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Kennedy's Disease Chat Transcript  09-16-2006

Topic:  Open Forum

Host: Bruce Gaughran

Chat Participants:




Bruce: Morning Terry

Bruce's new status is 'administrator'.

TerryW: Hi

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: Morning

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

Butch: Craig--Sorry!

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

TerryW: put

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

MikeG: ditto

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

TerryW: yep

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

TerryW: uses

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?

Duane: yes

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

Murf: o

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

MikeG: mother

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

TerryW: hmmm

MikeG: sometimes I wish the cramps would come back...

craig_h: is ultram a drug ?

TerryW: yes

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.

Duane: great!

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

Murf: Invented

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

Murf: //10

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

kellyC_: lol

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:  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

kellyC_: ok

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...

Murf: Yup

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.

TerryW: yes

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: LOL

kellyC_: lol

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

TerryW: hehe

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: LOL

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.

TerryW: yep

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).