I
enjoyed doing before.
john-c. -- OK, Butch.. This is coming in a few parts....... Ralph & Martha
decide to get married: he's 93 & she's 89.
john-c. -- They go to the drug store and ask the Rx Mgr if he has
john-c. -- Heart medicine?
john-c. -- medicine for rheumatism, scoliosis?
john-c. -- vitamins? sleeping pills?
john-c. -- Wheelchairs?? walkers//
john-c. -- The Pharmacist replies "yes" to all.
john-c. -- So, how can I help you? he asks
john-c. -- "OK" the couple replies.
john-c. -- "We would like to register for gifts, please" they say
terryw -- hehe
butch -- John C. Thanks I knew you wouldn't let us down.
johnm -- Good on john-c. Here's another one.
johnm -- Grandma's House Little Johnny went with his mom and dad to his
grandmother's house for dinner. When little Johnny received his plate he
started eating right away. "Johnny, wait until we say our prayer," said
his mother. "I don't have to," the boy replied. "Of course, you do," his
mother insisted. "We say a prayer before eating at our house." "That's our
house," Johnny explained. "But this is Grandma's house. She KNOWS how to
terryw -- LOL
john-c. -- LOL, John M
terryw -- John is on a roll now
murf -- LOL
terryw -- Oh that's one by johnm, I get confused
butch -- John M--LOL LOL LOL!
butch -- Every house has a JOHN--and we have two of them.
john-c. -- John M doesn't hold up the ONE Minute sign, and he's the nice
one with the suntan lines.
terryw -- Anyone have any chat topics that you think we should cover send
us idea's. we are running out of topics. Thanks
terryw -- any
murf -- Terry - we need things to help out our day to day lives...maybe
butch -- I wish we could reach out to all those who are seeking
information but don't know about us or this site. How do we get to meet
with them?
john-c. -- Some of the things need to be talked about in person, rather
than in this open forum. This is good for generalities, but we need some
time (hopefully at the next conf) to just let it all out in a room with
only us guys.
john-c. -- .....a few beers , cards, and a cigar?
murf -- john-c That is the best and why I wanted a conference this year
terryw -- the mailer to neurologists should get doctors to guide
individuals to us. also we need to get brochures out to neurology clinics.
terryw -- Correct John-c
john-c. -- you're right, murf. We should plan it with more time for it.
I'll talk to you early next week about my thoughts.
terryw -- We will plan more time for that this year john.
butch -- I think you are right John C. We only had an introductory
session. Meeting everyone was great. But, I'm sure there are problems to
be addressed which we didn't have time to do.
terryw -- I am sure we all have bottled up issues we need to get out
murf -- I'm all ears, no legs but all ears
billeric -- I haven't made a conference yet but am looking forward to this
years. A lot of time with just us guys would be neat.
john-c. -- OK all of you guys......we are open for thoughts for the conf
this fall. Pls send them directly to murf or me for now. Anyone else want
to pitch in & help would be welcome.
murf -- billeric - you will not regret, I promise you
billeric -- Thanks murf.
john-c. -- Billeric: where are you?
billeric -- Minnesota from May to Nov. Phoenix Nov to May
terryw -- bill is a bird
terryw -- he fly's south
billeric -- Almost legless one!
murf -- billeric - your not alone
john-c. -- murf: I would like to hear about your new Van & how you made
the decisions to get this one rather than that one.. Terry: we could talk
about transportation and prudent planning for the future.
murf -- john-c good idea! I'll write you we don't have that much time left
butch -- LOL Terry. Do you write John's material?
terryw -- I was just at the L.A auto show and they had a very neat van
there. it had seats that swing out and lower
terryw -- also a wheelchair lift in back
terryw -- I took pictures for anyone interested
murf -- terry- Id like to see those pictures but mine is working out fine
terryw -- ok murf I will e-mail them to ya
johnm -- I just got a Toyota Sienna standard van and still get along fine
with my scooter and jib crane in the back of the van.
murf -- johnm I also have a Sienna with a Bruno lift in the back
johnm -- Murf, sounds like the same one I got. Did you have to take out
both rear seats?
murf -- johnm-= ya there both in the garage
john-c. -- Billeric: do you know how to ICE FISH??
terryw -- I saw on TV that somewhere up north Ice fishing houses are
falling through the ice.
john-c. -- You need a saw to cut the hole in the ice, and a box to sit on
so your a-- doesn't freeze to the ice.
john-c. -- a can opener and a can of peas.
john-c. -- and a baseball bat
john-c. -- open the can and put peas around the hole
john-c. -- when the fish comes up to take a pea, hit him with the bat
butch -- Thanks for the laugh John.
john-c. -- .......that's really bad as well as old.
murf -- john-c LOL LOL LOL
billeric -- ooh, this hurts a good swede.
butch -- I also heard that is how you catch bears. When the bear comes up
to take a pea, you kick him in the "ice hole".
johnm -- John-c, That is BAD.
butch -- Hey Charles and Anna Lea. Where are you?
billeric -- WE went to Las Vegas this last week. Wow, that's one rough
mother. Hard on a body that doesn't function very well.
butch -- Bill--rough on the body. How about the pocketbook?
billeric -- Not much sympathy there either butch.
john-c. -- Seriously: do you ride up into the van and then drive from your
motorized chair?
john-c. -- Or do you have to get the chair in and then walk around to the
driver's seat & get in the driver's door?
terryw -- I am getting me a road runner horn for my power chair
terryw -- I will send you all pics of the van I saw if you wish
murf -- john-c No I drive to the back of the van, get off and lift it into
the van then walk around and get in the van
murf -- I may have to get the peddle assist adapter soon for brakes and
butch -- Where did the time go? And did Patrick ever master the MAC? Tune
in 2 weeks from today to find out!
john-c. -- Mary just opened the discussion about the future &
transportation this week. Murf: how does that work when weather is bad??
murf -- terry-tell me where I can get one
john-c. -- We saw an "all wheel" Chrysler Mini van on the road the other
day, which started the discussion.
murf -- john-c that's why I live in Houston, some times I get wet, real wet
terryw -- the swing out power seat lifts are very expensive $6000 each
terryw -- they swing out & lower all the way down to wheelchair height
johnm -- Terry, wheelchair height is tooooooo low. I can't even get out of
a wheelchair without my Seat Assist.
terryw -- johnm, it goes from wheelchair height all the way up. wherever
you want it
johnm -- I don't really need the seat lifts as the van is high enough to
make it easy to stand up.
john-c. -- When I was at NIH last year, in the OT/PT dept., I asked them
how to walk with umbrella, briefcase & cane, and open car doors without
getting drenched.
john-c. -- They told me to get a really good raincoat & hat and forget the
murf -- john-c some times I wish I could grow another arm
john-c. -- I'm wanting another appendage
terryw -- what are you saying john-c LOL
johnm -- I've got a pretty good idea what john-c is saying Terry.
murf -- We would rather have legs
terryw -- I will send photos to anyone that request them. Just e-mail me
and request them.
terryw -- 5 min WARNING
butch -- I guess it is about that time, so--Till next we meet. stay
healthy. Have a great day. Goodbye for now.
butch -- {goodbye butch}
john-c. -- Bye to the family
murf -- bye Butch
billeric -- Thanks guys for the chat and Terry for keeping this thing
billeric -- {goodbye billeric}
john-c. -- That's all, folks! Good by for now. Thanks for the friendships.
murf -- bye all
john-c. -- {goodbye john-c.}
johnm -- Talk to you all next time.
terryw -- bye
terryw -- {goodbye terryw}
johnm -- {goodbye johnm}