Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The KDA web site is a source of real information and even stories of other guys with the same problem. All of a sudden I was not alone, and also the information about the research going on gave me hope."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Gary_KC   Hi jackj
jackj   Good Morning, Gary
Gary_KC   this is Gary joinijn in from KS.
jackj   Not sure what KS stands for.  I'm from Southern Cal
Gary_KC   Kansas state
Ron M   Good Morning Jack and Gary
Ron M   Good Morning Stewart
Stewart   Hi Goodmorning
Gary_KC   I falled from wheelchair and injured my right arm and fingers. So I can not type fast now.
Ron M   Sorry to read this Gary. What caused your fall
Gary_KC   I tried to pick up a pen I droped. I lost my balance. :-(
Ron M   That happens. You were able to get back in your chair ok ?
Gary_KC   I should have moved the wheelchair exactly under the pen, but I was a little lasy.
jackj   Did anyone attend the KDA conference in Chicago?  I haven't seen anything posted on the site so I am very curious about any updates on BVS 857 or other activity leading towards a cure.
Gary_KC   I called my friend who came to help me.
Ron M   Gary, glad he was able to get you back in the chair.   
jackj   That must have been pretty scary!
Gary_KC   I bought a medical alert help pendant for just in case.
Stewart   I understand they have finished or almost finished recruiting to the IGF1 trial.
Ron M   Jack, I was at the conference. Did you get this months newsletter. It talked alittle bit about the conference. The KDA plans on publishing another newsletter that will talk more about the conference 
Stewart   I need a medical alert help pendant
jackj   I didn't check the news letter.  I assume its on the KDA website?
Ron M   I need one also. Gary, what is the cost associated with that ?
Ron M   Jack, no. Its our monthly newsletter. Have you ever signed up on the KDA site as a member ? 
Stewart   I see someone else is from Southern Cal, where abouts, I live in Torrance.
jackj   Yes I have, but haven't seen a newsletter.  Do they mail it or send it online?
jackj   Hi Stewart I'm from Mission Viejo
Ron M   Hi Greg
GregF   Good morning
Stewart   I've got friends out that way nice area.
Gary_KC   I bought it by eBay. It was $70 with a base and a pendant. When I press the botton, it will call 3 numbers one by one until someone answers the call.
Ron M   Jack - it is sent via e mail. If you want. My e mail address is This email address is being protected from spambots. You need JavaScript enabled to view it.. If you send me your e mail address and information. I can check to see if your registered and forward you a copy of the newsletter if you find that you don't have it. Also, maybe its in your junk folder.
Gary_KC   You can check by a key word "Medical Alert HELP DIALER ONE". This one requires no monthly charge.
jackj   My Mom had one and they would call her to see if she was OK.  It was very comforting for her children because she lived alone
Ron M   Gary, thats worth the money. 
Ron M   Gary, thats what I didn't know. I thought they all had monthly charges. This is nice that this one didn't have it.
jackj   Ron, Thanks for the offer. My email is This email address is being protected from spambots. You need JavaScript enabled to view it..  I don't think I would have missed it in "Junk". 
Ron M   Jack, I just sent you the November Newsletter. 
GregF   Mine is Mobile Help. the thing i like is that it has a mobil unit so i can use it anywhere not just at home
Gary_KC   Ron, is it an email "Monthly Message - November 2015"?
GregF   I think its around $35 a month but there is no contract. you can drop it anytime if you want
Ron M   Gary, yes. That is it.
Gary_KC   Ron, thanks.
jackj   Got it Ron, thanks a lot
Ron M   Guys, just wondering. Do any of you read our monthly Newsletter. You are not going to hurt my feelings if you don't ? Just wondering
Gary_KC   GregF, an operator will assist us if we pay the monthly charge. What I bought was no operator assists.
GregF   Thats cool I have never seen that
GregF   Ron I have never seen a newsletter
Ron M   Jack - welcome
jackj   My wife and I  check the site almost daily.  Now that we know about it, we will definately be reading it.
Ron M   GregF are you registered on the site as a KD member ?
GregF   yes
Gary_KC   Senior guardian alert life - help dialer one- medical alert - no monthly charges 
Gary_KC   Please check eBay or search by Google.
GregF   is the newsletter on the site or is it emailed to us
jackj   My Browser is acting flaky this morning.  Every time I try to do something in parralell in another app, it locks me out.
Ron M   Jack, the newsletter is not on the site. After this chat. I think I am going to try and get the newsletters on the site. You just need to sign up and register as a KDA member to recieve it. Again, if you e mail me your info. I can check our records and see if you are registered.  
Ron M   GregF - its e mailed to you if you are a registered member of the KDA
jackj   I'll do it after the call
GregF   I will check spam and see if it got sent there
Ron M   Gregf - ok, let me know if you aren't recieving it. This email address is being protected from spambots. You need JavaScript enabled to view it..
GregF   I will thanks
Ron M   I live in Chicago and the weather here has been unbeliavable so far. 70's last week. It has helped my KD> how is the weather where you guys live. I imagine pretty good ? 
GregF   Ron I did get it. it was in spam so I got it fixed. thank you
Ron M   Greg. Thansk for letting me know. I imagine that you are not the only one where the letter goes to the Spam folder
GregF   I am glad you brought it up, I look forward to getting it now
Gary_KC   Ron, It is mild weatherr so far in Kansas too. It may be mild winder by elninyo???
Ron M   Jack, if I remember correctly. Your son has KD. How is he doing? 
Gary_KC   It is El Nino.
GregF   The weather has been really nice here in Colorado until this morning. it was in the low 20s today
Ron M   Gary, I think thats what they are saying. I need it. How cold does it get in Kansas Gary? Are the winters real cold and snowy ?
jackj   He does't seem to want to talk about it.  and we wonder.  We will see him over the holidays and then we will be able to know more.
Ron M   Greg, I just learned that Colorado got that cold. I never knew that. In my mind. I thought it was a warmer place being west
GregF   The elevation is high so we get the cold but not the humidity
Ron M   Jack - I understand that. I am the same way. Diagnosed 5 years ago or so. A lot of peolpe still don't know whats wrong with me. I am doing alittle better job talking about it.
Gary_KC   Ron, it is 37/54 degrees today. It is 54 degrees now. We have snow 5 to 10 times in season. It is 1 inch to 2 feet. 
Ron M   Gref F - Makes sense. What I found interesting was at the conference we had about 7-10 guys from Canada. I can't imagine what the winteres are like up there. They said they managed.
Ron M   Gary - that sounds like Chicago. Do you ever think of moving to a warmer place ? 
GregF   I have worked in northern north dakota in the winter and it can be brutal
Ron M   GregF - I can imagine it would. The place is known for being cold. What type of work did you do?
GregF   I was a Heavy equipment operiator, Truck and heavy equipment mechanic for 37 years
jackj   Thanks for asking, Ron.  He talked about it a lot when first diagnosed. Not much since.  We think he just wants to move on and live his life.  Good news, his wife is pregnant and is expecting a boy!
Gary_KC   Ron, I have many friends in here. Without my friends' help, it is very difficult to live alone. Of cause I like warm palce like Frolida, Arizona, or Hawaii.
Ron M   Greg - interesting job. You are outside for sure. You were fortunate that you were able to work that long with KD
GregF   yes I was. it took them almost 10 years fto figure out what was wrong with me because none of the Drs. here had ever herd of KD.
Ron M   Jack - that makes sense to me. A lot of people with KD just live full, normal lives. Congrats on being a grandpa. 
jackj   Yes, we are thrilled!
GregF   Jack congrats on the grandbaby I have 3 and 1 on the way their awesome
Ron M   Gary - yes. I agree with you. I live alone also. My sons around and he helps out. But I keep trying to decide if I should move or not. Hard to leave friends
jackj   Thaks, Greg,
jackj   How old were you when you were diagnosed?
GregF   I was 52
Ron M   Guys - its been great chating with you. I need to transition into my day and start breakfast. Have a good weekend
Ron M   I was 49
GregF   when I got the diagnoses my brother and sister both got checked and found out that they both have KD
Gary_KC   I was 37 
Stewart   Well guys have a great week, Thanks
Gary_KC   Bye all. Stay warm.
GregF   Happy Thanksgiving ya'll
jackj       OuGoodbye all.  See you next time.
Stewart   Jack I sent you a message. Have a great day. Bye all
jackj   Got. it I'll call you