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Kennedy's Disease Chat Transcript 04-19-2003

Topic:  Falling - A real Concern

Host: Bruce Gaughran

 

Chat Participants:

John-c 
billeric 
susannew
butch 
terryw
murf 
johnm
johni 
pa-paul
patrick
dbenson 
bruce



BEGIN CHAT


terryw -- {welcome terryw}
bruce -- {welcome bruce}
butch -- {welcome butch}
pa-paul -- {welcome pa-paul}
john-c. -- {welcome john-c.}
johni -- {welcome johni}
murf -- {welcome murf}
johnm -- {welcome johnm}
patrick -- {welcome patrick}
susannew -- {welcome susannew}
dbenson -- {welcome dbenson}
billeric -- {welcome billeric}

terryw -- good morning. I figured I would stop in for a few minutes. I
have to go in a short bit to an appointment. I have missed the past couple
of chats due to my surgery but I am recovered now.
terryw -- My appointment is our city's once a month toxic waste disposal
day and I have to get rid of some old paint, pool acid & stuff.
bruce -- Good morning, Terry
terryw -- How are things Bruce?
bruce -- Going well. Keeping busy. I finished my work bench and work area
this past week. It is designed for me so that I can sit and work and
everything is at my heigth.
terryw -- that's great bruce. a nice workbench is a good thing.
bruce -- How is the recovery coming along?
terryw -- Its almost all healed, a little soreness
john-c. -- Hi Terry: Glad you're "healed" up
butch -- Good morning Bruce and Terry. Glad to hear that you are healing
well, Terry. Also how are you and Cindy enjoying your move to Florida. Hey
Bruce--send some of the warm weather our way.
bruce -- We moved to northern Georgia. It is great. We are surrounded by
woods. Life is good after work.
butch -- Bruce--sorry about Florida. I thought you went way south--You
all.
bruce -- It must be something in the water!!!
bruce -- Butch, we are close to all of Cindy's family. It is great coming
back home again.
butch -- {welcome butch}
bruce -- Welcome, Butch
bruce -- The house you are bidding on, Terry, looks great. It should be
nice (ranch style, plenty of open space, etc.)
terryw -- We are counter offering today. We will see they accept.
butch -- Does the rancher you are looking at have hancicapped ramps and
rails?
terryw -- Butch, its a 1 story. It has easy access one one side and
sloping hiss with a gravel drive on the other side. We will need to do a
small bit of modifications but not much.
terryw -- Hills
butch -- Good to hear that. Being able to get around on your own is very
important.
terryw -- Hi Butch.
bruce -- Butch, I understand the weather turned cold up there again.
pa-paul -- {welcome pa-paul}
terryw -- It is very strange. We have so many people from PA come to our
website www.kennedysdisease.org that are diagnosed with KD. More than any
other state.
bruce -- Welcome pa-paul
john-c. -- {welcome john-c.}
pa-paul -- Thanks
johni -- {welcome johni}
johni -- Hi from sunny but cool England!
terryw -- Hi Johni, glad you could make it.
terryw -- Hi Paul,
bruce -- Welcome Johni
terryw -- Pa-paul, are you new to the chat?
pa-paul -- Hello Terryw My first time
john-c. -- Hello all from (once again, COLD) Maryland
bruce -- Hello from warm and sunny Georgia. It is supposed to be 80 today.
bruce -- Welcome John
terryw -- Pa-paul, where are you from?
terryw -- PA?
pa-paul -- Yes Cold Pennsylvania
john-c. -- Paul-Where in PA
bruce -- PA Paul - welcome again. Everything is pretty informal around
here. We just moved from the Downingtown area in January to northern
Georgia.
pa-paul -- Central Eastern PA Just outside aLLENTOWN
bruce -- I know the area well, Pa Paul
pa-paul -- Great
butch -- Pa-paul. I am from Lancaster PA. Drop me a line at
This email address is being protected from spambots. You need JavaScript enabled to view it.
pa-paul -- will do
john-c. -- BUTCH_ That's a wrong address isn't it?
butch -- Should be This email address is being protected from spambots. You need JavaScript enabled to view it.
butch -- RIGHT--MIND KNOWS WHICH IS RIGHT--FINGERS DON'T.
terryw -- Has anyone fallen lately?
butch -- We are trying to educate more Doctors about KD so I hope this
will bring more info about KD and stop some of the misdiagnosis that we
had to endure.
john-c. -- That's right, Butch- we have a mailer that's been in the works
for a while that Susanne and Terry have been working on.
terryw -- Last night we had a TV news reporter talk with us about doing a
story on KD and the KDA. she said that she would love to do a story on KD
and misdiagnosis and on how the KDA is helping.
bruce -- Terry, a news report on KD would be helpful to get the message
out there. What do you think the chances are for the report?
terryw -- I think they are very good, she was very nice.
bruce -- Well, should we get started or give everyone a few more moments
to log on?
murf -- {welcome murf}
john-c. -- Hi Murf
terryw -- Hi Murf,
bruce -- Welcome Murf
terryw -- Hi John-c
murf -- Good morning all
pa-paul -- Good Morn Murf
terryw -- thank you John
murf -- Terry - the operation whnt well?
john-c. -- Falling: I'll have to write about my experiences with falling.
I'll title it "What Else Can I Do While I'm Down Here"
bruce -- John - you are good!
terryw -- Pa-paul, are you signed up with the KDA?
pa-paul -- I think so
butch -- I fell in the house a couple of months ago.s Tried to back up and
caught my heel on the rug. Once you start to go--you might as well try to
make it as easy a fall as you can.
murf -- Falling: I've fallen in more countries than most people have
visited.
terryw -- We need built in airbags on us.
johni -- Is it just me, or when you fall do you always pick the worst
places?
bruce -- I thought we could do a little analysis of 'falling' if you don't
mind. Perhaps look at the reasons for most falls, how to fall correctly,
and maybe how to reduce falls and injuries from falls. What do you think?
terryw -- they inflate when they sense we are going horitzontal
terryw -- spelling ahhhhhh
murf -- The fingers arn't working very good this morning
terryw -- Susanne plays softball with a bunch of Hollywood stunt men,
maybe I can get some falling tips from them and put them on the site.
john-c. -- I have fallen so often and for so long that I buy my clothes at
an outlet store of Jos A Bank, about 5 min from here. They know me, have
great sales about every 60 days and put those good sportcoats ($250- 300)
as low as $30.00. Since they know me, sometimes I get a call in advance.
bruce -- I have kept a log of all of my falls for the last five years. It
tells me when, where, what happened, any inuries, and why. It is quite
helpful in understanding the reasons for my falls.
butch -- I think most falls are caused by carelessness. We tend to try
things without considering the consequences of our actions.
johni -- Do you guys always know that you are going to fall, before you
do?
terryw -- never
bruce -- John, I have more suits and pants in my closet with holes or
scuff marks on the knees. I understand where you are coming from.
john-c. -- I don't mind losing an elbow in a $30.00 one, or a knee in the
pants.
murf -- That a good idea Bruce.
pa-paul -- I cant count how many but only one that broke a bone was Jan 2
1984 dont know if KD had anything to do with it or not
terryw -- but I do know when I am doing something dangerous and it puts me
at risk but I still do it. Dumb me, My foolish pride. I need to learn
better.
johnm -- {welcome johnm}
bruce -- Why do we fall? (My diagnosis of a normal fall) Not paying
attention when walking Loss of balance (turn too quickly, uneven ground,
etc.) Leg muscles are weak (knees buckle or not enough strength to step up
or down) Stumble (dragging heal, stub toe, etc.)
terryw -- Hi Johnm.
butch -- NO!!! If I knew I was going to fall--I wouldn't do that.
murf -- Tripping over that air bubble on the carpet
johnm -- Good Morning all.
bruce -- But, most of the time it is because I am not paying attention
(talking to someone else, window shopping, looking up when I should be
looking down, etc.)
murf -- Morning Johnm
bruce -- Good Morning, John M
terryw -- slippery surfaces are way worse for people with KD than the
normal able walking person.
john-c. -- Some days are weaker than others, but I have fallen 2x when I
tried to go up a step that is about 1" higher than normal.
terryw -- our balance is bad
bruce -- Without handrails (often time two of them), steps are a killer
for me today.
murf -- I don't know how you people do it in winter climates
butch -- Looking down may keep you from "Looking Up".
john-c. -- Since I started using a cane 100% of the time, I've only fallen
once every 6 weeks instaed of once a week.
terryw -- We tend to fall backwards real easy. Also when we fall forward
it most times because our leg musle get to that point of no return on
being able to push back and just collapses.
terryw -- Muscle
pa-paul -- I began ther cane thing, reluctanly but it does help
patrick -- {welcome patrick}
terryw -- I use Susannes shoulder as a cane when we go out.
murf -- I fall usually when stepping off a curb
john-c. -- People get so spastic when they see blood and someone on the
ground. So, here is an idea I started about 8 years ago. It is really
helpful when there are others around.
terryw -- But it hurts her back if I use it to much
terryw -- Hi Patrick
bruce -- What can we do to help minimize the number of severity of the
falls? I use a cane most of the time now. When I feel weak or tired, I
usually ask for help (someone's arm or support). I use my scooter more
often. I regularly stretch the joints (back, arms, legs, neck, etc.) And,
I regularly exercise - focus on twisting, turning, balance, etc.) Finally,
when walking, I try to stay focused on the activity and the ground right
in front of me. It usually helps, but not always.
bruce -- Welcome Patrick
murf -- Hi Patrick
butch -- I hate using the cane all the time. But, I think the more you use
it the more dependent on a cane you become. I guess it is better than
falling.
terryw -- I need to go everyone.. Sorry, I have an appointment.
terryw -- Patrick, Did you get a package from us?
johni -- I don't fall so much these days, because I don't do much walking
- I just can't.
butch -- See ya Terry--have a good Easter.
bruce -- Butch, I think it is a male ego thing. The cane is another
'crutch' for me and I fought using it. Lately, it goes with me everywhere
when I am out and about.
bruce -- Take care, Terry, and good luck on the bid.
pa-paul -- Yes Butch, I agree Just that when i begin to fall I remember
the cane
john-c. -- ALL of my handkerchiefs are the Western RED ones. Wrap it in
red & folks don't panic. Then get 2 of them to lift by the belt - since I
can't get up anymore by myself. But, the trick is in stopping their panic
& get them to listen to you.
john-c. -- Bye Terry.
terryw -- {goodbye terryw}
murf -- Have a good week end Terry
patrick -- Hi everyone. I just scanned the chat and it looks like we share
common ideas about falls.
john-c. -- Butch- has that helped with # of falls?
bruce -- Patrick talked about this subject in an earlier chat - How to
fall.... He mentioned: Relax the body (attempt to roll with the fall.)
Protect the head. Don't lock your arms (an outstretched arm or hand is
easily broken)
susannew -- {welcome susannew}
butch -- Patrick--welcome back. Haven't talked to you lately. How has your
health been?
patrick -- My heath is better in some ways; I just go day by day and try
to listen to my body.
john-c. -- Hi Susanne
bruce -- What other tips does someone have to help prevent falls or
minimize the damage from a fall?
bruce -- Welcome Susanne
murf -- Good morning Susanne
patrick -- I think being aware of your surrounding, and keeping your mind
on the act of walking is very important. Also know if you're getting
tired.
johni -- Falling for me was such an instantaneous thing. I did not get
chance to think how, I just went.
bruce -- I noticed that my wrists are not quite as strong now. The cane I
have might have to be replaced with a three poster.
susannew -- Good morning Murf... was trying to catch up, but good luck!
The refresher keeps moving the text...
john-c. -- Bruce: I have fallen regularly since I was about 12. For years
I thought I was clumbsy. Now I find out that I have KD AND am also
cuumbsy.
pa-paul -- Likewise Its over before i relaize its happening
butch -- Jphn C--I think so. I know I am glad to have the cane when going
up inclines but stairs without handrails I won't do.
susannew -- Thought I'd stop in since Terry got off the keyboard!
johni -- At times I would just be standing there, then I would be in a
heap on the floor
john-c. -- And cann't spel ether
johnm -- I guess we haave to very aware of everything around us to help
prevent falls. I don't walk very much at all anymore. When I go to the
back of the van to get my scooter out I ALWAYS lock my knees. Any other
walking I do is behind a wheelchair around the house.
susannew -- Protecting yourself in a fall is very important. Broken bones
that have complications are very dangerous for anyone, and those with KD
may be more susceptible to complications.
bruce -- Johni, I think we have all been there at one time or another.
Again, I find that if my mind is not telling the muscles to 'hold' or
'left' then I could end up on the floor.
john-c. -- Me too Johni-that's why I always lean against something.
murf -- Most of the walking I do now is in the house and I fall there once
in a while too
johni -- I could only walk with the aid of something or someone I could
lean on
susannew -- We know of one individual with KD who had a severe break in
which they had to do surgery. A blood clot moved to the lung and formed a
fatty lung embolism developed and the individual passed away. With KD the
respiratory system may be weakened to start with.
patrick -- Bruce, I bought a cane that I use all the time now - and I have
a bunch of canes - I saw another using the brand at Baltimore. It is so
well designied and is sort of flat on top, so there are no pressure
opints. It's easy to lock your wrist and thus it does require a lot of
strenght to use. I'll post the brand name if I can find the tag that was
on it when I bought it.
johnm -- Falling happens so fast that I don't even know which knee gave
out to try and prevent it next time.
bruce -- My wife, Cindy, is often a little smarter than I am as far as
knowing what my true capabilities are. The problem is that I don't always
listen to her on this subject.
bruce -- Thanks, Patrick
susannew -- Terry fell over backwards a couple months ago in the garage. I
didn't even know - the garage door was open and our neighbor saw him and
came to help. Thank God he didn't hit his head. He put his elbows down to
catch his fall and they were pretty swollen and bruised up for a couple
weeks.
johni -- I was crossing a road once, and when I tried to step onto the
curb I fell. It was very crowded, but everyone obviously thought I was
drunk, and did nothing to help. I felt so humiliated.
pa-paul -- Patrick- Yes please post that cane Name thanks paul
patrick -- Some times I feel tired or crampy, and know I'll fall. Other
times I fall with no forewarning - boom, it just happens.
susannew -- Patrick: Did you get a package from us?
bruce -- I find that if I feel myself falling, the best thing to do is to
relax and go with the flow. If I do, most of the time I am not injured.
john-c. -- Those backward falls are really dangerous
murf -- I find it difficult sometimes to stop once I get started walking.
I often stumble here
patrick -- Susanne, no, but the mail and UPS come in the afternoon.
susannew -- A cane is good to help keep your balance and also to help you
get up if you do stumble and fall.
johnm -- My falls usually cause me to end up with bloody knees. Crawling
to something to help me get us doesn't help the knees too much either.
bruce -- I use to fall forward all the time. Recently, my falls are
backwards or to the side for some reason. The knees buckle forward and the
body goes backwards.
johni -- Now I am never on my own.
dbenson -- {welcome dbenson}
susannew -- ALthough, Scooters and wheelchairs are your best bet that you
won't fall while being mobile.
susannew -- Good morning Lori and Duane.
bruce -- Welcome dbenson
dbenson -- Hi all, sorry I am late.
john-c. -- I could join with those stunt men Susanne plays ball with if I
had an extra or 2 to lift me back up.
susannew -- How's are you guys and Boyd?
patrick -- In the summer I wear shorts and have bloody knees (or scabs)
for three or four months - they never get a chance to heal 'cause I fall
so much.
susannew -- John, our team could probably use your help right about now!
dbenson -- We are all doing fine. Busy this time of year for all.
butch -- Lori--I sent some e-mails your way and they were returned. Did
you chabge your e-mail address?
bruce -- I feel bruised knees are my 'red badge of courage' these days. It
still proves I am mobile.
john-c. -- Johni; I've been in that same situation too.
dbenson -- No Butch, it is still the same. (This email address is being protected from spambots. You need JavaScript enabled to view it.)
butch -- Why is it that you see a typing mistake as soon as you press
send?
patrick -- I recently bloodied my knes from carpet burns falling in my
living room. Inside, I just try not to fall on anything dangerous or
fragile.
murf -- Butch - your fingers are working as good as mine this morning
john-c. -- Lori- Glad to talk with you today: I don't remember you in
recent chats.
butch -- Is Dwayne doing better now that the weather is warming up?
susannew -- I am on an interesting jury trial this week - and that's all
I'll say about it... for now - its a 3 week trial. But...
dbenson -- I don't hit too many of the chats but enjoy them when I can.
patrick -- Butch - the same reason you see a mistake after proofreading
and editing a dozen times, yet the mistake pops out only after you make a
hundred copies or so.
susannew -- through expert testimony's I've learned about a couple new
avenues of medical help, which I never knew existed... so I'll be sounding
a bit naive here to some... but I want to share for those who don't know
also.
dbenson -- Yeah, Duane is about the same, a little weaker in the legs but
this time of year he tries to do to much and ends up getting sick again.
susannew -- I've never heard of a physiatrist. This is a doctor that
consults with individuals with disabilities and attempts to create new
ways to give them the same kind of life/access they had before through the
use of aids.
johnm -- My AFOs (Ankle Foot Orthotics) keep me from breaking anything in
my foot if I do go down.
murf -- Susanne - anything that might help us?
susannew -- I think this would be a great kind of person to come talk with
at the Conference. They don't just talk about custom wheelchairs, which
may not be a KD individual's needs.
john-c. -- Lori: once you let those farmers know about City life, they're
never the same
bruce -- Has anyone noticed a difference when they wear high top tennis
shoes or boots verus regular shoes?
pa-paul -- bruce - not me does not seem to matter
patrick -- I wear high tops to protect my ankles. Before I knew I had KD,
I trashed my ankles regularly, especially my right one.
johni -- I can only wear shoes that give solid support. Sandals or tennis
shoes aren't any use to me.
john-c. -- Bruce: yes- I wear a 6" boot/shoe in the rain and
snow-waterproof- also helps with the weak ankles.
murf -- I need to wear good shoes like Rockport walkers etc.
johnm -- I only have one pair of tennis shoes that I wear all the time.
They are the VELCRO kind.
susannew -- But also talk about how to reach things, adjust the physical
world for you... ramps, lowering cabinets, using aides to reach things,
etc. It might be overkill, but if we talked to a qualified physiatrist
about a KD individuals challenges, falls, slow gait, other things, and
they truly consulted with KDrs, they might have some very good
suggestions. It also goes along the line of an occupational therapist,
recreational therapist and physical therapist.
bruce -- Good idea, Susanne. Anyone that can help is worth listening to.
john-c. -- Susanne: that sounds like a topic to be considered for one of
the Conference talks in New Orleans
susannew -- They tend to work together as a team. One thing I thought
would be interesting is a recreational therapist. While Terry and I have
tried to alter our lives to be able to do things together. For instance,
no more hiking, biking, but lots of movies and photography since KD, there
might be other things a recreational therapist would suggest for us or
other KD individuals for recreation.
murf -- Susanne - sounds like some one we want to talk at the conference
johni -- I have a problem with my occupational therapist - She wanted me
in a wheelchair full time, and to use a hoist, before I was ready for
either.
susannew -- Sorry, didn't mean to get off topic, just the idea of what a
physiatrist would suggest to prevent falls popped in my brain!
murf -- Johni - I've been in mine for about 6 months now and don't regret
it
bruce -- Johni, I find you have to weigh each suggestion given and decide
what is right for you at the time. If you are wrong, you'll know soon
enough. Quality of life is still important to me over total safety.
susannew -- I think just like everything, there are good doctors and bad
doctors. The only one who can truly state and determine your needs is
yourself!
patrick -- Does anyone get the FSMA 'journal'? (FSMA=Families of Spinal
Muscular Atrophy). In the most recent one was a good article about a woman
(probably Type III SMA ???) who talked about the intersection of getting
older and having SMA.How working together they really caused a body to
take longer to recover, need more rest, etc. Many things she said sounded
like I felt.
johnm -- I think we all have to continue to do as much as we can for as
long as we can to keep from getting VERY depressed.
murf -- I haven't fallen to much out of it :-)
susannew -- I've never met any of these kinds of medical professionals so
have no opinion, but thought an interesting avenue.
john-c. -- These conversations with you all are like a mental therapy
session.
johni -- I'm in my wheelchair most of the time now, but I had longer on my
feet through my choice, not hers, which is how I think it should be.
butch -- John C--If anyone in this group is mental----It is you.
susannew -- The way the physiatrist described what he does is to help keep
people as independent as possible for as long as possible. So they don't
have to ask for help... testified that that can become degrading, lower
self esteem and gets to be annoying.
bruce -- One of the upcoming chats is on depression. It is a good subject
since most of us probably go through something depressing during the
course of our 'growth' with KD.
susannew -- I love these chats. They help me to realize we aren't the only
ones who go through this and to compare notes with others and what they
are going through and how they solve their challenges!
murf -- John-c where is our joke?
johni -- That will be intersting Bruce, I'm sure we have all been there.
bruce -- Right on, Susanne. Some level of independence is still important
to me.
john-c. -- When I started using a cane full time, I asked the OT/PT folks
at NIH to show me how to walk with a cane, a briefcase, and an
umbrella......
johni -- Interesting!
susannew -- JohnC: I just imagine inspector gadget by your description!
butch -- NIH has excellent people to help or recommend certain tools to
help us lead near normal lives. Most are free if you are in the program.
Help to find a cure. Join me at NIH.
patrick -- I hate to ask for help- I feel better as the go-to person and
enjoy helping others. I often felt bad for needing help myself, for
holding the group up, etc.
murf -- John-c They build those hats with umbrella's on them
susannew -- Murf: In pretty colors too!
john-c. -- ....and they , using common sense, said "Get a really good
raincoat and a rain hat, and throw your umbrella away. Great common sense
advice. That saved fumbling around a lot.
susannew -- Heck, JohnC, you could even get a fan and a drinking straw
attached!
susannew -- Ok, now I'm picturing Morton's Salt container!
susannew -- I'll think of you everytime I pull out our salt!
susannew -- I guess we could nickname you "Old Salty"!
susannew -- Ok, maybe not the old part!
bruce -- I am now at a point where I do not feel bad asking for help. When
I fell stepping up on a curb in January. I looked for the biggest guy in
the area and asked for his help. He picked me up like a sack of potatoes
and I was on my way again.
susannew -- Hee, Hee!!!
john-c. -- It's a good thing I'm not sensitive
patrick -- However, I read something that other people are the same way,
and when even complete strangers help me, it makes them feel good.
murf -- Good one Sussanne LOL
johnm -- My big thing for staying active and allert is helping people with
their computer problems.
susannew -- Excuse me, I'm a bit giddy, I've been locked away in Jury for
2 weeks and working evenings to catch up with my job, negotiating a move
to the Oakhurst area and need a bit of lighthearted!
john-c. -- Johnm Boy do I need you about once a week!
bruce -- It is good to luaugh. Uncontrollable laughter is even better.
susannew -- Perhaps Johnm, you might want to host a chat on computer
questions to help those in the KD community?
patrick -- Do you get to fool around in the jury room, like they do on TV?
butch -- John M--Do you make house calls?
johnm -- John-c, email me at This email address is being protected from spambots. You need JavaScript enabled to view it. and maybe I can answer some
questions.
murf -- Fall down laughter
bruce -- We have ten minutes left in this chatroom.
susannew -- No fooling around at all, a very serious case... But fun on
lunch, we call ourselves the Jury Club and go to lunch together... getting
to make some very good friends. Some I hope to keep in touch with in the
future. Very VERY hard not to discuss the case with them at lunch. We
don't, but everytime I want to say something about the trial I have to
stop myself. We want to make sure its a fair trial.
johnm -- Butch, I sure do but only in Sun City Center.
butch -- Actually we have about 25 minutes left. Till about 11:45.
john-c. -- Thanks, John m
john-c. -- OK- the joke.... Church full to the walls.....
susannew -- Butch: How is Annette? How is your wife?
bruce -- Sorry, I forgot about the extra 15 minutes.
murf -- John-c what is happening with the cane you are developing?
john-c. -- Satan strolls in - Preacher and everyone runs oue, except
johnm -- We have a 2000 member computer club here in the Sun City Center
retirement community. There are a lot of people needing help.
susannew -- watch it John, Easter is tomorrow!
john-c. -- ....one older man who is unaffected.... Satan gives him all the
reasons why he should be scared to death, but......
butch -- Bruce--thanks for hosting the chat today. Falling is a very real
part of our lives. Not getting hurt in a fall is our ultimate goal.
john-c. -- He tells Satan that he has been married to his sister for 45
years.
billeric -- {welcome billeric}
susannew -- If you have ideas for future chat topics, please email us at
This email address is being protected from spambots. You need JavaScript enabled to view it. Visit the KDA site for future planned topics at
www.kennedysdisease.org
patrick -- Susanne, do you mean John-c might 'fall from grace'? :-)
bruce -- Your welcome, I do think we need to be more aware of our
surroundings and our capabilities. I am an advocate of stretching and
exercise to minimze falls and the injuries caused by falls.
john-c. -- ........and he's not scared of anything now.
bruce -- Welcome billeric
butch -- Mary Lou is healing from the heart condition. Spent 6 days in the
hospital. Annette is doing well. Thanks for asking.
susannew -- JohnC... your keeping a blonde in suspense!!!
billeric -- Sorry folks, forgot about the time zone change. Arizona
doesn't change with he rest of the country
susannew -- Lori: How is Duane doing? with his liver?
john-c. -- Glad MaryLou is better.
susannew -- Bille: Likely story!
johni -- Gotta go. Stay safe everyone and Happy Easter
patrick -- Has anyone had any particularly funny falls or spectacular
falls?
bruce -- Take care Johni. Have a Happy Easter. Thanks for joining us.
billeric -- I know, I know!
butch -- Bill welcome--Late is better than not showing up at all.
dbenson -- He is doing about the same, we quit getting the liver test done
as nobody seemed to know what it was from or what to do about it.
johni -- {goodbye johni}
susannew -- Take care Johni! Happy Easter to you also>
john-c. -- Daylight savings started 2 weks ago, Billeric.
susannew -- Mr. Coakley - you are supposed to be giving us the rest of
your joke! You can't leave us hanging like this...
billeric -- I am in a leg brace right now from stumbling and falling.
Broke a bone in my ankle. Hope I learn a lesson.
johnm -- I HATE daylight saving. I don't understand why we still NEED it.
butch -- Funny falls--Not so funny but I rolled over in my sleep and
rolled right out of bed. LOL, Not hurt- only my pride.
susannew -- How did you stumble? Trying to walk up a curb, just in
general?
bruce -- He gave you the punchline already - He was married to the devil's
sister for 45 years so nothing cam scare him.
john-c. -- Susanne- I finished it ---well, I thought it was fairly OK.
Much better in l o n g form
billeric -- I don't like it either. The folks in Az. have it right.
murf -- I missed it to Susanne
susannew -- Oh, missed the punchline - You know, blonde I tell you!
john-c. -- Murf- I'll email you about the cane.
johnm -- Helooooo, Susanne.
susannew -- I see it now! : )
bruce -- Sorry to hear about the broken ankle. I you in a walking boot?
susannew -- johnm: LOL
murf -- Too much other good conversation going on
pa-paul -- GoodBy ALL Have a Happy Easter
billeric -- I stepped off a 4 inch lip in the garage, Plain wasn't
thinking and went down. Knew I broke something. And I did.
susannew -- Take care Paul.
john-c. -- This auto-refresh is tough with an active group like today.
johnm -- I broke my foot and was in a wheelchair for three months and
don't want that to happen again.
bruce -- Have a great Easter, Pa paul. Thanks for joining us.
murf -- Bye pa-paul have a good Easter
john-c. -- Bye Paul....what's your email?
billeric -- Yeah Bruce a walking and sleepping boot. Great fun.
pa-paul -- This email address is being protected from spambots. You need JavaScript enabled to view it.
bruce -- Boots are better than casts. I was thankful I could take mine off
to wash and rest it.
butch -- PAPaul--Drop mne a line.
john-c. -- thks
susannew -- I broke my foot once - a small break but worse was the pulled
tendon. Took 3 months on crutches, 6 months to heal... a simple thing... I
stepped on our garden hose and my foot bent to one side... something that
little can create so much... and probably worse with a KD individual with
balance problems. Terry probably would have fallen.
murf -- I fell stepping of a curb in London in front of traffic. Some
stopped but some drove around me.
billeric -- I have only had this thing off twice in a month. See the Dr.
on Wed.
john-c. -- BillE- are you in AZ or MN for the summer?
bruce -- Tendoins and ligaments take much longer to heal than bones.
dbenson -- Are dates for conference set yet?
murf -- It took about 3 minutes to get up and back to the side walk
bruce -- I sure wish they would offer a spell check for this format. It is
embarassing at times.
susannew -- BillE: The land of giant mosquitoes and tornadoes!
billeric -- The KD thing and breaking something is scary. Recovery time
unknown.
susannew -- The dates for the conference were emailed out... did you get
them?
john-c. -- Seriously, I really am on the constant look-out for small
pebbles, sticks, etc that cause the slight twists.
murf -- I haven't broken any thing yet but have lots of cuts and brusses
susannew -- Bruce: Tenderloins... isn't that what you meant?
billeric -- John, we are in Az. now but hopefully will leasve for Mn. in a
couple weeks. If the Dr. will let me.
dbenson -- No. I have not received anything from KD in quite a long time.
I was wondering if somehow I was not receiving them. Please try again.
bruce -- That is exactly what I meant. Thanks for the correction.
murf -- I hear you bruce
pa-paul -- {goodbye pa-paul}
butch -- Happy Easter to all. I must go to an egg hunt. Our Lions club
color and hide about 90 dozen eggs. It takes about 45 minutes to hide them
and about 2 minutes for the kids to find them. Solong till next chat. Stay
healthy.
patrick -- And when you break or sprain something, KD makes rehab a female
dog.
susannew -- Here's the email: The Kennedy's Disease Association is pleased
to announce the 2003 KDA Conference & Symposium is now affirmed. We have
negotiated our contract with the Renaissance Arts Hotel in New Orleans,
Louisiana and we are excited to be able to offer this valuable meeting for
you to meet others with KD, learn more information about living with KD
and to meet and listen to a panel of Kennedy's Disease researchers and
doctors. The dates of the conference are Wednesday through Friday,
November 5-7, 2003. We will soon begin taking early bird registrations and
will announce more information as it becomes available. We are now working
on a conference agenda and would like to ask you what type of topics you
would like to see discussed at this years' conference. Please email us
back and let us know. Thanks go out to the KDA's meeting committee team!
bruce -- BillE, I was born and raised in Austin. Many of my family are
still in the great "Lake" state.
bruce -- Take care, Butch. Happy Easter.
susannew -- I wonder if something is wrong with your email address? We've
sent out a few announcements recently...
butch -- {goodbye butch}
murf -- Bye Butch
john-c. -- Murf: My pride got broken in a fall when I was 12, and it still
gets re-fractured about every 6 weeks.
bruce -- <10 minutes to go.
susannew -- I'll try again once chat's over. IF you don't get anything,
email us.
billeric -- Bruce, We live in Alexandria in the summer.
dbenson -- I'll do some checking to see if things are being blocked.
susannew -- A lot of email providers are blocking KDA announcements,
thinking they are spam... that could be happening? YOu have to alert your
provider you want our emails.
murf -- It embarassing at times
bruce -- BillE, I know the area well. Thanks
john-c. -- $%^&* happens, Murf
susannew -- Johnc: How do you pronounce that?
murf -- Thats life John
john-c. -- @#$%^
susannew -- JohnC: Don't do it. I know you're the type that would spell it
out phonetically!!!
murf -- pronounced shoot
billeric -- I don't know if we ever get over the embarasment of falling. I
knew I broke something but still had to get up. Nutty isn't it?
dbenson -- Got to go and check on my E-mail problems. Talk to you all
later.
john-c. -- I have NO respect for anyone who can only spell a word one way.
bruce -- Five minutes left - Just in case, HAPPY EASTER - be safe, healthy
and happy.
dbenson -- {goodbye dbenson}
john-c. -- OCHITE
murf -- LOL
john-c. -- Bruce, thanks for hosting the chat today. Check your email from
me.
susannew -- Take care all!
bruce -- No problem. It was a good subject and I always enjoy the company
and mental stimulation (trying to type fast and spell at the same time).
murf -- Have a Happy Easter all
billeric -- Thanks Bruce. Sorry I missed most of a good chat.
johnm -- Hope everyone has a Happy Easter and really enjoy the meal that
you COOK for your family.
patrick -- Glad to see everyone's doing well and glad I made it today.
Happy Easter!
susannew -- {goodbye susannew}
john-c. -- See you all (hopefully) in New Orleans
patrick -- {goodbye patrick}
murf -- {goodbye murf}
john-c. -- {goodbye john-c.}
bruce -- Sometime I'll have to tell you about my diet that has helped me
lose 5 pounds. It is called the 'UcanKooK4URself" diet. It works.
bruce -- Take care and again, Happy Easter.
bruce -- {goodbye bruce}
johnm -- {goodbye johnm}



END CHAT