Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"You are not alone in your quest for a treatment and cure!"

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 - August 23, Open Forum

Kennedy's Disease Chat Transcript 08-23-2003

Topic: Open Forum

Host: Terry Waite

Chat Participants:

terryw
murf
butch
johnm
bruce

BEGIN CHAT

terryw -- hi murf.
murf -- Good morning
murf -- just the two of us?
terryw -- Hey Murf check out this link. Hope for us
http://story.news.yahoo.com/news?tmpl=story&u=/afp/japan_robot_technology
terryw -- I would buy one in a minute
terryw -- chick on the picture to make it larger, They plan to cut the
weight way down and size.
butch -- {welcome butch}
terryw -- Hi Butch
murf -- cool
terryw --
http://story.news.yahoo.com/news?tmpl=story&u=/afp/japan_robot_technology
terryw -- Thats exactly what we need to help us.
butch -- Good morning Terry and Murf. Hope you are having a great day so
far. How are you both doing helth wise
butch -- health
terryw -- Butch I fell a couple of weeks ago and ripped up my leg on rocks
and fractured a rib.
terryw -- I am recovering though.
butch -- Terry--you had better start recognizing and listening to your
limitations.
terryw -- I was working in the yard on an incline and I went to step back
over a 5" rock to get back on the gravel drive and my right leg gave out
abd beckled and I fell over sideways on my side & back.
terryw -- and buckled
murf -- I've lost 15lbs and now can walk a little better
murf -- I still get spots of depression though, can't wait for NOLA
butch -- It is so hard to give in to our limitations. Sure would be nice
to have our health we had 15 yrs ago wouldn't it?
murf -- It would be nice!
terryw -- I was telling murf that I live by the song by REO speedwagon "
Keep pushin" thats my motto song
murf -- That's all we can do I guess.
butch -- Each of these episodes which we end up falling, is so minor, a
situation, it is hard to believe we fall so easily.
terryw -- Here are some of the lyrics to the song "Keep pushin, keep
pushin, well even if you think your strength is gone Keep pushin on"
butch -- I also use the song, "I will survive".
butch -- Lets face it--we are survivors, and we will help these doctors
and researchers to find the cure to help all of us.
terryw -- So whats everyone doing this weekend?
johnm -- {welcome johnm}
terryw -- hi johnm
murf -- Hi Johnm
terryw -- Everyday is a new day of possibilities.
butch -- Hi John. Good to see you again. How is your health?
johnm -- I just got done with my annual physical and seeing my neurologist
and my health is almost perfect. If only I could walk and get around like
when I was 30.
butch -- I talked to a man who has Parkinsons disease. His main problem is
not so much the disease, but dealing with the mental strain of having the
disease.
terryw -- yes butch,
murf -- I agree, depression is a real concern for us.
terryw -- true murf.
terryw -- Everyone gets depressed. Its just a matter of finding something
to snap you out of it to get you over the hurdle.
johnm -- I just feel that there are SOOOOOOO many more afflictions out
there that are worse than ours we can be thankful that we don't have them.
terryw -- yes johm, I look at it the same way
johnm -- Hi all by the way.
butch -- We are truly lucky to have this chat and can share our trials and
tribulations.
murf -- That's why the conferences are so important.
terryw -- john check out the link I posted in the chat at the beginning.

murf -- We still have the gray matter, I think.
murf -- LOL
butch -- Most of my grey matter is on my head NOT in my head.
murf -- Thanks for listening last night Terry.
terryw -- No problem Murf. that's what we are here for.
terryw -- I use helping others in support chat rooms for depression &
other diseases. It helps me feel good.
murf -- It doesn't happen often but I fall into it once in a while.
terryw -- It may be hard but we all need to focus on what we can still do
and not on what we can't. WHat we can't do is in the past and we can't
change that at the present time so we need to keep focused on the things
that we can still do.
butch -- Has anyone heard from Patrick? have not heard from him in quite
awhile. Is he OK?
terryw -- I heard from Patrick a few weeks ago and he is doing well.
murf -- Good!
terryw -- It's OK to get mad at this disease and let off steam and Yell
sometimes at the walls. It's a release and we need that. But then we have
to get back on track and keep pushin on.
johnm -- Terry, that's an awful big backpack. I think I'll stick with my
scooter.
terryw -- John they plan to cut the size way down.
terryw -- and weight
terryw -- Its a prototype
murf -- Technology should bring the size and weight down in a few years.
johnm -- I'm toying with the idea of extending my AFO's over my knees to
keep my knees from giving out and falling. I went down in the garage the
other day and had to crawl to the bed to get back up.
terryw -- AFO's?
johnm -- Terry, Ankle Foot Orthotic.
johnm -- They do keep me from breaking anything in my feet if I do happen
to fall.
butch -- Murf--How is Karol? Terry--has Susanne settled in to her new job,
new house, new surroudings?
terryw -- Yes Butch, things are getting better here. Still swamped with so
much to do. We will get there.
murf -- She's OK, she has her own health problems. We're a sick family.
LOL
terryw -- I am going to have to leave in about 15 mins. So yo will all
have to go on without me.
murf -- We're selling the ACURA today, so she's a little depressed too.
butch -- You got to be sick to put up with us guys. Thanks Murf, for all
your hard work on the organizing of the conference. THANKS!!!!
terryw -- yes thanks Murf, the conference is a lot of work.
murf -- I've had lots of help. John-c has done most of the foot work.
johnm -- Boy, Butch, you got that right. We do require a lot of TENDER
LOVING CARE.
bruce -- {welcome bruce}
terryw -- Hi Bruce
bruce -- Good Morning, everyone. Sory I am late. It was one of those
mornings.
murf -- Hi bruce
butch -- Bruce--Just another one of thoes mornings. They tend to be coming
closer together lately
bruce -- You know it. Seven days is not long enough between weeks. I
thought things would slow down since I retired. Boy was I wrong. They
speeded up.
murf -- Is it the grand kids? LOL
murf -- We don't see them enough.
johnm -- Bruce, things will settle down once you get into the retirement
ROUTINE.
murf -- Bruce - check out this link Terry found
http://story.news.yahoo.com/news?tmpl=story&u=/afp/japan_robot_technology
johnm -- Good Morning Bruce.
bruce -- Murf - where do I sign up for one of those things. It sounds like
just what I need.
terryw -- Seems like things around here are breaking daily and I am trying
to keep on top of the fixes but its hard when its just you. I do get
friends and neighbors to help when I can which helps.
terryw -- SO many things to fix, so little cash. LOL
butch -- I hate not wanting to go to some of the places Mary Lou, my wife,
wants to go. She doesn't understand just how hard it is to walk on grass
and uneven ground. I hate being unsure of my steps.
murf -- That's why I got the chair I did. It lets me go on the grass etc.
terryw -- I have the same problem butch but I still try to take my
electric chair to its limits on the terrain.
bruce -- Butch, you have been talking about a scooter for some time.
Perhaps now is the time. I walk everywhere I can, but if I think I am
going to get tired out or unsure of my footing, I jump on the scooter. It
is great to take to ball games, site seeing, etc.
murf -- Terry - do you still plan on geting that 4 x 4 chair?
terryw -- You can get lots of places with the right equipment.
terryw -- Its a possibility Murf but its very exspensive. maybe by the
time my chair breaks down the price on the 4X4 will have dropped.
bruce -- I am looking at buying a golf cart (after talking with JohnC and
others) for buzzing around the property and the neighborhood. Another toy.
johnm -- I'm not doing much walking at all any more. It just isn't worth
it to take the chance of falling and not being able to get up.
butch -- I did get the Jet 3 by Pride. it is mostly an inside chair. I am
trying not to use it until I have to.
terryw -- I like those little John Deer carts with the dump bed built in
for hauling thngs around
murf -- The MDA can help with costs (what insurance will not cover)
terryw -- Butch don't wait start now and get out and do things.
bruce -- I would agree with Terry. With this health issue, do it now while
you can still enjoy it. ALso, many places have scooter that you can rent
(for a nominal fee).
murf -- I started using my chair at work almost a year ago.
murf -- It's a big joke at work getting out of my way. LOL
johnm -- A scooter also helps get you to the front of the line and any of
the Theme Parks. The only problem is getting off of the rides.
murf -- We do get some extras don't we?
murf -- I can still walk but it's much easier to get around in the chair
at work.
terryw -- the chair made my quality of life way better
terryw -- plus people get out of my way. LOL
terryw -- I seem to get better/nicer service when I go places in my chair.
Strange huh?
johnm -- Terry, that sounds like GOOD profiling.
butch -- Terry--Did you happen to get in touch with anyone about the MDA
telethon? Sure would be nice to educate millions of people about the KDA.
terryw -- No Butch, Not sure how to approach them on this. It's a touchy
subject to the MDA.
butch -- I know that we are different organizations but with the common
goal of finding a cure for neuro muscular diseases.
butch -- Hey Murf--You said a big joke about getting out of your way at
work. What is this WORK. LOL.
murf -- I guess I'm still lucky to work. You're luckier!!LOL
bruce -- Murf, you are fortunate to still be able to work. Retirement is
also another benefit for those that have worked.
murf -- My work is taking me to Abu Dhabi in October. I'm not looking
forward to the travel, I can't take the chair.
butch -- Where is Abu Dhabi?
murf -- butch - United Arib Emerates in the Middle East.
murf -- I'll be staying in the hotel, no traveling outside.
butch -- Hey Murf--Can I take out an insurance policy on you with me being
the beneficiary?
murf -- LOL
butch -- I hope you know this is only a joke. Stay safe.
murf -- butch - Karol would object. LOL
johnm -- I have pretty much cut out any travel that won't let me drive and
take my scooter.
terryw -- I have to get going. have to meet some people in town. see you
all later.
murf -- Bye Terry and Thanks!!Take care
butch -- So long Terry--stay healthy.
johnm -- BYE Terry
bruce -- Ref. KD, I am assuming that everyone plateaus out for a period of
time and then has a 'slide' (a period of time where you get weaker) and
then plateau out again. Does that sound similar to your experiences?
murf -- Bruce- That happens to me, the more weighgt I loose the better I
feel then I try to do things I shouldn't.
johnm -- I have gained too much weight. I'd like to lose about 20 lbs. I'm
just tooooo sedentary and don't do enough exercising.
murf -- I'm on the Dr. Atkins plan and it seems to work.
murf -- I feel stronger the lighter I get.
murf -- The legs don't have to carry the extra wieght.
bruce -- Murf, I agree that weight plays a major role in our daily lives -
capabilities. Even five pounds makes a huge difference.
murf -- It's hard to believe but it does.
murf -- I'm trying to loose another 10-15 lbs. Then I should be at my
ideal wieght.
butch -- Murf did you try John Coakley's SOUP diet?
murf -- No but it looks like it will work.
bruce -- The reason I am asking is because for the last several weeks, I
am in another one of those slides. I never quite know when I will bottom
out (and then plateau again).
butch -- Bruce, Some days are better than others. Sometimes overdoing one
day can cause several days of discomfort.
murf -- Sometimes I just have to lay on the couch for a day or two.
johnm -- Murf, I can't even do that as I couldn't get up from the couch.
butch -- I still think that stress governs what kind of day we have.
Control the stress and you control your health.
bruce -- Right Butch, but this is different then the over-do days. This is
a everything is fine for months and then without rhyme or reason, the
'slide' comes along and I now can not do what I could do just weeks
earlier. This becomes my new 'strength level'.
butch -- Bruce, You amazed me when I first met you at the conference. You
have such great posture and carry yourself well. I can't think of you not
being able to do the things you normally did. Your exercises surely must
help.
bruce -- I still exercise every morning and evening. WHen I talk about a
slide, it is a gradual - minor - but still decline of capabilities.
Nothing major, but still irritating.
bruce -- Well, guys, I have to run (or walk anyway). We have some shopping
to do. Take care of yourselfs. Health and happiness to your and yours.
Until next time ...
bruce -- {goodbye bruce}
murf -- bye Bruce Take care
butch -- I think a slide--is better than a rapid FALL. Hang in there.
johnm -- Looks like things are winding down so I'll visit with you all
again next time.
murf -- I agree the chair will help.
murf -- bye johnm take care till next time.
murf -- I've got to run :-) too. Bye all.
murf -- {goodbye murf}
butch -- I still can't believe with all thoes guys who were at the
conference, don't choose to join us in the chats. They are surely missing
out on good and helpful info. Sop long John M. So long Murf.
johnm -- {goodbye johnm}
butch -- Since sthis only a party of one, I'll be signing off. Stay
healthy.
butch -- {goodbye butch}

END CHAT