Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

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Kennedy's Disease Chat Transcript  09-02-2006

Topic:  Open Forum

Host: Murray Williams


Chat Participants:

Murf
fl-don
MICH
SEAN
Butch
craig_h
Gary_KS
KellyC
Rich
annmariejj
billeric

BEGIN CHAT

 

Murf: Morning Sean

fl-don entered the room.

fl-don: gm from fl

Murf: Morning Don, how's your weather?

MICH entered the room.

fl-don has left the room.

Murf: Morning Mich

fl-don entered the room.

Murf: Hi again Don//1

fl-don: re-hi

MICH: Good Morning Murf, Sean and Don

fl-don: gm mi

Murf: Are you wet?

Butch entered the room.

Murf: Morning Ron

fl-don: conference getting closer

MICH: I take it it's raining in Texas

Murf: No sunny and 80 deg in Houston

Butch: Hi Murf--How are you?

fl-don: we should all wear a tag with screen name on it

Murf: Don - are you getting wet?

fl-don: nope, other than usual thunderstorms

SEAN: GOOD MORNING GUYS

Murf: We could do that on our name tags

fl-don: hurricane was a whimper here in fl

Butch: It is raining ALOT in Penna. Windy too.

SEAN: its sunny and about 75-80 today

Murf: We dodged another one

Murf: Ron - your getting that thing now aren't you?

Butch: Hi Sean, Mich, fl-Don....How are you guys feeling?

SEAN: doing great butch

Murf: Sean are you going to the conference too?

Butch: Murf--Yes!

fl-don: good here butch

fl-don: u?

SEAN: when is the conference  i would like to go

MICH: Not doing to bad... just slowing down a bit

fl-don: wait till u get old

fl-don: all your parts slow down

Murf: I just printed off a trip tik from AAA

SEAN: do you have to fill any forms out for the conference

Murf: October 11 - 13th

MICH: Don I'm only two years younger than you are

Butch: Are all you guys on the med for the clinical trial or do you intend to go on it.

Murf: Yes  - you'll need to register before the 15th or pay extra

fl-don: conference oct 11 - 13

fl-don: NIH in mid sept

SEAN: yes i currently am but do no know if i am getting the real medicine or a sugar pill

Murf: I've gone 3 months ago Ron

Murf: u?

SEAN: murf is that the 15th of this month

Murf: yes

fl-don: my luck,  ill get sugar water

Murf: I don't know either

SEAN: i seem not to cramp as much and feel a little better

Murf: probably sugar

Butch: Hopefully they can learn something from our results of this trial. I am very excited to be a part of it.

craig_h entered the room.

Murf: I think I do too

craig_h: good morning

Murf: Morning Craig

Butch: Hi Craig.

SEAN: good morning Craig

Murf: hows your weather?

MICH: How's the Virginian?

craig_h: grouchy and crabby this morning, neighbors dog barked ALL NIGHT long

fl-don: are any of you guys who are diabetic using Byetta?

Murf: Craig - you need to go our and bite that dog on the ear

Butch: No fl-Don. I am on metformin for type 2 diabetes.

craig_h: I might sell that dog on EBay !

Murf: So far I'm lucky

SEAN: so how many people right now are doing the trial

fl-don: i will be in trial in mid sept

Murf: I think we have close to 50

craig_h: I just had my 3 month trial checkup

Butch: Sean--not sure but there will be 50 KD men when it is completed.

SEAN: i go back in December to get more medicine or sugar pills and get evaluated at that time

Murf: I'll be going for my 3 month in a few weeks

fl-don: anybody going to NIH on sept 19 & 20

fl-don: i participated in the Ohio state KD study in late 90's

SEAN: that funny i do not have to go back for 6 months i went on June 26th thru June 29th and go back in December i guess there is different trials

craig_h: hot dang, college football all day

craig_h: Sean, you see your local doctor on the 3rd and ninth months

SEAN: yes

Murf: Sean - you'll need to see your family doctor in three months

SEAN: yes i have an appointment

Gary_KS entered the room.

craig_h: that's what I meant I just did, 3 month checkup, but not at NIH

Murf: Morning Gary

Gary_KS: Good morning, all. Gary Uchiyama joined from Kansas City.

Murf: Me too I go in a few weeks

SEAN: ok thanks that makes me feel better i thought i might have messed up

Butch: Hi Gary.

fl-don: when do we need to see our own docs?

SEAN: hi Gary

fl-don: when u go murf?

Murf: Don't forget the forms your Dr. has to fill in

craig_h: NIH will send a letter when it's time Don

fl-don: do we see our own docs after 1st NIH visit?

SEAN: what time is the chat over i have to  go get food for my company

Murf: I go for my 3 month in a few weeks. back to NIH on the 18th of Dec

fl-don: ty Craig

Butch: It sure was a shock and a shame that Patrick left us to go to a far better place. He was a very good man.

fl-don: gone is not a better place

Murf: Usually about 1 hour from now

Murf: Sean

SEAN: i hope to get back in time to chat some more talk with you guys soon.

Murf: He sure was I was shocked

Murf: Take care Sean

fl-don: how did the double tree in dc treat you guys?

Murf: That struck a nerve with me because I also live alone

Murf: Don - I was ok u?

fl-don: john c had problems with double tree

Murf: I heard

Murf: Has anyone else?

Butch: You live alone but you are not alone. You have a good support group.

Murf: This is very true Ron

fl-don: I'm very very lucky to have a great wife who takes super care of me

Murf: Don - hopefully that was an isolated incident

craig_h: double tree: my room had a shower seat on the wall. It came off the wall with me on it ......  had to crawl back to bed to get up

fl-don: yep, that's what I'm hoping

Butch: Double-tree was ok. I heard they are re-doing all the handicap rooms. Most are not truly handicapped rooms.

Murf: Don - you don't know how luck you are, well maybe you do

kellyC_ entered the room.

fl-don: is there any other hotel worth looking at?

Murf: morning Kelly

fl-don: i do

MICH: Murf...I hope you keep a cell phone with you incase you ever fall

kellyC_: good morning

Murf: I do but have stuff all over the house

fl-don: but wife is expensive, $2 down, paycheck for life//1

Murf: Craig - really?

craig_h: yup

Murf: LOL don

Murf: That must have hurt. What did they do about it?

Murf: Kelly - hows your weather up there?

Butch: I think it is very hard in Bethesda to go out to other places to eat other than the hotel. Most are not truly handicapped accessible.

craig_h: they apologized, move me to another room, that was about it. I guess I could of pushed to get something out of it, That's just not my style. Only had a small scratch

kellyC_: its getting cool now murf

kellyC_: soon the leaves will be changing colors

Murf: Ron - I stayed in the Hotel, it was easier.

kellyC_: Be Rite Back.... phone....

Murf: Craig - as long as you didn't get hurt.

Murf: The trial is hard on us old cripples

fl-don: what hotel murf?

MICH: Has anyone taken a power wheelchair on a plane....will they park it in the plane or in cargo?

Butch: My room had a shower seat mounted on the wall also. Without handles it was very hard to get up. How did you guys find things at you hotel?

craig_h: 2 weeks ago at work I got very weak. They had to get wheelchair to get me to my car. That was my first wheelchair experience. What a shock for me that was.

Murf: Double Tree

Murf: Mich - Terry took his to Baltimore in 2003

fl-don: i have flown many times with power wheelchair.  they let me go right up to the plane where i got up and walked to my seat.  after touchdown they got chair up to the pland door.

Murf: They dropped it but rented him on until they fixed it

Murf: I suggest renting one in Atlanta

fl-don: airlines fixed chair when they damaged it

Murf: I use a wheelchair every day at work

Butch: Mich--be sure too give them instructions on how to handle your chair. They messed Terry's up on his flight to Baltimore.

fl-don: airlines have a narrow chair if you can't walk to seat.  they will lift you into seat if you need help

Murf: Don - I had to use that on the last flight

kellyC_: Back

fl-don: Terry told me they dropped his chair in Baltimore

Murf: I had the class to fall in 1st the class section

Murf: They call it a carry off

Butch: You always go first class murf.

Murf: As long as you tell them up front what you need most airlines will help all they can

fl-don: right

Murf: I wish Ron LOL

fl-don: if ya need help, ask 4 it

Murf: Don - you got it!

Murf: Sometimes we need to swallow our pride

fl-don: i have never been refused help i needed.

MICH: Sometimes we have trouble swallowing

Murf: I ask all the time now because the alternative is "I hit the carpet"

fl-don: are any of you working the mda telethon Monday?

Murf: That too Mich

Murf: I was thinking about it but just worn out this year

Butch: ALWAYS work within your limitations--There is no shame in asking for help.

MICH: Don, I've been working with my wife sorting pledges for the last few years at the telethon

Murf: The job is getting more and more all the time

Murf: That's great Mich. My daughter worked it a few years ago.

fl-don: Judy & i work the phones.  also was the judge at the mda lockup this year.  also threw out the 1st pitch at a pirates game in preseason

fl-don: i milled home plate

craig_h: I get so scared about going out much, I feel like a dang hermit sometimes.

fl-don: missed

Murf: WOW!! how did you get to the mound?

Murf: Me too Craig

fl-don: threw at home plate and almost hit the 3rd baseman

craig_h: I even joined NetFlix to avoid going to the video store

Murf: LOL

fl-don: took chair to mound

Butch: I went for an MRI last week. Told the operator about Kennedy Disease.. While I was on the machine he went to the KDA home page. Was so glad to see his interest in our problem.

Murf: I do most of my shopping online

Murf: Craig - I know EXACTLY how you feel

craig_h: exactly murf, me too .....  almost wear nothing but L.L. Bean now,

kellyC_: today's Technology,,,,, is awesome as appose to the 1950's hey.!!!

Murf: And when shopping online ... they deliver

fl-don: u r sure right about that Kelly

kellyC_: yup

craig_h: I'm lucky the company I work for lets me use a laptop at home on my bad days

fl-don: most buildings are now assessable now.  was not true in 50's

Murf: They'll even deliver to Sask Kelly LOL

kellyC_: really???

kellyC_: wow

Murf: LOL

fl-don: i worked out of home last 3 years i worked

kellyC_: what do they charge LOL

Murf: I may be moving offices in Dec. This will add ~ 1 hour to my morning commute

craig_h: murf .....ugh

kellyC_: Murf what kind of work u do? I'm surprised ur still working

Murf: I'm going to see how it goes first but may have to try working at home

fl-don: i got much more work done at home then in office anyway!  no interruptions

Murf: I'm A global advisor for an oil service co.

kellyC_: must be a tough man with KD and all hey murf?

kellyC_: oooo....ok

craig_h: don, I know. Our plant in Juarez doesn't call my house like they do my office !

Murf: Just have to work with whats left of the brain

kellyC_: yeah..... for sure yup.

Butch: I have been dealing with tendonitis in my right shoulder. You guys all know how hard it is to get out of  chair, and with a sore shoulder it is even worse.

Rich entered the room.

Murf: Morning Rich

Butch: Hi Rich.

fl-don: and they call these "golden years"

Rich: Hi, This is way too early for me!

Murf: Ron - Ive torn a ligament in my right shoulder so I have an idea

Butch: Sure they do--we give all our gold to the doctors. LOL

Murf: I'm taking Celebex for it

craig_h: when first diagnosed, I lost a little over 100 pounds, and felt great. Now 75 or so has crept back. I'm determined to get it back off and hopefully feel more mobile again.

MICH: Craig, what kind of a plant do you work for?

Murf: Cause we need lots of gold to buy our drugs to stay alive Don

craig_h: MICH, I do mechanical design work for Electric Motors

Murf: Craig - we're very luck we can still work

Murf: lucky

Rich: Anybody live on the West Coast?

craig_h: heck, if I couldn't work and living alone. I'd go raving insane

Butch: Craig, electric motors such as in power chairs

fl-don: yes, I'm on west coast of fl

MICH: Rich, not quite...I'm in Utah now.... but 25 years in Portland

Murf: Terry lives in California

kellyC_: well got to go everyone bye all

Murf: Take care Kelly

kellyC_ has left the room.

Butch: So long Kelly--stay healthy.

craig_h: butch, we actually have tried to get into that market, we can't meet the price points. The project I'm on right now is for Fork Lift's

Murf: I need a fork lift at home LOL

Murf: for me

annmariejj entered the room.

Rich: 7:30 is too early for me. I have trouble sleeping so when I do sleep I'm not about to set an alarm.

Murf: Good morning Ann

annmariejj: Good morning to all.

Murf: Are you a carrier?

annmariejj: No my husband has Kennedy's my daughter is a carrier

fl-don: i wish they would invent a chair a few inches from the floor which we could crawl into, which would then lift us up when we fall.

Murf: Welcome - your in the right spot

craig_h: don, I've thought that same thing

Murf: Good idea Don I'll buy one!

annmariejj: I have a question, does change of season effect how you feel?

Butch: I have had donated to the KDA 10 power chairs. They are not new but in very good shape. They were demos. I am looking for any knowledgeable person to help to make them 100% so we can sell them for the KDA. Any ideas would be a great help.

MICH: Don, my chair won't go to the floor but it does elevate quite a few inches

Murf: Some times yes. I can't handle the cold weather any more

craig_h: when the weather changes, it messes me up with the temperature rising and falling

fl-don: change of season does not affect me.

annmariejj: My husband is having a hard time walking because of it getting colder.

Murf: Ron that is great!

MICH: AnnMarie...yes extreme hot or cold sure slows me down

craig_h: I finally got a heat pump last week to keep a more constant temp in house

Murf: That's normal for us

fl-don: need a chair only i few inches from floor i can crawl into

annmariejj: Is there anything that you do for the pain? Both my husband and

Murf: I keep the house about 76 -77

Rich: This long hot summer has got to me. Here comes the cooler weather!

annmariejj: his brother are effected by the pain to

fl-don: i moved to fl from mi due to kd

Murf: A lot of us have pain mine are my legs. they just ache (throb)

annmariejj: Murf that is what my husband says all the time.  What do you do?

Murf: I don't take anything yet but I rest a lot.

fl-don: i sit in recliner with legs elevated

annmariejj: Have you tried acupuncture?

craig_h: yup, ache-throb here also. I usually rest, and sometimes keeping the legs a little warm helps me

Murf: me too Don. get the legs up and rest

Rich: If they can figure out why there is late-onset for some theymight come up with a way to delay symptoms

craig_h: yes, and elevated

Murf: No I haven't does it work?

fl-don: i put pillow under legs to get legs above heart

annmariejj: My husband was doing it for awhile and he said it helped but then he got depressed again and stopped.

Rich: For me excersise and activity are essential

craig_h: soon as I get comfy, ready to watch football, I'll need a beer and have to start all over

Murf: I was very depressed to but now on Zoloft

fl-don: do like my wife does. kicks me in butt and puts cushion under legs

craig_h: by then 1st Quarter almost over

annmariejj: Does it help?

fl-don: butt hurts

Murf: Depression is a serious problem for us as well

fl-don: how long has husband had kennedy?

Rich: I was lucky, my KD didn't show until I was 68

fl-don: mid 40's here

Murf: Craig has the right idea

craig_h: 47 here, diagnosed about 6 years ago

Murf: 35 here

annmariejj: My husband was diagnosed when he was 42 so he has it for 3 years.  His whole family which is 7 brothers and sisters are either carriers or have full blown symptoms.

Rich: My brother was late-onst too

Murf: Ann - close to same as me

fl-don: most accept disease after a number of years. tell his md about depression

Rich: so I think there are two kinds of KD

Murf: Hard to deal with these cards we're delt that early in life

annmariejj: Murf are you walking?  We finally got him a powerchair for bad days.

Gary_KS: 35 here too.

craig_h: when I get depressed, I turn on Jerry Springer and thank the lord that I'm not like THOSE people

fl-don: think most of us have good and bad days

Murf: Ann - tell him to get off his but and chat with us the 1st & 3rd Saturdays of each month

Rich: When they get it sorted out there my be a way to treat KD

annmariejj: I will try, it is just really hard for him.  I think he is somewhat still in denial.

Murf: I use a power chair every day a work

fl-don: when i have a bad day, i think of my buddy's that went to viet nam and did not return

Murf: I can walk about 150 feet now without sitting

Butch: The only thing wrong with power chairs is that we use them more and walk less....Don't know if this is good for us.

annmariejj: Wow Murf that's great.

MICH: I've had the symptoms since 46...now its 14 years later

Murf: Ann - my brother was for a while and so was I

fl-don: i can still walk, but fall without warning, so use wheelchair to protect feet

annmariejj: Back to what someone else said I think there are different forms of this disease. One brother is effects his face, the other two can't really walk.

Butch: Rich--what do you mean two kinds of KD?

Rich: Thats where I'm at now. walking or standing gets tough after a minute

Murf: We do need to exersise a little. just not to over do it

fl-don: never heard of different types of kd

annmariejj: I keep telling my husband not to overdo it.  He still wants to mow the lawn.

Murf: Falling is a big worry

craig_h: I finally started feeling comfortable with a cane in public. But I must not be as progressed thru this as many of you

annmariejj: Then he falls down with the mower.

fl-don: falling is part of kd me thinks

Murf: I had facial twiches too

annmariejj: Yes it is but my husband is stubburn.

craig_h: males have more stubborn genes than females  :D

fl-don: lol, u should talk to my wife about being stubburn

Murf: Craig - you will ... sorry

fl-don: ann, its probably pride

Murf: Remember to treat depression too

Rich: The late-onset KD is being looked at to see if some clue will show a way to treatment

Murf: Laughter is best!!!!!!

SEAN has left the room.

Butch: Everyone with KD should use a cane. A cane doesn't help you walk--but it helps to keep you from falling down.

annmariejj: I will, because I think that if he took something for depression it might help.

fl-don: i use to refuse offers of help, but i gradually accepted my malady

Rich: Yes, a cane works for me

MICH: A cane is not for me as not enough arm strength...maybe eventually a walker

craig_h: I have more problem walking down a slight slope than up a slight slope

fl-don: cane, wheelchair, grab bars etcx, i use them all

Murf: Don - we all did

Rich: Depression my actually be a separate problem

fl-don: i have never fallen walking backwards, always walking frontwards

Murf: Craig me too thats where i could fall

annmariejj: Don do you walk backwards up stairs?

fl-don: different muscles

fl-don: i dont do stairs

fl-don: anymore

Murf: Me too Don - I have them all over the house

craig_h: ok, good to see everyone .............. talk to y'all in another 2 weeks

fl-don: tell your hubby to get on chat ann

Butch: So long craig--stay healthy.

Murf: Ann //2

craig_h has left the room.

annmariejj: I will, or I will try.  I think he needs to see he is not the only one.

fl-don: use to walk down stairs backwards for safety

Rich: We all need support

Murf: This chat will be posted on the website so tell him to go read it in a week

fl-don: that is why we are here.  ann do you live near atlanta ga?

Rich: Time for breakfast, see you all

annmariejj: Cool, I will.  I live in sunny Las Vegas, Nevada.

fl-don: omg, heaven.  go to las vegas every chance i get

fl-don: stay at bally's

Murf: You need to haul him to Altanta to the conference Oct 11-13th this year

Rich has left the room.

billeric entered the room.

fl-don: conference last year in san diego

annmariejj: I live up by Red Rock.

MICH: Bill, wlecome

Murf: Bill one hr late bud LOL

fl-don: do you have donkey's?

annmariejj: It is really hard for us to travel.  I have a 7 year old and a 4 year old.  Airports are the worst for him.

Butch: Better late than never.

MICH: Bill, are you back in AZ?

annmariejj: No donkey's.

Murf: Me too but the airlines help you if you ask

fl-don: power chair helps travelling

billeric: Sorry guys.  I am on a library computer in Mn.  They are tough on chat rooms.

annmariejj: Really, I keep telling him that.

Murf: Maybe we need to have the next conference in Lost Wages

fl-don: get him on kda chat and we will tell him like it is

annmariejj: Yes, you do.  I already know of 7 people that would show up.//1

fl-don: we know exactly how he feels and what he is going through

Murf: Tell them all

fl-don: we can help him

Murf: Thats what we're here for

billeric: I am planning on attending the Atlanta session.  Hope most odf you are too.

fl-don: i keep asking to have conference in vegas

annmariejj: that is what he really needs.  It is a hard road sometimes.  The next chat is in two weeks?

Murf: Bill - great! we'll have a blast

billeric: odf= of

fl-don: ioll b there bil;l

Murf: Next chat is the 16th

fl-don: ill b there bill

annmariejj: If you need a contact in Vegas I can help.

Murf: Bruce will be host

fl-don: cya FOLKS.  POOL TIME

billeric: you guys are tough today!

Murf: Don - take care

Butch: Chats are on the 1st and 3rd saturdays

annmariejj: Don- nice talking with you.

fl-don: ill look you and hubby up next visit to bally's

fl-don: good luck ann

annmariejj: that would be great!!!!

fl-don: keep your chin up

annmariejj: thanks.

fl-don: bye all

fl-don has left the room.

Butch: so long Don.

MICH: You'all have a great week

Gary_KS: Have a nice weekend. Bye.

Murf: Ann - Our conferences are great! imagine 20 guys talking through their nose in one room //2

annmariejj: that is a sight to be seen.

billeric: Good one Murf

Murf: It's great to meet people tat are going through the same thing as you are

annmariejj: Well I've gotta go.  I have two kids fighting here at the moment.

Butch: Happy labor day. Every day we labor  to do the things we must do.

Gary_KS has left the room.

annmariejj: It was great talking with everyone.  You are the best.

Murf: Great for wives too. we set asside a room where you can go talk in private about us

annmariejj: Really were is that?

Murf: Ann take care we're always here if you need to talk

Murf: At our conferences

annmariejj: Well hopefully we can get one in Vegas.  I'm not sure about GA.  I am a school teacher.  They don't let us out much.

Murf: LOL I understand. I'll vote for Vagas

Butch: So long you all. Must go for now. hope you all stay healthy till next we chat.

annmariejj has left the room.

Murf: Ron - take care

Butch has left the room.

Murf: That was great!

billeric: Mitch, are you doing o.k.?

Murf: Good chat today

Murf: You guys ok?

MICH: Bill, doing pretty good, and yourself?

billeric: This falling has got to go.  Seems like I fall once a week.  Full of bruises most of the time.

Murf: I'm going to save and log off. you guys can chat as long as you want to

END CHAT