Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript 03-22-2003

Topic:  Open Forum/General Discussion

Host: John-C


Chat Participants:



butch -- Good morning
butch -- I guess everyone is watching TV about the war in Iraq. The
Marines have landed. Please say a prayer for thoes men and women who gave
their lives to provide freedom to others.
billeric -- {welcome billeric}
billeric -- A good sunny morning to you guys from Phoenix
johnm -- {welcome johnm}
butch -- Good morning Bill. It is about 54 degrees and sunny in Penna.
Most of the snow has melted. Hooray!!
butch -- Hi Johnm. What is it like in warm and sunny Florida.
johnm -- We had quite a bit of rain yesterday but today it will get into
the 80s again. Weather has been really nice.
billeric -- I have a messsage for you guys: Use your cane. I didn't
yesterday and stumpled and fell braking my ankle. I have a temporary cast
and will get the regular one tomorrow. It's a wake up call for me. You
need a cane to break those stumples.
butch -- Bill--I hope the break is not too severe. Any break under our
condition is serious. Soooo, when taking a walk anywhere, tke your cane.
johnm -- Bill, I give that one a big 10-4. I'm either on my scooter,
walking behind my wheelchair, or riding in my wheelchair. It isn't very
pleasant to be confined to a wheelchair for three months.
billeric -- Your right Butch. I still have a tendancy to not use the cane
enuf. As you know they are a nuisance---but a real necessity.
murf -- Its the cane or the chair for me. I can't stand without one
johnm -- I find myself locking my knees when I walk to the back of the van
to get my scooter out.
billeric -- I think we all have a couple things in common--poor balance,
poor reflexes and weak legs. Spells disaster if we don't use some
supportive device.
john-c. -- My cane, archaic as it still is, is part of every move I make.
johnm -- A cane isn't really enough for me anymore. I need the scooter or
murf -- Johnm - I do as well and have to support myself with the van.
johni -- Me too!
john-c. -- Don't you need it for balance when you are up, Johnm?
johni -- I used to walk with a cane, now I just use it to prod the wife!!
billeric -- I guess I am somewhat lucky. A cane is enuf(or should be) to
keep me balanced. Now I need to use it 100 per cent of the time.
johnm -- I use the chair or van or any close wall to help me with my balance.
butch -- Johnc You are ALWAYS CONFUSING. We only need one good joke from
you today.
murf -- {welcome murf}
murf -- good morning all
butch -- Hi Murf. Congrats on becoming our latest board member. Thanks for volunteering.
murf -- Thanks butch, God hates a coward
john-c. -- {welcome john-c.}
butch -- I've been looking at some of the great pictures of the
convention. Alot of the pictures of "the couples" are really great. It is
nice to put the face with the names.
murf -- Morning John
john-c. -- Good AM from (almost no snow) MD.
murf -- What will you do now?
johni -- {welcome johni}
butch -- I think Patrick is supposed to be our moderator. I'll bet he is
spearheading the war effort. Old army men never die.
johni -- Hi from a beautiful spring day in England
johnm -- Looks like we got three johns on board this morning.
john-c. -- I'll have to change my chat name before the next one to avoid
butch -- Hi Johnc and Johni. Hope you guys are having a good day.
john-c. -- This is NOT an advertisement or self-effacing, but I have a
radical new cane design that I filed for a Patent on 3/13/03. Now all I
need is some $$$$ to put it into production.
butch -- Johnc Glad to hear that the "cane" is that close. Good Luck.
john-c. -- You're right Butch. LOL
butch -- Don't know how much the winter months affect you guys, but I know
that not walking because of the snow, really makes the legs weak.
murf -- How do we strengthen our legs?
john-c. -- Stomach somehow got larger this winter. I've been on a diet for
the last week that came from Bill Cecere in NJ, called Sacred Heart Diet.
johnm -- John-c, enjoyed your email about the weather you have been
having. Was going to reply but just haven't gotten A ROUND TUIT yet.
john-c. -- I'm with you Johnm. Never enough time here.I'm still working
60+ hrs/week and putting 40 K miles/yr on the car.
john-c. -- I figured the best way to walk better was to lose a few lbs.
butch -- Murf--Don't know about stregnthing but just maintaining what we have.
billeric -- I'm not sure we can strenghtern the. Just try to hold what we
have by being active. Has anybody used a treadmill on a regular basis?
murf -- I hear you!
johni -- I use a machine called a @Thera@ it is a passive exercise cycle,
that rotates my legs. It is supposed to be good exercise.
johnm -- OK john-c, I'll Bite. Just what is the Sacred Heart Diet.
john-c. -- Mary typed it up just like Bill sent it: it's Email-able if you
want a copy. Supposed to be able to drop 10 lbs +/week. So far it's been 5
days & I'm down 5.
john-c. -- From Sacred Heart Hospital to help overweight heart patients
lose lbs fast B4 surgery.
murf -- John-c I would like a copy of your diet. sounds better than Dr. Atkins
john-c. -- I have new Email address.... send me a request & I'll email
back a copy of the diet. It's really not too hard to stay on (for the 1st 5 days).
john-c. -- This email address is being protected from spambots. You need JavaScript enabled to view it.
johnm -- John-c, I wouldn't mind a copy of that diet myself. Email is
This email address is being protected from spambots. You need JavaScript enabled to view it.
billeric -- Johnc. I would like a copy This email address is being protected from spambots. You need JavaScript enabled to view it.
john-c. -- Johnm & Murf: copies are in your Email "in" boxes.
butch -- The best diet going is MODERATION and JUST SAY NO.
john-c. -- Butch: you have the 100% right attitude but I have 1% willpower.
murf -- Thanks John
johnm -- John-c, that sure didn't take long. I sent you my request and
when I sent it I got your email back already. Thanks.
johni -- Me too please John-c. My e.mail address is:
This email address is being protected from spambots. You need JavaScript enabled to view it.
john-c. -- All requests honored ....No guarantees, but something is working.
john-c. -- You're welcome John. Hope it works for us both.
butch -- Bill--Yes about the treadmill. I just go for short walks on the
tread a couple times a day. Seems to help.
murf -- A treadmill would be funny hear, it would throw me like a bull.
johnm -- I'm afraid that I don't do enough exercising. I guess I just use
the excuse that if you exercise, you tire your muscles and they just never
recover all the way to where they were before the workout.
john-c. -- Last time I was on the treadmill, I was like a piece of PEZ
coming out of the dispenser.
butch -- I hope you know that a treadmill can go as slow as you can walk
comfortably. Don't try to build but just maintain muscle.
murf -- I'll be going fishing after this chat. That will be my exersise
for the week.
billeric -- Your right Butch-but oh I'm so weak!
bsofree -- {welcome bsofree}
bsofree -- Sorry folks, again, last one in first one out.
butch -- Last year one of the KD'ers was on a snake venom regimen. Does
anyone know just how that experiment went?
johnm -- I seem to remember that regimen also but haven't heard any more about it.
murf -- Shr was out of Germany, wasn't she?
butch -- The snake venom person was Jean Lavalle from Belgium--would like
some results from this experiment.
murf -- Missing keys on the keyboard is becoming common practice for me.
johni -- I am having a lot of trouble now with holding my head up,
particularly when I am on the computer. I have a neck brace to wear when I
need. Anyone else have this problem?
billeric -- I haven't had that problem-so far johni
johnm -- johni, I don't have any problem with my neck and I am on the
computer a LOT. In fact the only real problem I have is the weak muscles.
john-c. -- Johni; That must be tough. No problem here with my head, only
other parts.
murf -- I'm not wearing a neck brace but often hold my head in my hands,
sometime out of frustration.
johni -- I relate to that murf. It has been a growing problem for some time.
butch -- I usually don have much of a problem of holding my head up. Most
of my problems are "getting my foot out of my mouth".
john-c. -- Same here, Butch. Lucky so far -- only broke one tooth.
bsofree -- My fingers get tired typing. Often, I have to resort to one
finger typing.
johni -- Thats the only way for me all of the time bsofree!!
john-c. -- Paul: mine too.....both of them!
murf -- My fingers ofter cramp when I type lots.
johnm -- I still do OK with my typing. I have to watch the keyboard from
time to time but the fingers still work pretty good.
bsofree -- murf..actually, my fingers are usually stiff when I start
typing, then more often than not, they loosen up and I am okay. I spend a
lot of time on the key boards.
butch -- Isn't it amazing that we type with no mistakes, but when they
print it out on the chat how misspelled words are in out text. LOL
john-c. -- That's the problem here also, Butch. Mine are typped
purfecttkly too. It's the #%^&U*( computer's fault.
johnm -- john-c, I don't think the spell checker would work too good when
you type like that.
john-c. -- Spel Checkkker??
john-c. -- Have to leave in a few min. today....Family conf call about
next yr trip to Ireland. Any connections Johni?
johni -- No. But I have ancestors from Ireland, who were the ones that
passed Kennedys on to me!!!
bsofree -- John-c have a good week, enjoy your conference call.
murf -- Johni - Are they connected to the KDA?
johni -- No, I am the only one, as far as I know.
john-c. -- Johni -- I'll rough them up for you when I see them.
johni -- I appreciate that john-c, I will be with you in spirit when you do.
murf -- Some one last week wanted a copy of IBM Via Voice but they didn't
e-mail me. I have it here ready to go if I know where to send it, It's free.
butch -- Has anyone heard from Terry and Susanne in the last couple of
days? I also wonder what happened to Patrick. Also John c--I'll be your
straight man anytime.
john-c. -- Heard from Terry yesterday & from Patrick last week.
johnm -- I have heard from Terry. I think he went in for his hernia operation.
john-c. -- I'm outta here. Talk to you all in a few weeks. Don't forget to
smile and pray for the world.
johni -- Will do john-c.
butch -- Solong John--Stay safe.
murf -- Bye John-c, Take care!
bsofree -- bye John C.
john-c. -- {goodbye john-c.}
billeric -- By johnc
bsofree -- Now, we are left with two John(s), a murf and a bsofree. Oh, I
forgot butch and billeric.
murf -- Sound like a heck of a bunch
butch -- Bsofree--How is the Freedom scooter doing?
bsofree -- Butch, all going very well. We are negotiating with the mass
merchant and hopefully soon, they will be in Costco, K-Mart and others.
johnm -- They are really making some small scooters lately. I don't think
they would work for me as I couldn't get out of the seat. As it is I use
my Up-Lift Seat Assist in all my chairs.
murf -- I need a lighter chair for the house. To many damaged walls
johnm -- murf, I have a few damaged walls also.
bsofree -- Yes, the up lift seat is the way to go for many people. Our
small transportable scooter is more a life style thing and I find out I
need my better half to get my little 42 lbs scooter out of the car anyway.
So, it is no problem for her to help me up by pulling up by my belt?
murf -- We'll keep some one in business
bsofree -- Actually, a light scooter also is very nimble. I could
literally turn around inside an elevator, if the other people will get out
of my way?
johnm -- I have to work at it a little to get my Pride Sundancer turned
around in tight areas.
billeric -- I am going to scoot folks. Don't forget--use that cane.
billeric -- {goodbye billeric}
butch -- Good luck Bill--Hope you heal quickly.
butch -- Murf--What type of fishing do you do? On a lake, river, gulf,
ocean? What types of fish do you catch. For sport or for food?
murf -- I'm going to Lake LBJ North of Austin for Bass and crapy. I throw
most back keep one for dinner.
butch -- Sounds like a great day. Of course a bad day of fishing is better
than most good days of some other sport,
murf -- I have a large boat in Canada I don't use anymore that I used for
salmon fishing years ago. Biggest one was 45 lbs.
bsofree -- I took my daughter to a trout pond, the type you pay for what
you hook. I had to get her out of there when she got 3 one pounders in
less than 5 minutes.
murf -- Daughters and granddaughters are supposed to out fish us
johni -- Gotta go now. bye all and take care.
johni -- {goodbye johni}
butch -- I have a small boat for fishing. The only problem is getting out
of the boat. You know--fall in but crawl out.
butch -- Good bye Johni--Sewe you next chat. Stay healthy.
johnm -- Fishing would be out of the question for me, even if I wanted to.
murf -- That's what worries me and why I've not seen my boat in 7 years.
bsofree -- Johnm, actually Pride made couple of Lite weight scooter as
well. I believe the model is Sonic. Have to go drive my daughter to her
Chinese School. For those who wonder, her Chinese school is one of the
many in Southern California. Her school holds classes for more than 1,000
students every Saturday during school year. Bye.....
butch -- See--Not sewe. don't know where that came from. I know I spelled
it correctly.
murf -- Johnm - You can still fish off a warf or dock couldn't you?
johnm -- Have to get going myself. Bye All.
johnm -- {goodbye johnm}
murf -- Bye Johnm
murf -- Was it somthing I said??
murf -- Well I guess I'll go pack my gear. Bye all
murf -- {goodbye murf}
butch -- Good bye to all--stay happy and healthy. Say a prayer for our
troops in iraq.
butch -- {goodbye butch}
butch -- {goodbye butch}