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Kennedy's Disease Chat Transcript 09-16-2006
Topic: Open Forum
Host: Bruce Gaughran
Bruce: Morning Terry
Bruce's new status is 'administrator'.
TerryW: I still have not gotten TJ's Registration. I thought he was going to the Conf
TerryW: Ron's Either, He is going right?
Bruce: I guess people like to wait until the last minute.
Bruce: What version of Java are you now running?
TerryW: Not sure
Murf entered the room.
Bruce: Morning Murray
Murf: I thought you were on holidays Terry
TerryW: I checked last conference spreadsheet and we had 40 individuals and 12 doctors
TerryW: Not yet Murray
Bruce: We are having beautiful fall weather with lows in the high 50's and highs in the high 70's and low 80's
Murf: TJ will be sending his reg in today
TerryW: We are close this year on Individuals
Bruce: What do you mean close?
TerryW: thanks murf
TerryW: 2003 conf we had 40 associate/board attendees
TerryW: this year we should have about the same
Bruce: I am impressed with the number of doctors and we still haven't heard from Kurt.
TerryW: right now we are at 34
Butch entered the room.
Murf: Looks good
Bruce: Morning Ron
Murf: Morning Ron
TerryW: add TJ and ron&wife we will be at 37
TerryW: hi butch
Bruce: Ron, are you flying or driving to the conference?
TerryW: Ron did you mail your reg to me?
TerryW: have not gotten it yet
Murf: Ron ...
Butch: Good morning guys. It is a beautiful rainy day in Penna. How are you guys doing?
TerryW: it is 42 degrees here in Calif this morning
Murf: Sunny & 82 in Houston
TerryW: Cold front
craig_h entered the room.
Butch: Yes Terry. My registration and check was mailed to you. Bruce--I am driving to Atlant.
Bruce: Murray, do you know who is going to lead the woman's private session this conference?
TerryW: morning craig
Murf: Morning Craig
Bruce: Morning Craig
craig_h: good morning y'all
TerryW: thanks ron
Murf: No maybe John has someone in mind
Bruce: Craig are you a Tech or VA fan?
craig_h: Va. Tech !!!!!
Bruce: They look good again this year
craig_h: hokie hokie hokie hi :)
Bruce: There are some good games today on the tube
TerryW: Murray I leave on vacation Friday early AM
craig_h: offense hasn't been much, defense been awesome. But we havew Duke today. I think the 5 of us could beat Duke
Murf: I wish. What is a holiday anyway?
TerryW: Our Anniversary is the 23rd
craig_h: yeah, I am watching football today until my eyes bleed
Bruce: Terry, are you planning on taking the helicopter ride on the garden island?
TerryW: Not this year, did that last time
TerryW: have a video of it
Butch: Craig--On the last chat you said that the hotel gave you a handicapped room and you didn't necessarily need it. I sure could use it if you don't need it. The hotel listed me for handicapped but will it be there?
TerryW: I almost got air sick in the Helo
Bruce: We thought the ride was one of the highlights of our trip. We also enjoyed the baby Grand Canyon.
craig_h: Butch, where do you mean ?
MikeG entered the room.
TerryW: Hi Mike
Bruce: Well, Let's BEGIN the CHAT
Murf: Morning Mike
MikeG: Hi Terry
Bruce: Morning Mike
Butch: At the hotel in Atlanta. The last chat you said the Holiday gave you a HC room.
MikeG: just got back from breakfast - just in time
Bruce: How are things in Tampa?
TerryW: I got one of those shower suction grab bars finally Bruce
MikeG: Hi Bruce
craig_h: Butch, must of been someone else. I can't make Atlanta.
TerryW: Works great
Bruce: I am taking mine to the conference
TerryW: I finally updated my personal story also
TerryW: on the web site
MikeG: nice down here - rain stopped. Finally!
Bruce: Mike, are you into any college teams?
TerryW: I out up 2 memorials also on the Memorial page
TerryW: Denny and Partrick
Bruce: Thanks, I know it will be appreciated by the families
MikeG: not in particular - used to be a Buckeye fan though.
Bruce: Sorry I asked!!!
Murf: Patrick's passing gave me a morality check
TerryW: My personal story said I was 42 still LOL
craig_h: Bruse, who is your team?
craig_h: oops, Bruce
Bruce: Georgia Bulldogs and Penn State
Bruce: Mike, I am not an Ohio State fan. Sorry
craig_h: the one time I cheer for penn state last week, ugh
MikeG: I've lived in so many places I can be for anyone now.
TerryW: <----not a big sports fan
Butch: Penn State--Yes--Georgia Bulldogs????
TerryW: Anyone out here have HD tv
Gary_KS entered the room.
TerryW: Hi Gary
craig_h: I just got HD a few months ago, love it
Murf: Morning Gary
Bruce: I am the same way, Mike. I just cannot back certain teams that I feel did the system wrong one time or another. Like FL State, Nebraska, etc.
MikeG: same here Terry. Got too many other things going on to take 2 or 3 hours out of my day.
Bruce: Morning Gary
TerryW: I just got a new flat screen and HD receiver
Gary_KS: Good morning, all. Gary Uchiyama joined from KC. It's nice sunny day in KC.
TerryW: they hook me up on Tues
Bruce: Craig, what kind did you get?
craig_h: y'all love it Terry
TerryW: 46" Sony Bravia LCD
Murf: I got one for the Superbowl game last Jan
Murf: 50" sony
craig_h: Bruce, Hitachi , it's a smaller TV, maybe 42
TerryW: My entertainment center would only allow a 46"
Bruce: I am still holding out because of the many stories I read of LCDs needing replacement bulbs every 1100-1500 hours.
craig_h: yeah Terry, I had to size mine to entertainment center, barely fit
Bruce: I like the Hitachi and it got good reviews.
Bruce: I am now looking at Plasma. The price came down to LCD range.
Murf: You should try a video game on it with surround sound
craig_h: so, how has everyone been feeling?
TerryW: Direct tv requires a 5 LNB dish also
TerryW: they are installing that
MikeG: must be nice... I'm still on the old fashioned 35" tube...
MikeG: need a crane to move it!
TerryW: my old sony 32" tv is 16 years old, still runs perfect
Bruce: Craig, the last 5-6 weeks I have been experiencing a lot of aches and pain in certain muscle groups. This too will pass ...
TerryW: it is nor in the garage covered
craig_h: I've noticed when I am running even a slight fever, my legs are feeling weaker and weaker. Do y'all notice that a fever bothers you more ?
TerryW: Craig, anytime I am sick I feel weaker
Murf: My old 36" worked fine too but I'm sure not sorry I switched
craig_h: Bruce, is that from over doing it? or just something thta happens?
Murf: Work is killing me
Murf: No one at work understands how hard it is on us
Bruce: I am doing nothing different. My neurologist said it is another phase and it too should pass. But, it sure is no fun right now to have aches and pain every day.
craig_h: most of my walking at work is going to printer. They are going to purchase a printer for my cubicle
TerryW: I only fell twice this week. The good thing about living in the hills is I have no concrete I fall on dirt
Bruce: Craig, how old are you?
TerryW: still hurts
craig_h: people I work with have been awesome
MikeG: that's right! Even going to lunch or going for coffee is a chore!
craig_h: I am 47
Murf: You can roll down hill to the house //2
Duane entered the room.
Murf: Hi Duane
Duane: Good Morning all
Murf: I couldn't work if it wasn't for my chair
Bruce: When I was in my fifties and working, every year I added equipment and conveniences to my office to minimize the trips I had to take.
Bruce: Morning Duane
Murf: I don't walk at work much
craig_h: mikeG, I know what you mean. and our soft drink machine vends drinks so darn low
Duane: hello bruce
Bruce: Where are you from in NM
craig_h: Murf, what type of chair?
TerryW: We just got a Massage chair from brookstone, It helps withthe aches and pains
Duane: Hobbs, (SouthEastern NM)
Murf: I have an Invicare Xterra GT
TerryW: it stretches the legs
craig_h: I've wondered about those Terry, good results for you ?
Bruce: Do you get the wild cold winds in the winter?
TerryW: and ises air to force blood into the arms and feet
Murf: Not really something for an office but I get around in a hurry
Duane: Is it tax deductible? :)
Butch: I have had tendonitis for the last five months. You all know how hard it is getting out of a chair....well with the pain from tendonitis it is very difficult. Going for an operation..
TerryW: Yes craig it helps with my feet and hands when they feel numb
Murf: The chair Duane?
TerryW: it forces blood into the extremities
craig_h: thanks Terry, I will look into that. My feet get numb
Murf: The MDA and insurance paid for it and the Van to haul it was not TT&L and the lift was too.
TerryW: THe chair is the Panasonic Elite Pro
Murf: Panasonic power chair ... cool
TerryW: no massage
TerryW: massage chair
Bruce: Has anyone tried quienine (spelling) for muscle pain and cramps?
TerryW: Yes John C takes it regularly
MikeG: that's what my mothr is on, Bruce.
TerryW: he swears by it
Butch: John used to take that Bruce.
craig_h: We were working on a motor for power wheel chairs. But I think our motor was to expensive
TerryW: Oh I thought he still took it
Murf: No I take that for Malaria //2
MikeG: it did her good too.
Duane: Wow paid for the van too? Sweet. I need to find out more about the van
Bruce: My doc recommended it to me.
TerryW: Gary how are you doing?
MikeG: do you still have cramps, bruce?
Murf: No I paid for the Van but I didn't have to pay for Tax Title or License
Duane: oh. ok.
MikeG: mine went away at about age 52
Bruce: I am not certain how much of the pain is related to cramping
Murf: Saved me $6000 on the van with the $1000 back from Toyota
Bruce: Mike, I haven't had real cramps for several years, but we can't figure out what is happening right now with the aches and pain.
TerryW: Bruce is the pain like a pressure squeezing aching kind of pain?
Duane: oh that's great. did you have the van customized for the chair?
Murf: Thats how my legs feel all the time now Terry
TerryW: mine also
TerryW: ULTRAM works for me
Bruce: Not really. It is almost like a cramp that won't go away and just nags at you all day
MikeG: sometimes I wish the cramps would come back...
craig_h: is ultram a drug ?
Murf: Duane - No I just had a Bruno Curbsider lift installed
TerryW: ULTRAM real name Tramadol
Duane: I take tramadol ...It's the only med that works for pain.
MikeG: at least that would indicate muscles returning...
TerryW: me also duane
TerryW: it seems to target the KD pain
Murf: Good to know
Bruce: I can still take iboprophen (sp) and it normally helps.
craig_h: lately, when I have a good day, it is awesome. But when I have a bad day, oh brother.
Duane: ok. murf I have the power lift on my jeep and works great unless it rains. :)
Gary_KS: Terry, I am fine thank you. I could get my driver's license renew. :-(
Duane: yep terry. it works for me.
Murf: I can't (don't) use it in the rain
Bruce: I have a Joey by Bruno lift for my van. It works very well.
TerryW: does anyone have uneven arm strength, I am right handed but my left arm is stronger and hand
Murf: Covered parking at work and a garage at home
Bruce: Terry, yes, and that is common.
Murf: Careful Terry
Duane: I have constant pain in my left leg and back. doc said it was lack of muscle strength in lower back.
Bruce: I just saw my neurologist and he measured my strength. It was uneven from muscle group to muscles group.
TerryW: my writing ability is almost gone I can hardly get through writing an address on an envelope and then I have to wait for 10 min to do another
TerryW: it turns to chicken scratch
Bruce: He said this is very common for KD'rs.
Duane: Terry, do you still ride horse? or has it become too difficult?
Gary_KS: I made mistake. I could NOT get driver's license renew. I was requested driving test again but I could not move wheelchiar to driving seat by myself. I can drive car if I seat the driving seat.
Murf: My right shoulder I keep tearing the ligaments now moving myself around
MikeG: same here, Terry - I have to do everything on the computer.
TerryW: I can ride but I can't really control the horse well because they respond to leg pressure to direct them. My legs get real tired fast
craig_h: Terry, I used to have good "lettering" I am a glorfied Draftsman. Now, my chicken scratching can't be read !
Murf: NIH are measuring us on computer for strength
Duane: my left arm is useless. I'm right handed, but like terry, it has become difficult to write.
MikeG: Murf, have you noticed any changes yet?
craig_h: Murf, all that computer equipemnt to measure muscles looked like a little shop of horrors !
TerryW: Sorry to hear that Gary
Bruce: It continues to be important to exercise every muscle group to stimulate the motor neurons and muscles.
Murf: oh ya. Writing is getting worse. Thank GOD for computers
TerryW: Gary what are you going to do about that
Murf: Typing is not great anymore either
Duane: is anyone doing aqua therapy?
Bruce: There are several KD'rs doing aqua therapy and it appears to be quite helpful.
Duane: I'm starting next week and hope it will help with legs and back.
Butch: Hey Murf--It would be great to know the comparisons of the stregnth test from NIH. Might show KD progression.
Bruce: Paul and Ron are two board members that use it.
Murf: Thats the idea Ron. We'll have to see if it works
Bruce: I know of a couple of others who also swear by it. They don't have to worry about falling.
TerryW: When I go out on the boat at the lake I swim but I found it harder to swim far, I use short swim fins to help and the float teqnique
TerryW: spelling ahh
MikeG: Duane, Don walks in the pool here in Sun City Center for several hours a day.
Murf: You just have to be careful not to over do it Duane
MikeG: it seems to be doing him a lot of good.
Gary_KS: Terry, I have not driven car for 3 years. So it is not a big impact for my life so far. I left just shock.
MikeG: I wish I had the time...
MikeG: someday - when I retire...
Duane: That's what i;m going for mainly. walk the pool. They have a lift to remove us from the pool afterwards.
TerryW: I understand gary
craig_h: one of my biggest problems is walking down a slight decline (and I won't do stairs)
Bruce: Craig, that is natural.
Murf: Me too Craig
Bruce: I use to hike in the mountains. Going up wasn't a problem, it was the coming down. Several times I rolled part of the way down.
craig_h: I've started the declines with cane downhill and walking sideways, almost crab like
MikeG: that's the best way to come down
Bruce: I always find it amazing how everyone adapts to the circumstances. I have said many times we need to develop a guide that provides all the little accomodating insights that makes life still livable.
Bruce: Does anyone ride a stationary bike?
craig_h: I guess my dream of wearing roller skates and being a car hop at Sonic is over :(
Butch: LOL Craig.
Bruce: I use to ride a mountain bike, but had to many crashes because I didn't have the strength to go up a hill.
MikeG: yes, if we could just find a way to get better fine motor movement...
Bruce: I just read where the price of the robotic HAL suit is coming down.
Bruce: I continue to look at that as a potential option in the future.
Murf: Me too Bruce
Bruce: I would be worth the money to be able to walk again.
Duane: I've been having problems with speech. especially when I am tired or excited. sounds like mumble mush according to my brother.
Murf: Unvented for the military ... used by KD'ers
TerryW: I saw on the military channel where they have muscle suits that the soldiers will wear to aid in body strength
TerryW: they have mechanical aids
TerryW: to make them stronger
Duane: cool...terry. where do we buy them :)
TerryW: lift more
TerryW: brand new
TerryW: don't know
Bruce: The web site for HAL mentioned that they are now working on transforming the unit so elderly people could use it.
TerryW: it was on future tech
Gary_KS: Bruce, I am hoping the robtic HAL suit near future, too.
Butch: Duane--speech is ok--other peoples hearing is not too good. LOL!!
Murf: Join the Marines //2
kellyC_ entered the room.
TerryW: Hi Kelly
Duane: I agree.
kellyC_: od morning slept in
Bruce: Morning Kelly
Murf: Morning Kelly
craig_h: I had been wondering why they can have artifical legs (like the girl in commercial for the Amazing Race). But there wasn't something that could be strapped on an existing leg. Is that what this HAL suit is?
kellyC_: hi murf
Bruce: Have you had any snow yet?
kellyC_: not yet otsa rain here now
Murf: Craig - yup
Bruce: Craig, yes. It straps on to the legs and arms and you have batteries in a back pack.
craig_h: Murf, there goes my patent idea, lol
MikeG: here's hoping the dutasteride will solve ALL of our problems!
kellyC_: hopefully the drug will work hey?
craig_h: MikeG, you participating ?
TerryW: I think us KDers should start a colony on the moon. We would be fine there
Murf: Or help
craig_h: I started my second bottle first of September
MikeG: No, I'm not in the trial.
Murf: I start mine next week
kellyC_: hows it going craig_h the drug notice anything yet
Murf: Second bottle
MikeG: any changes so far?
TerryW: I hope on one has been eating any bagged spinach
craig_h: not sure if it's mental or physical changes
Murf: No not that I notice
craig_h: I could be a placebo taker too
kellyC_: yeah true.... that hey?
craig_h: I had less bad days, until the past month
TerryW: Murray, I went back to the doctors and they gave me the scope treatment //8
Bruce: I just looked at the web site for HAL-5. The link is: http://sanlab.kz.tsukuba.ac.jp/HAL/indexE.html. It still costs $19,000, but the price is coming down every year.
TerryW: All looks OK internally
kellyC_: hows ur speech terry?
Murf: Good for a few years on that end now!
TerryW: my speech is good unlesss I am tired
TerryW: then I slur or mumble a bit
kellyC_: yup me to at times i have nasel voice
TerryW: I have beeen lucky with not getting to nasally
Murf: Kelly - I do all the time now
kellyC_: reallly gosh thats suks hey murf
Gary_KS: Bruce, it may require maintenance cost every year, too.
kellyC_: it seems to be getting more progressive for me my speech
MikeG: that looks pretty nice, Bruce. BTW, the link has an extra period in it that needs to be removed for it to work...
Bruce: Yes, the device has to be serviced every year. They only lease the units now.
craig_h: my voice just gets low in volume and start coughing
kellyC_: i get virtigo at times and stagger sometimes to when tired lol
TerryW: I have noticed that if I talk a lot for a short period my voice goes hoarse
Duane: gotta go let the dog out. have a great week everyone.
TerryW: bye Duane
Duane has left the room.
Murf: Kelly - I got that lately from Provigil
Murf: I had to quit taking it
craig_h: kellyC, this past monday I felt vertigo. But then I was catching a cold, I figured the dizzy was from that.
Murf: MDA wnated me to try it
Bruce: We sure have covered a variety of topics this morning.
kellyC_: oh ok
Murf: Got to run - talk to some of you in 1/2 hour
Bruce: Take care
TerryW: now everybody goes quiet
Murf has left the room.
TerryW: all typed out
kellyC_: so hows the trial going good i hope
craig_h: I liked the idea someone had earlier about collecting all the little things we do to compensate during our lives. Might be somethng to share with co-workers and family
Bruce: I think my fingers are tired out from all the subjects covered
craig_h: or has someone already done that?
TerryW: I don't think anyone hhas
Bruce: Craig, I just need to find the time to start collecting the information/tips
craig_h: Bruce, I think that would be awesome
Bruce: After I retire the second time I'll start working on it
Butch: At least we can still understand what we type but, not necessarily what we say. The KD voice!!!!
kellyC_: yes for sure butch
fl-don entered the room.
Bruce: Morning Don
TerryW: DOn you are tardy
Bruce: We have seven minutes left on the chat
MikeG: hey, Don
TerryW: detention for you
craig_h: another idea I've had ...... I have bought all the "toys" and stuff I need. I think this year, I'll request family members donate to KDA instead of gifts for me
fl-don: hi all, been 2 the pool for exercise
Butch: better late than never.
Bruce: How is that going Don?
craig_h: for Christmas I mean
TerryW: good idea craig
Bruce: I gather the pool has a winch/hoist system?
MikeG: how long did you walk today?
craig_h: might be able to raise ...... $5.99 this year, lol
Bruce: Anything is helpful
fl-don: going well. looking 4ward to the convention. what happens in atlanta, stays in atlanta
Bruce: I am bringing my camera!
TerryW: Don you are an animal LOL
fl-don: yup, hoist in pool
TerryW: camera phone have become dangerous
TerryW: get people in trouble
fl-don: walked 2 hours as usual
MikeG: that's great
kellyC_: water excercise is good hey
Bruce: I love the commerical on TV where the women are laying out by the pool and the one says something about her camera phone and capturing the events from the previous evening. When she dives in the pool, the camera phone is thrown in after her.
craig_h: Hey guys, I had all my vacation planned out and can't attend. For something like the discussions with the NIH trial updates, is there a possibilty of a webcast?
fl-don: she had been in las vegas
craig_h: for a fee of course
fl-don: i head for the nih on monday
TerryW: Not this year craig
Bruce: Two minutes left in the formal chat
TerryW: Bruce I will capture the chat here
Bruce: Craig, we are just not big enough to have anything like that. Maybe someday ...
Bruce: Okay, Terry. Thanks
craig_h: that's cool, just an idea
MikeG: Bruce, maybe we could add that to the agenda for today.
TerryW: we used to video but not enough sales afterwards
craig_h: hey, y'all have a great weekend
Bruce: Craig, we will take notes and ask for copies of the presentations. Some of it we will be able to capture and maybe even make available, but it won't be everything and a lot will be missed (my hands just don't work like they used to).END CHAT