Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript 02-08-2003

Topic:  General Discussion/Open Forum

Host: Patrick Griffin


Chat Participants:



patrick -- Hello, my name is Patrick Griffin. You can call me Patrick or
Pat, whichever you prefer. I'll be the moderator today.
patrick -- {welcome patrick}
patrick -- Today's chat is about general topics, whatever we wish to
patrick -- Today's chat is about general topics, whatever we wish to
butch -- {welcome butch}
patrick -- Good morning!
patrick -- Looks like we're the first to log on.
butch -- Good morning Patrick. Did you finally get your new apple up and
patrick -- Not yet. Apple dropped its prices by $500 for that model, and
I'm negotiating for a refund based upon price-matching from my vendor.
murf -- {welcome murf}
chuck -- {welcome chuck}
murf -- Good morning
patrick -- Good morning Murph and Chuck.
patrick -- Guys, I have been bitten hard by some 'flu' bug. I'm not
feeling very well this morning, and I'd like to ask for a volunteer to
moderate this chat. All that is necessary is to help keep the language
clean and non-commercial.
murf -- good to see you back Patrick
butch -- I knew you had to be negotiating for a better price. Why don't
you throw in the car?
butch -- Patrick--we will help with the moderating all we can.
patrick -- Thanks Butch. I appreciate it.
chuck -- So sorry you are under the weather Patrick. Perhaps everyone
could pitch in to help you.
patrick -- Well I'm not totally back. I have an appointment Tuesday with a
neurosurgeon to see if they want to cut me up. Seems I have damage in my
cervical spine area.
butch -- Good morning Murf and Anna Lea.
johnm -- {welcome johnm}
patrick -- I'd like everyone to consider helping Terry and Susanne Waite
and others to keep the KDA continue to meet our needs. I know they can use
some volunteers to help out on the Board of Directors and on committees.
The amount of time you spend in this voluntary effort will be up to you,
and will be greatly appreciated by all of us in the KDA.
patrick -- There's no need to make a fast decision, but thnik about it and
contact Susanne or Terry.
murf -- John C and I are checking out hotels for the New Orleans
butch -- It is still bitter cold here in Pa. About 19 degrees. Can't wait
till spring. We had about 5 inches of snow yesterday.
patrick -- We've had a string of zero degree wakeups here in Kansas. Add
the wind and it's been really chilly. Ditto on hurry up, Spring!
murf -- It's 38 in Houston but feels like much colder. I think I'll stay
inside this weekend.
butch -- Hey John M--Tell us how bad the weather is in Sun City. Probably
in the low 70's.
patrick -- We've been spared most of the snow, although we really need the
johnm -- Florida has been exceptionally cold also. Only 58 here right now
at 10:30.
patrick -- That mean OJ will be getting expensive?
johnm -- I don't think it has hurt the OJ business too much.
johni -- {welcome johni}
butch -- I've been checking on scooters. The Golden GC-321 looks like a
good value. Do any of you have any suggestions?
johnm -- I've been pleased with my Pride Sundancer. There have been a few
problems but none of the serious.
patrick -- Butch, how do you evaluate a scooter? Are there any guides on
what to look for? How do you weight initial cost and capability versus
long term maintenance, batteries, etc?
chuck -- Charlie bought a Pacesaver Plus 3 used 3 years ago.He has gotten
very good service. Only replaced batteries once.
johnm -- I took in a while back because it was slowing up for no reason.
He checked it and said that the front to back cable was bad and he had to
order one. I left and it hasn't burped once since he looked at it. The
cable is in but I haven't had it installed yet. MDA pays for any repairs.
butch -- One thing I liked about the Golden products is that they have a
three year guarantee versus a one year with most others. i am only asking
opinions to get the best product for the money.
johnm -- I have heard good reports on the Golden scooters.
johnm -- I have also been told that if you have to replace a battery it
better to replace them both at the same time.
johni -- Butch, I have a Booster Town and Country, which has three wheels.
I can only use it in warm weather cos my hands seize up. Its O K though,
gets me around.
butch -- I don't know how many of you have a scooter or chair but I heard
that MDA will help with the cost and give so much for maintaining them. Is
this true?
patrick -- Is scooter battery technology keeping pace with small battery
tech? Do they have memory problems? Are the chargers automatic?
johni -- I bought mine, myself many years ago. I'm not sure if MDA would
pay for one.
butch -- The scooter or chair batteries are a jel battery and do not have
a memory problem.
patrick -- I've heard MDA will help. Another source for assistance is your
local ALS chapter.
johnm -- I know MDA will pay a certain amount per year for maintenance and
also help with the purchase. Get registered.
murf -- No battery memory problems with my Invacare Xterra GT
johnm -- Murf, that name sure makes it sound lake the Cadillac of
murf -- It's a off road chair. Allows me to take off down trails in the
woods or go fishing near river banks.
patrick -- Murf, I'll have to look that one up. I live in the country, and
that sounds like it would work for me.
murf -- Patrick - you'll see it in New Orleans but I'll contact you
johni -- Hi from dull but dry England! How are you all.
murf -- johni - is it cold where you are?
johni -- Yes, but not as cold as it has been or will be!
butch -- Doing great Johni--Have you heard any new reports of research in
johni -- No, nothing doing as far as we know.
chuck -- Butch, have you heard anything from NIH lately??
patrick -- That stem cell experiment in Australia was exciting. Then all
the journals started criticzing the methods, questioning results, etc. No
suggestions of positive ideas, just criticism.
johnm -- Are any of you too MACHO to use any aids that help us live better
johni -- Johnm I'm just grateful for anything that will help. I have just
been given an electric bed! I'm still getting used to it, but it already
is helping me a lot.
johni -- I got the electric bed through Health Service funding, via our
District Nursing Service.
butch -- johnm--I am not macho but I hate to give in to the inevitable.
I'm sure you all know what I mean.
patrick -- John, I think it took me a few twisted ankles, busted up knees,
and bloody face, and I lost all semblance of macho-ness. Now, I use any
help I can. And if it's icy or I'm really tired, I don't even go to the
road to get my mail.
johnm -- Patrick, I think that is the case with most of us. After we hurt
ourselves a few time we say it's not worth it not to use these helps.
johnm -- I've got my scooter, Up-Lift Seat Assists, toilet riser, Van to
carry my scooter, and Power Recliner for relaxing.
johni -- Ditto except for the toilet riser.
butch -- johni-If any of you need any hospital equipment, check with you
local lions club. Also many of the service related clubs have them also.
johnm -- I can't even get up from a handicap toilet any more.
johni -- Me neither Johnm
murf -- johnm - as with me, I'm in the oil business and used to work on
the rigs but now only in the office. It was a hard transition
patrick -- I can still get up from a toilet if it has bars, but sitting
down usually results in a solid (and sometimes painful) one-point landing.
johni -- Patrick I relate to that landing!!!
johnm -- Patrick, I guess you better make sure that the seat is DOWN.
murf -- It's all about a controlled fall isn't it?
butch -- Finding a bathroom without handicap facilities cab be a real
challenge. Several times I almost had to camp out ons the comode because
of nothing to assist me to stand up.
patrick -- I hate to even think about the time I slipped in a public
toilet, and crawled around on the floor, trying to figure out how to get
back up. No fun.
johni -- When I fall I have this great product which helps me. It is about
half inch thick and about 2 foot square. Janet rolls me onto it and it
inflates to chair height.
chuck -- Johni-Have never heard of the device you are speaking of. Could
you tell us more??I have a real problem trying to get Charlie up
johni -- Its made by a firm called MANGAR. They make loads of disabled
products. This one is called the Elk. Its like four cushions stuck
together when its inflated. It really is great. Has a power pack and is
very portable. I'm sure Mangar will advertise on the Web because they are
called Mangar International.
johni -- Mangar e.Mail address is:This email address is being protected from spambots. You need JavaScript enabled to view it.
patrick -- Sound great. I'm thinking about starting an independent Web
site to publicize assistive products. We can't do that on the KDA site
because of our non-profit status. If I do this, I'll ask for your comments
so we can separate the wheat from the chaff.
butch -- Some of the suggestions I'm hearing here today would make a great
program at the next conference. Many of us have created things to help in
a bad situation.
murf -- I'm all for that Patrick
johnm -- I think falling is about the greatest fear that I have. I have to
crawl to some place where I can kinda roll myself up to a sitting position
and then I may not even be able to get on my feet by myself.
murf -- johnm - Me too. I try to get to a knelling position then I'm
usually ok
butch -- Anna Lea--I've seen you getting Charlie up from a chair and
Charlie not you have a real problem. His voice rises two octives. LOL.
patrick -- Speaking of helpers, has anyone any experience with assistive
dogs? I know they have dogs trained to get things for you and even help
you back to your feet.
johni -- I've got two dogs, definitely NOT assistive. They just about know
not to get in the way.
butch -- I've heard ofseeing eye and hearing dogs but don't know much
about any other aid dogs.
john-c. -- {welcome john-c.}
johnm -- I haven't heard of assistive dogs for anyone with problems such
as ours.
patrick -- Near where I live is Kansas Specialty Dog Company. It's often
featured in the local papers. They train young dogs, and then have regular
classes for disabled people to teach them how to use the dogs.
johnm -- Patrick, we have the same thing close to us here in Sun City
chuck -- Charlie's hands will not allow him to type. Does anyone know or
has had experience with voice transmission?
murf -- morning john-c
john-c. -- Hi all> Problems getting on this AM. Hope all of you are well.
john-c. -- Chuck: I have I.B.M. Via Voice, which I got after talking with
john-c. -- Works reasonably well.....I have not given it the time &
attention needed for it to "learn" my voice 100%.
chuck -- John C. where did you purchase & how about cost?
john-c. -- About $ it at Staples. There are other brands
johnm -- We had a presentation here for our 2000 member computer club on
speaking software and he sure made it look easy to use. I don't know of
anyone who is using it right now.
patrick -- I'm feeling a bit queasy, and think I'll sign off for now.
Since I'm the moderator, can Butch or Murph take over for me?
murf -- Patrick - take care of yourself
butch -- You did really good this morning Patrick. Go relax and get well.
We'll handle the show.
john-c. -- Patrick: Hope you're OK. I'll check in with you later.
john-c. -- This is NOT a sales pitch. The item does NOT exist, yet.
....... I spent last Tuesday at the Patent Office in DC and met with an
examiner. Reviewed my application for a new cane that has assistive
capabilities for rising after a fall. ..........Details at 11:00.
chuck -- You know Pete & I are still using the belt lift from the chair
but I cannot manage him from the floor. Anxious to hear of your cane John.
butch -- John C--So glad to hear that your idea is being finalized and can
be patented. This is the type of device that can be used by anyone with
john-c. -- 10-4 Butch.
john-c. -- Falling: I always think about what else I can do while I'm down
patrick -- {goodbye patrick}
our type of problem. Not necessarily muscular dystrophy related.
kunchlady -- {welcome kunchlady}
kunchlady -- {goodbye kunchlady}
kunchlady -- {welcome kunchlady}
johnm -- Kunchlady, You'll have to explain that login name. It must have a
good meaning.
john-c. -- Kunchlady: Do you have a KD association?
murf -- Kunchlady - are you there???
john-c. -- This week was SNOW angel week. We had 8" here and more coming
chuck -- We had 5 in WV and also more for Monday.
murf -- If I ever made a snow angel I would freeze in place
johni -- We were lucky, nearly everywhere else got snow, we just missed
it. We are near the coast and have the Pennines the other side of us. We
get protection from the worst of the weather
butch -- John C--If you fall in the snow and need to do something while
you are there, you are no angel but you could make a definite pattern in
the snow. LOL
johnm -- After I fell and broke my foot in three places and had to spend
three months in a wheelchair, I am a lot more careful. When I'm not
wearing my AFOs I'm using a wheelchair to get around the house and with
them on I use the wheelchair to give me a little more stability.
johni -- What are AFO's
johnm -- Johni, AFO's are Ankle Foot Orthotics. They are formed plastic
that keep the foot from dragging while walking and keep pressure off the
foot in a fall.
john-c. -- Having used a cane every day for the last 18 months, I strongly
suggest that each of you start now with one.
john-c. -- It makes me look "extinguished" to the ladies.
john-c. -- :) LOL !
murf -- I'm looking to build a cane holder for my chair. The company does
not offer one.
john-c. -- Murf: use velcro.
murf -- That's what I was tinking
john-c. -- Johnm....have you tried a cane?
johnm -- John-c, I have a cane but the wheelchair works sooooo much better
around the house.
john-c. -- Understood, johnm
murf -- johnm - me too but I'm leaving scars on the walls
johni -- On the doors on the furniture.......
johnm -- Murf, those kind of scars heal.
murf -- johni you know it! LOL
johni -- Yes. My wife says 'nothings broke that can't be fixed' Better
than me getting scars.
murf -- Karol is talking about installing bumper pads on all the wall up
to about 3 feet.
john-c. -- Johni: sorry I was late; where are you from?
johni -- Cheshire, England
john-c. -- johni: makes me smile thinking of Cheshire.
johni -- Why is that John-c
johni -- The Cat you mean?
johni: you got it :)
johnm -- Isn't it amazing how far and wide this disease takes us?
john-c. -- sure is; makes one realize that we're all one "family".
chuck -- We agree with the KDA and feeling like "family". We felt we
traveled this road alone since 1991 until KDA.
murf -- john-c do we have time for your joke?
butch -- Kunchlady--Haven't heard from you since you logged on. Do you
have someone who has Kennedy's Disease?
john-c. -- OK: here's the one for today.....It'll come in a few
john-c. -- Couple was going out for evening; called a cab.
john-c. -- Cab comes--as couple starts out, the cat runs inside.
john-c. -- Don't want the cat in the house.
john-c. -- Wife goes out to cab. Husband goes inside to chase cat out.
john-c. -- Wife doesn't want cabbie to know house is empty........tells
cabbie that husband went back to say bye to her mom.
john-c. -- Few minutes later, husband gets into cab, out of breath.
john-c. -- "sorry I took so long" he says.
john-c. -- "Stupoid #$%^&* was hiding under bed. Had to poke with coat
hanger, wrap in blanket to keep from getting scratched, and I hauled her
a-- down steps & threw her into the back yard.
butch -- LOL-LOL-Thanks John. You always have one to share with us.
butch -- You can always count on John C to keep us laughing. It is
laughter that sees us thru the bad times.
john-c. -- this is harder than it looks.
murf -- good one john LOL
johni -- Nice one John-c. Thanks for the laugh.
john-c. -- Fun, as always talking with you all.
john-c. -- How's Chuck in this cold weather?
john-c. -- About 5 minutes left for today.
chuck -- He said to tell you he has been frozen. Doesn't go out in bad
weather.Have you not been up this way???
john-c. -- Info on upcoming conf is taking shape.
john-c. -- Anna Lea....working on it in next 30 days.........your way also
in same time, Butch.
chuck -- Bye and thanks for the info and LOL this morning.
johni -- Gotta go. Nice talking to you all. We will keep you all in our
butch -- So long joni--Stay healthy till next chat. Goodbye.
chuck -- {goodbye chuck}
butch -- Hey Murf--The sun has been up for several hours. I guess it is
about time for Karol to rise also. How is she progressing?
murf -- butch - still sleeping it's no noon yet
johni -- {goodbye johni}
john-c. -- johni- thanks for the info.
john-c. -- johnm..are you coming to NOLA?
john-c. -- NOLA = New Orleans Louisiana
butch -- Glad you told us what NOLA was. IDK!!I didn't know. LOL
john-c. -- idk??
murf -- It will be a great conference
johnm -- John-c, right now we are kinda planning on making the trip to
NOLA and spending a few days in Biloxi on the way home.
john-c. -- Got it...I'm s l o w.
johnm -- I bet we could come up with all kinds of initials to convey our
thoughts on these chats.
john-c. -- NIABOM, John
john-c. -- No Ifs Ands Buts or Maybes
johnm -- Thanks john-c, I didn't do to well trying to figure that one out.
john-c. -- Best part will be seeing all again & meeting others for 1st
john-c. -- I'm a better man for knowing each of you. Thanks for all that
you contribute.
butch -- Here is hoping Patrick gets over his flu. Don't need respiratory
problems along with his other problems. Hope to see you well, Patrick.
john-c. -- Bill Cecere is coming down this week for test in DC. Hope to
see him & Terese for a visit.
murf -- My brother David had a great time last year and is planning to
attend with wife allison this year.
john-c. -- That was good to see you two brothers, Murf.
john-c. -- My brother (no symptoms - 53) just got tested last week.
murf -- 53 years old and no symptoms???
john-c. -- None. I'm the lucky one. He's BALD
murf -- john-c you're the reason no one want's to leave the chat on time
johnm -- murf, that's wouderful. My brother is seeing some weakness but
doesn't want to be tested. he's 51.
john-c. -- We are seriously out of time. Probably will be kicked out of
calss soon.
john-c. -- class.nervr culd spel
butch -- Has anyone heard from Lori? Last chat she said Duane was not
doing well. Lori, let us know how he is doing.
murf -- send our best to Duane if anyone is talking to them
john-c. -- OK friends; keep Patrick in thoughts & prayers.
butch -- Thanks to all who participated today and hope you all stay
healthy and safe till next chat. Goodbye for now.
johnm -- So long everyone.
john-c. -- OK, I'm outta here. See you all in a few weeks.
john-c. -- {goodbye john-c.}
butch -- Thanks Murf for carrying the ball in todays chat. Good job.
murf -- Bye all, John-c I'll wait for your call
murf -- {goodbye murf}
johnm -- {goodbye johnm}
butch -- {goodbye butch}