Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be."

Archives - 2015 and Older Transcripts

Kennedy's Disease Chat Transcript  10-18-2003

Topic:  What challenges do you face?

Host: Terry Waite


Chat Participants:



shakey1 -- Good Morning. terryw -- hi shakey1
terryw -- welcome, where are you from?
shakey1 -- I am from Indianapolis, but we just moved to Scottsdale.
shakey1 -- I am Actual Jim, I sent you and your wife an email yesterday
updating my info. Shakey is just a joke.
terryw -- Ok, yes I remember
butch -- {welcome butch}
terryw -- Hi Butch
bruce -- {welcome bruce}
butch -- Hi Terry and Jim. How are you?
terryw -- I am so tired today I only got a few hours sleep last night. my
lungs are tired
bruce -- Why are your lungs tired?
terryw -- Because I was up for to many hours without rest. My lungs seem
to get that way when I don’t get sleep. You know how your lungs felt when
you were a kid and swam all day and you took a deep breath. that’s the
terryw -- without rest
butch -- Terry--Do you get tired from not resting or sleeping or, do your
lungs act up from overuse?
terryw -- Yes butch, my lungs hurt when I breathe in if I don’t get sleep.
this has been an ongoing problem for years.
terryw -- I try to breathe in and its slow to take a full breathe.
terryw -- But what’s been scaring me the most lately is my swallowing, I
never really had problems until the past 3 months.
terryw -- I have to drink when I swallow food all the time now or it gets
terryw -- only dry foods,
butch -- Be sure to cut meats in smaller portions and try to take smaller
bites of all other types of food.
bruce -- Terry, has anything changed that might be the cause of the
swallowing problem?
terryw -- that’s why I think, I have always not chewed my food enough
always been a swallower. I need to slow down.
terryw -- nothing I know of Bruce.
bruce -- I know that there are times when I do not chew my food correctly
(enough to generate saliva). It is a bad habit from my youth.
butch -- Hey Terry--you are not doing enough singing. Karoke is the way to
shakey1 -- Does everyone have choking issues.
terryw -- Butch, thats why I am exhausted. I was at a Karoke constest last
night up until 2am
bruce -- I use to have a problem, but recently it only happens when I try
to talk and eat at the same time or swallow air with my water.
butch -- Yes!! Sometimes worse than others.
bruce -- My father in law just had his throat expanded (stretched) because
he was having all kinds of problems. It really worked for him.
shakey1 -- I am only 26, so symptoms are not severe, but I definitly have
cronic problems with choking...I have also been awaken at night by the
lovely sensation no air.
terryw -- Shakey,, been there dont that. All the time
terryw -- done
terryw -- I cant type today LOL
bruce -- Jim, we have all experienced that problem. It is scary.
Fortunately for me, I haven't had one of those in several years.
bruce -- Just now
terryw -- most of us have that dry drowning choaking thing from time to
terryw -- I have them a few times a week now
shakey1 -- Dr.'s ask me if i can feel a tremor in my throat...I can't
remember to busy trying to breath.
shakey1 -- Tremors (fasiculatoins) are really bad for me, but I don't
really konw what a throat tremor feels like. any ideas?
bruce -- Jim, I can't say I have ever had one of those.
terryw -- I think I have that. it makes your voice shakey sounding when
you talk or sing. Like a slight vibrato.
shakey1 -- I get that too.
bruce -- Oh, is that what that is. I just thought I was going through
adolessence (sp) again.
shakey1 -- adolesence the best 40 years of your life huh.
bruce -- Good morning Terry and Ron
terryw -- hi bruce.
shakey1 -- I am doing well. Thanks.
butch -- Hi Bruce. What is the good word from the south today?
bruce -- Sunshine....
shakey1 -- Sunshine in scottsdale too.
butch -- Chilly here in Penna. About 44 deg right now.
bruce -- Fall is in the air, Ron, and the leaves are falling faster than
we can keep them picked up. I guess that is one of the problems of 3½
acres of woods.
terryw -- fall is starting here also bruce, Oak leaves falling.
bruce -- Jim, welcome. I have four of my family in the Arizona area (two
in Phoenix.
shakey1 -- Neat. We just moved here in July.
bruce -- Jim, are you a COLTS fan?
shakey1 -- Well that relationship has always been a labor of love...This
year it is much easier to say I am a colts fan.
bruce -- We had the coyotes serendading (sp) us this morning around 4:00
AM. These guys howl up a storm befor settling in.
shakey1 -- Bruce. Are you in AZ now.
bruce -- Jim, I understand. I was born and raised in Minnesota. I am and
always will be a Vikings fan even though it is difficult at times.
bruce -- No, we just retired to Northern Georgia. Before that, PA.
terryw -- typing is bad this morning :(
michigander -- {welcome michigander}
bruce -- Welcome UTAH
terryw -- hi mich
butch -- I'm sure you said before but, where in Michigan do you live?
michigander -- This is only my second time with the chat group ... did you
start an hr ago ... or just now??
terryw -- mich, only 15 min ago.
bruce -- To be 26 again ....
butch -- Terry--How many KD'ers are going to the convention. Can I get a
list of who is coming this year?
terryw -- Butch its about 40-50. I am not sure about the list I will check
for ya
michigander -- Butch, I'm in Utah now but grew up in southern Michigan and
sent to MSU
bruce -- MSU has to be feeling a little better this year with Michigan
having two losses already.
butch -- MSU is doing VERY good this year. Can't say too much about Penn
St. though.
bruce -- I still like Joe P. But, perhaps it is time he stepped down. He
will be missed, but I think the school needs someone that can recruit.
butch -- Pappa Joe wants to stay till his grandson get to Penn St. to play
for him.
bruce -- Terry, that was an amazing story on Ed and the marathon. The TV
station did a great job of capturing it from a family perspective. He is
good for the KDA.
terryw -- Yes bruce, we will put a link on the website I am not sure how
we can get a copy of the video file. Here is the link to Ed's TV News spot
on running for KD
michigander -- Just curious, what states are everyone from??
shakey1 -- Jim, AZ
butch -- Butch--Lancaster, Penna.
bruce -- Georgia - Bulldogs
terryw -- California Here.
bruce -- Ron, UTAH, Jim, check out the website link. It is a good story.
shakey1 -- I will. I have read his personal story on the KDA website.
Encouraging. While running many not be my thing, I would love to do
something like that here.
bruce -- Forget 26, oh to just be 40 again...
butch -- Terry--I guess you received my saga of the hotel room. I finally
got 1 room for the 3 days. What a time.
terryw -- yes butch, our hotel room block is now full. we filled up our
michigander -- Sorry can't make NOLA...anyone taking notes...and how many
years has KDA had these meetings and in what cities??
terryw -- Mich, this is the 2nd KDA conference. but actually our third get
together the 1st was not an official KDA event we were a sub meeting off
of a SMA conference.
terryw -- Mich our last meeting was in Baltimore.
bruce -- Terry, I think I am buying a gas-powered golf cart today. I will
test drive it around our property this afternoon. If it checks out and can
pull our hill, I'm getting it. I want something to take me down to the
lake without having to get in the car, and to run around the property on.
terryw -- bruce I know the feeling. I feel stupid when I take the car down
the driveway.
butch -- Bruce--John Coakley has an electric golf cart that he uses. It
does really well on hills and around the property.
bruce -- The cart I am looking at has front and rear lights, built in
stereo and a windshield. I really didn't care about these options, but the
price seems to be right. My scooter isn't much good for running around the
property - especially in wet weather.
bruce -- Ron, yes, it was John that convinced me to try them out.
butch -- Is it a convertable or a hard top?? Sounds like it has everything
bruce -- Ron, it is a hardtop. A 99 Club Car to be exact.
shakey1 -- Club Cars are tough. They take a licking and keep on ticking.
michigander -- Anyone willing to devulge their age and whether you have a
powerchair or scooter??? I'm 47
shakey1 -- Jim 26, no assistance. Good question.
michigander -- Oops, 57, and I have a JAZZY powerchair
bruce -- I am 56 - almost 57 and I have a scooter. I don't use it around
the house, but love it when I go to fairs, parks, and football games.
terryw -- Mich, I am 42 and have a powered chair.
shakey1 -- Mich, do you have a chair
butch -- I'm 63 and bought a power chair. Right now I don't use it but, I
do use a cane most of the time. I bought the chair used. The price was
bruce -- UTAH - you sound like my brother. When he was in his 50's he
always said he was 40. When he reached the 60's, he said he was 39. Now he
just says he is in his late 20's.
bruce -- Ron, when did you get the chair? What kind is it?
butch -- It is a Jet 3. Really is a comfortable chairt.
butch -- chair
bruce -- I am not familiar with the brand.
butch -- It is a Pride--Jet 3
terryw -- I will not be video taping this years conference like I did last
years. It was to hard on me and I got to tired.
michigander -- If no video, what about a taperecorder...I'd be willing to
make a contribution or buy a tape???
terryw -- Good suggestion Mich, I will bring it up at our pre-conference
board meeting at the end of the month.
shakey1 -- Terry, are there going to be holiday cards this here?
shakey1 -- year, sorry
terryw -- good question shakey, if time allows we will have new ones but
with the conference and our relocation we did not get to create any new
ones. Although we still have some stock of last years, they have no date
so they can be used anytime.
shakey1 -- How do you all transport your chairs/scooters in vehicles. Do
you have lift vehicles or other?
bruce -- I have a electric hoist installed in the back of my van. It works
terryw -- Shakey I have a "Star Lift" on the back of my 4runner
michigander -- I had a pick-up with curb-sider lift to transport my JAZZY
until it was rear-ended and totalled... it had a canopy with specially
made cargo doors
terryw -- mich did your chair get totalled?
michigander -- The chair and lift are in the garage...presently using my
wife's RAV4...but with difficulty walking...might start using the bus
bruce -- It's 11:00. I hate to chat and run, but we are going to a
regional fair today and I need to get the scooter loaded. You guys take
care. Be safe and healthy and make certain you get your flu shots...
bruce -- {goodbye bruce}
shakey1 -- Nice meeting you.
terryw -- I ahve a fall festival to go to today and an art walk also.
terryw -- have
shakey1 -- Do other people have trouble sitting still? Plane and car rides
are difficult for me. Almost like it hurts to sit still.
terryw -- yes, shakey I have lost most of my butt LOL and I have to keep
shifting to stay comfortable.
michigander -- transportation not a problem sitting still... but in be
calves get alot of rolling over and ready to jump out of bed in
A.M. to releave tightness... I agree to losing alot of butt muscle
johnm -- No problem sitting for me. I can ride or sit in front of my
computer all day.
butch -- Jim, I don't have too much trouble sitting unless it is for a
long period of time. Of course whatever I do I am limited by a time frame.
Hi Johnm. Welcome.
johnm -- {welcome johnm}
terryw -- hi johnm.
shakey1 -- Whats LOL
terryw -- LOL is (laugh Out Loud)
johnm -- Good morning all. Just got back from making a computer housecall.
michigander -- What about problems getting up from the floor or
chair...the side of a normal bath tub is to short to get a push up but
our's is very high
terryw -- Yes, I have that problem also. I seem to have it all. :(
johnm -- Mich, I can't get up off the floor except with a lot of help. I
have an Up-Lift Seat Assist to help me get out of my chairs and off my
scooter seat.
butch -- I need a chair to lean on to get me off the floor. It seems to
get harder all the time. I still watch TV from the floor. Very
comfortable. Getting up again, getting to be a challenge.
Remember--STRESS-- takes it toll.
butch -- Try to do more "I cans" and less "I can't" I think when you give
something up you tend to lose it, or it is very hard to get back.
shakey1 -- That's good advice Butch.
shakey1 -- I think this disease is a mental struggle as well as a physical
one. Right now for me it is a bigger mental struggle.
butch -- shakeyl--smile--everyone will wonder what your up to. Try to keep
a good outlook.e-mail Terry--He is very good about talking anyone thru
hard times.
shakey1 -- Terry, you and your wife, have really done an extraordinary
thing by establishing this organization.
terryw -- thank you butch
terryw -- Thanks again.
butch -- Johnm--How is the computer wizzards doing today?
shakey1 -- Butch, I have read every personal story, coakley corner, etc
and I feel like I can relate to Terry in a lot of ways. He has already
been an inspiration.
terryw -- It has been harder for me as time goes on but I try to keep my
story up to date as a log of the progression. My progression rate seems to
be faster than most though.
terryw -- I did not want to scare anyone by my story I just wanted to give
them a realistic log of how it has progressed.
michigander -- So grateful to have found out about this chatroom and
KDA...For the LOL...any crash and burn stories lately... last week I made
to fast a sudden turn in a handicap elevator where I work and had to crawl
on my knees to the front desk to find a chair to boost up on
terryw -- I am glad you find it of value.
shakey1 -- Your story is sobering, but you are very good at articulating
your feelings and symptoms.
butch -- I really miss the pool for exercises. I still walk on a tred
mill. I walk and walk but, don't get too far. Story of my life. The faster
I go, the behinder I get. LOL
shakey1 -- Butch, maybe you need to turn up the speed on the tred mill.
Then you will go farther
terryw -- I try to keep my chin up, but sometimes it hits the floor in
more ways then one.
johnm -- I've been here in Florida for 11 years now and was walking with
no assistance when I got here. Now I am using my scooter, wheelchair and
any other assists that are available to keep as active as posasible.
shakey1 -- no crash and burn stories here.
butch -- Five years ago when I was diagnosed with Kennedys, I didn't know
where to go to find out about the disease. BINGO!!Found Terry and Susanne.
What a God send.
butch -- Thanks Shakeyl For the laugh.
johnm -- I wish we could get some good advice on exercising. I am of the
opinion that with exercise the muscles seem to go faster. I do very
little. I try mostly with my arms and legs. I even find my arms seem to be
losing it.
terryw -- johnm, thats the million dollar question about KD.
butch -- Johnm--I believe we must exercise a certain amount. Use it or
lose it. Don't over do or you lose it and you don't get it back.
michigander -- Physical therapists try to give me exercises to do but one
locks up my calves and just working and keeping up with day to day
activities seems to be exercise enough along with knowing when to rest or
use a scooter
johnm -- It depends on who you talk to. My neuologist keeps trying to get
me to exercise more but I find myself weaker in the morning if I exercise
at night and in the mornning.
butch -- Most physical therapists don't know about dealing with our
condition. Do what you can. Don't over do.No pain no gain!!!Bull!! Don't
do it until it hurts.
terryw -- I am gonna head out now, have to get in the shower. got a lot to
do today. Take care everyone.
butch -- So long Terry--Stay healthy. See you in NOLA.
shakey1 -- Thanks terry.
johnm -- So long Terry. Don't work TOOOOOOO hard.
terryw -- {goodbye terryw}
michigander -- Must be time to say so long...everyone take it easy but
keep on trucking
shakey1 -- Thanks for the chat. Best of luck to all of you. Bye
johnm -- Looks like things are about to wrap up. Keep doing as much as you
can for as long as you can and keep a good outlook.
shakey1 -- {goodbye shakey1}
johnm -- {goodbye johnm}
butch -- So long Shakeyl See you next chat.So long Johnm--Stay healthy.
butch -- Jim--I guess it is just you and I. Anything I can answer for you?
butch -- I guess I am all alone. So, I'll see you all at the next chat.
Stay healthy. Good bye.
butch -- {goodbye butch}