Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

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Kennedy's Disease Chat Transcript  05-19-2007

Topic:  Open Forum

Host: Terry Waite



PA-PAUL: hi terry

TerryW: Hello

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

Murf: Morning

craig_h: thanks

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

PA-PAUL: bye

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: What?

TerryW: bathroom

TerryW: lol

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

Murf: yup

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

TerryW: Ankle

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

Murf: Mike

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

MikeG: :)

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

TerryW: relatives

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?

Dart!: Buenos!!

jameson411 entered the room.

Murf: Hey Don & James

jameson411: morning

TerryW: Hello Alexandre and Jameson

Alexandre: Hello. I intend to go to the conference in Las Vegas

craig_h: hi jameson

Murf: Great!!

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

Sammy: Indeed.

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?

TerryW: yes

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!!

TerryW: thanks

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: Yes

Murf: register with the KDA with confirmation

TerryW: Registered with the KDA with a positive diagnosis

Murf: ditto

Murf: LOL

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: yes

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?????

jameson411: sure

MikeG: send him the URL

jameson411: lol

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

jameson411: :-|

Butch: OK!!

Sammy: Good humour Jameson - gotta have a sense of humour with this thing

jameson411: two peanuts were crossing the road... one was a salted.

Murf: LOL

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.

jameson411: lol

Murf: the Senator

MikeG: yep

Murf: bloody peanut

jameson411: so KD has something to do with No Child Left Behind then....

Murf: sorry all

Murf: //11

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.

jameson411: lol

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...

jameson411: by

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?

jameson411: ?

Murf: Butch: I knew it Susanne throws Terry out of the boat

jameson411: I guess this is not an active group...//1

Murf: LOL

Butch: LOL

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

jameson411: nice.

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

Bruce: LOL

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

jameson411: lol

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

TerryW: months

jameson411: good to hear

TerryW: 6 months max

jameson411: ...

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.

TerryW: yes

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?

TerryW: yep