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Kennedy's Disease Chat Transcript 05-19-2007
Topic: Open Forum
Host: Terry Waite
PA-PAUL: hi terry
craig_h entered the room.
TerryW: hi craig
craig_h: good morning
TerryW: so what's new
craig_h: how are y'all?
TerryW: I am doing ok
PA-PAUL: I'm not
craig_h: my Dad had 9 hours of heart valve replacement yesterday
TerryW: whats wrong paul?
TerryW: is he ok now craig?
craig_h: they keeping him asleep until tomorrow to let his lungs heal some more
PA-PAUL: how can i submit important info to the group Email?
TerryW: Submit to me and I can forward it
Murf entered the room.
PA-PAUL: Ill say a prayer for your dad
PA-PAUL: terry in email
TerryW: same here craig
TerryW: yes paul
craig_h: appreciate it
TerryW: hi murf
PA-PAUL: will do thanks
Murf: Hey T
craig_h: hi murf
PA-PAUL has left the room.
TerryW: bye paul
Murf: Whats happening?
TerryW: I think paul is not well
TerryW: he is going to e-mail me
Murf: his father?
craig_h: sounds that way terry
TerryW: not sure. he did not say
Murf: hope hes ok
craig_h: murf, my dad had heart valve replacement yesterday
TerryW: me also
Murf: WoW1 is he ok
craig_h: seems to be, they keeping him asleep until tomorrow to let lungs heal some more
Murf: they can do wonders today
craig_h: he was more worried about not being able to go to NIH soon with me. I was like "let's get you fixed"
Murf: no kidding
Sammy entered the room.
TerryW: Hi Sammy
Murf: there will be other times this way
Murf: Hi Sammy
Sammy: howdy folks
craig_h: hi sammy
TerryW: sammy have you been in the KDA chat before
Sammy: Yes - been a few weeks however - busy spring in Toronto
TerryW: oh, ok
Dart! entered the room.
Murf: the weather is getting better
Murf: Hey Dart
TerryW: hi dart
craig_h: hi dart
Dart!: Good morning Murf and All
TerryW: I will be right back
Murf: How's Canada guys?
Butch entered the room.
Dart!: Good like always here in Canada.
Murf: Morning Ron
craig_h: hi butch
Butch: Hi Murf and all you all.
TerryW: I am back, false alarm
Murf: oh too much info
Butch: How have you guys been feeling since the last chat?
TerryW: you asked
Murf: Nick is leaving the NIH
craig_h: Dr. Nick ?
TerryW: I have been so so
craig_h: I've been fairly strong past few weeks :D
craig_h: dang, everyone on the trial is leaving
Butch: I think we are losing a good man to New Jersey.
craig_h: not knowing that much about NIH, is this normal? Most of the main players at the begining of trial are leaving
Chuck entered the room.
Murf: I don't know if its normal but he got a real good job offer
Murf: Hey Chuck
Butch: I have fallen twice in the last week. Only a brused ego. Haven't fallen that much in the last 6 months.
Dart!: What do they do at the NIH?
craig_h: well, can't blame a person taking a better job offer
TerryW: 2 for me also butch
Murf: Ron thats not good
Chuck: Good morning all from West Virginia
Dart!: Sorry about the falls, Butch!
Murf: me too but the new dog tripped me
craig_h: where at in West "By Gawd" ?
TerryW: one of them was when the front part of the foot bends bakwards so my toes touch the top of the foot. I thought I broke it
Butch: Hi Anna Lea. How are you and Chas doing?
TerryW: anyone else have that happen
Murf: I did that before....usually break the foot too
TerryW: I was lucky I guess
Murf: yup you were
Chuck: Butch, can you still get up by yourself??? For your info Craig - Martinsburg, WV
TerryW: flexi feet LOOL
Dart!: Terry, what on earth are you doing with your poor bod?
Murf: I got more wieght falling on my foot LOL
craig_h: oh ok, Southwest Va here, hour from like Bluefield
TerryW: $@&t happens
TerryW: it appears to me that falls foor me sem to happen on a down incline
TerryW: mor than up
Butch: I fell getting out of my scooter. Stood up and legs gave out. Had to crawl back to the scooter and sit on the foot rest to get back to the house. Couldn't get off the ground.
TerryW: wow, sorry butch
craig_h: when I walk on a down incline, I tend to walk it sideways
Alex_Brazil entered the room.
Alex_Brazil has left the room.
Murf: craig_h: I hear ya .. I tend to fall forward
TerryW: I weat anke hightop boots, they give ankle support
Butch: Hi Alex. How are you?
Chuck: I just can't get up at all anymore. I always seem to fall backward.
Murf: too late
craig_h: boots feel to heavy for me to wear. Terry, have you found a light weight boot ?
TerryW: I understand that feeling craig
Murf: I can't wear boots anymore
Butch: Me too Chuck. Usually fall backwards.
MikeG entered the room.
TerryW: they are real heavy for me also. I feel like a deep sea bell diver
Murf: hey Mke
MikeG: hi Murf
craig_h: I used to wearing hiking boots all the time, they just felt good. But to heavy now
Butch: Hi Mike.
MikeG: hi Butch
TerryW: but around here on the uneven property I need the ankle support
TerryW: or my ankles twist
Murf: I'mm bare foot unless I go out then sneakers or sandles
MikeG: same here Murf
MikeG: shoes tend to effect my balance
craig_h: murf ..... last few years I've certainly discovered bare footin' is pretty good way to go
Murf: especially if they have heals
MikeG: it's hard to get a good tight fitting shoe that wont hurt to walk on.
Murf: tough on our Canadian friends though
craig_h: I got a pair of these light weight kind of dress shoes for Church, but they feel kind of spongy
TerryW: I hate it when there are slight dips in pavement that you cant see.
MikeG: go South, my friend
MikeG: 92 in FL yesterday
Murf: I usually get a real close look if I miss them LOL
TerryW: It is strange how a 1/2 inch dip in the pavement can affect us
Butch: Isn't it something that we now have 330 men with KD in the USA. When I found the KDA and Terry there was only 80 men known.
Alexandre entered the room.
Murf: It doesn't have to be that high for me. 1/4" will do a good job too.
craig_h: 330 is all?
MikeG: is anyone here that's part of the trial have any news to report?
TerryW: there are a lot more but some are not registered with us
Murf: I go to NIH next month
Murf: for the 1 year check
craig_h: I go the week of Memorial Day
MikeG: Murf, do you think you are on the real thing?
TerryW: many KDers have relatives that are not registered
Murf: I'll remember you Craig LOL
Dart!: Murf, what will you do there at the 'trial'?
TerryW: that have KD
Murf: MikeG: don't know
MikeG: that's very true Terry.
craig_h: I just dread the one year shock thingie
Murf: Dart!: Keep living as fast as I can!!
Murf: I got a new dog
Murf: and I'm building a pool
Dart!: A high time at the 'trial', huh?
fl-don entered the room.
Alexandre: Good morning all folks! Here is Alexandre Negendank from Curitiba- Brasil . It's my first time in this chat
craig_h: has there been any more word on that Curry thing?
Sammy: The trial mentioned - is that related to Rochester & ASC - J9 (variation of cucummerin)?.
MikeG: hey Don
craig_h: hi Alex
Murf: Alexandre: Good morning and Welcome!!
fl-don: morning all! vegas soon!!!
Murf: Alexandre: Do you have KD?
TerryW: Hi Don
fl-don: hi alex
Dart!: Buesnos dias, Alexandre!!
MikeG: morning Alexandre
Butch: Hi Alex. How are you?
jameson411 entered the room.
Murf: Hey Don & James
TerryW: Hello Alexandre and Jameson
Alexandre: Hello. I intend to go to the conference in Las Vegas
craig_h: hi jameson
TerryW: Great ALexandre
Murf: Terry do we have all the info (registration forms) in the website?
TerryW: Did you all see my e-mail about the anonymous login ID for the forums
TerryW: Yes Murf
fl-don: this site is acting screwy this morning
Dutch entered the room.
Murf: yup but didn't go to the forum .... my bad
Murf: Hey Dutch
TerryW: don, what is it doing
fl-don: slow and non responsive? maybe me or my puter
Dutch: Hi Murf
Alexandre: Terry, are there any news about Dr. Chang's trial?
Butch: Hi Dutch.
Murf: TJ just got a new computer and is trying to login
TerryW: Alexandre, Do you know of our other KD individual in Brasil?
Murf: Alexandre: We will have an up-date at the Conference
Sammy: I found the site was slow when google search was running in parallel. Not bad when I closed Google & just had the chat running.
Murf: Sammy sounds like its time to up-grade
Butch: Sammy--where are you from?
Murf: more memory
TerryW: Alexandre, No new news
Murf: No news is good news
Alexandre: And what about the volunteers tha where trying some medicine from the March of last year?
TerryW: ALexandre did you see my question above to you?
Murf: I still feel better when I loose wieght
Dutch: Hi everyone, I had a hip replacement in Febr /07. I wass blaming a lot of my walking problem on KD.
Sammy: Toronto , Ontario - the great white north - warm & humid today - mid 70's
Murf: A lot of us here are in the trial
Alexandre: About KD individuals in Brasil?
Sammy: Someone mentioned around 330 with the KDA - Dr. Chang's trial note menitoned an estimate of around 4000 in the US??
TerryW: sounds about right
Butch: 330 known to the KDA.
Murf: that 4000 figure and 1 in 40,000 figure I have always challenged but no one can back it up
Murf: we have 330 in the US (we're one in a million)
Alexandre: My older brother has KD too, and my doctor nows some people with KD !
Sammy: So quite a number (4000 - 330) are unsure what's happening with themselves - not good.
Butch: I agree Murf. I think 1 in 40,000 is not a realistic figure.
Murf: I think it was a guess because a lot of people were miss diagnosed
TerryW: Many people that call and write me tell me that they have 2-4 relatives that have KD but are not registered with us. they get their info through the one family member
TerryW: that is registered
Murf: We have now had 4 Labs studying KD and you think we would have heard if 330 was inaccurate
fl-don: terry, judy and i will be in vegas on friday nov 2. can help if you need it
Sammy: Are there many women involved with KDA - that are carriers?
Murf: we may be more that 330 (I agree with that) but way less than 40,000
fl-don: wont leave till friday nov 9
Dart!: Don't you think that many don't register because they refuse to admit that they are imperfect - are in denial!
Murf: TJ & I will drive up and arrive Sunday
Murf: Dart!: Correct!!
jameson411: do you mean register with KDA?
fl-don: i think some dont register due to insurance and family reasons
jameson411: or does register mean confirmed diagnosis?
Murf: register with the KDA with confirmation
TerryW: Registered with the KDA with a positive diagnosis
Dart!: If all that thought they have something like this surfaced, perhaps the government and organizations would see the need to fund research.
Bruce entered the room.
Murf: Hey Bruce
MikeG: morning Bruce
Bruce: Morning, sorry I am late. Walking the dog....
jameson411: My doctor in CT, who "specializes" in KD, and has several patients doesn't even know about the KDA.
jameson411: several KD patients that is....
MikeG: or was the dog walking you?
TerryW: Hi Bruce
Butch: I have a cousin that I am sure has KD but refuses to be tested and doesn't want to know if it is KD.
Murf: Send him a flyer
jameson411: send my doctor a flyer?
Murf: you can find them online
Sammy: Many general practitioners/ specialist's that I have seen have no knowledge of Kennedy's. The usual response is - related to a US president?????
MikeG: send him the URL
fl-don: i have a cousin that has been diagnosed with kd. will have nothing to do with kda. i feel it is his loss!
Murf: Sammy: most people do
jameson411: darn JFK.... this is his fault!?
Butch: Hi Bruce....How are you?
Bruce: I have found that you often need to add, "also known as Spinal Bulbar Muscular Atrophy" to these type conversations.
Sammy: I agree Bruce.
Murf: jameson411: Gene was discovered by Dr. Kennedy
Bruce: Doing well, thanks for asking. How are you?
jameson411: l know... it was a bad attempt at humor
Sammy: Good humour Jameson - gotta have a sense of humour with this thing
jameson411: two peanuts were crossing the road... one was a salted.
MikeG: most of the younger crowd relates it to the Senator...
jameson411: thats as good as it gets with me...
MikeG: not the President
Murf: ya he got salted.
Murf: the Senator
Murf: bloody peanut
jameson411: so KD has something to do with No Child Left Behind then....
Murf: sorry all
jameson411: is there a discussion topic this week?
fl-don: peanuts i think
Murf: what ever you want
Murf: fl-don: LOL
TerryW: Open FOrum
jameson411: snoopy is so funny
Murf: My fingers have a mind of their own too
Sammy: Someone should mention Kennedy to dubbya, if he could blame it on JFK, he would probably run with it and give it some exposure....Sorry, the Canadian in me speaking....
Bruce: Did anyone mention that Dr. Taylor's most recent research paper is being published this week in Nature Magazine. We should receive a copy of the paper in about a week or two. It reflects some promise.
Murf: Sammy: Don't appologize I'm Canadian still for a while
jameson411: for the past month or so, i find myself in fear of tripping whenever i walk. It is a strange feeling to be off balance whenever I change direction.
Murf: jameson411: Welcomr to KD
fl-don: sure gladi'm not canadian
jameson411: ty ty
Murf: ok Don LOL
Murf: I'm A Canadian Texan at the moment
jameson411: i haven't fallen in public yet.
Dart!: 'Tis better, and more advantageous, to have the fear of falling BEFORE, than after the fall
Sammy: Jameson - I have a fair bit of walking to do each day - regular stops because of pain in feet & to allow nerves to catch. I find a hiking stick/ cane helps my confidence & balance.
Murf: jameson411: you will we all do
MikeG: I've got to go. Take care everyone. Until next time, try to stay vertical and remember to lock your knees...
MikeG has left the room.
Butch: texan first though--right Murf?
Murf: see ya
Bruce: Balance problems are an issue that increases with age. Safe exercises are very important and can help with your balance issues by keeping the motor neurons firing.
fl-don: i walk in an exercise pool, 2 hours a day. if fall, no hurt
Murf: You got that right Ron
jameson411: about a week ago, I discovered the joy of using a walking stick when hiking with my wife and dog.... it helped tremendously.
Murf: fl-don: I'm building an endless pool for just that
fl-don: u will love it
jameson411: how about swimming?
Murf: I think so
jameson411: anyone swim?
TerryW: Murf, How is TJ?
fl-don: too weak 2 swim
Murf: I'm going to try a little
Bruce: I use to, but couldn't get out of the pool afterwards.
Sammy: I picked up a collapsable hiking stick - I believe it's "Outbound". Great for tucking under a seat on commuting train.
TerryW: I swin only when throw overboard
Murf: I used to be a Canadian fish LOL
TerryW: Actually I swim at the lake off our boat
Murf: By Susanne?
fl-don: have chaIr lift to get me in/out of pool
Sammy: Which lake in Canada Murf?
Butch: I swim and run in the pool regularly--Hope I can get out of the pool OK this year.
Murf: All over Sammy but mostly in Alberta
Butch: LOL Terry
jameson411: are there other exersises any of you can recommend?
Murf: Butch: I knew it Susanne throws Terry out of the boat
jameson411: I guess this is not an active group...//1
craig_h: I do excercises with rubber tubing, like wrap around ankle, stick other end in door and do kicks. Lots of excercise can be done with those bands
craig_h: I learned all those excercise in recent physical therapy. I've been walking much better after doing those
jameson411: anyone do speaking/tongue exercise (....not in a kinky way)
Murf: Alex: you will like the conference because you don't have to read english very fast....sorry
jameson411: good to know craig... always looking for ways to improve
Sammy: I picked up an elliptical a few months ago. Used to be able to cycle 100 miles per day when a teenager. 5-10 minutes on elliptical - 1 or 2 times a day is challenging now - seems to help all the same.
Bruce: We have an exercise guide on the web site (PDF format). It gives some beginner exercises, but can be modified to suit your ability. One great balance exercise is to twist your upper body from one side all the way around to the other. YUou should hold onto something for support. Do 10-20 of these to start and hold at each furthest position. As you twist, move your weight to the foot that you are twisting towards. It is a great exercise and can really help improve your side to side strength especially when changing direction.
Bruce: Ref tongue and throat exercises, they are also found in the guide. I practice them every day and have found them to be very beneficial.
Murf: Bruce: we can tell
Murf: just kidding Bruce LOL
fl-don: at national institute of health, they told me to chew gum to exercise throat and improve speech clarity
Murf: you know we love you
Dart!: Thanks a bunch, Bruce - I will look into those, as 'beneficial' sounds good - I could use some of that.
Sammy: I picked up core sculpting weights for pilates & a pilate ball - weights/ elastics help with shoulder & core, the pilate ball helps with core strength.
Murf: Lots of good stuff on the website
Bruce: Since I started this new exercise routine about a year ago, I actually feel stronger than I did before my last two falls.
jameson411: i would love to retire a teacher... but I feel like the way this disease is progressing, I won't be able to walk or talk in 5 years.
Dutch: Here is the rest of my earlier note: I feel much better after my Hip replacement and a lot of rehab. I started walking without a cane again.
TerryW: Bruce has a new updated Smart Exercise guide that I am going to put on the web site
jameson411: which makes interacting with 100 students a day rather difficult
TerryW: It will be on the site by Monday
Murf: jameson411: that would make my engineers happy
TerryW: maybe even today
Murf: Thats great Dutch!!
jameson411: for you old timers, were there months or years where you felt that the KD symptoms did not progress?
Bruce: One common thread between all neurologists that know KD is that they now recommend regular exercise including those influenced by the bulbar.
TerryW: yes Jameson
jameson411: good to hear
TerryW: 6 months max
fl-don: yep jameson, years
Bruce: Yes, I still go through phases of no new issues and then it progresses again.
Chuck has left the room.
TerryW: it is so strange how it differs for different people
craig_h: y'all have good health until next time.
Murf: Yes me too seems to go in sperts
Bruce: Take care
jameson411: you 2 craig
fl-don: different strokes 4 different folks
Sammy: The regular exercise - something every day - I find is very important. If I miss, I really notice the pain the next days & challenging to catch back up.
Butch: Stress really takes its toll on us with KD.
craig_h has left the room.
Murf: It does a big one on us Ron
Murf: How are you doing?
fl-don: u all take care, ya hear
Murf: Take care Don
fl-don: nap time
Butch: I have gotten worse since Mary Lou was diagmosed with cancer.
Bruce: I've got to run. Take care everyone and stay upright!
Bruce has left the room.
fl-don has left the room.
Sammy: All the best folks - gotta head off here - till next time, keep well.
Murf: Say hi to her for us
Butch: So long Bruce.
TerryW: good chat all,
Murf: see ya Sammy
Sammy has left the room.
Dutch has left the room.
Murf: You go this Terry?