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."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Host: Terry Waite    
TerryW   Hello
TerryW   Hello Ted
TerryW   Been a long time.  how are you
TedA   Hi Terry.   Happy New Year
TerryW   you also
TedA   Doing good except for a head cold that I have had for a week
TerryW   A bit cold for sailing eh?
TerryW   Everybody is sick over here
TerryW   Hi David
david   Good morning from the frozen midwest
TerryW   I am not sick
TerryW   David I could not deal with that cold weather
TedA   14 degrees this morning.   Suppose to be single tonight
TerryW   terrible
TedA   Nice 68 indoors!
TerryW   same here
TerryW   Hi Gary
Gary_KC   Goog moring. This is Gary.
Gary_KC   Hi Terry.
david   Terry I understand you might not have the option to just remain indoors and look at the "pretty" snow.  It is bright and sunny today so I might verture out, but with sub-zero temps forcast for Mon-Tues no outside adventures those days.
TerryW   yesterday it was in high 60's so I was outside quite a bit
TerryW   On Monday I have a Nuclear stress test on my heart
TerryW   Hi Ys115
TedA   In Virginia it can snow one day and be 70 the next day
ys115   hello everyone
ys115   happy new year
TerryW   I hope so YS
ys115   anyone on the east coast?
TerryW   Has anyone had one of these tests
TedA   Never heard of the test
TerryW   Because we cant do the treadmill thing the inject a chemical that will cause myheart to race
david   Terry I've had a stress test but it was not called nuclear, mine was years ago on a treadmill -- not fun
TedA   ys115 I am in Richmond VA
TerryW   So, what else is now.  I have not been in chat in a long time
TerryW   new
Gary_KC   Terry, I heard Dr. Sobue group is planning Creatine for SBMA this year.
TerryW   I have not heard that.  Maybe I missed it
TerryW   I miss a lot of things lately
david   For the last chat Mike used the anymeeting webinar software as a followup test to our conference experience.  It worked well for those who had a headset mic/earpiece.  We might use it again as a separate gathering opportunity for sharing experiences.
TerryW   Yes,  I heard that.
TedA   Any news on when the next Clinical Trial will strat at NIH?
david   I think the NIH has taken the next approval step toward a 2014 clinical trial to test some potential treatment
TerryW   I think real soon.
ys115   This is my first time in the chat room. Was hoping to get some advice.. A family member was recently diagnosed with kennedy. He lives in New York and his dr doesn't know anything about this. any ideas of how to find a dr that does?
david   There is a listing of doctors by state with KDA experience on the KDA website
TerryW   We have a list on the website of doctors that know about KD by state.  let me see if I can find the link.
david this link should work
oneredlite   Hi Everyone, Its John Lee
david   Hi John Lee
TedA   Hi John
TerryW   David you are quick :)
ys115   Hi John Lee! Davdi - thank you.
ys115   though strangely enough, there is no one in New York
TerryW   got knocked out of chat
david   There is likely a MDA clinic in his area and while I have not used their services others have mentioned getting good advice and referrals for doctors
ys115   ah, interesting, I did not know about this. thank you
ys115   what else have people found helpful?
oneredlite   I also have my stress test on treadmill for baseline on my heart condition. Its cleared. I have my liver biospy done too, show some borderline fatty liver, pain lasted 2 weeks though.
TerryW   The KDA website has quite a bit of useful info
david   When I first started researching KD I spent a lot of time on the KDA website and used much of that information to have discussions with my doctors and therapists
TerryW   ouch
ys115   do you find the exercises on the KDA website helpful?
TedA   When the Dr finially got the correct diagnoses I used the MDA Clinic.    Now I am using the VA since I am a vetearn
david   John one of the NIH doctors mentioned an observation they made about KD participants in the exercise trial and there being above average tendencies for fatty liver.  Terry do you know if that discussion is one of the sessions available on our website?
TerryW   I don't think it is on the site.  We did not record the sessions,  we did a live broadcast though
TerryW   Hello Hugo
oneredlite   NIH doctors did mentioned checking for liver functions in the conference including rise in ALT & AST and triglycerides blood levels. Your family doctors can check that. I have cut down on fatty, fried, almost no alcohol foods in my diet.
Hugo Rodriguez   Hi Terry, how do you doing, happy new year. Sorry for entering too late
david   I think the comments on the tendency for a fatty liver did not show the liver damage associated with liver related dieseases the information was shared so that we would know that there is the tendency and that they planned to study it further.
TerryW   My last test  i only had slightly elevated liver.
TerryW   Hogo,  I am taking it day by day
TerryW   2 years ago I did a tendem skydive,  This year I am going to do a tandem Hangl glide
TerryW   in a few months
TerryW   I can hardly walk much anymore but I found a place here in California by San Francisco that does it
david   I am not sure I'm ready for either of those experiences Terry but it sounds interesting.  What was the best and worst feelings on the skydive>
TedA   The clifts near San Franciscp are popular place for hang gliding
TerryW   Best is the falling part  seems much slower than expected.  THe only part that hurt for a split second was when he pulled the chute,  lower back pain for a second as it slowed our speed
TerryW   Yes Ted that is where I am going
TerryW   Hugo sorry for the typo above
TedA   Terry, Did my 5 static line jumps in 1972 in Tampa FL while in the Air Force
TerryW   I never did any of that when I was in the air force
ys115   I did a jump in Texas. Amazing experience that I never want to repeat again!
TerryW   LOL ys,  what happened
oneredlite   Hand gliding is fun. I did the skydive/parachuting during my military days in the army reserves.
TedA   It was a sport not service related.   Never did a free fall.   Was not willing to do that.
Hugo Rodriguez   erry, not problem with the typo. Herre in Mexico is not any easy to carri
Hugo Rodriguez   sorry, to carry out all that activities you are mentioning
Hugo Rodriguez   How old are you Terry?
ys115   I think I fully realized what I did only after I landed and then I thought: wow, I just voluntarily jumped out of an aiplane. that is just crazy!
TedA   Hugo,  What part of Mexico are you?
TerryW   I have river rafted,  Bungie jumped,  zip lined, Cave Spellunked,  Rapelled down 270 ft into a cavern,  sky dived,  a bunch more stuff.  Still trying to do what I can do
Hugo Rodriguez   I live in Queretaro, and was born in Veracruz
TerryW   Hugo  I am 52
Hugo Rodriguez   I'm 61
TerryW   also Scuba
Hugo Rodriguez   Looks that you enjoyed too much that
TerryW   yes
david   Hugo I spent some time in Mexico City and Pueblo in the 1980s and enjoyed the experience
TedA   Terry I to did the Repelling and Cave Spellinking at the place near you.   Around 1990, before KD
TerryW   Moaning cavern?
TedA   YES
TerryW   Me too
david   I worked for NCR Corporation at the time and my travels were primarily to their offices and plants.
TerryW   I almost died there
Hugo Rodriguez   That's good, I also have been in the U. S. for 7 months in Monroe Wisconsin and enjoy the winter.
TerryW   they rigged me wrong with the ropes
TedA   "Birth Cannal" was the worst!
TerryW   I think I remember that part
Hugo Rodriguez   In Canada NRC means "National Research Council". I stood also a 9 months training in Metrl
TerryW   Sorry everybody I have to go.  was good chatting.
Hugo Rodriguez   ... in Metrology there, related with temperature measurements
david   Until next time stay vertical guys!
Hugo Rodriguez   By Terry, have an excelent year.
TedA   The climb back out was long too....
Hugo Rodriguez   I wanted to say "bye" Terry
Gary_KC   Bye all. Stay warm.
TedA   Have a great 2014 everyone!
Hugo Rodriguez   Than you
oneredlite   Bye everyone and Happy New Year
Hugo Rodriguez   I am also leaving, have a happy new year.
ys115   happy new year! bye!