Kennedy's Disease Association

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"Surfing the internet I found the KDA and for me it was like an island for a castaway."

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Kennedy's Disease Chat Transcript 03-09-02

Topic: Helpful solutions to everyday problems

Host: Terry Waite

Chat Participants:

terryw
kdfl
butch
don48312
lenj
dbenson 
jean 


Begin Chat



kdfl -- Hi Terry
terryw -- Hello
terryw -- Ho are you?
terryw -- how
kdfl -- I'm real good. We finally have some really nice weather here in Florida.
terryw -- Its spring here in Calif.
kdfl -- I guess your not talking to the computer again today.
terryw -- Nope,, I had to de-install the ViaVoice but have not
re-installed it
kdfl -- What's been happening with your ViaVoice?
terryw -- Nothing, My registry became corrupt and lots of my software
became messed up. I have had to re-install a bunch of software.
kdfl -- I've been having a lot of problems with mine too after installing
Windows XP on my second hard drive.
teda -- {welcome teda}
terryw -- Hi Ted
teda -- Hi Terry
terryw -- We have had many doctors from around the world say that they are
going to be at the KDA conference in Oct.
terryw -- that's Great
terryw -- Our KDA conference attendance list is growing weekly.
terryw -- We have been holding meetings working on the details of the conference.
teda -- Did you get my e-mail about Dr. Katz?
terryw -- Yes, I will be sending him an e-mail this week. He wrote me last
week to verify I added him to the website. He also said he would help out
the KDA in any way he can. He’s a great guy.
dbenson -- {welcome dbenson}
lenj -- {welcome lenj}
lenj -- Hello Duane, Terry and all
dbenson -- Hi everyone
terryw -- Hi Dbenson and Len
lenj -- Duane, haven’t talked to you since Chicago--hope everything is OK
dbenson -- We have been busy trying to get the house wheelchair accessible
and then Lori's mom passed away from cancer at age 62 and so it has been a
very trying time. But it is good to be back with you guys.
terryw -- Glad to see you are back. Sorry to hear of the passing.
dbenson -- I have a quick question before we get started. Did any of you
who have KD have any trouble with the Medicare supplemental waiver went into effect?
terryw -- I myself am not familiar with that Duane
terryw -- Dbenson,, you may want to ask that again later when more get here.
lenj -- Duane, I received part A & B without waiting the 2 years required
kdfl -- Duane, I guess I haven't paid enough attention to it. I'm not
familiar with it either.
dbenson -- Really. Duane was denied because his diagnosis was Kennedy's
and not ALS. We are still fighting this and have been invited to
Washington, DC to speak on behalf of Kennedy's and the problems we have
incurred with insurance, etc. It is in association with the ALS Advocacy meeting in May.
terryw -- Really Duane.
lenj -- Dane--I was notified that it was ALS related and therefore granted.
lenj -- I didn't ask for it, they just gave it to me
terryw -- It sounds like there is some confusion on KD and coverage’s in Washington,
terryw -- We need to find a way to clear that up.
dbenson -- Boy, that's an understatement.

terryw -- Oh Sorry,,it must be Lori on the Keys
dbenson -- That's right, it's Lori. Sorry I should have said that.
terryw -- Today’s topic is helpful solutions for everyday tasks.. Does
anyone have any bits of wisdom to pass on?
terryw -- We can talk about other topics also.
kdfl -- My wife has pretty much decided that most everyday tasks have to
be handled by her. I keep trying to do as much as I can using any aids
that are available.
butch -- {welcome butch}
terryw -- Hi Butch
butch -- Good day to all here in the chat. Hope you all have been well
since our last chat.
lenj -- Butch, if we were all well, we wouldn’t be here,LOL
butch -- lenj--hope you never lose your sense of humor--ITS GREAT TO BE
HERE ONCE AGAIN.
lenj -- But it's great to get together like this. Can't wait for Baltimore
terryw -- As I was saying Len,, We have had many more doctors from all
over the world say that they would love to attend the KDA conference.. The
list is growing weekly.
butch -- Terry I will be going to Baltimore in Oct. It seems we will be
well attended by doctors and KDA persons.
terryw -- Yes,, The list is growing
terryw -- It will be great too see those from last year and to meet new
Kders
terryw -- Hello Jean,, We hear you will have a representative at the KDA
Conference from France KD.
terryw -- Oh Jean,, you are in Belgium right?
terryw -- What is the biggest concern for most around the house?
kdfl -- My biggest concern no matter where I am is falling and not being
able to get up.
teda -- It use to be the stairs till I got the chair lift
terryw -- Yes,,,, My biggest concern is getting off the floor, my stairs
are a close 2nd.
lenj -- One of my biggest concerns is getting dressed. Some days I don't
have the strength or energy. The warm weather of Las Vegas will allow for
shorts etc., making it easier
terryw -- I have a problem with buttons on pants & shirt collars.
lenj -- Same here Terry
kdfl -- I have two AFO's and while I am wearing them I WALK behind my
wheelchair and when I take them off I RIDE in the wheelchair.
teda -- I changed to polo shirts so that I don't have to button them. If
the pants are a problem I lie on the bed to button them
kdfl -- I always have to lay on the bed to get my pants buttoned.
kdfl -- I hate it when I have to wear LONG pants.
lenj -- I lie on the bed also, but my right arm and hand don't work very
well--thus elastic waist bands do wonders.
butch -- I have real problems with not being allowed to try to do
everytasks. My wife Mary Lou and daughters and son-in-laws do alot of
things for me. I know I'm making this sound like a bad thing but, we
still have to try to do things ourselves.
kdfl -- Butch, I have the same problem with my wife. She is very helpful
and I don't know what I would do without her, but sometimes she does too much.
butch -- Sorry for all the mistakes with my typing. Hi Jean. Kdfl-- I know
they are trying to help us but we still have to make our own mistakes and
solve our problems WITH THEIR HELP.
terryw -- Sometimes I wish I had more help. I am alone most of the time
since Susanne is at work or traveling for work.
terryw -- It gets really hard for me
kdfl -- We better watch how we talk about our helpmates. Lori may take offense.
dbenson -- That's okay. I let Duane do what he is able and then he asks
for help if needed.
kdfl -- Lori, that's a good way to work it, except that it is probably a
macho thing with us men that we don't want to ask for help.
lenj -- Lori that's the key...wait until he asks. Let us try first
kdfl -- It bothers me sometimes that I can't do more around to house. ALL
of the housework is done by my wife and I wish I could help out more.
jean -- {welcome jean}
terryw -- Hi Jean
jean -- Hallo to The USA
jean -- {welcome jean}
terryw -- Hi again Jean
butch -- Sometimes I think having too much knowledge about KD is a bad
thing. I know that I haven't been doing as much exercising as I should
because I don't want to burn up muscle that I can't replace.
terryw -- I feel the same butch
butch -- I wish there was a steroid that we could take to keep what muscle
tone we still have. I don't want to be a body builder, just want to be
able to care for myself.
terryw -- I get so exhausted by the 6 PM each night that I feel like I am
gonna die.terryw -- my lungs get so tired
kdfl -- I really don't get overly tired. I'm ready for bed by 9:30 or 10,
but not exhausted.
butch -- Terry--don't say die. Just look for a way to maintain without
burning yourself out by days end.
terryw -- I have not been able to find that balance. My breathing gets so
hard and strained by days end. You know that feeling that you got when you
were a kid and you swam in a pool all day? the way your lungs felt when
you took a deep breath, that’s the feeling I get.
lenj -- I get exhausted after eating, because my arms don't work well,but
I recover fairly quickly
jean -- Terry - Do make a nap during the day
jean -- When I’m feel burn out, a 10-20 minute nape, help me to recover
terryw -- I try to take a nap during the day but my Pain meds keep me awake
lenj -- Stay in bed longer in the morning and push the tired window back.
Then you will be awake when Suzanne gets home to help.
terryw -- I cannot Len, I get up at 6AM each day because my body aches and
I cannot sleep any longer
lenj -- Terry, unfortunately you are awake and active for a long time
terryw -- yes
butch -- Speaking of eating. Do most of you have trouble chewing most
foods. I am embarrassed sometimes because of poor educate at the table.
terryw -- No problem chewing here.
kdfl -- I don't have trouble chewing.
dbenson -- Duane has had a lot of trouble with food getting stuck on one
side of his mouth and has to manually move it over because his tongue
muscles to do function that well.
kdfl -- I sometimes have to manually push the food from my cheek also.
terryw -- I only have problems swallowing dry foods such as bread.
jean -- Nochewing problems, but swallow problems
butch -- I guess I should have said eating problems. Chewing and
swallowing I think are much harder when I am tired or at days end.
dbenson -- I think everything is harder at the end of the day when Duane
is tired.
jean -- It is just the contrary be me. Much problems in the morning, the
form increase during the day and in the evening I feel "good"
don48312 -- {welcome don48312}
terryw -- Hello Don
lenj -- Hello SUN CITY Don
butch -- Hi Don.
don48312 -- {welcome don48312}
kdfl -- Hi Don. Isn't this weather GREAT?
terryw -- Is anyone typing?
kdfl -- That's the only way I have to talk to you Terry.
jean – Every time typing
lenj -- Terry are the dates and hotel finalized for the Balt. conference.
terryw -- Just about, We are firming things up right now. We think they
will be Oct 13th and 14th. We will send out an e-mail soon with a firm
date but that’s the way it is looking.
terryw -- Sun & Mon
butch -- I still am so grateful for these chat sessions. I have learned
alot of problem solving from you all during our chats. Sometimes I don't
like what is in store for me because I hear what some of you are going
through every day.
terryw -- Butch,, it varies from person to person as you know. So it makes
it hard to judge.
butch -- Lenj--Amen to that.What a blessing for us to have the help of
friends and family
terryw -- We have been getting a lot of visitors at
www.kennedysdisease.org the new counter is great
lenj -- Butch, it's easier to go through it when we have the support and
strength of the others in the group
don48312 -- {welcome don48312}
terryw -- Hello again Don.
don48312 -- sorry, but this chat site really sucks!!!!!!
don48312 -- hello, all
terryw -- Sorry Don,,, I think the MDA site administrators need to tune up
their system. It seems to have some problems.
kdfl -- I couldn't find the MD Chat link at the Kennedy’s web site this morning.
lenj -- Don, maybe the sun is melting you keyboard
terryw -- LOL
terryw -- Don,, you drinking again? LOL
terryw -- Just Kidding
don48312 -- I think we should really think about moving to a user friendly
site, like Yahoo, etc.....
kdfl -- The site isn't too bad if you stay with it. The problem is trying
to catch up when the refresh takes place every 10 seconds.
terryw -- I will bring this up at our next board meeting.
terryw -- Don it will be good to see you and Judy again at the Oct Meeting.
don48312 -- we r looking forward to Baltimore
lenj -- Yes, we need another group picture,the first thing I see when I
open my computer is the Chicago picture at the fountain. I use it for my
desk top and it uplifts me when I turn the computer on
terryw -- I have my own Digicam now so I will be able to take Heaps of
Pics of the meeting for the website.
dbenson -- Okay guys: This is from a caregiver who has learned the hard
way. Let the KDer do what they can without pestering them if they can do
it, but in the same sense, have enough sense as a KDer to ask for help
before something happens such as falling or trying to move something and
having it fall on you, that just makes more work and emotional stress on
the caregiver. So quit being so macho and be more sensible. That's just my opinion.
kdfl -- Lori, I agree with you 100%.
terryw -- I wish that we could get some new personal stories for the site though.
dbenson -- We will try, again, to get Duane's story in.
terryw -- TY Lori
terryw -- I see that the personal stories pages on the KDA site get lots
of visits. Visitors really like those.
butch -- Terry--I started my personal story months ago. It is so similr to
most of the stories that are posted that I think I am just repeating what
has been told by most of thoes posted.
terryw -- It still would be good to have it. Personalize it some with your
lifes story and some Pictures. THats always good to do.
terryw -- my story has lots of pictures
terryw -- if you dont have a scanner send them to me and I can scan them
and mail them back to you.
terryw -- same for you lori
dbenson -- That would be great Terry.
terryw -- I will look for your stories soon then?
dbenson -- We'll sure try.
terryw -- TY
butch -- I'll try to get it done very soon. I want to help spread the word
of KD and hopefully we will reach some young person going into medicine or
research. This might be the person who will develop a cure for KD and all
the MDA diseases.
dbenson -- This meeting that we are supposed to go to in Washington is for
support in future research and hopefully being made more aware of KD we
could possibly get some grant money set aside for us. I HOPE.
terryw -- We have many individuals in high school & such that conatact the
KDA for information for reports that they are doing.
terryw -- Thats great Lori, Lets hope so. DOn,, do you have any photos of that?
butch -- I have heard that stress has alot to do with KD and its
progression. Has anyone else heard of this? If this is true, we must learn
how to manage stress better. How do we do this?
don48312 -- <----- MACHO, LOL
terryw -- that is a good topic butch.
teda -- Stress does not seem to affect my KD
lenj -- I wish I knew how to handle stress. It seems my muscles get
tighter and weaker under stress
kdfl -- I guess I must be pretty laid back as my progression seems to be
quite slow.
lenj -- And I have no where near the stress I used to have while working.
kdfl -- I think the stress come in when we can't do a lot of the things
that we used to be able to do and this frustrates us.
don48312 -- I am looking forward to when we are all cured, I am gonna get
my picture in the paper dancing on a table in a bar, loaded!
lenj -- TOPLESS
terryw -- :()
don48312 -- lol, yup
lenj -- Don, I need a good laugh, I'd pay to see that
don48312 -- Did I tell you guys I represented the KDA at the Daytona 500
this year. There was a row, 1/4 mile long with all wheelchairs
butch -- don--HOW DID YOU FINISH. 1/4 of a mile is one heck of a head
start. LOL
don48312 -- i drafted a w/c with my scooter and made the pass in a corner, lol
dbenson -- That's great Don. I also was interviewed on the MDA Telethon
regarding Duane's disease.
don48312 -- we will work the Telethon again this year, here in sunny FL
lenj -- I was interviewed for the June issue of Quest magazine, an article on KD
don48312 -- super len
lenj -- Terry, did they call you like I requested
terryw -- Len, they never contacted us. :(
lenj -- That sucks--maybe4 they think KDA is a covert organization
terryw -- Maybe I should contact them Len,, do you rememer a name of who
called you?
lenj -- I don't remember but I'll try to find out
lenj -- Let's see how the article turns out. If I'm not comfortable with
it, I'll send a letter to the editor
terryw -- I still may contact them len if thats OK
lenj -- Go ahead
terryw -- LOL
kdfl -- Terry, you can't put in those emoticons when you are talking to
your computer either.
terryw -- I use Yahoo chat everyday
terryw -- I have a regular room I hang out in
butch -- Thanks for the laugh.
terryw -- does anyone else chat on Yahoo rooms
terryw -- I use voice chat
terryw -- its like being on the phone all day with people all over the
world and its free
don48312 -- i have been in yahoo chat rooms. Terry
kdfl -- I've never tried it. This is the only chat I go into.
terryw -- KDFL,, It is great,, you gotta try it
terryw -- I love it
terryw -- O am on most every day
terryw -- I
don48312 -- the disability chats on AOL are also good
dbenson -- Well, gotta go. Talk to you guys later.
terryw -- Bye Lori
don48312 -- tc db
dbenson -- {goodbye dbenson}
terryw -- 5 min WARNING
terryw -- LEts say our goodbyes
lenj -- Goodbye everyone. talk to you in 2 weeks
terryw -- Bye Everyone
lenj -- {goodbye lenj}
don48312 -- tc all, cya in 2 weeks, if i can get on
don48312 -- {goodbye don48312}
teda -- Good bye to all
teda -- {goodbye teda}
butch -- I guess it is about that time again. Hope everyone stays safe
till next we meet. Have a good day. Goodbye from PA.
teda -- {goodbye teda}
kdfl -- Bye ya'all. cy in two weeks if I don't forget.
butch -- {goodbye butch}
kdfl -- {goodbye kdfl}
terryw -- bye
terryw -- {goodbye terryw}





End Chat