Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"KDA is One SUPER, Non-Profit Organization."

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.

2002 - September 21, Cruises and other Vacations

Kennedy's Disease Chat Transcript 09-21-02

Topics: Cruising, Vacationing

Host: Terry Waite

Chat Participants:

bsofree
Speedy
patrick
butch
johnm
john-c
terryw

BEGIN CHAT

bsofree -- Hi folks, good morning to you all.
terryw -- Hello
terryw -- what's going on today paul?
bsofree -- What's the plan for the weekend? Too cold for the beach?
terryw -- Paul, Working on KDA stuff
bsofree -- I have to drive June bug to her Chinese class and then run down
to Anaheim to sign the book for my loan broker. From 1-3pm, I have Spanish
with June. Super, we celebrate our Moon Festival.
terryw -- Getting everything wrapped up for the conference. Paul you will
be getting your packet this week from us.
terryw -- You sound busy paul.
butch -- bsofree--What do you do in your spare time? Sounds like you don't
have any time to spare.
bsofree -- Spare time, my whole life is a spare time.
butch -- {welcome butch}
speedy -- {welcome speedy}
terryw -- Hi Speedy
speedy -- hi terry everything ok?
terryw -- Yes, speedy, everything is oK now. The MDA servers had some
problems I guess and the chat site links were changed. I have corrected
them now on our KDA site.
bsofree -- Hello speedy, my name is Paul.
butch -- Good day to all. How is your morning going? Can't wait for the
conference. Putting faces with the names will be great.
patrick -- {welcome patrick}
terryw -- paul = bsofree
speedy -- hi paul how's everything in Calif.?
terryw -- hi patrick
bsofree -- Oh, be sure to look at the moon tonight or the next few nights.
It will be at it's fullest. Then, if you all are in or close to a Asian
shop, try the moon cake?
terryw -- I may take my telescope out tonight.
bsofree -- Hi Patrick & Butch?
patrick -- Howdy, everyone, from beautiful sunny Kansas!
butch -- Hi Paul, Patrick, Terry, Speedy, from Lancaster, Pa. Hoping for
some rain today. Still very dry in PA.
terryw -- Has anyone ever been on a cruise before? other than a navy ship LOL
speedy -- about seven or eight times
terryw -- Wow Speedy, you are somewhat of an expert then.
bsofree -- That's a good one Terry. I have taken a week cruise through the
gulf of Saint Lawrence (from Montreal to St John, Newfondland). It was
done before I knew I had KD.
speedy -- But I didn't have to use wheel chair or scooter I could walk
then.
speedy -- I went to Panama Jamaica Cartahnia South America Aruba Portirican
Rum OH I mean Portirca Hati St Thomas
butch -- Terry--Yes Mary Lou and I went on Royal Caribbean cruse line. Went
to the eastern Caribbean. You will be treated royally.
terryw -- We are going to be taking a much needed vacation cruise in Jan
for 10 days and I am just learning about traveling on a ship with a
disability & wheelchair.
patrick -- I've never been on a cruise or even visited a cruise ship. All
I know about cruises I learned from "Love Boat" and cruise line
commercials.
terryw -- Yes we are doing the eastern Caribbean also
terryw -- We got the bigger cabin free upgrade because of the wheelchair.
bsofree -- Terry, want to try a shorter run from L.A. to some Mexican
coastal resorts. We were looking at the 2 nights price and it is very reasonable.
terryw -- Electric wheelchairs are not advisable unless you do not plan to
leave the ship.
butch -- You will be at home. Knowing how we walk on dry land, you will do
well on your sea legs.
terryw -- some ports you have to be taken into on small shuttle boats
since they are not deep water and they will not take an electric chair on them.
bsofree -- Terry, why is the electric wheel chair not advisable? Is it
because of the weight?
terryw -- We want to do one of those also bsofree. Maybe next summer
butch -- I think it is great that they give you a cabin upgrade and I hope
they locate you close to an elevator.
terryw -- My balance is real bad now.
bsofree -- Sorry Terry, you answered my question. I am going to try out
the Freedom One in December, on a short Cruise from L.A.
patrick -- Paul, what is a freedom chair?
bsofree -- Patrick, Freedom One is a transportable scooter and not a
chair. It is shown in our KDA website.
patrick -- Paul, I remember it now. Somehow I got a mental image of a very
foldable, super lightweight manual chair.
bsofree -- It is so strange. I have been looking for key words for our
super light weight scooter. Finally, the key work that links to several
products is "transportable scooter". So, Freedom One should be aimed at
those who needs a lifestyle enhancement, a little aid to mobility and not
really a medical scooter for the mobility impaired.
butch -- PAUL, is the freedom 1 the 45 lb. scooter costing about eight
hundred dollars?
bsofree -- Patrick, I shall be in the KDA conference for only 1 morning,
the 14th morning for breakfast. I shall exhibit the Freedom 1 there. It is
a 43 lbs fully loaded scooter, not a manual chair.
terryw -- Bsofree, I am glad that you are putting the freedom 1 in Quest
magazine. that will be good.
bsofree -- Terry, we signed up with Quest's market place. I have been in
touch with Focuse (?) from the ADA.
terryw -- I did go bowling 2 weeks ago for the first time in 3 years
because I could not in the past but I have figured out how to still be able to go.
terryw -- I bought a pair of those Forearm crutches the ones with the forearm brace
terryw -- I was bale to walk out and brace myself so I did not fall over
when I swung the bowling ball back and I did OK 112.
terryw -- Able
terryw -- my fingers are stumbling today. trying to type to fast.
terryw -- I was so glad to be able to at least throw the ball again.
butch -- Its great you bowled. As long as we try, we can do more than
others expect of us.
terryw -- Can anyone else still bowl?
butch -- Last time I bowled, I fell at the foul line twice during the
three games. Of course I felt foolish but I completed the games.
bsofree -- Hi Butch, it certainly is.
terryw -- butch, I recommend those forearm braces. It worked for me.
terryw -- I only used 1
terryw -- I would walk out to the line, Brace myself with the one forearm
brace firmly planted, Using a light ball I swung back no loss of balance
and I did OK.
terryw -- Back to the topic of cruising, What tips does anyone have for
people with disabilities going on a cruise?
bsofree -- Terry, after I try it in December, I hope to say, "Bring along
a Freedom 1"
butch -- If you wear a size 36 waist, take along size 36, 38 and 40. The
food is awesome.
bsofree -- Actually, my media person, just finished a Disney cruise with
her grand children. They loved it.
johnm -- {welcome johnm}
terryw -- Paul are you still looking into giving 1 of the freedom 1's for the auction?
bsofree -- Yes, I sure am.
terryw -- Hi Johnm, Have you recovered from your big shin dig?
patrick -- I just returned from a "road trip" to the Denver metro area, my
first in several years. It's a straight drive to the west, about 440 miles
via Highway 36. I visited friends and relatives. I'd been avoiding
traveling because of worsening balance, falling, etc. This time I just
decided to "do it", plus I needed a trial run for Baltimore.
patrick -- Dencer=Denver
terryw -- How was it patrick?
patrick -- The trip went well. I had a lot of small anxieties before the
trip. I planned, and then tried to not worry "What if". It turned out that
I had a lot of fun, and that my fears never really materialized.
terryw -- how did the legs and arms hold up over the 440 mile drive?
patrick -- Re the drive, my shoulders and neck got tired and tight, and my
right foot always goes more or less numb when I sit for an extended
period. Other than just struggling to stay awake in western Kansas and
eastern Colorado, driving was OK.
bsofree -- I don't have much trouble driving say from L.A. to Vegas,
stopping usually once. It is the morning rush to go to a meeting, office,
drive June to school...that could give me some problem with steering.
terryw -- My arms tend to get tired holding them up on the steering wheel
for long periods.
bsofree -- Terry, I have to rest my arms as well while driving. I try to
rest my elbows, whenever possible & safe.
terryw -- LOO Butch
terryw -- LOL
butch -- I can't begin to thank Terry, Patrick and all you fellows who
come aboard these chats. I learned so much from all of your adventures and
trials and errors. THANKS!
terryw -- I recommend even thos forearm crutches for anyone wanting to do
stuff around the house & yard. the regular Cain does not give the added
support needed for bending over and staying steady. if you get one invest
in a light weight model.
terryw -- I am typing terrible today
patrick -- Terry, this morning I'm just slow, typing and reading. I
appreciate the extra time.
butch -- Most of us travel in our own vehicle. Have any of you taken a
more than 1 day trip on a bus?
bsofree -- Butch, the bus ride should not be a problem for me, but getting
on & off the bus would be.
terryw -- No butch
johnm -- There's no way I could get on and off a bus anymore. I don't even
think about flying because I couldn't get out of the seat.
bsofree -- johnm, since I have to fly so often, I need to share with
others re: getting on & off the airline seat?
bsofree -- What I do is shove my foot in one of the metal brace from the
front seat, push myself up and seat on the arm rest, and then rest & try
to get up from there.
butch -- I asked about traveling aboard a bus to see if 'leaving the
driving to us' would be easier on us.
bsofree -- Butch, I don't think traveling in a bus would be a problem with
my family. My wife usually help me up the stairs (any stair) by holding up
my back (seat of my pant) and up I go. Getting off, is lesser of a problem.
johnm -- I can't even get up a regular step anymore much less a bus step.
terryw -- I can do steps only with dual hand rails on both sides
bsofree -- In 2 weeks, I have to participate in the Interbike show, Las
Vegas. I plan to drive up there myself in my vroom, vroom machine,
hopefully, with the sun roof opened all the way.
terryw -- Don't get a ticket paul.
johnm -- I just got back from a 4000 mile trip up North from Florida and
did all the driving without any trouble at all.
speedy -- where do you live Johnm?
johnm -- Speedy, my home is in Sun City Center, Florida. That was round
trip to Northern Wisconsin.
terryw -- 4000 miles John, WOW
bsofree -- johnm, 4000 miles north from Florida, which part of Canada (or
arctic circle) will you end up, LOL?
john-c. -- {welcome john-c.}
speedy -- I'm leaving Friday going down to the Treasure Island area for a week.
johnm -- Speedy, Explain Treasure Island.
speedy -- Maderia Beach down below St Pete
johnm -- Speedy, if Treasure Island is near Tampa, Florida, I'd like to
meet you for lunch.
johnm -- Speedy, let me know when you'll have a little time and we'll meet
you at a place of your choice.
speedy -- give me your email address I'll try to get in touch next week
don't know when.
johnm -- Speedy, email address is This e-mail address is being protected from spambots. You need JavaScript enabled to view it
speedy -- ok I got it soon as I find a computer I'll give you a hollar<
speedy -- I got it John
johnm -- Looking forward to it speedy.
terryw -- Funny things asked by people on cruises: What time is the
midnight buffet? Do these stairs go up or down? What do you do with the
ice carvings after they melt? One lady asked a crew member when arriving
at the Bahamas, Where are the rockets? I thought we were going to N.A.S.A
How long does a 30 minute massage take? WHat altitude are we currently at?
butch -- John C--How was the hoe down. Sorry I couldn't make it but I'm
sure you still had a crowd. How many did you wine and dine?
john-c. -- It was great! About 220 people here. Charles & Anna Lea and a
friend of theirs, Pete, were able to come.
terryw -- John, did anyone fall in the pond?
john-c. -- Couple of kids, but on purpose. Everyone else got wet when it
DUMPED from the sky without warning about 9:30. Stopped in 5 minutes &
party went on 'til 2. I'm still catching & cleaning up.
john-c. -- Butch- Sorry that you couldn't make it. >>Come next year.
terryw -- hi Johnc
john-c. -- Sorry I'm late...catching up with your conversation.. Good
morning men.
bsofree -- Sorry, folks, have to sign off. My daughter just reminded me
again her Chinese class starts in 45 minutes in San Marino, a 30 minutes
drive. Have a Bsofree week and happy Moon Festival week-end. Do have a
moon cake or two.
terryw -- Bye Paul
patrick -- Bye Paul...
john-c. -- John M: Are you coming to the conf?......If so & are going out
to dinner on Sun PM, I'll pick you up in my car & take you there.
johnm -- John-c, if you are referring to me, no I will not be at the conf.
john-c. -- I was: I had read the conversation form earlier & saw where it
was hard to do steps & thought I could assist you.
terryw -- We now have 20 Doctors coming to the Conference
speedy -- Got to go see you guys latter, have a good day.
terryw -- bye Speedy
speedy -- See you Terry
speedy -- {goodbye speedy}
terryw -- Off the topic, by the end of the day does anyone lungs get
really tired and hard to breath in?
terryw -- I have found that when I go to bed and lay on my side or back it
is still hard on my lungs to breath in. When I lay on my stomach it is
easy. I wonder why that is?
johnm -- Terry, I don't have any problem with my breathing no matter how I
lay. I sleep well also.
john-c. -- I'll give you a smart but not nice answer later, Terry
terryw -- OK John ?
butch -- I don't have trouble breathing but I still have ALOT of trouble
typing. Talking and breathing is easier for me.
john-c. -- LOL Butch
terryw -- Not me, I sleep well for about 4 hr. then I hurt to bad
johnm -- Terry, NO HURT for me at all.
terryw -- My breathing feels like when you were a kid and you went swimming
all day , you know the feeling your lungs has after that?
patrick -- Bye Larry
butch -- I guess we are all pretty lucky to be talking and planning trips
in cars, boats and busses. Many of MDA patients are just getting by. I
guess that makes us the lucky ones.
terryw -- Yep Butch
patrick -- Butch, I don't think its so much of a "we-they" issue. Among KD
patients, some are minimally affected, and others are quadriplegics. The
only difference is that some day, barring a cure or accident, we will all
progress toward almost total inability to move.
patrick -- quadra=quadri
butch -- Patrick, I say we because Kennedy's is not as life threatening as
many of the other neuromuscular diseases. So I consider myself one of the
lucky ones.
terryw -- I feel the same butch
patrick -- Roger that, Butch
john-c. -- I'm flying to Denver on 10/1 and requested assistance from the
airline already: also got a HC hotel room. Anyone in Denver early Oct??
butch -- John c--what is your witicism for the day?
john-c. -- OK: I heard this one.
john-c. -- Pilot after 8 min into flight says...
john-c. -- This is your Captn......we are almost at cruising
altitude.......
john-c. -- It's time to ..."Oh my God".....and the mike goes dead.
john-c. -- ..........30 seconds later he says...." Just spilled HOT
coffee: you should see the front of my pants"......
john-c. -- ......And I reply "you should see the BACK of mine".
butch -- John c, keep us laughing. It is an all powerful medicine.
terryw -- LOL John,
john-c. -- Helps the lungs!
johnm -- john-c, I see you get jokes in your email also.
john-c. -- I heard that Sat from a pilot friend & almost pissed myself.
john-c. -- He really had me, as he told it on himself.
butch -- Thanks for the laugh. Stay healthy.
terryw -- What do you think about Christopher Reeves being able to move
now. Do you think he had secret stem cell therapy done?
terryw -- He is a major advocate of stem cell therapy
terryw -- I think that will have a big impact on cures
johnm -- I'm not so sure that stem cell therapy is a really bad way to go.
It may need a lot of work to get it right but it may help a lot of us.
terryw -- It is very strange that all the sudden now that he is making
progress. Just seems odd.
terryw -- making
butch -- For a man who doesn't believe in God, he should be saying thanks
to some higher being. I think it is great he has more hope to go on to
being able to walk. First he has to get off the ventilator.
terryw -- Yes that could be part of it also but he has the cash & contacts
to get experimental therapy done.
terryw -- John-c what is the best Mosquito repellent to buy?
john-c. -- Terrw: we don't have too many: Lots of bats here, but I've
heard that AVON Skin Soft (or something like that) is better that any/all
repellents
john-c. -- Have to go & "do lunch" for my M-in-L who's bedridden now B4
another obligation at Noon. Stay well men and smile!
john-c. -- Bye men: See you in a few weeks.
terryw -- thanks John, I read up on that but got mixed reviews on the
message boards
terryw -- my cruise book says buy something with 100%deet
butch -- Avon Skin-so-soft is like putting a marinade on a steak I wouldn't use it as a repellent.
johnm -- I don't spend enough time outside anymore to have to worry about
mosquitoes.
terryw -- that's what I read in the message forums
terryw -- have to do more research
patrick -- Avon Skin Soft worked to repel bugs, and it has been
'marketized' from a lotion into an insect repellent. However, the latest
finding say that DEET is the best general insecticide. Use the highest
percentage of DEET that doesn't cause irritation or damage materials.
patrick -- There is another repellent that is applied to one's clothes,
not the skin. It works especially well when used in conjunction with a
DEET-based repellent.
john-c. -- {goodbye john-c.}
terryw -- hmmmmmmm he left quick
terryw -- 23 days to the conference
terryw -- whooo hooo
terryw -- we have been so busy lately getting stuff prepared. Annette has
been doing a wonderful job for us getting donated supplies & such.
terryw -- She is wonderful
butch -- I guess it is about time to say so-long till the next chat. Stay
healthy. Terry, Patrick, Susanne, and Annette, thanks for setting up the
conference. It is a great way to spread the knowledge about Kennedy's.
terryw -- John-c has done a lot of work also for the conference committee.
patrick -- Adios, Butch!
terryw -- Bye
terryw -- I guess we should end this for now.
terryw -- Goodbye everyone
patrick -- Later, gators.....
patrick -- {goodbye patrick}
terryw -- {goodbye terryw}
butch -- Sorry, didn't exclude anyone on purpose, but thanks again to all
who helped set up and follow thru on making sure the conference is a
success.
butch -- {goodbye butch}

End Chat