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Kennedy's Disease Chat Transcript 06-15-02

Topics: Prescriptions & Alternative Medicine

Host: Terry Waite

 

Chat Participants:

terryw 
bruce
mikeg 
wapita
rea
peter-s
johnm
billeric
daveg

terryw -- {welcome terryw}
rea -- {welcome rea}
bruce -- {welcome bruce}
peter-s -- {welcome peter-s}
johnm -- {welcome johnm}
billeric -- {welcome billeric}
daveg -- {welcome daveg}
wapita -- {welcome wapita}
terryw -- hello rea
rea -- good morning
rea -- I sent u an e-mail
terryw -- under what name?
rea -- Ruth
rea -- I feel like a kid in a candy store. this is all so new to me
terryw -- OK, Ruth, Welcome, More should join soon
bruce -- {welcome bruce}
bruce -- Goo Morning, World!
bruce -- That is GOOD Morning
rea -- hi bruce
bruce -- Hello, how are things going today?
terryw -- Hi Bruce
rea -- well, it is cold and damp here how about you
bruce -- Cool, damp - I guess the same. I am in the Philadelphia area.
Where are you located?
rea -- I am in NY
bruce -- I have family in the Phoenix and Tucson area. They say it is very
hot there. 110 - ouch!
rea -- not far from u Bruce
bruce -- I was watching the US Open - what a miserable way to play golf.
It weren't for the money, they probably wouldn't be playing this week.
terryw -- It's been hot here, I am filling in for Susanne who had to do
some work this morning preparing for a week out of town on business in
Chicago
terryw -- Ruth, how is your husband handling the KD diagnosis?
terryw -- Maybe he can join in on the chat someday if he feels like it.
rea -- terry
rea -- Tommy died
rea -- it is 8 months now
terryw -- Oh, I am sorry,
rea -- he was diagnosed when he was 40
rea -- he did prepare me and himself
rea -- but he stayed with me for 17 more years
terryw -- I am sorry Ruth. my wife has been communicating with you mostly
and I went back to find your e-mails and I misread it. I am truly sorry
rea -- that is OK terry
rea -- terry
rea -- Tommy took no medication
terryw -- TY Ruth
peter-s -- {welcome peter-s}
bruce -- Hello, Peter
peter-s -- Hi all this is my first time doing this so I hope it all goes
OK I'm from Tasmania Australia and its 12.24 am on Sunday
bruce -- Peter - don't you know it is time for bed down there?
peter-s -- way past my bed time. I guess you guys are all from USA
terryw -- hi Peter, glad you stayed up to join us
rea -- hi peter
peter-s -- looking forward to the discussion. How does it go And hi to
all! This is quite exciting!
terryw -- Yes Peter, We wanted to have another chat time for our friends
in your part of the world but we needed a volunteer to host the chat but
had no one come forward yet. HINT HINT
peter-s -- OK Ok I get the hint
terryw -- I take ULTRAM for Muscle pain I get
terryw -- Has anyone read about Green Tea?
peter-s -- Yes I have it often
terryw -- I just read a study on Green tea and the possibility of it
slowing muscle wasting
rea -- Tommy did not like tea. he was stubborn
rea -- lol
terryw -- It said that green tea has Antioxidant qualities that slows
deterioration
bruce -- Green Tea appears to be good for almost anything. I drink Bantcha
Twig Tea every day (it is the stems of the green tea - no caffeine).
terryw -- I have read that you have to drink 7 cups of green tea a day
peter-s -- I am taking barley green and Creatine Has anyone else tried that
bruce -- What is barley green? I haven't heard of that before.
terryw -- I am not sure bruce
peter-s -- barely green is cut barley grass that is dried and powdered. It
tastes and smells like grass
bruce -- LOL Peter - how do you get it down?
peter-s -- You hold your breath and gulp! it is supposed to activate your
system to enable it to receive the good stuff you are supposed to follow
up with
johnm -- I don't like to take anything that I have to hold my breath for.
peter-s -- Further information Its made in the US and the brand I use is
by AIM and it comes from Nampa id (where’s that)
bruce -- Peter, do you find these two items helpful? How long have you
been taking them?
rea -- am I the only female with all u good looking men
terryw -- LOL, Thank you Ruth
rea -- no
bruce -- Ruth, Well, I can't speak for Peter, but Terry is the only good
lucking guy that I know of on the chatroom.
peter-s -- I’m certainly not the hulking Aussie male. This thing has
certainly taken away any chance of that
rea -- have u all met in person
terryw -- Some have met Ruth. A whole bunch more of us are going to meet
this Oct at the Kennedy's Conference in Baltimore
johnm -- {welcome johnm}
bruce -- Hello, John. Welcome - We have a lovely group this morning.
terryw -- Hi John
peter-s -- Hi John
rea -- terry tell me the date for Oct please
terryw -- Ruth its Oct 13-15 on our site there is lost of info www.kennedysdisease.org
rea -- tks terry
terryw -- It would be good if you could come Ruth
rea -- I will do my best would like u all to know me and tommy
terryw -- Does anyone here get QUEST magazine from the MDA?
rea -- yes I do
terryw -- Quest Magazine did a major write up on Kennedy's disease this
last issue 4-5 pages
terryw -- the only thing that they forgot to mention in the article is us
as a support group for Kennedy’s disease.
terryw -- From the article in QUEST magazine it looks very promising for a
future cure or treatment for KD. At least that’s what the doctors are saying.
bruce -- Let's all pray the article is right. Our future generations depend on it.
terryw -- Yes
johnm -- Terry, it's just too bad that it probably won't come in time for most of us.
terryw -- This came from the doctors that will be at our conference in
Oct. We will learn more info from them there
johnm -- Hi all from rainy Florida this morning.
peter-s -- My treatment has changed my life around. I don’t know how or why
but my naturapath is working wonders on me
terryw -- what is Naturapath?
peter-s -- Sorry Terry, my bad spelling, you know someone who does
traditional medicine
terryw -- Peter, what kind of treatment is your Naturapath doing for you?
peter-s -- OK Its a number of things. First I have reflexology and cranial
sacral massage. I have a diet rich in Omega 3 fatts (fish and greens ) as
well as an antioxidant called microhyrdrin, barley green and Creatine
Omega 3 supplements, calcium magnesium tablets and LOTS of carrot and
celery juice. I see the lady once a week and went from being the ultimate
skeptic to a true believer
peter-s -- I’ve just looked at my typing My only excuse is that its late here
johnm -- Peter, don't worry about your typing and spelling. We all have the same problem.
rea -- can I ask u all something
bruce -- Please, Ruth
rea -- are u wives helping(if married) and any children(besides adoption)
peter-s -- My wife is my tower of strength
terryw -- I don’t understand the ? Ruth. Please clarify if possible
bruce -- Ruth, my wife is a saint. I don't know what I would do without
her. We have two children - one adopted.
rea -- u have a child normally
rea -- well terry
bruce -- In fact, I find it interesting that she would want to put up with
me as I go through all of this. It must be love!!!
terryw -- No Kids here
rea -- I brought Tommy home on a ventilator
rea -- I was his nurse
johnm -- My wife also really helps me. Sometimes she does things she
really doesn't need to.
terryw -- Susanne has not been on any kind of birth control for may years,
and still no kids
rea -- not care giver but nurse(nodegree)
rea -- we could not have kids
rea -- do to the disease
rea -- hate that word disease
rea -- I would rather use condition
peter-s -- yeah Ruth disease is like you can spread it like the flu or
something
billeric -- {welcome billeric}
terryw -- I have had fertility tests and they say I have quality but not
quantity but I guess that does not matter
terryw -- it only takes 1
rea -- terry it does not matter
rea -- so did Tommy
bruce -- Ruth, I lost my brother this winter (another KD'r). His wife and
children went through a lot for three months. I emphasize with you.
rea -- bruce I had Tommy home for 4 months
johnm -- Ruth, how old was Tommy and how long did he have KD?
rea -- John
rea -- Tommy was diagnosed when he was 40 and he died at age 57
rea -- 8 months ago
rea -- listen guys
rea -- I don't not what you all to be down
terryw -- Hi Bill
peter-s -- hi bill
rea -- no motility
terryw -- I am extremely careful not to be around sick people who have colds
rea -- STAY AWAY FROM PEOPLE WHO HAVE COLDS, THE FLU
rea -- if u guys get sick with colds or flu it lasts forever
terryw -- Yes Ruth, colds can be killers for KD individuals
billeric -- Sorry for the lateness folks, had trouble getting on
peter-s -- But once you are on you can talk to people who can share. This is great guys
bruce -- I don't take any medication or natural supplements. I tried some
for a time or two. I use Qigong and Yoga today as my way to cope and stay
healthy and happy. Whatever works....
peter-s -- You are right Bruce What works for me may not for other . I'm
no expert, just a guy whose been told he had KD
johnm -- I only use vitamins and one 300 MG neurontin per day.
billeric -- I use one multivitamin , 4 neurontin and 2 400 vit. E a day.
johnm -- I take 2000 IU vitamin E, 1000 vitamin C, Vitamin B1 complex,
Multivitamin, and 600 MG Caltrate +D
bruce -- I also take natural vitamins - E, B complex, C and a multi. I am
not certain they do anything - but it don't hurt.
johnm -- I guess I don't see much help from the things I take either,
terryw -- I have no problem with adoption, it would just have to be a
child that is 2-3 years old that can help care for themselves because I
feel I could not care for an infant myself while Susanne works
terryw -- I am so glad that we have a good turn out today for this chat.
It has been slow in here lately.
bruce -- I think the host brings out the best in people. You are a
natural draw, Terry.
peter-s -- Terry to replace Jay leno
terryw -- Thank you Bruce. Its all of you that keep me going
terryw -- without you all I would be down
peter-s -- I know how you feel terry. I had a session of dry drowning last
night and went to bed really depressed.
terryw -- I hate those Peter
peter-s -- Scared the life out of me and the family. The worst part was
that I was drinking a glass of red wine and it went all over the paper.
What a waste. Has anyone had any had any success with any treatment for that
billeric -- I have never experienced the dry drowning bit. Thank goodness.
bruce -- Peter, I am have been successful - it only happens to me rarely
these days. Mostly when I am not thinking about what I am doing. I do a
throat massage every morning and evening and that seems to help.
peter-s -- Thanks Bruce. What does that involve
rea -- u all can do this there seems to be some help for u all
daveg -- {welcome daveg}
peter-s -- hi daveg
terryw -- Hi Dave, You are new to the chat?
terryw -- Dave where are you from?
bruce -- Hello, Dave.
daveg -- Hi Terry have just registered and working out how to do this
terryw -- Dave have you Joined the KDA?
daveg -- Yes - I signed up a couple of months ago- my first time on the chat though
terryw -- Dave you from AUS?
peter-s -- daveg my first time too. chat virgins
daveg -- Yes to both of those Perth Western Australia -losing my chat
virginity is not too scary!
peter-s -- How long did it take for people to get their diagnosis I was
told it would take me three months
rea -- Tommy was diagnosed with ALS at first
rea -- then sma
terryw -- Peter once its sent to the labs here in the USA it takes about 10 days
rea -- finally we read about a blood test in the mda mag
johnm -- Ruth, I think all of us were diagnosed with ALS first.
rea -- so it did take some years
bruce -- I was one of the fortunate few that was correctly diagnosed. Of
course I was fortunate enough to have Fischbeck as my doctor.
rea -- I wrote to him years ago to ask for help
terryw -- rea, you get QUEST?
rea -- yes
rea -- still do
terryw -- It's a good magazine
rea -- yes it is now
peter-s -- Daveg Hi mate another aussie. I’m from Tasmania. Its time we
took these guys from the states on!
rea -- Bruce
rea -- bruce
peter-s -- Ruth Yes I was diagnosed with ALS or motor neuron disease
first. Boy was that an ordinary 6 weeks until the doctor said no that’s it was KD
terryw -- I helped self Diagnose myself
rea -- so did we
bruce -- Peter- "ordinary 6 weeks" - I can about imagine.
peter-s -- how much excise do people do
rea -- doctor told us not to
bruce -- Peter, I exercise two plus hours a day (morning and evening).
But, my exercise is Qigong - it doesn't cause any damage if performed
correctly. I also meditate for 30 minutes after each practice.
johnm -- I don't do much exercising at all. A few arm and leg exercises in
the morning is all.
bruce -- I used to do regular exercises (weights, squats, etc.), but they
did more harm than good.
rea -- don't over do it
peter-s -- Ruth you are right. luckily have my guardian angel (wife )nto
keep me in check. I feel so good now. gone from walking only 10 metres to
walking 4 km each night
terryw -- that’s great Peter, Wish I could
johnm -- Bruce, SQUATS???? I would never get up if I tried that.
peter-s -- squats would test me
rea -- no squats!!!!!!!!!!!
terryw -- I look like a infant when I get up off the floor. I am on al
fours and my but is in the air
rea -- just do some walking
bruce -- That was a few years ago, John. Today my only wish is to be able
to get up off the floor each day.
terryw -- Look just like a baby trying to get up and walk
rea -- lol
billeric -- No squats here either. Can't get up once I am over center.
rea -- there are now special chairs that help
peter-s -- ha ha I know what you mean. I left the gym as they had no
weights small enough and all the ladies used to wup me
bruce -- I have a technique now where I place a card-table chair next to
me and I go from the floor to the chair - then it is pretty easy to get up
from there.
johnm -- I don't even try to get up off the floor any more. The only time
I do is if I end up there by mistake, and then have to crawl to something
to get some help.
terryw -- Ha Ha, I could see myself at the gym. Some big muscular guy over
me with a bar with no weights, saying Push Push! I'll spot ya. LOL
daveg -- Bruce, do you think doing weights accelerated the deterioration?
Or would it have happened anyway?
rea -- yes that is what Tommy did
rea -- BILL
daveg -- I take a fold down fishing stool with me anywhere out of doors so
that if I sit on the ground I have got something to pull myself up with.
bruce -- I know I damaged my muscles. Of course, I always pushed a little
to hard and far. Denial - or something. That is when Qigong came to my rescue.
rea -- we were at the als clinic in NYC
terryw -- My doctors could not figure it out so I helped by trying to find info.
johnm -- I didn't go for the blood test until my cousin told me about KD.
terryw -- That’s one reason we formed the KDA
rea -- it was right there in the mag
rea -- we asked for the blood test
terryw -- To get the word out since there was very little info prior to the KDA web site
peter-s -- daveg do you have an email mine is This email address is being protected from spambots. You need JavaScript enabled to view it.
rea -- there was no info for us
terryw -- I think only myself and Patrick had sites talking about it
peter-s -- the KD page was so good. Terry, you were a godsend for us. we
left the specialist not knowing a thing about KD
terryw -- We are getting very close to doing a mass mailing of a KD
brochure to 9,000 Neurologist about KD
terryw -- Its a very nice brochure
terryw -- we have been working on it for a while. It's almost done
rea -- terry send me a brochure please
daveg -- Hi Peter - been watching Cricket and Rugby tonight to stay awake
-must be pretty late in Tas -
peter-s -- Terribly late daveg and cold as one thing. I've got a blanket
over my legs
rea -- Tommy has a first cousin in New Jersey that has it
rea -- u men are so lucky we had NOTHING
peter-s -- how slow/ fast have people decines been and has anyone improved
billeric -- My feet are my most concern now. Burn like the devil after a
little walking. Any ideas?
rea -- foot powder
terryw -- Bill, that’s the Lactic Acid burn from the feet muscles
peter-s -- billeric- come to tassie right now cold enough to fix that
problem. I used to get that now they just tingle
terryw -- over used
rea -- has nothing to do with KD from what I have learned
rea -- Tommy never had that problem
rea -- and he did a lot of walking
peter-s -- bruce, what Qigong and where could I find out about it
bruce -- For starters, try my web site: http://www.geocities.com/bgaughr/
It will get you started. There are some links to help find local teachers
in the world. Send me your email address and we can chat more about it.
This email address is being protected from spambots. You need JavaScript enabled to view it.
peter-s -- thanks bruce
peter-s -- you'll have to send me pictures
rea -- terry
rea -- really of use
rea -- over use
terryw -- I walk on my heels, I pound them so hard they hurt
terryw -- My balance is gone
rea -- feet and legs got tired, but never burning
terryw -- a wind can knock me off balance
peter-s -- Terry. I did that and walked on the outside of the soles of my
feet. like I was walking on hot coals
rea -- I know
terryw -- Bruce will be at the conference giving a session on it
rea -- just a small crack in the sidewalk
billeric -- I walk flat footed. Thought I may be using some different muscles.
johnm -- Terry, my balance is gone also. I have to have something to hang
onto whenever I walk.
bruce -- Heal pain is fun - you are right Terry. I am also concerned about
a good gust of wind in the winter time.
terryw -- I can put no load on the front of my feet. I will collapse
billeric -- Me too Terry
terryw -- I walk on my heels through the house. I sound like godzilla coming.
Boom Boom Boom
rea -- gentlemen
rea -- I am going to leave u all we have been there in everything u say
rea -- please if u need your wives to talk
rea -- e-mail me reaThis email address is being protected from spambots. You need JavaScript enabled to view it.
peter-s -- take care Ruth
rea -- or caregivers
terryw -- Thanks for coming Ruth
bruce -- Take care Ruth. Thanks for joining us today.
terryw -- Ruth we have special Caregivers and wives chats from time to time
rea -- thank u all really
rea -- please let me know I might be helpful
billeric -- By Ruth
terryw -- OK Ruth, thank you again
rea -- {goodbye rea}
peter-s -- does anyone swim
billeric -- During the winter Peter.
terryw -- I love to swim Peter but have not in quite a while
bruce -- Peter, I enjoyed swimming. It was just getting out of the water
(or ocean) afterwards that was my problem.
terryw -- Same here Bruce
peter-s -- I know what you mean. That was my first indication I has a
problem I went skin diving and the tanks and weights made it impossible
for me to get back up
billeric -- Sun City, AZ. pools are handicap designed. So are lots of the folks.
terryw -- Bruce, last time I tried that I tried to walk back out of the
waves and could not, they knocked me down and I laid there foundering in
the waves like a beached whale until someone helped me LOL.
peter-s -- good comment billeric. I manage a service for people with
disabilities. I didn’t think I'd possibly end up as a client!
johnm -- Sun City Center, FL pools are handicap designed also but I
haven't taken advantage of them like I probably should have.
daveg -- Peter I swim but we are fortunate to have a public pool which has
walk-in access through the kid's paddling pool. I can't manage swimming
pool steps anymore. Swimming in the ocean is just too scary these days,
getting in and out ...
peter-s -- I had the same experience terry. so much for the bronzed aussie
heroat one with the surf!!
billeric -- Agree peter.
terryw -- At least in California we have the baywatch crew to help me :)
terryw -- So now I fall more often at the beach if you know what I mean :)
peter-s -- Pammy and the guy who used to have a car that talked to him.
Scary Terry, stay out of the surf
johnm -- Terry, with my luck it would probably be one of the big burly GUYS!!!!
bruce -- Terry, you'll do anything for attention!
terryw -- LOL
terryw -- Bruce,, that’s just me.. you have to learn how to work this
disability to your advantage.
peter-s -- sympathy and pity that always gets the girls
terryw -- I always position myself in front of a lifeguard tower with a
cute girl lifeguard.
peter-s -- can I ask question again. Has anyone improved at any time
terryw -- Not Myself
johnm -- Peter, I haven't seen any improvement. My decline has been
gradual though.
billeric -- No improvement here.
bruce -- Peter, from my perspective, that is a difficult question. I am
better than I was five years ago in most areas. A few areas are worse. I
am better mentally and emotionally and in many cases physically. But, I
haven't reversed the process. I have learned to live with it and to use
muscles and train other muscles to help compensate.
wapita -- {welcome wapita}
terryw -- Hi wapita, Where are you from?
wapita -- {goodbye wapita}
peter-s -- how many people have family members who seem to have the condition
billeric -- None here peter
terryw -- I have 2 brothers that I think have it but have not been tested yet.
johnm -- I just talked to my brother and he has a feeling he has KD but
doesn't want to be tested. He is 51.
peter-s -- yeah john m my brother 42 is the same
bruce -- Well, guys, I have to sign off. We are going shopping. Thanks for
the entertaining and enlightening time. Hope to chat with you again soon.
bruce -- {goodbye bruce}
terryw -- Goodbye Bruce, Take care
billeric -- See ya Bruce.
peter-s -- talk soon bruce. I’ll email you
johnm -- {welcome johnm}
terryw -- John, You get booted out of chat?
johnm -- Terry, yes I did. No apparent reason.
peter-s -- do people have weakness in all of their bodies or only in
ce3rtain parts, say like legs
peter-s -- my word it must be late my spelling is so bad
terryw -- Peter my weakness is whole body
billeric -- Legs, shoulders, arms the most noticeable peter.
terryw -- I also have vocal weakness and lungs
peter-s -- mine is only in the lower part of my legs. it feels like the
muscles are always tight. its been suggested that I have hereditary spinal paraplegia
johnm -- Peter, only in legs, arms and hands.
peter-s -- that means I could be a fraud! I' may have to hand back in my membership
terryw -- Peter my symptoms stayed in my legs for 4 years before it
progressed up to the rest of the body
peter-s -- cool terry. Just as long as I can ride my bike for a few years
peter-s -- motor bike that is not pedal power
terryw -- Peter when you walk long distances or ride do your legs burn
afterwards, get real hot to touch?
johnm -- Peter, I liked the pedal power. I really miss being able to ride.
When I got here 10 years ago I was still riding and really got to check out the area.
peter-s -- no they used to feel really rubbery like I was drunk after the
change in diet and reflexology they got better They feel slightly crampy
in my calves after as long walk, say 5km +
billeric -- What basically did you cut out of your diet peter?
peter-s -- red meat coffee processed carbs like chips you know all the good things
terryw -- Peter do your legs still have reflexes at the knee?
peter-s -- yeah they still kick out when tapped but a little slower
johnm -- My knees have no reflex action at all.
terryw -- Most KD individuals lose Knee reflex action early on/
peter-s -- Oh I feel I should go and test them to make sure I'm not kidding myself
terryw -- within first few years
terryw -- Peter, were you going to e-mail a picture for your story
peter-s -- yea I will do that this week. have to go to the beautician.
work just got a digital camera so look out
terryw -- We have about 10 min left for the chat. It will auto cut off at that time.
johnm -- Terry, this one will be really hard to get in line. We have
really covered a lot of subjects. It may take a little longer to get it back to you.
terryw -- OK, No problem John. Thank you
peter-s -- tomorrow is going to be write off its 1.35 am I haven’t been up
this late since I was a teenager
terryw -- Peter I appreciate you staying up so late to join us
peter-s -- this is really great. I have a great support group but they
haven’t got this dammed thing. Its good to share
billeric -- Gotcha peter.
billeric -- We feel the same. Neat deal.
johnm -- Peter, glad we are all here to help in any way we can.
peter-s -- I reckon I have had the condition for 3 years. gradually getting weaker
terryw -- Yes Peter, we are here every other week in chat.
terryw -- You are always welcome, even if your diagnosis comes back as Non KD
peter-s -- I'll be here as long as its on a weekend and my hectic social
life dosnt interfere (LOL)
terryw -- {goodbye terryw}
terryw -- {welcome terryw}
billeric -- By Peter
terryw -- LOL Knocked myself out
peter-s -- see you soon terry I'm off too as its now late take care guys
johnm -- Looks like you had a little problem also, Terry.
terryw -- see ya later
terryw -- whos still here, its going to cut off in mins
peter-s -- I'm still here Oh there's the log out button
peter-s -- {goodbye peter-s}
johnm -- I am.
billeric -- I am still here
daveg -- I'll say bye and thanks for the chat
terryw -- I am going to go also,, Bye all
billeric -- Thanks terry
johnm -- Good Bye all. Talk to you next time.
terryw -- {goodbye terryw}
johnm -- {goodbye johnm}
daveg -- {goodbye daveg}
billeric -- {goodbye billeric}




End Chat