Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"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


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
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 : 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
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
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 it is the Missile Defense Agency
murf : CYA Terry
murf : CT_jameson I love ya man !!!!
Darwyn : lol
CT_jameson :
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.