Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway. Thanks to them, I have a lighthouse to help find my way."

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Kennedy's Disease Chat Transcript 02-22-2003

Topic:  Easily Accessible Vacations

Host: Terry Waite


Chat Participants:




terryw -- hi butch
butch -- Good morning--can you hear me now--where are you?
butch -- Hi Terry--How was the cruise?
terryw -- It was great, much needed.
butch -- Was there much difficulty with your chair on the ship?
terryw -- A little bit. Only on the doors that lead to the outside deck
areas. They have a raised hump to keep water out, but we managed ok and
someone was always available to help me over them.
butch -- What was the name of the ship and where were your ports of call.
terryw -- Otherwise the ship was great to get around on.
terryw -- The ship was the Dawn Princess, (Princess cruise lines) we were
on the 10 day eastern Caribbean cruise.
terryw -- St. Martin, St. Maarten, St. Lucia, Barbados, Antigua
terryw -- a couple more
bruce -- Terry, your web pictures were great. It made me envious.
terryw -- The ports were all pretty much accessible no real problem at all.
terryw -- thank you bruce.
terryw -- if anyone else wants to take a look at the pictures you can see
them here
terryw -- just cut & paste each URL
terryw -- or just go here
terryw – Susanne also has some shots on her site at
murf -- Good morning all
bruce -- {welcome bruce}
terryw -- Hi Bruce
bruce -- Good morning World!
chuck -- {welcome chuck}
terryw -- Hi Chuck
butch -- Hi Bruce--How much snow did you have? Are you getting the rain
bruce -- Butch, we have moved to Georgia. We did it in January. I will
retire sometime this summer. So - NO SNOW for us!
murf -- {welcome murf}
butch -- Hi Anna Lea and Chuck. How did you and Chas manage through the snow
butch -- Bruce--didn't know you slid south. I know the warmer weather is
alot better for you.
bruce -- Yes, we are officially Georgians - licenses, plates, voter
registration, etc. We called out neighbors when the storm hit and they
were not happy campers.
chuck -- We got about 24+ inches. I have a small snow blower and it kept
me busy and then the "snow angel Pete" showed up. Now it is monsoon
season.....Lousy weather in WV....
butch -- Hey Murf-- How are you doing today? Thanks for taking over the
last chat when Patrick got sick.
murf -- Morning Butch - I'm ok, Karol's in the hospital, she had her
gallbladder taken out Thursday but doing better
butch -- I know Karol wanted to get away but going to the hospital is not
my kind of get away.
murf -- That's where she seems to take her holidays.
butch -- Murf--The room rates are alot cheaper in most US cities than they
are in any hospital,
murf -- and less stressful
terryw -- Sorry to hear that butch.
terryw -- Sorry Murf I am a bit confused this morning (ship lag) I hope
Karol is going to be OK.
terryw -- The Klonopin is just wearing off LOL
murf -- This may be the end of a plaguing illness she's had for years.
terryw -- I hope so Murf,, We wish for the best for you and her.
terryw -- has anyone been anyplace that they recommend for travel
bruce -- Terry, we haven't taken a cruise, but my brother Kerm has and
they also enjoyed it a lot. They felt the accommodations were good for
someone with KD.
terryw -- did anyone have a problem seeing the link to the chat this
morning? the button disappeared and I have to make a new link
bruce -- Terry, I had to load some new software over the Internet before I
could use the link.
bsofree -- {welcome bsofree}
terryw -- Hello Paul
bsofree -- Sorry I am LIFO again (last in first out). Just finished
feeding and caring for my dogs. Hello to you all?
terryw -- Hi Murf, glad you made it.
bruce -- Hello, Paul. Cindy also says Hello.
bsofree -- Thanks and hello to Cindy as well.
butch -- Paul--How are the new chairs going? They are easily transported
and very maneuverable in tight places.
bsofree -- The project is going fine. We just open a store in the San
Gabriel Valley and the name is Lifestyle store catering to folks with
special needs.
terryw -- Paul you guys just sold a bunch of the Freedom's to a cruise
ship company right?
bsofree -- Yes, Terry. In fact it is a cruise ship operator based in Asia.
They believe the little Freedom I is ideal to operate in the close
confinement of a cruise ship.
bsofree -- Hi Terry, sorry to interrupt, I forgot the topic for this chat.
terryw -- Travel locations/recommendations for people with KD
bruce -- Has anyone tried out the new chair that looks like a Jazzy, but
has a hydraulic wheel on the front to lift the other front wheels up
several inches if they hit a small curb or raise area?
terryw -- Have not seen that one bruce
bsofree -- Bruce, I believe it is made by Shoprider, very innovative bunch
of people. I worked with them for close to 10 years.
bruce -- The only issue that I had with the chair was that it did not have
a "lift" seat like the Jazzy. Otherwise, it was priced well, smooth, fast
and convenient. I tested it on a four inch rise and it went right up and
over it without an issue.
bsofree -- Hi Bruce, I am sure your durable medical supplier could install
an after market lift seat for you. Do check it out. Otherwise, call me?
bruce -- Thanks, Paul. I am not in the market yet. I just thought it was a
great idea.
murf -- I found Malaysia very friendly to us but you don't see many people
in chairs
bruce -- Speaking of the topic - we spent some time (on a business
vacation) at Sea Isle, GA. It has great accommodations for people with
disabilities. The staff is great and the beach is flat.
murf -- Terry - did you take your own chair on the cruise?
terryw -- Yes Murf I took the manual chair.
terryw -- Murf the room I got on the ship was disabled designed and had
way more room than the standard rooms.
boop -- {welcome boop}
terryw -- It has been a dream of mine to own a boat and go out on the
lakes. We went looking at boats last night at a boat show and I was
looking to see if I would be able to get in and out of a boat from the
water. Seems difficult even with a new swimdeck design that they have.
Anyone have experience with boating.
murf -- I have a boat in Canada I'm trying to sell. I can't get up and
down the stairs anymore.
bruce -- I had to give up sailing, because I couldn't get in and out of
the boat 'safely'.
terryw -- Murf that’s the problem I see for the boat. If I get in the water
I have to climb the ladder a few rings and then pull myself up with the
grab bars. I can still manage that right now.
terryw -- rungs
terryw -- Hey Murf, do you know of boats called Monterey? are they any
bsofree -- Terry, my problem is my arms are weak as well. I couldn't pull
myself. But if one is desperate enough, I guess one can install a lift
(hoist) on the deck of a boat and lift the person up like a cargo, ha?
terryw -- Hello Boop, welcome
butch -- Hi boop--Where are you from? Do you or someone you know have KD?
boop -- I am going to see about getting a wheel chair mon.
boop -- from n.c. my doctor thinks I have als
terryw -- boop, has your doctor run the blood test to rule out Kennedy’s
terryw -- its a simple test
terryw -- Make sure he runs the test on you
butch -- Boop--be sure of your diagnosis of ALS. Many of the folks with
Kennedy’s Disease were mis diagnosed.
boop -- I Have had spinal tap. 2 mri on lower spine and 2 mgtests. and
they still don’t know for sure what I have.
terryw -- Boop have them run the blood DNA test for Kennedy’s Disease.
murf -- boop - I've had all those done as well then the blood test led to
the DNA test which confirmed KD
boop -- I will ask about that test.
bruce -- Boop, the DNA blood test is a very simple test that says "Yes/No"
you have KD.
boop -- My legs have been getting weaker for 2 years. I t is going slow so
the doc has not decided yet
bsofree -- Boop, we all know you must be going through trying time. But
from all of us here, you will be in our prayer and feel free to contact us
butch -- That is one thing that is so great about this chat. Sharing the
knowledge of KD with others. It is surprising how much knowledge there is
among us aboutKD.
terryw -- Boop sounds like Kennedy’s
terryw -- Boop what made you join this chat today? how did you hear about
Kennedy’s Disease?
boop -- Thanks I got in on this chat for kd sounds like a lot of my
terryw -- Boop there is lots of information on Kennedy’s Disease on our
terryw -- have your doctor look there
boop -- I will look that up again. my legs are the only problem I have
butch -- Boop--Get in touch with Dr. Fischbeck at the National Institute
of Health in Bethesda MD. He is the patron St. of we who have KD.
terryw -- that’s where it starts
terryw -- Dr. Kenneth Fischbeck, Ph.D. his email is This email address is being protected from spambots. You need JavaScript enabled to view it.
murf -- Dr. Fischbeck will be at the NOLA KD conference this year.
murf -- New Orleans LA
chuck -- Boop where do you live??
boop -- I live in n.c.
bruce -- Terry, how did you get from the ship to the boats and then to the
docks? Was there an elevator on the ship for boarding? How about the docks?
terryw -- Bruce, we only had to tender into one port on the small boats,
the rest came into the docks and they had ramps just like in airports for
offloading. the tendering was fairly easy but you had to have a manual
chair or a lightweight electric to take with you.
murf -- terry - sounds like it was worth it.
bruce -- Terry, could you participate in most shipboard activities? In
other words, where they designed to be handicap accessible?
terryw -- most activities did not require physical activities. a few did,
I played water volleyball.
terryw -- Most
terryw -- There was lots to keep busy with on the ship, the cruise
directors keep you busy.
johnm -- {welcome johnm}
terryw -- Hi Johnm
murf -- Boop - do you know we have a conference every year to get together
with doctors and researchers?
butch -- Johnm--How has your week been? As you can see we are all a bit
envious or Terry and Susanne's recent trip. But, we all think it was a
much deserved vacation. Getting together the conference and handling the
web site is quite a task. Thanks again.
terryw -- Our Garage is packed now with KDA stuff. Have to figure out what
to do with it all. No room to move around
terryw -- maybe its time to get a small storage space but do not want to
spend KDA money on that.
murf -- What kind of stuff?
terryw -- Scooters, Boxes of brochures, mugs, stationary etc.
terryw -- lots of paperwork
murf -- I still have a box of cook books but their selling slowly.
chuck -- Terry, you don't think a storage place would be interested in
donating to Kennedy's do you??? You need someplace easily accessible to
terryw -- we also have the birdbaths & feeders also that are up for
terryw -- I could check on that, good idea chuck
terryw -- Yes we have many boxes of cookbooks also I almost forgot about
johnm -- Terry, I can imagine what you must be going through with the KD
terryw -- It is a big job yes murf.
far from home. We are going to keep our trips shorter from now on.
chuck -- Terry, should you not be able to get space donated, I certainly
don't think you should feel any guilt about leasing. You and Susanne can't
do EVERYTHING - you just about do that now.
terryw -- I know, but we are frugal with the KDA money
murf -- Chuck - I agree
terryw -- Annette was great on getting things for the KDA. We miss her
chuck -- Yes, we all appreciate you even though we don't thank you all
terryw -- I am sure glad that we have the help of John & murf on this
years conference.
bruce -- Well, I need to get on down the road. Everyone - be safe and stay
healthy. Until next time.....
bruce -- {goodbye bruce}
terryw -- goodbye bruce
butch -- Patrick, where are you? Hope you are over the flu you were
dealing with during the last chat.
boop -- {welcome boop}
boop -- sorry my computer cuts of occasionally
murf -- How is the Ebay thing going?
terryw -- Murf we can discuss that offline not in the MDA chat room OK
terryw -- MDA does not allow discussion of fundraising in chat
butch -- I think many of us would take more trips if we knew that it was
handicapped assessable. Not only where you stay but. also where you would
eat and sight-see.
johnm -- It looks like out traveling days are over. I fell a couple times
in Wisconsin last summer and my wife is afraid I'll end up in a hospital
terryw -- Johnm do you use a Cain or scooter?
johnm -- I use a scooter when ever I am out and walk behind a wheelchair
around the house.
terryw -- Johnm, get in the chair so you don't fall
murf -- My traveling days are just about over too. only where I can
drive so my chair is with me.
terryw -- I am going to travel as much as I can although long flights
really bother me now.
johnm -- I have two AFO's (Ankle Foot Orthotics) that keep me from
breaking anything if I fall so I want to keep walking a little as long as
I can. I ride the wheelchair when I take off the AFO's.
bsofree -- Johnm, what exactly is AFO and how does it keep one from
breaking one's ankle. I broke my toe before X'mas and I am still wearing
the funny shoe.
johnm -- bsofree, it is a formed plastic thing that attaches to the leg
with a hinge at the ankle and a foot pad that goes to the end of the toes.
I broke my foot too and ended up in a wheelchair for three months.
murf -- Terry - where did the cruise leave from?
terryw -- Murf it was Ft. Lauderdale
murf -- That was a long flight from LA.
johnm -- Terry, sorry we couldn't get to meet you when you were in
terryw -- I wish we could have met also john.
bsofree -- {welcome bsofree}
bsofree -- {welcome bsofree}
bsofree -- sorry, got kicked out
butch -- Terry, has any more been done to get the transcripts of the chat
to read top to bottom instead of bottom to top?
terryw -- I do not think the MDA will change that butch, sorry
terryw -- Johnm does a great job of straightening out the chats for us
terryw -- we are all waiting for someone to type LOL
murf -- I'm missing John's weekly joke.
butch -- John c. has been dealing with 2 foot of snow when traveling and
at home. He is part Eskimo.
murf -- John-c is part Eskimo this week, he sent pictures of the dumping
they got last week WOW!
terryw -- I am glad I am not in all that snow
murf -- I don't know how they can do it.
chuck -- John C. has a beautiful place and a lovely setting but he surely
has a lot of digging out to do.
murf -- I would need studs on my shoes LOL
terryw -- I could not imagine trying to keep my balance on Ice or snow.
murf -- David, my brother, ends up sitting in it lots.
chuck -- Terry, you are correct about your balance on ice or snow. Charlie
has been house bound for over a week....
johnm -- There is NO way I could handle even a light snowfall.
murf -- That's why I like living in Texas
terryw -- It seems like if there is anything on the ground even the
smallest of items and my foot hits it throws my balance off and I
almost fall,
johnm -- Terry, for me you leave out the ALMOST FALL in that losing
butch -- As you all know, it is only about two and a half feet to the
ground. (if you just sit) Falling is easy. Getting up is the hard part.
murf -- I often almost trip over air bubbles too! LOL
johnm -- Terry, looks like you are not TALKING to your computer again. Was
there a problem with your Naturally Speaking?
terryw -- Johnm I have to used that in a long time. My PC has blown up 2
times and I have to rebuild it. Never re-installed it
terryw -- not
terryw -- Well it looks like chat is going to close soon so if anyone has
any closing statements.
murf -- I'll contact John-c and get back to you
butch -- Stay healthy and strong until next chat. Hope everyone is doing
well. So long for now.
chuck -- Thanks for sharing your cruise experience with all of us Terry.
Bye for two weeks. Charlie just got Natural Speaking and is still
practicing and training.
terryw -- I need to cut out now so I have to say goodbye.
chuck -- {goodbye chuck}
murf -- Take care all
butch -- {goodbye butch}
terryw -- {goodbye terryw}
murf -- {goodbye murf}
johnm -- {goodbye johnm}