Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Every day parents-to-be wonder whether their child will be 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 - June 28, Medical Aids for the Home

Kennedy's Disease Chat Transcript 06-28-2003

Topic: Medical Aids for the Home

Host: Bruce Gaughran

Chat Participants:

bruce
butch
johnm

BEGIN CHAT

bruce -- Good Morning! It was getting lonely watching a blank screen. I
was ready to begin chatting with myself!
butch -- Good morning Bruce. Hope you are doing well. It is beautifyl here
in sunny Penna. Just a beautiful day. How are you?
bruce -- Doing well, thanks. It is a nice day down here also. Are you
enjoying retirement?
butch -- Please don't chat with yourself. Someone besides me might think
you are crazy. Retirement is great. How are you adapting to it and do you
wish to return to the workforce?
bruce -- No, I have no desire to return to work. In fact, I am busier than
ever - I am just doing what I want to do when I want to do it. I still
keep in contact with my friends at work, but that is the extent of it.
bruce -- How about you, do you miss working (or just miss the people you
worked with)?
butch -- Miss the people. Also miss the challenge of each day. Soooo--we
will just have to volunteer our services to KDA and other services to man.
bruce -- By the way, did you apply for Social Security Disability
Benefits? I am in the process of doing that right now.
butch -- I am still in the process. They say the more info you can give
them the easier it is to be accepted.
bruce -- I understand about the 'more info' part of the process. I give
them everything and they come back with another form and ask for more or
ask for it spelled out in a different format. I am also in the process of
applying for LTD through UNUM. That is even more interesting.
butch -- What is LTD thru UNUM?
bruce -- Long Term Disability - it was an insurance provided by my company
thru UNUM Insurance. It provides 2/3rds of my income until I am 65 if I
qualify.
bruce -- That is 2/3rds up to a 'max' limit.
butch -- Bruce--What is today's topic? I didn't see if it is on any
particular subject.
bruce -- The topic today (if anyone shows up besides you and me) is AIDS
FOR THE HOME.
bruce -- Have you heard anything from Terry and Sussanne since they moved?
I know how tough it is to move, and I know they must be excited, but also
tired.
johnm -- {welcome johnm}
bruce -- Welcome John
bruce -- There is more than standing room for this morning's chat.
butch -- I have a pool which I think you knew. I do running exercises in
the pool which provide exercise with very low impact. Also it is very
relaxing.
bruce -- Do you have any trouble getting out of the pool when you are
done?
butch -- No Bruce. I have steps as well as a ladder, so it is challenging
but fairly easy.
bruce -- Good for you. As you know I am a strong believer in daily
exercise to stay limber and stimulate the muscles.
johnm -- Here in Sun City Center we have all kinds of pools with lifts and
ramps but I always seem to find some kind of excuse not to use any of
them.
butch -- Hi John. How is Sun City treating you?
johnm -- We just went through a solid WEEK of rain and were really glad to
see the sun come out again.
bruce -- Isn't that unusual, John? WHen we lived in Florida it never
seemed to rain an entire day - mostly just a one or two hour rainfall.
butch -- John--I know just how you feel. We had enough rainfall in PA that
some of the farmers had a hard time getting their fields ready for crops.
johnm -- Bruce, it is very unusual. We are now getting the normal, shower
in late afternoon.
bruce -- Well, do you think we should move ahead with today's topic ... or
just chat a little while longer to see if anyone else will join us? I look
forward to your thoughts on this.
johnm -- We may as well go ahead. The attendance at the chats have not
been real good.
bruce -- Okay, today's topic is AIDS FOR THE HOME.
butch -- Aids for the home. My biggest and best aid is Mary Lou. She
manages to do whatever I can't do. I would hope everyone has their Mary
Lou in their life.
johnm -- Pauline is really my BEST aid for the home also. It would really
be tough getting along without her.
bruce -- Yes, I know what you mean. Cindy has had to take on most of the
burdens of maintenance and 'listen' to her supervisor (which is even
worse).
butch -- Bruce--What do you think is the reason for low participation in
our chats? I really enjoy the chats and I learn something every chat just
to make my life a little easier.
bruce -- When we moved into our new home in Georgia this January, we had a
contractor come out who specializes in handicapped accessible homes. He
was great and came up with many ideas to help out.
bruce -- For instance, he installed grab bars in the bathroom to help me
get up from the 'john' and step out of the shower. Inexpensive, but
priceless for me every day.
bruce -- Another nice feature of our new house is that the door knobs are
the kind you push down to open. You do not need to twist them. This isn't
an issue now, but sometime in the future it could be.
johnm -- I have all the MECHANICAL AIDS also. I have the Up-Lift Seat
Assist for getting me out of my desk chair and wheelchair. Bar stool for
sitting at the dinner table. Riser on the toilet so I can get up once I
sit down. Ramp leading to the garage.
bruce -- Cindy also bought a anti-slip shower mat and anti-skid rugs for
the hardwood floors.
bruce -- John, I have almost all of the same things. They have made life
much easier each day and took some of the strain off of my arms and legs.
The ramp is the greatest blessing for me. I can now work in the garage
once again without having to strain going in or out.
johnm -- Pauline won't let me shower since I fell and broke my foot and
ended up in a wheelchair for 3 months.
bruce -- The up-lift seas assist is something that I have recommended to
many people. I like the fact that it is portable. I take it when we visit
friends. The 'tallette' is something else I take with me. At first I was
embarrassed, but now it goes everywhere just in case.
johnm -- We have a satchel for my toilet riser. When we travel it goes
with us. I can't even get up from a handicap toilet.
bruce -- Yes, I have even been to a couple of restaurents that do not have
a handicap stall - just the same low toilette and a grab bar. That is
almost worthless. I also hate those slippery tile floors that my tennis
shoes cannot get a good grip on.
butch -- Anti-skid mats for rugs at any area where I have to step up makes
me feel more secure. Also I installed a small hand bar at doorways with a
step. Makes the step alot easier and they are not too noticeable.
johnm -- I feel that life would be almost impossible without the aids.
bruce -- Ref. shower, the contractor I mentioned earlier built a little
portable step for me to help me access the shower easier. Between that and
the grab bar, I am in hog heaven.
butch -- I still thinkm one of the greatest aids I have is the KDA
chatroom. I enjoy the exchange of ideas and sometimes sharing the pains of
daily living.
bruce -- I also recently purchased a "lift' chair. I wasn't sure I wanted
one, but now that I have one - WOW - is it great to have around. Someone
also mentioned barstools. They are also great and just the perfect height.
johnm -- I forgot about my LIFT chair. My only problem with that is that
it is too slow. I get antsy waiting for it to lift me up.
bruce -- TOO SLOW! That is my complain also. CIndy says it is my lack of
patience (and she is right).
bruce -- I always thought the 'lift' chair should have a JET ASSIST to
launch me upwards. LOL
butch -- Too slow is better than not being able to get up.
butch -- I hope Terry and Susanne got their move completed. I know that
moving their personal belongings and the KDA office must have been a task.
bruce -- There new home has a beautiful setting. Having one floor also
helps. When I stopped having to go upstairs to our bedroom, life became
much easier.
johnm -- I don't even plan anything in the morning until after I do my
"THING".
johnm -- Just a little off the subject but do either of you have trouble
with regularity of the "THING"?
bruce -- Da THING! Only at times. I do not consider it an issue in my
life.
butch -- I think iregularity is simply not eating enough to keep "the
system" working properly. I don't suggest over-eating but, still eating
well.
johnm -- I eat well but still worry about having to go someplace that
isn't made for me.
bruce -- John, your last comment is definitely a concern for most of us.
Not knowing if the restroom is accessible is always a concern.
bruce -- Ref. DA THING - the secret word is FIBER (and plenty of it). :-)
butch -- Are you guys selective when choosing where you go. I try to plan
going places that are fairly easy for me. I don't wnat to be played out
just getting to the place.
johnm -- I use my scooter for going anyplace. I have found most places
very accessable.
butch -- I still didn't get a scooter. I guess for more mobility at
joining in or being able to go places which require alot of walking, I had
better do some seriour thinking.
bruce -- The MDA can help for scooters. They will even let you try one
(all you need is the batteries) to see how you like it. I love my scooter.
We went to the aquarium this month and I could not have made it the four
hours without it. As it was, everyone else was tired and I was refreshed.
johnm -- I've been tempted to get a little foot trailer for my wife stand
on when we go anyplace requiring a lot of walking.
bruce -- Butch, I am also pretty selective (savy) usually. I occasionally
blow it, but as a hole I know how to pace myself and what to attempt (or
pass on). I am also not afraid to ask (call ahead if need be) to see if
they have special arrangements for handicapped people.
bruce -- I recently purchased a work bench that is the perfect height to
stand and work. I then bought a higher than normal stool that fits the
workbench. I can now go out to the garage and putz around for hours
without getting too tired.
johnm -- Bruce, it's too HOT here in Florida to PUTZ in the garage.
bruce -- John, remember - I lived in Florida. It is only too hot 3-4
months out of the year. The rest of the time it is beautiful.
bruce -- Seriously, being able to putz once again without getting tired
has been great for my mental health. I build bird houses, built and
installed shelves for a closet, etc. Self-worth!
johnm -- I can handle the HOT weather a LOT better than the COLD.
johnm -- I also have two AFOs (Ankle Foot Orthotics). I walk around the
house following my wheelchair when I have them on but when I take them off
I RIDE in the wheelchair.
butch -- Back to the attendence problem with our chats. How can we
stimulate more interest? Is it the topics? I know there is alot of typing
to say what we have to when getting a point across. I ALWAYS see my
mistakes in typing JUST as I push the send button. Most times you guys see
thru my mistakes.
bruce -- YES - ATTENDANCE! Do you think it is just the summrtime or is it
more serious than that?
johnm -- I'm afraid that some people just don't like chats.
bruce -- It seems to me that we were getting 10-20 participants last fall
and early winter. I am not certain whether we have burned people out or,
as you said, the topics are just not stimulating enough to grab people's
interests.
bruce -- Perhaps we need more 'invited experts' to speak on specific
topics of interest????
johnm -- I'm not sure we could get the "EXPERTS" to take the time.
bruce -- So what are we saying about attendance? We need better topics or
do we need to send out an email to members asking for their input on how
to improve the chat room service?
johnm -- Maybe it is just because we are all retire and too busy doing the
things we like to do while we can do them.
bruce -- I think you must admit that three attendees is pretty poor. I
cannot remember when we only had three. Maybe it is because Terry did not
send out a reminder this week (because he is moving). If I had the
distribution list I could have done that. I just don't know.
johnm -- I know one person that doesn't like the layout of this chat. He
thinks it should read from top to bottom and scroll down like it does.
butch -- Sorry for the typing mistakes.---Retired or not--the chat room is
a valuable tool and should be used to the best end result. I wonder if
when there alot of us on chat, that some folks spend more time reading
than typing their thoughts.
bruce -- I am just brainstorming now: Are the chats 'too' often in the
summer? Should they only be once a month.
johnm -- Bruce, I really don't have any idea what the trouble may be.
butch -- Like the Marines say. Give me a few good men. Thats what we have
here today. The ones who didn't show missed out.
bruce -- I'll sent an email to Terry afterwards. Perhaps it is time to ask
members what would make these chatrooms better or create greater value.
butch -- I dond't think the chats are too often. But, like you said, not
getting a chat reminder may have let some folks sleep in or go about their
chores./
johnm -- I have the reminder on my calendar in the computer that I see
every day.
bruce -- Me too, John. That helps a lot.
butch -- Personally I don't need a reminder abo0ut our chats. Every other
week is the chat. If you can make it, great! If not-see you next chat.
bruce -- Do you think there are other subject - perhaps outside the world
of KD - tha people might find interesting? PCs, sports, etc.
bruce -- I must be getting tired - I made two mistakes on that last
question.
butch -- I'm finding out that my typing was much better when I was working
every day at a keyboard. I guess I am getting lazy. My handwriting is not
quite as good either. Seem to have more "shakes" than I used to.
johnm -- I can't even read my handwriting any more. I do all my things on
the computer. I even have a little progam that brings up little Post-It
notes for me to type into.
johnm -- I have my computer to keep me mentally stable.
bruce -- Another AID, in my opinion, is the PC. I am on it every day. It
continues to stimulate me and keep me in touch with friends and family.
johnm -- Bruce, I agree with you about the computer. It has been a real
help to me. We have a 2000 member computer club here in Sun City Center
that I am VERY active in. We have open labs and I make housecalls to help
people.
butch -- John--My computer drives me crazy. I guess I just know enough to
get me thru some of the computer problems I seem to have. I don't think it
is summertime attendance because of previous years records over the
summertime.
bruce -- DO you make house-calls in northern Georgia? [Just kidding] I
have been very fortunate with my PC. I am not a novice, but far from an
expert. I seem to get by with most everything I do. I recently bought and
installed a photo scanner that I really like using.
butch -- I can'dst wait to go to NIH again. It makes me feel good to be
part of the research team. They sure taker an interest in us as an
individual. Makes you feel someone really cares.
bruce -- Butch, don't worry about the typing. We all make them and we all
seem to still understand the intent. I do not think they reflect
negatively on anyone. It is part of life - especially when you engage
fingers before the brain.
johnm -- That's like the "Senile Virus" that some of us pick up. We see
our mistakes AFTER we hit the SEND key.
bruce -- John, if you don't mind me asking. How long have you been
retired? At what age did you retire?
johnm -- I have been retired since 1992. I was 57.
butch -- I still think that AIDS for KD'ers is a great topic. We all have
different needs, yet many things we use as aids for daily living are
pretty much the same
bruce -- Personally, I find it interesting that we were able to chat for
over an hour on a variety of subjects. It is just like talking on the
phone.
johnm -- It's a lot cheaper than a conference call also
bruce -- Ref. AIDS - there are also all the little things that help, i.e.,
the flat rubber grip that I use in the kitchen to help open stuck jars.
johnm -- Your right Bruce. A lot of the things we take for granted are
really AIDS.
bruce -- Well, we have less than 10 minutes left.
butch -- I still love you all sharing your life stories but, sometimes I
see where I will be going just by your progression within the disease. I'm
glad--Yet sad.
bruce -- Good point. It is wonderful to hear our stories. We can all learn
from one another. The great thing is that most everyone is willing to
share. How wonderful!
johnm -- When I look around Sun City Center and see a LOT of people that
are worse off than me I consider myself lucky.
bruce -- John, I do the same thing and when someone feels sorry for me I
tell them how blessed I am that I do not have cancer, etc. A slow,
progressive disorder is a much better alternative in my book.
bruce -- John, what operating system are you running?
johnm -- I'm using XP most of the time but I also have ME installed in
case I have a call from someone without XP.
johnm -- Our Lab computers also have ME and XP.
bruce -- I like XP. It is very stable. I went from W98 to XP and found it
to be a great improvement.
butch -- John and Bruce--It has been great talking with you today. I hope
you stay healthy till next chat. Bruce-- you have done a great job as
moderator today. Thanks. Always be thankful of what you can do. Don't
dwell on what you can't do.
bruce -- Take care, Butch. Thanks for attending today.
bruce -- Health and Happiness to you two - now and forever.
johnm -- Thanks for the chat. It is always great to talk.
butch -- Good bye till next chat.
butch -- {goodbye butch}
johnm -- Bye.
johnm -- {goodbye johnm}
bruce -- John, thanks for joining us today. I hope we can chat again soon.
Take care guy.
bruce -- {goodbye bruce}

END CHAT