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Kennedy's Disease Chat Transcript 08-24-02

Topics: Overdoing it, How not to

Host: Patrick Griffin


Chat Participants:



bsofree -- Good morning...
patrick -- {welcome patrick}
patrick -- Hello, my name is Patrick Griffin. You can call me Patrick or
Pat, whichever you prefer. I'll be the moderator today. Today's chat is
about OVERDOING IT: HOW NOT TO. Now I know I'm not supposed to end a
sentence with a preposition. There, I did it again. I guess I can't stop
myself. :-) Who has overdoing experiences or suggestions they want to make?
patrick -- Hi bsofree, what shall I call you?
bsofree -- Hi Patrick. My name is Paul Liu. I also live in L.A.
patrick -- Hi Paul. I remember you, I just didn't recognize your sign-in name.
patrick -- How is everything going for you?
bsofree -- I use this sign in name and actually it is also my toll free
number, which is 866-Bsofree for the electric mobility unit I am quite
involved now.
patrick -- Does Bsofree have a special meaning?
bsofree -- Good question. With the electric scooter, I am able to go the
distance, so to speak.
bsofree -- So, I am free to do more?
butch -- {welcome butch}
patrick -- I just got it! Be SO Free equals Mobility! I guess I'm a few
neurons short this AM.
patrick -- Hi Butch. Welcome!
bsofree -- No, you are okay. What have you been up to, after your advance
butch -- Patrick--Thanks for the welcome and thanks for hosting today's show.
bruce -- {welcome bruce}
patrick -- Paul, let me know if you need a test driver. There's a new race
complex near Kansas City (about three hours away). Maybe I could be the
pace car, er, chair.
patrick -- Howdy, Bruce.
bruce -- Good morning, World!
bsofree -- albeit, at a snail pace? The unit is designed to give us
mobility with safety in mind.
patrick -- Paul, most of my life, I've been anything BUT safe. Now, with
KD, I find that I must be more cautious.
patrick -- Bruce, did you ever do any programming? That sounds like a C++
course I took once.
bruce -- Only played with it and was never any good at it....
bsofree -- Pat, what is the weather like in Kansas city? I am traveling to
St Louis tomorrow for 2 days?
patrick -- The Wx here has been changing and spotty. We've had near 100
degrees, followed by a front which gives us thundershowers and temps in
the 60s.
patrick -- That's been a repeating pattern for the past couple of weeks.
bsofree -- Thanks Patrick. Just no rain please. Electric anything and
water, they don't mix well.
butch -- I just finished a small job of rescreening a screen door. I know
this used to be a couple of hours task. Of course now it takes alot
longer. I forgot tools and had to make extra trips to the basement. Each
step led to another job such as painting etc. At least I got it done.
butch -- It is amazing how much abuse our knees take when doing such a
little task as I did. My legs were sore for days.
bsofree -- Hi Butch, amazing that you could do what you are doing. I have
a very difficult time, just taking care of my 2 dogs?
patrick -- Butch, I know that feeling. I fixed a sink faucet, and went
through the same thing.
daveg -- {welcome daveg}
bruce -- We finally have got some rain (two days in a row - a miracle).
Life is good once again.
butch -- HI Bruce--Thanks for sending some of the rain to Lancaster. We
are having a nice soaking rain.
patrick -- Rain has been like that old joke about ice. You know "Everyone
gets about the same amount of ice. It's just that the poor folks get it in
winter and the rich folks get it in summer!
patrick -- Hi Dave. Welcome!
daveg -- Hello everyone good to catch up with you all
butch -- Today's topic--over doing it. How do we get some of the things
done with out paying the price for the next couple of days?
bruce -- Rule #!: Listen to the body instead of the ego.
bruce -- Rule #2: Know you limitations
bsofree -- Over doing it, I have been pushing myself, just a little over
the edge. Thinking, this will make me excel, at least do the max with
myself. But, the muscle thing is quite a different story?
patrick -- Bruce, you hit the nail on the head.
bruce -- I hit the nail on the head - If I would only listen to myself -
walk the talk...
patrick -- I keep two bird feeders in my front yard trees. It used to take
me all of five minutes to fill them. That has become an hour job now.
bruce -- Patrick, but think of the wonderful time you have outdoors with nature....
patrick -- That hour is if I carry a folding chair with me and take
several trips with the seed, etc. If I try to do it in one trip, on my
feet, I end up falling and crawling. Then it takes me more than an hour,
and raises my blood pressure to boot.
patrick -- Yeah, Bruce. Nature is beautiful, especially close up. Like
when I'm lying face down in it! :-)
bruce -- Patrick, but grass does taste pretty good - as long as the dog
hasn't visited the area right before you.
bruce -- I think I am better today than a few years ago. My ego use to get
in the way and I would push myself harder in an attempt that to prove I
could still do something.
patrick -- Same with me, Bruce. I used to be bullet-proof when I was
younger, or thought I was. Now I'm just a target. :-)
bsofree -- But Bruce, except anything to due with muscle strength, do you
think you are not as good now as before?
bruce -- Actually, I believe I am better in most ways - smarter. The ego
was just interfering with my ability to see the light.
patrick -- Paul, I think you're right. I still have my meager intellect
and my world class sense of humor. It's just my physical self that has diminished.
bsofree -- Bruce, touche. I think in many ways, I am better now than
before, except mobility.
patrick -- Bruce is right. I have to think harder to figure out how to
overcome my challenges with gravity and distance.
bsofree -- So, could I be bold to suggest, we could still push ourselves
mentally, but just be careful when it comes to thing physical?
bruce -- Once you get beyond the notion that people look at you as a
cripple/handicapped, and once they realize that this doesn't mean that you
still can't do other things even better, it all starts to work out.
daveg -- Well said Bruce - I think we're much wiser because of KD - but
often not wise enough to realize that we're over doing it and will pay the
price the next day
bruce -- Paul, right on! The other thing is to decide that you don't have
to prove anything to yourself or to anyone else.
bsofree -- Bruce, the proving part "mentally" is entirely self serving. At
least for myself, I don't have that much I have to prove to others. I just
think it is important that I keep "active", at least mentally.
bruce -- On the other hand, the only way I know whether I am physically
limited is to try it. I just have to not let my ego get in the way of
common sense.
daveg -- Pushing yourself mentally is probably a good thing Paul - as long
as it doesn't lead to stress as stress is just as destructive as any
physical over-activity
bsofree -- Daveg...In Montreal where I spent most of my adult life, U of
Montreal had a prof who wrote stress without distress. Meaning, we have to
reach the stress level, but not be distress?
patrick -- There are two kinds of stress: eustress (the good kind, like
making a touchdown) and distress (the bad kind, like being frustrated).
The body needs stress to survive. It's our minds that turn eustress into
distress. And we can control our minds.
bruce -- Butch, did you say you were retiring?
butch -- Bruce--Yes. I retired the 5th of July. So far it has been just
great. I am trying to do some of the small jobs I couldn't do while working.
bruce -- Butch, fantastic. We still need to get together sometime (the
four of us).
This email address is being protected from spambots. You need JavaScript enabled to view it.
bsofree -- So folks, just left to close the window. It is cold this
morning in Sunny S. California.
don48312 -- {welcome don48312}
patrick -- Good morning, Don!
don48312 -- hi all. boy, I hate this chat site. all caught up now
butch -- Patrick--How are the reservations for the conference coming along?
patrick -- Butch, we have over one hundred people coming- KDers,
researchers, and grad students!
don48312 -- pat, how many patients, excluding caregivers?????
patrick -- Don, I don't have that number. I talked to Terry yesterday, and
he just gave me some totals. When we send out the transcript, I'll have
the editor add in the current figures.
don48312 -- not important pat, just curious
butch -- Great!!! Patrick, You and Terry and Susanne have been doing such
a great job. THANKS!!
patrick -- You're welcome. We do this to help others. It's a labor that we
shoulder since we can't work. The ones I really respect are the family
members and other caregivers, like Susanne and Annette (among many
others), who work, help us live, and help the KDA.
bsofree -- Credit to where credit is due...Terry, Susanne, Pat and others
have really done a great job. Just look at what we are doing now. It
wouldn't have been possible without them. A big thank you to all of you.

johnm -- {welcome johnm}
john-c. -- {welcome john-c.}
patrick -- Hello, John!
don48312 -- morning John M
terryw -- {welcome terryw}
terryw -- Hello
bruce -- Good morning, Terry
john-c. -- Good morning, Men. I'll catch up & join in a minute.
don48312 -- I am going to the Buccaneers football game 2night, and will
definitely get stressed!!
bruce -- Don, the Bucs looked good in the one pre-season game I saw, can
they put it together this year?
daveg -- Even good stress like a football game can be exhausting Don!Which
wasn't the case before KD
don48312 -- we'll see Bruce. next week should tell more
bruce -- So, how do we know when we are pushing ourselves too hard?
patrick -- Hi Terry. How many KDers are coming to the conference, not
counting carriers, caregivers, etc.?
don48312 -- lol, copycat
terryw -- Don the total is 57, about 35 are KD individuals or carriers
terryw -- TY Bsofree
don48312 -- wow, big % of KD population, I'd say!
terryw -- Yes
john-c. -- That's great with so many: it will be good to put faces with
don48312 -- I very much enjoyed the conferences Judy and I attended in the past
bsofree -- Terry, this is absolutely incredible, getting over 35 KDs
together, under one roof. Just to think, about 3 years ago, my brother & I
thought we were the only 2 KDs in the world.
terryw -- does anyone still do any bowling?
terryw -- I am goona try next week
bruce -- Well, it depends what you consider bowling. My head has knocked
down a few things recently.
terryw -- Last time I could not even throw the ball, I would lose my
balance. This week I am going to try bowling with an arm brace cane to
hold me steady
don48312 -- <---- no bowling, golfing or hockey
john-c. -- Isn't golf a sport with handicapped built in? Or is that just
limited to Golf and Horseracing?
john-c. -- @#$^$%$%^ Isn't bowling...... LOL at me.
terryw -- LOL Bruce on the bowling
butch -- John C.--Just completed a small task and couldn't help but laugh
at myself by comparing my task to the funny story you printed for all
KDers to read.
john-c. -- Butch..there's a lot more to come. I sent Terry another one
terryw -- Paul, are you going to attend the conference. We have not go
your registration if so?
bsofree -- Terry, I am still trying to resolve a conflict. I have another
commitment around the same date, which might mean my criss crossing the
country at least 2 times the same month.
terryw -- OK Paul
bsofree -- Patrick, have you read the book "Stress without Distress"> I
don't even remember the name of the French Canadian author, but basically
that's what he said, except he said it earlier and in a book. LOL.
terryw -- Now I have to start figuring out what to do I guess with all my
sports equip. I keep holding onto it as hope.
terryw -- Bowling ablls, Tennis Rackets, Skis
terryw -- bowling balls
john-c. -- Even my bowling balls have atrophied.......
don48312 -- i still havew 1 golf club up in the attic, hoping!
terryw -- Oh Yeah, I have those to
bruce -- Yes, Terry, a couple of years ago I retired my tennis racquet, my
raquetball equipment, my basketball, my... I think you get the point. It
was tough on me.
patrick -- I used to bowl when much younger. First game, not so good.
Drink a beer, feel better. Second game, bowl better. Drink two beers to
celebrate. Third game, terrible. Drink three beers to console myself...
terryw -- I can still swin a club somewhat but I damage myself for 3 days after
terryw -- swing
terryw -- that is true patrick on bowling how the games get better as you go on.
butch -- I hope they have a boys club in your area so that maybe you could
donate the equipment you can't use to someone who can't afford them for
patrick -- Butch, good point. As I was getting weaker, before I was
diagnosed I thougt I was just getting old and lazy. To get stronger, I'd
buy a new piece of equipment to work out on (no health clubs where I
live). Now I have a garage full of lightly-used workout gear to donate.
terryw -- LOL John-c on the balls
terryw -- Good one
bruce -- My golf clubs are going to Goodwill this year.
john-c. -- Bruce: from what I hear you are in really good shape. I'm
looking forward to meeting you and listening/watching yopur talk at the conf.
john-c. -- (your)
bruce -- John, what is "in good shape"? I get by. But, I do enjoy my
exercise routine every day. I look forward to meeting everyone at the
bsofree -- Bruce, what is your exercise routine, may I ask?
bruce -- Paul, I practice "motion Qigong" for an hour every morning and
evening and "still qigong" (meditation) for an hour each day. I really
love it and the energy it gives me.
terryw -- The conference will be a great place to show this exercise bruce.
bsofree -- Bruce, actually Qigong has several version that includes
physical movement. I practice the one, naming after the "Big Bird", not
trying to be disrespectful, but I don't know the name of the bird in
English. It is the same form practiced by the same gent that invented
acupuntual (excuse the spelling) many moons ago.
terryw -- Bruce is going to do a strongman exhibit with us, He's rented a
U-haul trailer and hes going to put all attendees in it and pull us around town
terryw -- LOL, Kidding
bruce -- Yes, Terry, with my scooter....
johnm -- {goodbye johnm}
bsofree -- On the physical part, getting physical is THE challenge for us?
Except for the hard impact sports, anyone try the soft impact stuff like
john-c. -- Tried checkers.
bruce -- Pual, I practiced Tai Chi for several years before I switched to
Qigong. My balance became an issue. I still practice some forms of TC
without the foot/knee movement.
melski -- {welcome melski}
terryw -- Hello Melski
patrick -- Good Morning, Don.
butch -- Todays topic--I still can't say I can't when trying to complete a
task. We are limited to what we can do but not limited to not trying.
john-c. -- I'd like to try a rowing machine.
don48312 -- i think a rowing maching is great, but i cant get up from 1
when i am finished. they are 2 low
bruce -- Again, I will go back to what I said earlier. You will be okay if
you know your limits and listen to your body.
john-c. -- That's the same here, Don. There's a rowboat down back in the
pond, but I can't get out of it.
johnm -- {welcome johnm}
terryw -- Hello Johnm
bruce -- Terry, I hope everyone will participate in the practice so they
get a feel for it.
patrick -- It's an ego thing for me. I recently forced myself to start
using my wheelchair more. I'd go somewhere with just my walking stick, get
halfway to where I was going, even though I knew I was tired, and then
fall. It took a face down into the concrete (split eyebrow and lip, bloody
nose) and a tongue-lashing from friends, family, and doctors to get me to
use my chair.
john-c. -- Bruce, you're right. Trouble is ( with me) that this 60 yr old
body has a brain that thinks there's 4-15 yr olds or 3-20 yr olds attached.
bsofree -- Being quite sportive myself, in my better days, I found Qigong
(with the physical movements) to be most suitable for myself. Actually,
most community centers offer Tai-chi and I am certain the master will tone
down the movement to have the "it" tailored to us?
don48312 -- ditto john-c
john-c. -- Some ofthem are still in puberity, some in real form, but the
60 yr old always wins out.
patrick -- John, I think all guys are like that. We KDers are just more
susceptible to backlash.
butch -- I still find it difficult to get from the floor to a standing
position. I wish there was something light weight that could help with
this task.
johnm -- Butch, AMEN to that. I fell in a parking lot behind my van and
had one HELL of a time getting up. When I did my legs were still too weak
to support me.
john-c. -- Johnm....I couldn't get up the last time. Sat there and read a
newspaper I had. 10 min later was barely able to, but made it.
bruce -- John, there still is those young-uns attached. We all reconnect
with them occasionally, and it is a wonderful feeling - like feeling
physically normal for a moment.
terryw -- I will participate bruce, I also hope most will. Susanne is even
going to do it.
john-c. -- Bruce.I'll show you my idea when you get here. It works and
is/will be easy. Very lightweight.
bruce -- I look forward to it. Thanks
john-c. -- Butch..that was also meant for you when you're here on the 14th.
don48312 -- how's weather over in KP John?
johnm -- KP is really a very enjoyable HOT, Don.
terryw -- KP ?
don48312 -- Kings Pointe, here in Sun City Center, fl, where 3 KD'ers live
johnm -- Terry, KP is Kings Point in Sun City Center, Florida.
don48312 -- lets do lunch soon, John M
melski -- Good morning. I am a first timer to your live chat. Greetings
from the valley of the Sun--Phoenix
don48312 -- hi mel
john-c. -- Hi Mel
bruce -- Is it 110 OR 111 today in Phoenix?
bsofree -- Is someone going to introduce Melski?
terryw -- Melski, is this Larry from pheonix?
melski -- Terry: yes it is!!!Hows are you and Susanne?
terryw -- We are fine Melski, how have you been?
terryw -- Very busy with the conference.
butch -- Melski--Your first time in this chat. I know you are welcome and
will find more about KD and its problems than you ever thought possible.
These are a great bunch of guys and they will help whenever possible.
melski -- Doing fine. I saw Patrick was hosting so I just had to make it
live today. How are you Patrick?
patrick -- Butch, Paul, does anyone make a miniature remote controlled
dirigible with a 250 pound lift capacity?
bruce -- Patrick, it is called an anchor.
bsofree -- Patrick, try my Freedom 1. It weights only 43 lbs complete.
Check out the web site. Then, you don't have to take the anchor joke.
john-c. -- Hey guys; for what it's worth NIH TOLD me to use a cane 100% of
time. That was a year ago, awkward to get used to/dropped it lots/ but I
hace decreased my falling to about 1x/month now instead of 1-2x/week.
That's worth the trouble of using it.
johnm -- John-c, cane worked fine for awhile but now it is no longer
enough to keep me on my feet and off my back.
bsofree -- john-c, you are lucky. A cane has been so much a part of me, it
is like my eye glasses....can't see without one, can move around without
the other.
terryw -- for any new attendees to the chat the KDA web site is
bruce -- Getting back to the subject, how do we ensure we do not over-do?
and, if we still do over extend ourself, what is the best way to recover?
patrick -- Back to the subject of the chat. It seems to me that we have to
balance our ego thing (of I can still do anything) with the reality (of
our physical capacity), yet still not dampen our desire to maximize our lives.
patrick -- John, I'm doing pretty good today.
melski -- Butch: you may want to talk to Terry and Susanne about your last
patrick -- John, I meant Larry.
terryw -- what do you mean larry?
bruce -- Right Patrick, everything in moderation these days....
bsofree -- Patrick, well said and again let me be bold and add, our muscle
could atrophy, but a lot of our egos are still quite inflated and that we
have to tone down...for my own good anyway.
johnm -- I guess I have pretty much resigned myself to the fact that there
are just some things I can't do any more and just have to live with that fact.
butch -- melski--Are you referring to me saying guys like I excluded the
ladies? I know without our significant others we couldn't make it as easy
as we do.
don48312 -- i'd be lost without Judy's help!!!
johnm -- Butch, Your right about our significant others being a great help
to us, as I think Patrick can attest to.
patrick -- Butch, good point. I'm unmarried, so I don't have the
experience of some of you guys. When do you "do it yourself" and when do
you ask your spouse for help?
don48312 -- Judy lets me do things myself, but senses when i need an assist.
john-c. -- Mary is the best. She steps right in: seldom do I have to ask her.
bsofree -- Actually, speading for myself and being thankful to my better
half, there are also many others that have help me personally. For me, it
has been great and I am grateful.
patrick -- Paul, my sister and her family visits me (they live about an
hour away) and helps out with lawn mowing, etc. I really appreciate that.
johnm -- Patrick, my spouse seems to know when I need help, even though
sometimes she jumps in when I want to do it myself.
terryw -- Susanne tries to leave me on my own to do things as much as
possible, but will be there if I need help. I just have to learn to ask
and not over do it.
bsofree -- Let me add an example, about 5-6 years ago, I feel
uncomfortable to be seen with a cane. Stupid me.
john-c. -- The impact of maintaining what we can do with what we think we
can do stil is a problem for me. I still work a long week, but finally
hired someone to help me. Starts this Mionday. I hope I don't lose
patience with her like I do with myself.
bruce -- Definitely stress plays a part in muscle awareness. If I fall,
the stress weakens me. If I think through a movement and allow the muscles
to receive the signals and don't push too hard or fast, the muscles seem
to respond better and I am stronger.
john-c. -- Bruce..that's worth a lot. Thanks. Mind over matter so to speak.
bruce -- John, right on. If I take the time to climb the stairs slowly and
not become distressed with the lack of strength, I am stronger and the
stairs are easier to climb.
bruce -- Being thankful for the life and health we have is important.
Being thankful for all the others (friends, neighbors, family and
strangers) is also important. i hear it from all of you every couple of weeks.
john-c. -- I have an office in the basement & have resisted Mary's idea of
moving it upstairs. I think if I give in on that, I'll lose the ability to
do stairs faster. But, it's a bugger carrying (lifting from stair 1 to 3,
3-5, 5-7 etc with almost any weight) anything heavier than a rool of paper towels..
patrick -- I've grad-ul-ly gone from telling strangers who want to help me
when I fall, etc. "Leave me be, I'll do it myself" to "Thank you very
much. I appreciate your help"
bruce -- Right on, Patrick. I do the same thing. It has helped....
bsofree -- Patrick, you are so right again and for me, it is definitely
the ego thing.
patrick -- I've realized that they get warm feelings from helping someone
out. Good feelings both ways.
john-c. -- It seems that I overdo it almost every day. I still can't get
that right. MAry started compensating yrs ago. She knows 10 min of "my
time" is really an hour in real time.
patrick -- The hard part is smiling. My smile muscles are about as weak as
my legs.

john-c. -- keep the smile in your voice, Patrick: IT WORKS JUST AS WELL.
terryw -- Johnc: You just have too much to do. I understand overdoing it -
especially out in the yard. I want to trim the bushes and do the yard
work, and I get out there and don't stop until its too late... I pay for
it the next day.
johnm -- Terry, we moved into a condo where ALL of the outside work is
taken care of. That works really great for us.
terryw -- We moved from a condo to here. Susanne is an avid gardener and
we love to sit in the backyard. Although, when we were in the condo, we
did have a lot more freedom to get out on weekends!
patrick -- I've gotten really religious about my lawn. If God wants it to
grow, He makes it rain. If He wants it short, He doesn't.
johnm -- I love the way you put it Patrick.
daveg -- Does anyone go to a physiotherapist? I have been to two but
neither have been able to guide me through an excercise routine to make
the most of what I have still got but without overdoing it.
bsofree -- Daveg and others, please go to your community center and check
out Tai-chi. Again, I don't mean to be disrespectful, Taichi is not just
for the weak and the old. And, the master could very well be round eyes
like yourself. Do it in conjunction with physical therapy, if you want.
terryw -- I went to a physical therapist for a couple times - pool
therapy. Mostly stretching exercises. I do stretching on my own now.
bsofree -- Terry, we should get my sister in law to dig out the article my
brother's physical therapist, wrote about KD?
terryw -- Yes Paul. We'd like to have that.
terryw -- {welcome terryw}
terryw -- Hmmm, got kicked out!
patrick -- It is already 10:30 CST. We have 15 minutes left of our
allotted time.
butch -- {welcome butch}
daveg -- Got to go now, goodnight everybody, thanks for the chat.
terryw -- goodnight daveg
don48312 -- tc dave
patrick -- Bye Dave
daveg -- {goodbye daveg}
bruce -- Well, I need to sign off. Thanks, Patrick, for hosting this chat.
I always enjoy the time we have together sharing our adventures in life.
Be safe and healthy everyone.
terryw -- Bye Bruce.
bruce -- {goodbye bruce}
john-c. -- Bye Bruce. Send me some rain.
bsofree -- I have to sign off as well. See you all in couple of weeks and
have a Bsofree day.
terryw -- Bye Paul.
patrick -- Adios Paul
butch -- Bruce I'll e-mail you about our meet. Have a great week.
don48312 -- cya in 2 weeks, tc all, bye
don48312 -- {goodbye don48312}
terryw -- bye Don
patrick -- Bye Don
john-c. -- Have a good two weeks, men. Talk to you all then.
patrick -- We got about another 5 minutes.
terryw -- We just about have the KDA brochure ready to go to press. We
will post it to the Web site when its complete for anyone to copy and give
to their doctors, other KD'rs, etc...
terryw -- We will bring them to the Conference in October also.
terryw -- THe design work and printing is all being donated 100% free.
patrick -- Tchuss John
butch -- I guess it is about sign off time. Hope you all stay healthy
until our next chat.So-long for now.
johnm -- Bye All.
terryw -- Enjoy the rest of your weekend.
john-c. -- If anyone is coming early or staying over late and wants some
"local" info, drop me a line.
patrick -- Ciao John
john-c. -- {goodbye john-c.}
johnm -- {goodbye johnm}
patrick -- John, I'll do that. I'm staying a week, and want to go to some museums.
patrick -- Two minute warning.
terryw -- {welcome terryw}
terryw -- Came back in just in time to say bye... got kicked out again.
patrick -- Great chat, everyone! Hope to "see" you all in two weeks.

End Chat