Kennedy's Disease Association

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Kennedy's Disease Chat Transcript  02-07-2004

Topic:  Open Forum

Host: None Available

 

Chat Participants:

terryw
billeric
butch
michigander
duane
pa-paul
johnm
don48312
chuck
jkerley



BEGIN CHAT


michigander -- oops, for a minute I thought maybe I was suppose to enter
the chatroom from the KDA website...good morning butch
butch -- Good morning michigander. What is your first name. I am Ron from
PA.
michigander -- I am Eric from Salt Lake City at the moment.
butch -- Looks like we are the first two on line. I'm sure we will be
joined by some others very soon. How is your weather? Eric--I'm sure the
weather in Salt Lake Cith is better than in Michigan.
michigander -- Weather here is very similar to Michigan, we still have
snow and had the coldest January in history, hardly ever got above
freezing, but in NY State where I went to H.S. I hear it was even colder
pa-paul -- {welcome pa-paul}
butch -- Hi Paul. How are you?
pa-paul -- hangin in there
pa-paul -- how about yourself
michigander -- Paul, what does the pa in pa paul stand for?
pa-paul -- pennsylvania
pa-paul -- pennsylvania
butch -- Penna. weather has been brutal. Especially for us with KD. Cold
is noooo Good.
pa-paul -- yes yes
butch -- Doing great except for this dang cold and snow.
michigander -- The cold may have been a contributing factor to falling at
work, although standing for an hour was the main factor...resulted in 8
stiches above the eye
pa-paul -- I too can relate to the falling
butch -- One thing for sure--falling gets us a little closer to the earth
and keeps us looking up. LOL
jkerley -- I find that I must think about walking or I will stumble.
pa-paul -- Hello Jkerley, after i started carring a cane I almost never
stumble any more but leave that cane and look out
michigander -- A hard lesson I've found out is that if you fall at work
workmans comp is not going to want to cover the injury
jkerley -- I use a cane. I have a walker for later. I have seen what is
dowm the road as by brother al had KD
pa-paul -- my wife and I are beginning to think about going a little
further south not florida but somewhere down near there
butch -- Eric, How long have you been dealing with KD?
michigander -- I developed the KD symptoms back in about 1992...so a
little more than ten years
jkerley -- {welcome jkerley}
pa-paul -- do you mind me asking how old you are? I to began about 1992
and am 58
michigander -- Paul, I'm 57, are we all about the same age, and have most
only had the symptoms for a little over a decade?
johnm -- I guess I'm the oldest this morning at 68. KD since about 1989.
butch -- Johnm--You are the youngest 68 I know of.
billeric -- not true johnm, I am 69. I have had symptoms for at least 25
years.
johnm -- I did notice weakness quite a while before that, looking back. I
didn't know KD until I got to Florida in 92.
jkerley -- Johnm I wish that was true. I'm 71 and KD has been in our
family for 30 years
johnm -- Bill, I think my symptoms were with me for at least that long.
jkerley -- I did not notices weekness until I left Florida
johnm -- My Mother's Sister's son told me about the test. I had ALS until
then.
butch -- Being misdiagnosed is the worse thing that can happen. And then
being told that you only have an incurable disease is GOOD NEWS. KD is
alot better than Lou Goehrig disease.
billeric -- your sure right about that butch.
duane -- Thanks to researchers that developed the DNA test for KD.
michigander -- I was happy to be originally misdiagnosed with FSH as not
one in Portland, Oregon had KD and the FSH/limb-girdle group had very
similar problems
chuck -- When told by a local Dr., he broke the news as "I have good news
and bad news" etc. Good news, not ALS and then he went on.
billeric -- I had real weakness starting about in '87. Of course at that
time it was automatically ALS. About 5 yrs. later I was diagnosed as KD.
duane -- That's what my doctor told me. I said that's WONDERFUL! He
replied well it's not great.
duane -- My symptoms became a problem about 4 years ago. I now use a cane
too. Just to steady my balance.
chuck -- Gee, if there is an age prize, I will admit I am 76. Butch
Charlie is doing just great after the surgery.
johnm -- I don't even bother with a cane any more. I just use my scooter
and stay close to something I can hang on to.
duane -- Well, I guess I take the prize as the "baby" of the group. I'm 42
michigander -- I go without a cane except through the snow, but use a
powerchair for distance
butch -- Welcome jkerley. Where are you from?
jkerley -- Greensbore and Highlands NC
billeric -- {welcome billeric}
pa-paul -- Has anyone tried an enzyme called Q10 ??
michigander -- PAUL, NOT ME, BUT HAVE YOU?
pa-paul -- Not yet am trying to find a trusted place to buy My doc
suggested it
jkerley -- no on the billeric
butch -- i didn't want to use a cane but, it is alot better than falling.
A cane doesn't help you to walk, but it helps to keep you from falling.
Paul what is Q10?
pa-paul -- butch it is an enzyme my doc recomende and the web info clains
it help everything
butch -- Q10!!! Is it for pain, muscle cramps or just what does it do for
you.
pa-paul -- Butch its for helping cells regenerate and supposed to be good
for heart disease
chuck -- {welcome chuck}
duane -- {welcome duane}
billeric -- A good warm Phoenix morning to all
butch -- Hi Anna Lea and Chuck. Glad to see you go that computer fixed.Hi
Lori and Duane.
johnm -- {welcome johnm}
butch -- Hi Bill.
butch -- Welcome Johnm.
billeric -- mornin' butch
pa-paul -- who is host today??
duane -- morning all. Lori says hello
michigander -- pa-paul, you as the first one to ask must me host???
butch -- I think Terry is host for today. We'll just keep going till he
arrives. Today's chat is for general discussion.
butch -- Anna Lea--How is Charles doing? Hope he is well.
duane -- Well, I have a power chair. Still waiting to get power lift for
vehicle and ramps for house.
pa-paul -- duane Do you have any balpark idea of cost of lift?
duane -- I've been to website for ramps and lifts...ball park is $700. Not
installed but shipped to your home.
pa-paul -- thanks
johnm -- Duane, they have some really neat power lifts for vans now. I
like the one that has a platform to drive on to and then comes up and
rolls into the van. The the power rear hatch and we've got it made.
duane -- I know. They also have one (that I want) for Jeep Grand Cherokee.
Swings out and lifts chair. Fully balanced. Can place in rear storage area
of Jeep.
johnm -- My mobility store is working on a power chair for me to use in
the house when I can't walk any more.
butch -- Anna Lea--What was the surgery and was everything successful?
chuck -- Butch, I sent you an e-mail yesterday. He went in for a hernia
operation.
guenter -- {welcome guenter}
guenter -- {goodbye guenter}
billeric -- guenter didn't stay long!
butch -- Hi guenter. Welcome. Where are you from and do you have Kennedy's
disease? I guess he just stopped in to say hello.
jkerley -- I put a lift in the trailer hitch. It was easy to install but
takes a long time to open the door and remove my cart. I would not
recommend this type. I wish I had got one that fit on the inside of the
van.
johnm -- Kerley, I don't like the fact that they are OUTSIDE. You then
have to make sure they are covered when it rains.
jkerley -- Johnm only the lift is outside. It has a waterproof motor but
the electric control must be keep dry. I covered mine with a baggie and a
bungy cord.
duane -- Texas has a state agency that will assist with funding for lifts
and ramps. Just takes 4 - 5 months for approval and work to begin. Go
figure
butch -- That is one of the many things that is great about this chat. If
something works, we share the good news. If we try something that doesn't
work, it keeps the rest of us from making the same mistake. GREAT!!!
pa-paul -- Duane Check with Jeep to see if they offer and cash assist for
cost of lift or installation
duane -- Thanks pa-paul . Good idea.
johnm -- When I got my Toyota Sienna they paid the entive amount to get it
transfered from my previous van.
johnm -- I have a Bruno now. It works out real well as I can still walk
enough to get from the back to the driver's door.
michigander -- I've gotten around el cheapo for the last few years with a
canopy topper on my pick-up until it was rear-ended and totalled by a
construction truck...temped to go the same route again but designing and
having canopy built takes months...another option a high miles Van in the
$15000 range...not easy to find?
duane -- I wouldn't want an "outside carrier" for p-chair. Especially on
cold or rainy days.
don48312 -- {welcome don48312}
billeric -- what's cold and rainy, duane?
duane -- billeric - cold and rainy in North Texas. DFW area. We don't get
much snow, but the wind will creat a chill 10 degrees lower.
butch -- Hey Don. Did you sleep in this morning?
duane -- I don't have much use for a chair in my home. Very small house.
Only when I get out and begin walking on the un-even surfaces.
pa-paul -- Eric I found a web site for used disabled equiped vans It at
www.disableddealer.com
michigander -- Pa-paul, thanks for the info
billeric -- duane, I am not fond of those winds.
duane -- johnm - I wonder if they would outfit a new vehicle for p-chair.
What was your cost to fit your vehicle?
johnm -- Duane, They would pay up to $1000 for the lift and installation.
michigander -- I have a dumb question, what's a p-chair??
duane -- power chair. I just got lazy with typing. Definitely not a potty
chair :)
duane -- balleric- I don't do cold. My symptoms get worse.
jkerley -- {welcome jkerley}
billeric -- Has anyone tried those up-lifts? I priced one this week. About
350 dollars. Worth it?
johnm -- Bill, I have three Up-Lifts and wouldn't be without them. Check
wowthishelps.com. They have the under 300 lb for $100.
billeric -- thanks johnn, I will give it a try.
michigander -- I'm getting dumb and dumber,,, what a up-lift??
pa-paul -- i was abouit to ask same
billeric -- michagander-it's a device thats portable that fits on a chair
to give you a boost in getting up. I have a real problem with this at
restaurants etc.
michigander -- What's the uplifts source of power...???
billeric -- michagander. from what I saw its a cylinder like a small
hydraulic cylinder that folds into the seat.
butch -- I wish there was a way to set up a fund for anyone with Kennedy's
who needed equipment could borrow from the fund, at a low interest rate,
which payments back to the fund would keep the fund solvent. Any ideas?
don48312 -- what is topic of chat 2day????
butch -- General discussion Don.
don48312 -- hi all. just got back from a Caribbean cruise
butch -- Thanks for inviting us Don. How much did you make at the gaming
tables?
don48312 -- i do not gamble at casinos on cruise.
duane -- Don - Did you bring souveniers for everyone?
don48312 -- tu butch
don48312 -- won a $1,500 diamond bracelet, but wife took it from me
butch -- No one gambles on a cruise ship. It is a sure thing--You are
gonna lose.
duane -- probably looks better on her :)
don48312 -- everything looks better on her
butch -- Good one Duane. LOL
duane -- I've thought about getting a small S-10 or Toyata pickup just to
haul pchair
michigander -- Duane, the Toyota PU route worked for me once...maybe I'll
try it again...one problem was that the bruno lift and 300 pound Jazzy
eventually pulled up part of the truck bed but maybe they make them
stonger these days
duane -- Wow. Flimsy metal bed?
don48312 -- i bought a Chrysler minivasn and they paid $1,000 for a new
lift for scooter
duane -- What was your out of pocket expense to complete the lift install
on new vehicle?
don48312 -- cost for lift instaslled was $1,600, less the $1,000 from
Chrysler lef5t $600 for me to pay. MDA might pay some of the cost.
duane -- don - thanks for the info.
pa-paul -- Thanks Don I too have been toying with Idea but was afraid cost
might be too high
don48312 -- if ya look around, ya can get used lifts (nearly new) cheap
butch -- Host for todays chat is TO BE DETERMINED. Which one of you guys
is that?
duane -- we thought it was you butch
duane -- I've found some offers for used lifts in my local Thrify Nickel.
duane -- s/b Thrifty Nickel
michigander -- Lifts nearly new...cheap! Has anyone found a Van nearly new
or runnable cheap??
duane -- nope not vans. let me know if you find one
don48312 -- in FL, lots of used nearly new vans as elderly handicapped
pass away more frequently here
duane -- sounds like a good deal. if they are highway worthy. Back to DFW.
pa-paul -- that web site I mentioned has quite a few and some are cheep ie
4500 for 1989 dodge xcaravan already with lift
chuck -- Don't want to change subject but is there anyone here today that
participated in a study/protocol during the mid "90's" on "testosterone"
at either Ohio State Univ. or Univ. of Pittsburgh???? If not on here today
and you should know of someone, please have them e-mail me at
This email address is being protected from spambots. You need JavaScript enabled to view it.. Thanks!!
don48312 -- chuck, i was part of the ohio state study
butch -- Wejust chat and share info. Anna Lea--Testosterone is said to
excellerate KD. Dr Fischbeck doesn't recommend it.
michigander -- Any doctor's rulings on Viagra??
chuck -- Don, please get in touch with me. Butch, we understand that but
this is just an informational question...
johnm -- I haven't been involved with any tests. My neurologist just has
us on neurontin. I haven't noticed any big improvements though.
terryw -- {welcome terryw}
terryw -- hello
pa-paul -- duane What is DFW?
duane -- pa-paul - DFW (Dallas, Fort Worth area)
terryw -- I am traveling and just got on mt brother in laws PC
butch -- Hi Terry--Did we wake you?
terryw -- I am in So. California picking up the KDA Finished questionaire
data
billeric -- I am on neurontin too john. I can't say I have noticed any
changes.(except downward).
butch -- Naproxen worked ALOT better than neurontin for me.
pa-paul -- ok thanks
terryw -- NOTE: Next chat look for big changes. We now have our own KDA
chat room. I will be sending out an e-mail this week with details
terryw -- We will no longer be on the MDA site for chat
terryw -- You will have to register with the KDA chat utility to use it
but I will be sending everyone those instructions via e-mail
duane -- exciting news. will we be limited to a time frame for chat?
terryw -- Next time you go to the KDA chat page it will look totally
different.
terryw -- We will still have our set time for the scheduled chat but we
will only svae the transcript for the alloted time. People can continue to
chat after the time but it will not be recorded in the transcript.
terryw -- the chat room will be a 24hr open operation
terryw -- so you can e-mail anyone and say meet me in chat at ? and then
chat with them.
terryw -- people can set up mini-chats among themselves
duane -- that's really cool. looking forward to the "New Chat"
terryw -- yes We hae ben testingit and its ready to roll
billeric -- Terry, will we still have the bi-weekly chats?
terryw -- fingers are cold. LOL
terryw -- yes bill
terryw -- same schedule, different location. The KDA site is where it
willbe held
don48312 -- sounds great Terry
duane -- what is neruontin ?
pa-paul -- Duane the Nurontin is for pain mostly but it also has side
effect of helping depression
johnm -- Bill, I only take one 30 MG capsule per day.
billeric -- how many Naproxens do you take a day butch?
billeric -- I take 4 john.
don48312 -- i have been taking Neurontin for a few years per MDA doc. it
was to keep fluids out of throat. Neurontin helps me sleep also.
johnm -- Bill, thatg should have been 300 MG.
butch -- My naproxen is a 500 mg tablet. To be taken as needed. I usually
take 2 naproxen a day
don48312 -- what does Naproxen do?
butch -- Naproxen is used to reduce pain and swelling. Also an
anti-inflamitary drug.
don48312 -- butch, pain and swelling where???
butch -- Bill--Mine is usually back pain because of weakened muscles.
don48312 -- where swelling butch?
don48312 -- i have problems with feet swelling
billeric -- You and me too Don.
don48312 -- and wife says i have a swelled head, lol
butch -- Sometimes swelling in throat. Makes it hard to pronounce words.
michigander -- Swelling feet here too...as well as tight calves
billeric -- don, Is this a common problem. I have swollen feet after
walking some distance.
butch -- Swalling is also a problem sometimes. Certain foods are worse
than others.
johnm -- I don't walk enough to have a problem with swelling feet.
michigander -- So naproxen seems to speed up reducing the swelling in the
feet and throat??
butch -- Works for me.
duane -- Update on my work situation. My department director said to
continue working from home until my next review (Aug 2004)
terryw -- cool duane
terryw -- I have to go just wanted to drop in to let you all know about
the upcoming chat change.
terryw -- talk with you all later.
don48312 -- Terry & Susanne have brought us a long way from no info
anywhere. i appreciate their efforts
billeric -- Thanks Terry.
duane -- Tell Susanne "hey" from all of us.
butch -- Don--sorry, thought bill asked about naproxen.
terryw -- {goodbye terryw}
johnm -- Terry, have a good trip and drive careful.
pa-paul -- how much more time left??
pa-paul -- how much more time left??
duane -- does anyone have problems with eating and stomach? I feel
miserable after a meal. Finish a sandwich and gotta put on my sweat pants
to be comfortable.
michigander -- Happy trails to all and see you on the new website
butch -- Eric--I didn't have much success with neurontin that is why i was
given naproxen.
pa-paul -- bye also to all
pa-paul -- {goodbye pa-paul}
jkerley -- Thanks for the chat bye Joe
chuck -- {goodbye chuck}
jkerley -- {goodbye jkerley}
butch -- So long Eric and Paul. Stay healthy.
johnm -- No problem with eating or any kind of pain, swelling, or
swallowing.
don48312 -- bye all
butch -- Jkerley and Chuck. Till next chat.
duane -- must be me. g-bye all. Chat at new site soon!
billeric -- See you guys on the new chat. Stay upright! Bill
michigander -- I think alot of us a trouble with swallowing...and I have a
problem with weight gain in the waist and tight pants not being good
billeric -- {goodbye billeric}
butch -- So long to all. Stay healthy and happy till next we chat.
johnm -- Looks like we're all bailing.
duane -- {goodbye duane}
butch -- {goodbye butch}



END CHAT