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Kennedy's Disease Chat Transcript 09-02-2006
Topic: Open Forum
Host: Murray Williams
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
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?
fl-don: good here butch
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
SEAN: murf is that the 15th of this month
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
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
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?
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
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
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.
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
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
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
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?
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
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
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
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 toEND CHAT