Kennedy's Disease Association

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"I had just been diagnosed with Kennedy's Disease and had no idea what it was or what to expect. The KDA maintains an excellent website that explains the disease. I found details on symptoms, the cause, and exercises I could do to maintain my strength."

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Kennedy's Disease Chat Transcript  08-02-2008

Topic:  Open Forum

Host: Murray Williams


BEGIN CHAT

murf : morning Darwyn
Darwyn : hi murray
murf : How are you doing?
terryw : Hello
murf : Hey Terry how is that fire?
Darwyn : " i'm alright, yourself?"
Darwyn : hi terry
murf : I'm ok trying to swim every second day
terryw : it is all under control
murf : Good to here I bet you were nervous for a while
terryw : hi Darwyn
terryw : for a bit Murf
Darwyn : cool.   i wish
terryw : Taking a vacation to the coast this week
murf : WHat about the underbrush around your place?
terryw : Our bruch is cleared
terryw : brush
murf : Darwyn - you don't have to worry about brush fires
terryw : he horses give us a wide clearing and the rest is weed whacked
terryw : hi SH
Darwyn : not anymore
murf : Hey SH
murf : Me either
murf : My subdivision has lakes full of water LOL
murf : SH are you new?
murf : Darwyn - are you going to Baltimore this year?
murf : Hey poo
terryw : hi Pooh
murf : you guys need coffee?
Darwyn : "no, can't travel"
terryw : I just woke up
Darwyn : be right back
murf : We're going to miss you this yr
terryw : I will be getting my Cpap soon
murf : Hey Mike
MikeG : hi Murf
murf : Terry - I need mine re-adjusted
terryw : "hi Mike, TJ"
murf : Hey trail
TRAILBLAZER : Hello
poohsdaddy : "Good Morning; very slow today--signed on earlier,but had to lie down for a quick nap"
MikeG : "hi Terry, TJ"
terryw : Mike they are going to get me that CPAP but they have to retest me in a sllep study sine it has been 4 years since I had the last Cpap that I turned back in
TRAILBLAZER : Hi Mike
TRAILBLAZER : I just got a new Bi-pap
murf : Terry - I'm on my third machine
MikeG : good - you'll fell so much better after you get it!
terryw : I am hgetting the Nasal mask
terryw : typos
murf : That's the mask I have too
TRAILBLAZER : don't care for it myself
terryw : I hope it helps with the choking especially when I get sick
murf : Hey Jamies
CT_jameson : hey all!
terryw : hi ct
Darwyn : i recommendbipap
poohsdaddy : "I'm still on the trial med, but no machines as yet.  Something to look forward to ???"
TRAILBLAZER : Did anyone else see the article published by the Salk institute on ALS stem research
murf : The dems just left for a 5 week holiday without voting for the gas price
terryw : I am not sure if it is a CPAP or BiPap I cant remember what she said
Darwyn : cpap too hard to exhale
terryw : its a bi-pap then
terryw : I had same problem
terryw : exhaling
TRAILBLAZER : Your right Darywn
murf : Gas will go to $5 by Nov and the repulicans will get the blame
murf : Hey Gary
TRAILBLAZER : Say that again Mike
FL-DON : GM ALL
terryw : Hi Don
Gary_KC : Good morning. This is Gary Uchiyama. It is hot weather in mid west today.
CT_jameson : "from the onset of KD, how long before you needed a mask... question for any/all"
TRAILBLAZER : No one else saw that they duplicated ALS in mice using stem cell research - was announced Thursday
Darwyn : yes i have nassel & full face
murf : Just do a sleep study if you are tired you probably need one
TRAILBLAZER : Normally you need a machine if you have sleep apnea
terryw : ct I got one about 10 years after but turned it back in because It was not working for me real well so I put it off for another 4 years
SH : "Hello everyone. Yes, I'm new to the chat room. Took a few minutes to figure out how to navigate this session. It's different than what I am used to."
CT_jameson : hi SH
murf : It's not a KD thing
FL-DON : "terry, i am all set for conference"
poohsdaddy : "I use a single point cane for walking, but no other devices at this time."
terryw : I am basically getting one now because of the times when I am sleeping and my throat gets those dry drowning episodes
murf : SH - we all started where you are no problem here.
terryw : cook don
terryw : cool
FL-DON : amtrak
terryw : my fingers are bad today
murf : Pooh - lucky man ... i remember those days
terryw : ct you may not ever need one of the bi-paps
TRAILBLAZER : my throat has really been filling up with mucas lately chocking me quite a bit
CT_jameson : oh
terryw : never
murf : Mine too TJ for yrs now
FL-DON : "trail, i got the same problem here in fl.  grass and mold "
murf : Hey Jim
terryw : hi jim
TRAILBLAZER : probabaly so Don
MikeG : you been eating a lot of hot stuff TJ?
poohsdaddy : "I wake up coughing frequently, but feel much better after I get up and get moving around. "
terryw : hi richard
TRAILBLAZER : No
MikeG : that's what does it for me
murf : poohsdaddy you need to do a sleep study
TRAILBLAZER : "Doesn't matter what I eat, especially popsicles"
terryw : they are going to have me do another 3 night Home sleep study
terryw : I take the equipment home
MikeG : I cough and hack for hours after eating hot peppers...
TRAILBLAZER : why 3 nights and why at home
terryw : Mike stop eating Hot peppers
murf : terryw how do you get all those probs hooked up?
terryw : Especially Tainted ones
MikeG : they're too good to stop..
MikeG : :)
TRAILBLAZER : never heard of that Terry
terryw : they pre wire me murf
murf : Wow
TRAILBLAZER : Who monitors it while you sleep
terryw : a machine
terryw : computer
murf : AND YOU LEAVe it on for three days?
MikeG : pretty neat Terry
terryw : only at night
MikeG : Paula had to go in to their office - very hard to sleep there...
terryw : the probes are taped to me
murf : oh they used glue on my head
TRAILBLAZER : Your canadian HAH
murf : glued them on
terryw : this time they are only monitoring pressure
murf : the probs
Darwyn : i use bipap 24/7 now
dsproul : what's everyone doing thid mouning
terryw : sorry Darwyn
TRAILBLAZER : Hang in there buddy
murf : We all Darwyn
terryw : "dsproul,  chores"
MikeG : is the bipap that much harder to breath with?
dsproul : can I help?
TRAILBLAZER : it's much easier
murf : CPAP is harded
murf : harder
Darwyn : i can't breath for more than an hour without it
MikeG : oh - thought it was the opposite
MikeG : that's what Len uses
murf : BIPAP reducese the pressure when you exhale
MikeG : oh - ok
poohsdaddy : Still trying to catch up with my rest from very busy weekend last week (son's wedding!!!!)
murf : CPAP same pressure
murf : BI - 2
murf : or gay
murf : LOL
terryw : "my first unit was a CPAP that had constant hard pressure that stepped up a level every 5 mins until it reached a certain level, it was a full nose & mouth mask.  I had a very hard time exhaling and when I turned m,y head the mask would leak and sound like air rushing out of a tire"
Darwyn : "if i didn't have bipap, i would have to get trache"
murf : DAM
terryw : the new bi-pap senses when you exhale and drops the air pressure so you can
MikeG : "Terry, that is what Paula is using."
MikeG : Good for her - bad for us.
terryw : smart technology
Jim M : This is the first time I've used this chat.  Let me know if I'm doing it right. I'm not even sure that I have SBMA. My neurologist thinks so. He set me up for a test. I am 71 years old and only recently came down with any of these symptoms.
terryw : you are doing fine Jim
murf : Darwyn when did you need this? is it just in the last yr or so?
MikeG : Jim M - you can get a generic blood test to be sure.
poohsdaddy : Any news from Kelly about his brother??
murf : Jim you can't do it wrong
dsproul : "Jim, sounds like late onset lkie me"
terryw : "I have not heard from Kelly, I need to e-mail him"
Darwyn : i started bipap june 07
TRAILBLAZER : Well gotta run all of you have a nice day (every day)  TJ
terryw : see ya TJ
MikeG : cya TJ
murf : CYA tj
murf : take care
terryw : we are going to take a short vacation to the coast early monday
Darwyn : in the last month i've had o go full time
murf : Jim your lucky - my symtoms started at 30
terryw : I will be gone until Thur
MikeG : iJim M - if you are just now noticing symptoms at 71 you're doing a lot better than most of us!
dsproul : Hows everyone doing with theit scooters?
poohsdaddy : "Jim, they'll do testing to be sure if it's KD(SBMA) or something else.  The support and information here is of great help."
CT_jameson : "murf, mine too... around age 30"
murf : Darwyn - how long have you had symtoms?
MikeG : dsproul - I need batteries in mine
terryw : "dsproul, are you registered with the MDA as having KD, if so they will pay for batteries"
Darwyn : they can't measrbreathing or kd?
murf : Jim 30 first I noticed and @ 52 I'm still going ... just not as fast
Jim M : I first went to the neurologist because of hand trembling.  a couple of months ago my voice started becoming very nasal. I started coughing while eating and liquids often come out of my nose when I drink.
SH : My symptoms started about age 35. I'm 56 now
dsproul : "I got  a Hoverround, big mistake!"
MikeG : :(
terryw : "dsproul, are you registered with the MDA as having KD, if so they will pay for batteries"
MikeG : "Terry, where are you guys going?"
terryw : up to $500 per year chair maint
Darwyn : hd was noticed fall of 2004 at 39 years
Darwyn : kd
poohsdaddy : My difficulty probably started whwn I was mid-40's; diagnosed about 2 years ago and got into study at NIH.
terryw : hi Jb
jbherndojim : good morning
murf : dsproul  I have two Invacare and one Pride . I like the invacare
MikeG : "Terry, you going surfing??? :)"
terryw : I have had my Jazzy chair now for going on 8 years
terryw : I wish I could surf
murf : You'd get eaten by a shark LOL
terryw : I cant even walk back out of the water at the beach I fall down due to the sand and losing balance
murf : I can't walk
murf : 10 -15 ft now
MikeG : same here
Darwyn : i've proggressed to the point that i'm now under palliative care
terryw : I roll around in the surf on the shore looking like a beached whale until someone comes to help me
terryw : I cant get up
MikeG : need a water-chair
terryw : yeah
MikeG : with an anchor
SH : I feel fortunate. I still walk pretty good.
jbherndojim : lol...went tothe pool with my kids and made the mistake of sitting in one of those low lounge chairs
murf : Darwyn I've been thinking when I'm going in your direction. I think I got another 4 yrs
Darwyn : with health care aid 6 to 8 hours a day
jbherndojim : was stuck there until my wife came to help me out
terryw : Hi Kelly
dsproul : yea I went out a bought aLynx L-3 it's a lot smaller and a lot cheaper and doesn't vear off unexpectidly.
murf : Hey KLelly
KellyC. : Hello
terryw : just asking about you
terryw : how are you
MikeG : SH - how old are you?
SH : 56
KellyC. : I'am feeling alot better now
terryw : did you get any results Kelly
KellyC. : ty
MikeG : great!
KellyC. : not yet hopefully mid august
MikeG : I was having a lot of difficulty at 56
terryw : ok
terryw : you doing Ok otherwise
poohsdaddy : "Then, I must be the lucky one today--as I can still walk short distances and figure ways to get up after falling."
KellyC. : I have my ups and downs
MikeG : do you know what your CAG repeat seq is?
murf : Good to see you Kelly
KellyC. : ty m urf
murf : only 48 here
jbherndojim : have any of you known of men showing symptoms in their 20s
Darwyn : I wish they new why my kd is so aggressive
murf : yes we have a few
murf : Me too bud
murf : I feel better when I use the pool
jbherndojim : "I am 39, but have a brother who is 24"
jbherndojim : he is having cramps in his face and hands and arms and stomach
dsproul : Any body have swollen feet and tinglingin toes and feet? started when I was about 70
MikeG : jbherndojim - I remember Air Force boot camp at Lackland - I had a hard time with the horiz ladder - kept falling... now I know it was the first symptoms of KD... I was 19.
murf : We know more now than we did 20 yrs ago so we will probably find more in the 20's
KellyC. : yup my brother kelvin had alot of choking spasms as for me the same but not as bad as him...
poohsdaddy : "Yes...2 distant cousins sons were diagnosed with ALS several years ago, but recently changed to KD after more testing."
murf : dsproul  yup pick me
Jim M : Do any of you know about men who first showed symptoms in their 70's or late 60's?
murf : MikeG that's early
terryw : yes many Jim
dsproul : "Jim yes, my brothrt and I"
murf : & John C I think
MikeG : "dsproul - yes, I have swollen feet sometimes.  Ankles too!"
dsproul : I when skiing when I was 68
Jim M : Do the symptoms develop faster in older men or do they progress at the same rate in everyone?
murf : MikeG me too but I break my toes & feet all the time
dsproul : Any treatment? for feet?
KellyC. : Jim every one is differant with the disease
murf : It's different for everyone
poohsdaddy : "My older brother refuses to test for KD, and says he's got fibromyalgia."
KellyC. : clinical varies among us
MikeG : "Murf, yes that was early but it was only in my hands then... I could still run good - and did 10Ks till I was in my mid-30s..."
Darwyn : "my feet swell also, very sensitive but no tingling"
murf : Thats maybe what they might find in Bathesda
poohsdaddy : Younger brother and nephews have tested negative for KD.
murf : MikeG ok me too but I thought it was too much coffee
dsproul : My brother was diagnosed with ALS until my dr. got in touch with him
murf : hey DART
CT_jameson : hi Dart
terryw : hi dart
jbherndojim : any tips on how to find a knowledgeable neurogolist?
murf : Where do you live?
terryw : JB wehavea list on our website
terryw : have
terryw : under KD doctors
CT_jameson : my neurologist thought that KD would not effect my walking... can you believe that?
Dart! : Hello Everyone - Sorry to be late!!
terryw : left side menu
KellyC. : yup i can belive that...
jbherndojim : I keep getting kicked off
murf : CT_jameson  change docotrs LOL
SH : I've had to educate every Dr. I've ever met on KD.
Darwyn : my brother 39 now has calf cramps but won't gettested
KellyC. : me to
MikeG : murf - coffee is good - I just got me another cup of French Roast/Columbian
terryw : JB  are you on a dil up connection
terryw : dial
murf : SH Join the club
terryw : or DSL or cable
jbherndojim : "no, piggybacking on someone elses wireless"
murf : MikeG  no thanks I've already had 3
murf : LOL
poohsdaddy : "I got the referral from my PCP; and checked with the Medical college of WI before 1st visit, testing, and diagnosis."
terryw : that may be the cause
jbherndojim : k
CT_jameson : "jb...when i drove cross country last summer, i had no problems finding wireless signals for my laptop"
murf : cool
CT_jameson : "hotels, neighborhoods... they are everywhere"
murf : I love this country
CT_jameson : just park and surf
terryw : JB we have a list of doctors on the KDA website under KD doctors on th left side menu
Dart! : Compression stockings as prescribed by your doctor helps with the swelling feert problem!
dsproul : At this age I'm dooing more and more riding and less walking
FL-DON : me2 ds
CT_jameson : me 2
murf : dsproul I do that when I sleep
terryw : JB we have a list of doctors on the KDA website under KD doctors on th left side menu
CT_jameson : lol
Darwyn : unreal how mny don't hav security
CT_jameson : "about 50% of the time, signals had security."
dsproul : Ha! what's sleep?
Dart! : FEET!
murf : Darwyn no kidding ... good luck getting online around here LOL
CT_jameson : but lots of locations had several signals
MikeG : at 60 I'm trying to avoid the chair as much as possible... causes much back pain though...
CT_jameson : I'm resisting getting a handicap parking permit
poohsdaddy : My neurologist did a lot of research to get the information about KD to try to help minimize symptoms  and falling.
KellyC. : Any men in here that are over 55 and still smoke tobacco?
murf : I bank online so I have to be secure
dsproul : MikeG amen to that!
FL-DON : any news from bethesda?
SH : Yep
MikeG : same here - I've taught all my neighbors about no SSID broadcast and WPA-PSK
murf : KellyC. TJ
terryw : ct you should get one
murf : he's 52
CT_jameson : i'm in denial
Jim M : My PCP referred me to a neurologist who ordered the tests and is referring me to another neurologist for a second opinion. I live near Sacramento CA I didn't find any nearby doctors listed on the KD website.
KellyC. : ok ty murf
CT_jameson : i'm not handicap ;-)
Darwyn : same here murf
dsproul : Never smoked
murf : CT_jameson me nether
terryw : ct we are just challenged
FL-DON : jim  try the mda clinic
murf : my chair does 7 mph
CT_jameson : challenged horizontally... and vertically...
murf : LOL
terryw : yes
Jim M : Where can I find an mda clinic?
Darwyn : ;)
CT_jameson : I can still walk several hundred feet without to much difficulty
poohsdaddy : "I don't consider myself as disabled"",  but more as challenged or ""with restrictions and limitations""."""
terryw : Jim there must be a liston the MDA website
KellyC. : so it wont be to long before we know about the KD-trial hey?
CT_jameson : "Jim, go tothe mda website.  They have listings there"
murf : Jim - online under Muscular distrophy ass
FL-DON : "yup, web site"
jbherndojim : "I found two on the dr list, but neither is the one who had me tested and confirmed KD...I think I going to switch"
terryw : ok
dsproul : At 81 I'm ready to sign up for a trial
CT_jameson : "ya, how can i get into a trial?"
Darwyn : i was refered to ALS clinic by neurologist
murf : KellyC. another 4 months maybe.  We will have many docs from the trail at the conference talking
Jim M : "Thanks for the suggestion, I'll check out the mda website.  "
KellyC. : oh ty Murf...
terryw : "I need to go,  I will talk with you all again soon"
murf : dsproul they are talking about another trial already
Darwyn : bye terry
dsproul : where?
KellyC. : tc terry
poohsdaddy : "Social Security has said I am disabled, but I really would like to continue working or return to work very soon."
CT_jameson : don't go to mda.mil... it is the Missile Defense Agency
murf : CYA Terry
murf : CT_jameson I love ya man !!!!
Darwyn : lol
CT_jameson : mda.org
Jim M : "dsproul, you say you're 81? How long have you had kd?"
FL-DON : what is this chat room floating crap?????
murf : FL-DON huh?
murf : floating?
CT_jameson : clean your screen...
dsproul : Jim I was diagnosed at about 68
FL-DON : "i gort a message that the room is loating""???"""
jbherndojim : Fl-don what?
murf : "FL-DON gee, I never got that one."
Darwyn : jim i usually say all my life but known fo 2 years. ;)
jbherndojim : I'm not sure what that means
murf : Darwyn you only got diagnosed two yrs ago?
Jim M : "dsproul, Did you have  symptoms long before you were diagnosed?"
murf : FL-DON if you can still type I think your ok
Darwyn : feb. 06
murf : DAM
KellyC. : on the box there where it says online if you clik it.. it say floating? i just did that lol had to go back lol
dsproul : "Yes, smsll pains inmy left thigh and sme twitching"
Darwyn : awsome eh!
murf : are you sure you don't have ALS Darwyn?
KellyC. : clik the arrow dn
Darwyn : they say not
Dart! : "Darwyn - you are probably correct - on thinking back, I think that I showed indicators going back to childhood."
MikeG : "Don, there are two browser windows that open during the chat.  Use the one that says KD chat - not the floating one."
murf : I hope not
FL-DON : k
KellyC. : so dawyn hows ur health so far? can u still walk?
Darwyn : i'm not so sure tho
MikeG : but don't close the floating one!
MikeG : JAVA...
Darwyn : bed and wheelchair only kelly
dsproul : I really think the Mind-Over-Matter thing works best
KellyC. : gosh sorry to hear that darwyn
dsproul : try it it just might work
Darwyn : no legs at all
poohsdaddy : "My symptoms started about 7-10 years ago; and were attributed to arthritis in hips.  Finally tested for KD Dec '04; confirmed Jan '05. NIH study of dutasteride first visit Oct '06.  21 months so far.  Final visit set for Oct 8"""
jbherndojim : Are there any medications that help slow the progression?
murf : not yet
FL-DON : beer
murf : LOL
murf : that makes my legs wabbly
Darwyn : pooh i also started oct. 06.  but they pulled me out
CT_jameson : because of your rapid progression?
jbherndojim : 8)
murf : I used to use scotch but found that was not it either
Darwyn : "as a precaution. rapi progression, yes"
poohsdaddy : "I believe in the multiple approach --- Diet, exercise (physical Therapy) and Medication (Prescriptions & Supplements)."
CT_jameson : how did you find a physical therapist?
jbherndojim : I'm not sure I can sell my wife on alcohol for the medicinal value
MikeG : good idea
Darwyn : preferrum murf
murf : This is improtant
Darwyn : rum
murf : LOL
murf : must be a Canadian thing
murf : not rye?
Darwyn : dark is best
murf : you must be from the coast Darwyn
CT_jameson : i'm a wine man myself.
murf : Yo ho ho
jbherndojim : poohsdaddy how did you go about finding a pt
Jim M : "I used to enjoy drinking beer, but now i have to be careful so it won't come out of my nose.  It's not as enjoyable any more."
CT_jameson : not whine... wine
Darwyn : north thing
FL-DON : "time 2 go, tc all, bye"
CT_jameson : by don
murf : jbherndojim MDA can help with that too
FL-DON : c u in balt
MikeG : cya Don.
murf : Cya Don
KellyC. : I got to go to bye friends god bless u all..........
CT_jameson : "ty kelly, u2"
dsproul : "me too, back is aching. bye"
Darwyn : jim it is too bubblie
murf : dsproul Take care
poohsdaddy : "My physical therapist were recommended by my Primary Care Phusician (PCP) and neurologist.  Also, they're nearby--- and allow me to use the equipment at my own pace as needed or tolerable."
CT_jameson : ty
murf : Good you don't need to ware out
MikeG : poohsdaddy - Are you doing any better since you got into the trial?  Do you think you're on the real stuff (dutasteride) or the placebo?
CT_jameson : hardware or software?
CT_jameson : "sry, that was dumb"
Darwyn : "i was on real drug, but not long"
MikeG : me2
murf : CT_jameson no it wasn't he he
Jim M : "This chat has been helpful, but very confusing also.  I have only tried chat rooms a couple of times and I never could follow what was going on. Adding the name of the person you are responding to helps me to follow the conversation."
murf : Darwyn did they tell you?
CT_jameson : "Jim, your right"
MikeG : several had said they felt better on it but I didn't think so... we'lol see.
Darwyn : yes murf
murf : cool .. i think
poohsdaddy : "I think I am getting the real thing due to some of the side effects that I've experienced--such as the fantastic headaches, nausea, and frequent diahrea. Tums and Pepto help with that as well as periodic Tylenol."
MikeG : "yes, Jim - it has been going much faster than it usually does.  "
CT_jameson : "ok all, see ya next month..."
Darwyn : they  had o find out a a precaution
murf : CT_jameson Take care
CT_jameson : stay vertical
Jim M : "Mike G, Well, I'm going to check out the mda website. Do you have these chats every othe Sat. morning?"
murf : I need to lay down too
MikeG : every other Sat.
Darwyn : and possible cuses of my speed of progression
murf : !st & 3RD sat of every month
MikeG : check the website for schedule
murf : Cya all
MikeG : "tns, Murf"
MikeG : bye
Jim M : Thanks to all of you. I'll be back.
jbherndojim : I'm going to sign off too....see you all and thanks
Darwyn : bye
MikeG : gotta go - you guys can stay on as long as you wish - no limits... anytime of day or night.
Gary_KC : I'm going to sign off too. Bye all.....
Darwyn : till next time bye all
Dart! : Thanks All - watch out for sudden changes in the direction that you are travelling - they can be a killer!
poohsdaddy : I find it very helpful; in knowing that I'm not the only one with KD.  Thanks to all.  Back on 16th.  Bye for now.
SH : I'm signing off. Chores to do. It's been interesting.


END CHAT