Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every few days a baby boy is born with this DNA defect"

Our Focus Remains on Research, Education and Support

The Kennedy’s Disease Association has worked to educate others about this lesser-known disease and to support clinical research efforts. We distributed information to more than 10,000 neurologists to help them recognize clinical signs and symptoms of Kennedy’s Disease.

Will my child be born with this DNA defect?

It takes an enormous amount of money to fund research…more than any of us can afford alone, but together, we are capable of great accomplishments. We are searching for available foundation grants, but the process is lengthy. We need researchers to continue their work, and it is only the KDA that makes funding this disease a priority.

Kennedy’s Disease Knows No Boundaries...

It is passed on from generation to generation in families worldwide. Males generally inherit the disease symptoms and females are the carriers. The defect is in the ‘X’ Chromosome that makes testosterone almost a poison to his body.

What is Kennedy's Disease?

Kennedy’s Disease (spinal and bulbar muscular atrophy) is an adult-onset “X” linked inherited disease with symptoms usually beginning to appear between the ages of 30 and 50. However, onset has also been reported as early as in the teens and as late as the 60s.

2003 - May 03, Mobility Aids - cane, wheelchair, etc.

Kennedy's Disease Chat Transcript 05-03-2003

Topic: Use of a Cane, Wheelchair to Increase Mobility

Host: Terry Waite

Chat Participants:

John-c
terryw
teda
don48312
lenj
murf
johnm
bruce
pa-paul

BEGIN CHAT

terryw -- hello ted
teda -- Good morning Terry
teda -- How is everything in southern CA
terryw -- it's rainy here in Calif, it never rains here...
murf -- {welcome murf}
murf -- morning all
terryw -- They call light sprinkles a major storm here LOL
terryw -- hi murf.
teda -- they had 123 inches of snow at Donner Pass in April alone
terryw -- ted, is it raining up north?
teda -- yes, and should all day
murf -- Thry wrote a song about that, didn't they Terry?
terryw -- yep murf, that's why I said that.
terryw -- Newscasters on TV are out in full storm gear reporting and its
only light sprinkles
john-c. -- {welcome john-c.}
bruce -- {welcome bruce}
murf -- Hi John
terryw -- hi john,
bruce -- Good Morning, Ya'll
john-c. -- 'morning all
murf -- Morning Bruce
john-c. -- Well, Terry, did you get the home?
terryw -- Yep John, and we sold ours already.
bruce -- Fantastic News! You must be pretty happy.
terryw -- happy but a bit scared.
teda -- terry where are you 2 moving to?
terryw -- Ted, near Yosemite Park
terryw -- Yosemite?
bruce -- When do you move in?
terryw -- escro is 60 days around July 4
terryw -- if everything goes right
murf -- Next conference there Terry?
murf -- Right we can all go water rafting:-)
pa-paul -- {welcome pa-paul}
terryw -- hi pa-paul
john-c. -- :)
murf -- Morning pa-paul
pa-paul -- hello
johnm -- {welcome johnm}
terryw -- hi johnm
lenj -- {welcome lenj}
terryw -- hi len
johnm -- Good Morning All.
lenj -- Hello everyone, I finally got up early enough to join you.
terryw -- murf?
john-c. -- Looks like a good crowd for this chat
murf -- Morning Len
bruce -- Our move took a lot out of me. On my feet to much - packing,
unpacking, stress, etc. It took me about two months to recover.
john-c. -- Bruce: still overall, are you glad you did it?
bruce -- Yes, John, we are very happy we made the move. I just needed to
be smarter and more conservative with my energy. Same old problem.
bruce -- One thing we did right away was to hire a specialist who
installed the ramp, grab bars in the bathroom and shower, installed a high
toilet, etc. This made all the difference in the world.
bruce -- One story is fantastic. I have my own exercise room and office,
both on the main floor. The master is on the main floor. Life became so
much easier and safer.
terryw -- I am dreading the move part
terryw -- It will be so nice to finally be in a one story.
lenj -- Our move to Vegas was a killer, but well worth it. Buffalo had
another rough winter
johnm -- When we moved to Florida we had it all done for us except for the
unpacking which we took our time doing.
terryw -- how's everyone getting around these days?
murf -- I feel energetic today, but it will pass
terryw -- lol
john-c. -- way to go, Murf.
lenj -- Terry I bought a van and had a ramp installed. Gm sent me a
mobility check for 1,000 dollars 2 weeks later.
lenj -- Now my scooter is mobile
murf -- Did you buy a ramp or a lift?
lenj -- A pull down ramp
murf -- Good deal Len. Will you be bringing it to NOLA?
lenj -- Probably not. I’m flying
terryw -- that's great len, how's that working for ya.... Oh no, now I
sound like Dr. Phil
pa-paul -- Lenj which van did you buy, if I may ask, I have been looking
at the silhouette and venture
lenj -- I bought the Venture. It's seats are butt height, so it's easy to
get in and out
pa-paul -- lenj thanks that is probably what we will get also
johnm -- I got a Toyota Sienna with a jib crane type lift.
murf -- Me too Johnm, I got a Bruno curb sider
johnm -- My only problem is that I had to take both rear seats out and
store them in the garage.
murf -- Me too they'll be new where we go to sell
lenj -- In my Venture, I had to remove the last seat and fold the middle
forward when moving the scooter. I have a 4 wheel Celebrity that is very
large.
johnm -- murf, I had three Mercury Villagers and the rear seat moved
forward far enough so I didn't have to remove it. They quit making them
though.
don48312 -- johnm Mercury is coming out with a new van in the near future
johnm -- Don, I'll have to keep that in mind but I really do like the
Toyota.
don48312 -- your new van is nice john
murf -- My chair just fits, to mush extra room to get it in
teda -- Does anyone know if the lift crane will work in a Suburu station
wagon
murf -- Ted - The Bruno line has lots of that stuff
bruce -- Ted, measure the interior height and then measure your
chair/scooter height plus the lift's height. I have a van and we were very
close.
john-c. -- Bruce, Len, John m: ---- any helpful hints for Terry & others
who are planning a move? That could be a future topic.
terryw -- I have lots of tips that I have created, and checklists
teda -- Sue and I were in NOLA for 5 days end of March. I rented a scooter
there. worked great for seeing the French Qtr
lenj -- Tedlet me know where you rented the scooter and how much. I think
I'll do that for the conference
don48312 -- {welcome don48312}
murf -- Teda - we could put that out for people to see there is a service
like that there
teda -- Len I contacted scootaround.com and they wanted $160 for 5 days, I
got it through Mr. Wheelchair for $108 for 5 days.
terryw -- hi don.
john-c. -- PA Paul: do you need a four wheel drive one where you are? I
sure would here in MD (Close to Hanover/York).
pa-paul -- johnc no I will avoid the 4wheel because of the extra gas
mileage
pa-paul -- just have to stay put when its bad weather
john-c. -- teda: could you please write to me about NOLA as we need some
"eyes" who have recently been there to assist with some Conference
details.
pa-paul -- john-c I have in-laws there if their is some specific you need
looked into
john-c. -- pa paul: great, can you email me after the chat, please.
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
don48312 -- GM ALL, JUST FINISHED CATCHING UP ON THIS CHAT
terryw -- Reminder for anyone transporting an electric wheelchair or
scooter n a plane. Do not let them load or unload it from the plane until
you talk with the loading supervisor. give him specific instructions as
how to handle the chair. as you arrive at your distant location ask the
flight attendant to have the loading supervisor contact you on the plane
before they unload the wheelchair. this will help prevent damage.
bruce -- Terry, I remember your situation with the chair very well. What a
shame.
terryw -- take it from me, I learned this first hand at the last
conference.
murf -- Terry - which airline did you say does not fix these chairs?
terryw -- southwest is the only one that I know of that has a repair
contract. All others could care less if they damage it.
murf -- That's good info for people coming. lets put that on the mailer
terryw -- yes, that's a good idea murf.
bruce -- John M - does Toyota offer the $1,000 rebate for lifts?
johnm -- Bruce, yes, Toyota does offer the rebate ands it didn't cost me
anything to move the lift to the new van.
bruce -- At the time I was replacing my other van, only Ford, GM and
Chrysler were offering the $1,000 rebate. I went with the T&C and love it.
The $1,000 rebate was great.
don48312 -- Lern, looking forward to our visit to LV in July. might take u
up on your offer to pick us up at airport on July 26
lenj -- I'll pick you up at the airport(That's been my job lately)
don48312 -- good job Len
don48312 -- good job Len
lenj -- Don, Can't wait for you guys to come to Vegas. Maybe Terry and
Susanne can join us. How bout it Terry
terryw -- when len?
don48312 -- July 26 to 31
don48312 -- at excalibur
don48312 -- in poker room
terryw -- we will have to see len, we are just gonna be moved in. I will
let you know how it goes.
john-c. -- Terry, after the move you might need to go to Vegas & have a
drink for two days.
terryw -- The drive to Vegas after the move will go from 5 hrs to 8
terryw -- we would fly
don48312 -- I wanted to retire to Vegas, but that scared the hell out of
wife, lol
teda -- Bruce, I don't have a scooter yet, I'm looking into all the things
I will need to do to get one and transport it too.
don48312 -- teda, be sure to talk to MDA first. if they have 1 in their
loan closet, u can borrow it for free as long as u need it
teda -- Don, I already have talked to MDA and they will pay $2000 towards a
scooter. I've been to one of there support groups also
don48312 -- teda, for 2,000 u can buy a nice scooter
teda -- Thanks to the person that told me to be one of Jerry's kids while
we were in Baltimore
bruce -- Ted, Don is right. The MDA had several scooters and chairs that
could be trailed. I didn't take them up on the offer, but knowing it was
there to use was great.
lenj -- My scooter is an MDA loan closet one
don48312 -- MDA here in Tampa is great. extremely helpful
murf -- Len - does your ramp go put the back or the side?
lenj -- Mine is in the back, but you can have either.
murf -- The Honda is a nice van but we can't put a lift in it
murf -- In Texas you don't have to pay TT&L when you buy a van for your
chair. Check in your state
john-c. -- Don, that's a real good idea for the guys going to NOLA, thanks
lenj -- I hear our conference is 2 blocks from the NOLA casino
don48312 -- hi john c
john-c. -- Hi Don
terryw -- my next scooter may be "The extreme 4X4 scooter" advertised in
quest magazine. This way I can get around on the new property and on the
lake shores to go fishing.
terryw -- It's expensive though
murf -- Terry - check out the Invacare Xterra GT. that’s what I have and I
can go anywhere
bruce -- Terry, I have the Pride Legend and wish I had something more
durable for the property. I am actively looking for something that will
allow me to go into our woods without hanging up or turning over.
terryw -- The Extreme 4X4 will do it.
murf -- Its only $8200 but I got mine for $5600
murf -- Terry - I'll have to race you. LOL
terryw -- Look here at the Extreme 4x4
http://www.magicmobility.com.au/prod01.htm
terryw -- did anyone look at that link for the Extreme 4X4 ?
terryw -- http://www.magicmobility.com.au/prod01.htm
terryw -- WOW
murf -- Got it copied I'll look after the chat, Thanks Terry
murf -- I just looked at your 4X4 Terry. WOW!!!!
terryw -- Yep Murf, that’s the model for me.
terryw -- murf I think the Extreme 4X4 is about $11,000
murf -- Ouch that hurts
murf -- It looks like a quad
terryw -- That is a bit expensive.. but what is mobility worth?
don48312 -- if you buy a scooter, I’d recommend getting solid tires to
eliminate the need to fill air in tires, and eliminate flats
johnm -- My next tires are going to be the solid ones also.
lenj -- Especially for us big guys--uncle Don
john-c. -- I have a golf cart for yard work & getting around the property.
For what it's worth, Bruce & Terry, with almost 3 acres, it's a Godsend.
bruce -- John, I have also thought about that. How is the maintenance on
the golf cart? Did you buy it new or used? What kind is it?
john-c. -- Bruce: Used (Great condition) - Elec-$500 after I walked into &
talked in person with the pro/owner and he understood I had a NEED rather
than a want. He picked out a good one & had it gone over by his
Maintenance guy---My only maint is to add H2O to the batteries .....Elec
is the way to go/.
bruce -- Thanks, John. I need to check it out.
bruce -- John, did you buy it from a golf club or from a dealer?
john-c. -- made by EZ-Go, called a Club Car. You can strap tools on back
with the bag straps & there's a basket in back of the seat. Mine has a
roof & so should yours.
john-c. -- From the pro at the golf course -- they trade them in (here) in
Sept/Oct
don48312 -- we use golf carts here in Sun City center, FL for Wal-Marts,
church, supermarkets, bank, etc.........
don48312 -- I would also recommend seat belts on a golf cart. prevents
falling out on turns or accidents
johnm -- I moved into an area where all the outside work is taken care of
for me.
terryw -- 4 wheel drive electric scooter
pa-paul -- Maybe the kda web page could have a link to owner comments for
those of us about to have to go that route.
terryw -- Great Idea paul.
pa-paul -- You know the make and model and a few words pro or con
johnm -- I don't do any flying anymore as I need the scooter to get around
and flying is too much of a hassle. I can't get our of the seat on the
plane either.
johnm -- I like having the scooter with me. Don had a little problem with
his on one of his flights also.
lenj -- John, To get up, use an aisle seat--Be sure before you sit down
that arm rest goes up. All SS flight do
lenj -- UP
don48312 -- SS flights ?????????/
murf -- I know what you mean Johnm
lenj -- Southwest ( hands don't work)
terryw -- I would like to get a fishing boat but John-c reminded me I
should see if I can get in & out of it before I purchase it. I guess I
should check that out first. LOL
murf -- Terry- ma friend of mine has a pontoon boat and its ok for me
terryw -- I forget who at the last conference had the little Yellow
scooter that had the seat that turned around backwards for sitting at the
dinner table. I really liked that scooter. Anyone remember that?
terryw -- I think it was Peter Glick
don48312 -- my seat swivels around like that terry, but green
johnm -- Terry, I wasn't there but my Pride works that way also.
don48312 -- I agree, electric unless u have hills 2 climb, then gas
terryw -- bye bruce.
teda -- Sound like 4 wheels are better than 3
johnm -- Teda, it depends on where you are going to use the scooter and
how heavy you are as to 3 or 4 wheels. My 3 wheeler works just great for
me.
don48312 -- i have Pride Victory model, great scooter
don48312 -- i have 3 wheels, easier to maneuver
don48312 -- I have a Harmar scooter lift attached to my car to transport
my scooter. works just fine
teda -- Don, is that one of the lifts that is on the back of the car?
don48312 -- yup teda, attaches to my trailer hitch
teda -- and outside
johnm -- The only thing I don't like about a lift on the OUTSIDE is that
you have cover it when it rains or stay home.
don48312 -- yup john, but cheaper than buying a new van
john-c. -- I saw a lift on outside, mounted in what looked like a rooftop
carrier - it was 100% enclosed.
don48312 -- john-c, I have a vinyl cover to use when it rains
terryw -- If anyone has any comments/recommendations on scooters
Pro's/Cons post them in the message forums at www.kennedysdisease.org
terryw -- under mobility
terryw -- It's easy to post
johnm -- I think if you look around you'll find almost anything to help
the disabled. I know a guy who had a trailer that he pulled with his golf
cart to haul his scooter.
don48312 -- I’ve seen it johnm
lenj -- Don Does it keep your beer cold
terryw -- Susanne one dumped me out of my manual wheelchair face first at
the World's Fair in Hannover. LOL
terryw -- Once
terryw -- She hit a hole with the front wheel
john-c. -- I only fell out after the beer was gone
murf -- What did you say to her?
terryw -- LOL murf.
murf -- oh it wasn't intentional
don48312 -- haven't done the beer thing for 17 years
john-c. -- LOL murf
terryw -- can you hold a tailgate party on a scooter?
don48312 -- no beer age 0 to 20, lots beer 20 - 40, no beer 40 - 60, look
out next year!!!!!!!!!
lenj -- Don, it's FREE in Vegas for the gamblers
don48312 -- drink diet coke Len, gotta keep alert
terryw -- I would pay anything for my strength back
murf -- Me too
don48312 -- wouldn't we all Terry
lenj -- The "scenery"keeps you alert
pa-paul -- AMEN
john-c. -- same here.
murf -- Johnc Joke?
john-c. -- someone e
terryw -- Anyone scared about SARS and KD?
terryw -- I am
lenj -- Does everyone have extreme peaks (strength) an d valleys
(weaknesses)
lenj -- I have very little of the road times
pa-paul -- me too but going on a cruse may 10 anyway
terryw -- We must practice extreme hygiene around people. Wash hands a lot.
don48312 -- not extreme Len, but have peaks and valleys
johnm -- I haven't thought too much about SARS. I'm not around too many
people that travel out of the country though.
murf -- Len - I do
terryw -- Same here Len, Don
john-c. -- which one scares you, terry..the KD or the SARS
terryw -- I can handle KD, its the SARS that scares me.
don48312 -- i just got back from a cruise. new ships are accessible
terryw -- I know John-c see's lots of clients, he should keep those
atiseptic wipes with him in his car.
don48312 -- pa-paul, cruise where?
pa-paul -- don to western carabian
don48312 -- just where we went pa-paul, Veendam out of Tampa
don48312 -- key west, belese, cosamen & st tomas guatamala
don48312 -- cozumel
pa-paul -- really looking forward to it
bruce -- Friends of our just returned this week from three weeks in China.
We were a little nervous initially, but they went to an emunoligist (sp)
when they returned and got a clean bill of health.
terryw -- In the new area we are moving to we want a garden but they say
Deers eat everything. Does anyone have a good cure for deers eating
gardens? and don't say a gun LOL.
teda -- VERY tall fences
murf -- In that case Terry...I can't say
terryw -- how tall?
teda -- from what i have heard about 10 feet and it can be made of chicken
wire or similar
lenj -- Terry Get a dog. and walk him gaily aroud the garden. They are
natural enemies
terryw -- how about a fanced in area with Chicken wire over the top?
teda -- terry, at what elevation is your new place?
don48312 -- this was one of the best chats ever
terryw -- fenced
terryw -- 2300
lenj -- Daily
john-c. -- Terry: We FEED the deer with cracked corn & they leave
everything else alone. 4-6 of them here at same time each evening-eat corn
& leave.
don48312 -- you all take care. cya in 2 weeks or at NOLA
bruce -- A good dog, Terry
terryw -- whats cracked corn?
john-c. -- Herd corn off the ear, and cracked by rollers so the kernels
are broken. Any feed store has it.
john-c. -- hard-not herd.
johnm -- You know Terry, "Jimmy Cracked Corn & I Don't Care" LOL
john-c. -- LOL Johnm
terryw -- John, the crack dealer?
terryw -- TY john
don48312 -- bye
terryw -- do you wire over the top?
terryw -- bye don
lenj -- John C--That's against the law in NY. They just prosecuted a woman
in WNY
lenj -- No-- Conservation want deer to survive naturally not domesticated.
Herd is too large and invcading residential areas
bruce -- We had deer in PA and also here in GA. They eat some plants, but
we do like John does and feed them and put out salt licks. They are not a
problem and only occasionally eat some of the plants.
john-c. -- Was that for "baiting"?
murf -- Bye Don, see you in NOLA
bruce -- Take care Don
pa-paul -- bye ALL
murf -- Bye Paul
teda -- Terry, guess you will be closer to us now as Yosemite is about 3
hours from here
terryw -- yes ted, we will have to visit.
teda -- Terry, Our guest room is ready
terryw -- ty Ted, same for you
terryw -- ty = thank you
terryw -- the man who owns the land we bought has Buffalo now on the
property
terryw -- what are Buffalo good for?
john-c. -- Good market for Buffalo chips, but watch out for those wings.
terryw -- lol john?
bruce -- Well, I have to run. Company is at the door. Thanks Terry for
hosting today and thanks to everyone else's input. Be safe and healthy.
bruce -- {goodbye bruce}
terryw -- bye bruce
pa-paul -- {goodbye pa-paul}
lenj -- Terry do we know the cost of rooms yet at Renaissance in NOLA?
terryw -- murf?
terryw -- john?
murf -- $160 isn't it?
john-c. -- Herd here about stable, but they have legislation now for
Sunday hunting as discussion.
john-c. -- yes, $160.00 + tax
johnm -- Len, good question. We may be staying somewhere away from the
Renaissance. It may be more than we want to pay for a room. Since we will
be driving in, it won't make any difference.
john-c. -- LOL Terry!
lenj -- Johnm Are you, Don and Mike coming together?
teda -- John, French qtr has rooms for $65 a week. Don't count on room
service. LOL
johnm -- Teda, I don't think we'd go quite that low.
johnm -- Len, probably not as there would be room for all the assistants
that are required.
johnm -- Len, NOT be room
murf -- Rooms are very full in NOLA at the time we're there so book early
john-c. -- Murray's right guys: it took us about 4 weeks to get the hotel
deal worked out, and we spoke to over 20 different ones. The SFN
convention in NOLA at that time has over 19,000 rooms booked/blocked.
lenj -- John M--I'll call either Don or Mike later--I have some ideas
john-c. -- We really worked hard to get the discounted rate of $160. in a
hotel with all the amenities under one roof so there could be the
cxonvenience of not having to go from here to there , like in case of
rain.
murf -- John-c That makes it worth it
lenj -- Good chat. Goodbye everyone
murf -- Bye Len see you in November
john-c. -- Bye Len
lenj -- {goodbye lenj}
terryw -- I have to take off. see you all later.
murf -- Talk to you soon Terry
teda -- Good bye all
john-c. -- Bye Terry
teda -- {goodbye teda}
terryw -- {goodbye terryw}
murf -- I better go as well See you all soon
john-c. -- Me too. Bye all.
john-c. -- {goodbye john-c.}
murf -- {goodbye murf}
johnm -- Looks like everyone is clearing out so I'll say goodbye also.
johnm -- {goodbye johnm}

END CHAT