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 - July 26, Tips for Moving/Relocating

Kennedy's Disease Chat Transcript 07-26-2003

Topic: Tips for Moving/Relocating

Host: Terry Waite

Chat Participants:

terryw
pa-paul
murf
vic
butch
johni
bruce
billeric

BEGIN CHAT

terryw -- Hello vic.
murf -- {welcome murf}
terryw -- Hi Murray.
murf -- Hi Terry Hi vic
vic -- Hi - This is first chat I'm joining.
billeric -- {welcome billeric}
murf -- Vic - where are you from?
terryw -- Vic, do you have Kennedy's Disease or just Visiting?
vic -- My husband was just diagnosed in February. We're from New Jersey.
terryw -- Hi Bill
billeric -- Morning guys from the mosquito capital.
terryw -- Hi Bill, It's almost tarantula season here.
terryw -- in 2 months
murf -- morning bill
terryw -- Vic, are you signed up on the KDA web site with us for the
mailing list?
vic -- Yes, I'm signed up at the web site for the mailing list. I'm
finding it helpfull.
terryw -- Glad to hear it Vic.
murf -- vic - there is lots of support in this oganization
billeric -- Very timely topic, Terry. We need to make a permanent move.
This 6 months in Mn. and 6 mos. in Az. is getting to be a bit much.
terryw -- Yes Bill, I just went through it and Murray has just moved
recently also so we should be able to give some guidance.
bruce -- {welcome bruce}
bruce -- Good Morning, All
vic -- {welcome vic}
murf -- vic-we have a few people in your area
billeric -- Mornin' Bruce
murf -- morning bruce
terryw -- Hi Bruce
bruce -- Billeric - where do you live in MN?
billeric -- Alexandria, Bruce
bruce -- I am from Austin and still have family there, and in St. Paul,
Minneapolis, and Shokapee.
billeric -- Bruce. I haven't accessed the total mailing list for some
time. Didn't realize you were from Mn.
bruce -- From, is the accurate word. We now live in Georgia.
murf -- vic-do you know that we have a conference coming up in November?
vic -- No - where is it going to be held?
murf -- vic - in New Orleans LA we refer to it as NOLA here
murf -- vic-it's all on the website, these conferences are very good for
feeling better about our condition
vic -- Murf - Ok, I'll check it the information. How was the attendance at
the prior conferences?
murf -- vic-we expect about 50 of us affected. last year we had about the
same
murf -- vic -= we also have doctors and researches which you could have
private consultations with
vic -- murf - thanks, that's good to know.
terryw -- Bill, First bit of advise is to take all the help you can in
getting prepared for the move and especially afterwards to unpack & prep
the new house. It's very hard on us with KD.
terryw -- We have had to do many repairs on the new house and it has been
pretty hard on me. My wifes family has helped out a lot with getting us
moved and her father is up here this week helping me do lots of the
repairs because I cannot do them myself.
terryw -- lots of small stuff
butch -- {welcome butch}
johni -- {welcome johni}
bruce -- Welcom Butch and Jonhi
johni -- Hi everyone from dulland rainy England
terryw -- I find it very hard to even lift my cordless drill these days
and I need to buy a new lightweight model that I can work with now.
murf -- hi johni
terryw -- My pld Dewalt is very heavy.
terryw -- old
terryw -- Hi Johni.
bruce -- Terry, I have the same problem with my circular saw. I am looking
at a table saw or miter saw to make life easier.
billeric -- I know what you mean Terry. I have to rest after doing even
the smallest chore. Maddening, but what can we do?
johni -- We moved to a single storey in 1989, because I could no longer
manage in our house. We ain't moving from here!!
terryw -- I recommend if you can afford it to hire movers to pack you up
and move you and you only pack your most fragile & valued posessions.
Always buy insurance and check out the movers to make sure they have good
references and that claims get paid quicly if anything happens.
bruce -- Terry, your comment about accepting all the help is important.
You cannot leave it all to your spouse. I found it especially difficult
because of the reaching, crouching down, etc. It takes a toll on the
muscles that we do not normally use.
terryw -- Its hard to find a good moving company. everyone has stories of
things broken or damaged but its very hard to find movers that really care
about your stuff.
murf -- Yes!! check out the movers. the big one will cost but clams are
earier
butch -- Good morning--Good to see so many on the chat this early. Hope
this is a sign of better interest in the topics for the chats.
terryw -- Bruce, Black & Decker has a new drill that is about half the
weight of normal cordless drills and the same power for about $69
johni -- We had the best Removal Company - our family! They were
efficient, had great respect for our things, and were very cheap!
bruce -- Thanks, we have a B&D outlet store about 20 minutes away. I want
to go back down there soon for a few other things.
billeric -- Bruce, your right on. The spouses sure get hit with twice the
load when we are in this condition.
terryw -- Bruce, I had real problems with my neck during the unpacking
phase after the move. I got to the point that I could no longer lift my
head from a looking down position to the raised position because I was
doing that so many times repeditivley that I overused the neck muscles. It
was terrible but I recovered abfter about 3 days.
bruce -- Ref. moving day and arrival day, have a chair set up (out of the
way) right away. I did not do this when we moved and I was on my feet far
too long. It caused me problems for weeks afterwards.
terryw -- aLooking in boxes
terryw -- Yes Bruce, I was on my feet to long also but its hard to stay in
the chair on moving day.
terryw -- You have to force yourself to rest.
bruce -- Yes, the look down, reach, and stand up process takes it toll.
johni -- I took the role of supervisor on our move. I left all the
labouring to the fit younger men.
billeric -- I guess all of us need that periodic rest after we do even a
minor chore.
terryw -- Thats the way to do it John.
murf -- I actually go up a ladder to change a furnice filter the other day
and my legs were toast for 4 days.
murf -- I won't be going up any more ladders!
billeric -- I have about given up on ladders Murf.
murf -- bill-me too but it had to be done
billeric -- I broke an ankle last March from a fall off a 6 inch garage
lip. It still gives me some problems. I use my cane religously now.
bruce -- I think my over-doing it during the moving out and in process
reflected on my ego - wanting to be helpful. Dumb!
vic -- Is that what effects you the most, the repeated motions?
murf -- vic - anything that requires muscles
terryw -- Yes Vic, repeated or overuse.
vic -- Well, that makes sense. We went to England last October and did a
lot of walking. By the time the trip was over - he could barely walk.
That's when it was decided it was time to see a doctor.
murf -- vic - that sound familiar
terryw -- My hands and arms are pretty much shot after this week of
repairs, I am suprised that my fingers are working well this morning, they
wer not last night. I guess the sleep helped them regenerate.
terryw -- You need to rest and let the muscles recharge so you can go
again. Its like a Nicad battery.
murf -- very unsafe now
bruce -- On a different subject, there was a couple of interesting
articles on KD in the most recent issue of Quest. Did anyone read the one
on "When Cells Kill Themselves"?
johni -- So Terry, how are you settling in to the new place?
terryw -- Johni, we are almost there. It's been a month of non-stop
unpacking & fixes on the house and we have not had hardly any time to work
on the KDA. Susanne also started her new job and has been trying to juggle
the new job, unpacking, and the KDA all at once.
terryw -- I also got to the poing during the move of where my Abdomen &
lower back muscles got so tired it felt like I could not hold up my upper
half. THis was caused by to much walking and bending at the waist. This
also went away with rest. I pushed myself to hard.
murf -- terry - you obviously did too much!
butch -- On one of the chats we talked about getting together in small
groups just to meet and talk. John Coskley and his wife Mary, Chas Rennels
and his wife Anna Lea, and their best friend Pete, and myself met in
MRecommend it to anyone closearyland to have lunch and conversation. It
was really a great time.
butch -- Sorry--should say met in Maryland. Don't know how it came out the
way it did.
bruce -- Don, John and I are brainstorming 'regional' get-togethers and
plan to come back to the chat group for some additional thoughts on the
subject. We think it would be fun and educational.
johni -- We recently met up with another KDer and his wife. It was really
good to share. We are going to keep in touch.
murf -- butch - vic -=you are very near each other
vic -- We're in northern New Jersey.
butch -- Vic--I am in Lancaster, PA.
terryw -- Things are finally slowing up on the house and now we can begin
to focus more. I have fallen way behind on posting the past chats that I
plan to catch up on this week.
billeric -- Terry, I know all of us understand the pressures you and
Susanne are under. Whatever you do is appreciated.
murf -- bill - here here
terryw -- Thank you to the conference commitee for doing the conference
planning for this years conference me and Susanne did not have the time
this year.
murf -- terry - john-c needs the biggest thanks for this
butch -- Sometimes we get off the topic of the day. I always learn
something from every chat.
terryw -- I had to be rushed to the emergency room this past Sunday
morning at 1:30 AM. I felt like I was going to die. I was in Emergency for
6 Hrs. I passed 3 Kidney Stones.
terryw -- They say I still have more in me.
terryw -- It was the most painful thing I have ever experienced.
billeric -- We can feel the pain from here, Terry
terryw -- THe doctor in ER had a theory on the stones, He said that most
stones are made up of calcium and that the reason that I may have so many
is that with the Muscle disease that my movement is limited and that I may
be suffering from bone loss and that the bone loss sends excess calcium
into the kidneys that cannotbe processed. Very interesting...
murf -- terry - can they do anything with ultra-sound?
butch -- Terry--You have to stop drinking too much water and drink more
BEER.
bruce -- Butch, my brother would agree with you. He says a 'beer or two a
day' keeps the doctors away.
terryw -- I wonder if Other KDers have had Kidney stones?
billeric -- Terry, No kidney stones but had gull bladder removed because
of stones. I know I have got to drink more beer!
terryw -- LOL Bill.
murf -- butch-I like that one LOL
terryw -- murf, they are small ones that they say should pass. If they get
to large they will use ultrasonic break-up.
murf -- ouch!
vic -- butch - thank for the laugh - I'd have to agree with you
johni -- My wife thinks that having KD should be enough, its over the top
to have other medical problems as well!
murf -- johni - I hear you there!!
johni -- I have recently had shingles, it was bad. Just too much on top of
everything else
murf -- I just got home from the second operation on my foot
terryw -- Murf what was the foot operation for?
murf -- two bones in my foot were pinching a nerve
murf -- it felt like i was walking on a glof ball
terryw -- did it fix it murf?
murf -- very bad for balance!
murf -- Terry - I think so, we'll have to see
vic -- Time for me to logout. Thank you all for the information and I look
forward to the next chat.
johni -- Bye Vic
murf -- Bye vic, hope to see you at the conference
terryw -- Bye Vic, thanks for coming
bruce -- Talk to you soon, Vic.
vic -- {goodbye vic}
butch -- Stress brings on alot of problems. Having KD is problem enough.
Keep the stress down and hopefully other problems will not show up.So long
Vic.
murf -- terry I guess we should drink a lot then
terryw -- Since moving up here I have been drinking about 2 gallons of
water a day.
murf -- hopefully the others will pass less painfully
johni -- Its a case of getting the balance right, though. I have to drink
plenty of water, but it is a huge effort going to the bathroom.
terryw -- Johni? Huge effort?
johni -- Yes, unfortunately.
murf -- fast paced chat today! Matbe just to much coffee this morning.
terryw -- We need to post the upcoming chats, you will be able to find
them at www.kennedysdisease.org (Plug Plug)
johni -- We are currently waiting for the Family Care Officer to visit, to
look at how the bathroom can be altered and equipped to make it easier for
me.
terryw -- John, Its almost time for a grab bar by the tilet for me. Its
becoming hard to get back up.
terryw -- Toilet
terryw -- I need one in the shower also for balance to hold onto. May even
get a chair for the shower soon.
bruce -- Johni, have you considered using a 'Tallette'? It is very helpful
when the legs are weaker. It raises you about about six inches.
butch -- Glad to see folks getting involved in the chat, That is the way
we learn from each other by sharing personal problems and triumphs.
johni -- I have had a toilet raiser, which does help lift me off, but no
longer as much help as I now need.
billeric -- Me too Terry. I really struggle trying to get off a regular
stool without some arm assistance.
murf -- Terry - I got a shower chair about 6 months ago and don't know how
I got allong without it.
terryw -- I expected this when I got older but not when I am 41 :(
billeric -- Bruce, what exactly is a tallette?
bruce -- It is a 6" high hollow plastic seat that sits over the commode.
You sit on the 'Tallette' and for me, anyway, it gives me the leveral to
get up a lot easier.
terryw -- It's hard to handle sometimes
murf -- I've not got arms for it yet but they are available
terryw -- I never feared dying when I was younger before I had the
disease. But my greatest fear was growing old and not being able to care
for myself.
murf -- terry I didn't think I'd live this long. LOL
terryw -- Now I have my greatest fear.
terryw -- Funny how life works.
johni -- I use a bath which has a chair that lowers me into the bath, and
then out. But I still have to be lifted into and out of it
bruce -- Terry, I believe that is a significant concern for most of us. I
have thought about it many a time.
terryw -- Scary
billeric -- Thanks Bruce. I will stop at the medical supply house and
check them out.
murf -- Terry - we would not have been able to help all these people if we
didn't have Kennedy's Kennedy's
terryw -- I try not to think of it and focus on other things because when
I do I get sad.
butch -- Before buying any supplies or help aids--check your local Lions
club to see if they have equipment for loan.
terryw -- You are correct Murf.
billeric -- Terry, I think we all have the same fears. Not afraid of dying
or living but what's inbetween scares us all.
murf -- bill - I agree
bruce -- Billeric, I have two. I carry on in the car in case the public
restroom or home I am visiting does not have a handicap stall. They are
only a few bucks. A great investment.
johni -- WE have a 'tallette' We take it with us on visits and on holiday.
It helps me to' higher'other toilets
bruce -- I am just thankful for all the 'aids' out there today. I had an
uncles for KD (?) who died in the 50's. I think how hard it must have been
for him to get around in those days.
murf -- we have to have a positive out look and that's why the conferences
are so important
billeric -- Sounds good Butch. Regular stools with no grab bars are a
no-no.
terryw -- I think that most of us do not open up and tell our fears.
terryw -- Yes Murray, Its good to talk with others with KD.
bruce -- Fear is often as crippling as the disease itself.
billeric -- Terry, I think men are extremely bad at this. Not macho to
talk about deep down felings.
johni -- Things are always less scary Terry when they are brought out into
the open and voiced, particularly in the company of people in the same
situation
terryw -- I try to be a example for KDers and be strong but I am just like
everyone else and have the same fears that you do.
murf -- I agree we all have the same fears but hate to talk about it
billeric -- felings = feelings
butch -- Our Lions club has equipment to loan. Wheel chairs, walkers,
potty chairs, crutches, hospital beds, electric and manual, shower chairs
to name some of what is available.
terryw -- I think because we are Physically weak we hold things inside
because we don't want to be seen as emotionally weak also, but that is the
wrong thing to do.
terryw -- letting your feelings out releives stress
johni -- That is why the chat room is so important, as well as get
togethers with other sufferers. Voicing your fears to healthy friends and
family can be very embarrassing for them.
terryw -- also pain inside
murf -- we try to make up for it in other ways, I know!
murf -- I sure miss John-c's jokes when he's not here
terryw -- It got quiet all the sudden.
terryw -- wonder where john-c is?
johni -- All those who can get to the conference are so fortunate. All
that contact!!
bruce -- I believe the answer was brought forward earlier in the chat -
drink more beer!!!!
murf -- I think we're all reflecting
terryw -- Johni, I wish more could attend from far away but I know it is
hard.
murf -- good idea bruce
terryw -- <-----Hardly ever drinks.
murf -- you can pretend
terryw -- Drinking makes me very very tired
bruce -- Actually, I quit drinking many years ago. Now, after reading all
the benefits of a glass of wine or a can of beer once a day, I am
considering taking it up again.
billeric -- Terry, thanks for the note regarding research grant money. I
like the request for a certain donation. My check will be mailed out on
Monday
terryw -- I don't need that
murf -- I can't drink beer cause it puts on too much wieght
butch -- I heard that some don't come on the chat because of too much chit
chat. BUT, isn't what a chat is?
terryw -- Bill, Susanne has done most all of the grant stuff, she is the
one running all that. It just looks like me :)
terryw -- I get all the credit LOL
billeric -- Doesn't madder who gets the credit. We know the need is there
if it comes from your household.
bruce -- Butch, I think that 'free-form' chatting is as healthy as
anything else we do.
johni -- I used to drink beer, but now I can fall over without it! LOL.
Now I enjoy a glass of red wine, which I am told is good for your health.
terryw -- Thats what chat is all about.
butch -- Murf--beer isn't fattening. What you eat when drinking a beer is.
Pretzels, chips, cheese, etc.
murf -- I knew to was something LOL
terryw -- I would love to see an officer try to give me a sobriety check
and have me walk a line. I would fail or to raise and stand on one leg. or
to close my eyes and put my head back. I would fall over on all of them.
bruce -- I was always afraid of being pulled over by a trooper and having
to walk a straight line (even without a drink).
murf -- I have a glass of red wine every nigght. they say it's good for
your blood.
terryw -- me and bruce are thinking the same
bruce -- When I typed my comment, Terry, I was laughing at my
visualization of performing the task.
terryw -- me also bruce.
murf -- "It is amazing what you can accomplish if you do not care who gets
the credit." Harry S. Truman
butch -- I would still like to see an identification card which says we
have KD and what anyone helping us might do for us. Police, medics, or any
other person.
bruce -- Well, Guys, I have to go. We are hosting a family BBQ today and
it is time to get things cooking. Have a great day and an even better
couple of weeks. Most of all, be safe and healthy.
bruce -- {goodbye bruce}
terryw -- Bruce, would you be able to host the next chat in 2 weeks?
billeric -- Got to go guys. A realtor is showing the house in 30 minutes.
See how bad I needed this chat? Enjoyed the company. Stay well to next
time.
terryw -- ooops
murf -- bye Bruce
terryw -- he left
billeric -- {goodbye billeric}
terryw -- Ok, Bye bill
murf -- bye Bill
butch -- So long Bruce. Stay healthy till next we chat.See you Bill.
butch -- So long Bruce. Stay healthy till next we chat.See you Bill.
murf -- this has been a very good chat today!
terryw -- Who's still here?
terryw -- Yes Murf.
butch -- No I didn't type it twice. I just got two for the same money.
johni -- I am, just!
murf -- just the three of us
terryw -- Ok
terryw -- 4
pa-paul -- {welcome pa-paul}
murf -- my foot is swelling but this is just too good :)
terryw -- raise it up Murf
butch -- Terry--hope you are feeling better. Hope you pass thoes rolling
stones. Murf--Heal quickly. Need thoes feet.
murf -- Hi Paul
pa-paul -- Hi sorry I forgot
terryw -- Hi Paul, Late again? you will have to tay after. LOL
terryw -- stay
pa-paul -- guess its almost over
terryw -- thanks murf
murf -- I have to get it up. On the couch with the remote LOL
johni -- Terry, hope your new place is good for you, and soon outweighs
the problems you experienced with all the extra effort
terryw -- just about paul, nut you can read back. It was a good chat.
terryw -- but
terryw -- not nut
pa-paul -- thanks
terryw -- thank you Johni, I think it will be.
murf -- my foot is up on my desk and it's tough to type
terryw -- I type that way all the time Murf, when my fingers give out i
type eith my toes.
terryw -- with. see my fingers are starting to go. To much typing.
johni -- I find it easy to type - especially when the wife is doing it for
me!
murf -- LOL. I'm not that good
johni -- I relate to that Terry
murf -- johni - you've got it figured out!!! LOL
butch -- I tried typing with my toes, but it looked like I still had my
shoes on. LOL
terryw -- Well, I guess its time to log out.
murf -- take care all! I've got to get a new ice pack. Bye all
johni -- Take care all. Its been really good today.Bye.
terryw -- Goodbye everyone.
johni -- {goodbye johni}
terryw -- {goodbye terryw}
murf -- {goodbye murf}
butch -- I was great to share the experiences with you all today.f Hope to
see everyone next chat. Stay healthy--So long for now.
butch -- {goodbye butch}

END CHAT