Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Back in the late 1990s, I felt alone. I had just been diagnosed with Kennedy's Disease. I came across the KDA and attended a Saturday chat. What an eye opener! There were two dozen others on the chat that were going through what I was experiencing."

2017 Chat Room Transcripts

Topic: Open Forum  
ronmoffett   David, how are you ?
ronmoffett   David. Things are ok - busy. How about by you ?
DavidOhio   Later today I will be heading to Anita's in-laws for a 1st bday party for little Nate.  They made the drive down last night after work.  Unfortunately Granny (Margy) is not well enough to join us but she is determined to not pass any illness to little Nate so for her pictures will have to do today.
ronmoffett   Sounds like a very nice day. 
ronmoffett   The weather here has warmed a bit. Not too bad. How is it there ?
DavidOhio   a rather normal day for a change, near freezing over night and then warming up to 50 or so this afternoon, lots of sunshine
ronmoffett   This helps. How was the conference. 
DavidOhio   In answer to your question is was a good conference, lots of first timers and for once a good mens-only chat time.  there were some really young guys who are really struggling with their recent diagnosis
DavidOhio   As for the conference I was very encouraged by the added focus on finding ways to treat the muscle cells instead of the nerve cells since that approach is much easier since treatment does not need to get past the blood brain barrier defenses.  However just because it is easier does not make it simple or a quick research effort we remain years away from a treatment 
ronmoffett   Yes. it sounds interesting. Nothing is quick. As I get older, not sure if I will see a break through. Can only hope.
ronmoffett   There was a topic on nutrition. Did they say anthing interesting ?
DavidOhio   Well I am glad you explained that because at times I get worried that I am going to break something.  Since I stopped working every day I seems to be much more removed from technological advancements.
ronmoffett   If you see the message again. If you can copy it and send it to me. I can confirm my thoughts. But as long as you can access the computer. All is good.
DavidOhio   Yes and I still need to go back and review my notes, even margy found that one interesting.  I think that is one where we could ask Angela for her powerpoint slides to share and then someone could really follow her thoughts by listening to her presentation on facebook with the slides.
ronmoffett   Yes. she probably would share them. That was one area that I was very interested in to see if it mattered. I think diet is important. Not sure though its effect with KD
DavidOhio   I know that Maria also posted videos of the physical therapy session and Ed KDA 101, two other opportunities to have slides to use with viewing.  Is it possible to also have those videos available directly from the KDA website?
ronmoffett   To put them on the website. We would need to point to them. All the videos we have on the site are stored on YouTube. I mentioned that if she can upload the videos to YouTube. We can point to them.
DavidOhio   I think it basically confirmed that eating good for you foods and moderate exercise is one Key element of control we have when dealing with KD.  But I find the eating good food only a real challenge, but will continue to work it because I know that losing some of my excess poundage will help me in the future.
ronmoffett   I don't have the excess poundage to worry about. I have the opposite probel. I am trying to gain weight. I have become very thin.
ronmoffett   How is your cousin Tom doing ?
DavidOhio   I suggest you get a referral to a nutritionist and have educate them about KD and then ask what you can do to gain some muscle mass, since that is what you really want.
ronmoffett   Yes. I lost it all. I have lost 60 pounds over many years. I did try and connect with a nutritionist at the MDA clinic. She called me back but I have been so busy that I forgot to follow up with her. I will try her again - thanks for the reminder. 
DavidOhio   Tom is doing OK, his restarted his almost daily history quiz.  I told you he was able to go home right?  He lost a lot of independence but was considered strong enough to be safe with just the assistance of Marcia his wife 
ronmoffett   This is good news. I didn't realize he was at home again. Very nice
ronmoffett   How old is Tom ?
DavidOhio   That is a great idea, MDA clinics have the necessary resource to really help KD men.  I need to make that a new years resolution for me to have an initial appointment with my local MDA clinic
DavidOhio   I know Tom is older than me but not more than a year or two, so he would be 65 or 66.
ronmoffett   At times they can be helpful. I think its hit or miss. They helped me a lot with prescribing medication to keep me still so I can sleep. I recently was taught how to use a cane properly.
ronmoffett   Not that old. Hopefully he can bounce back and regain some strength.
DavidOhio   I was hoping Tom would join the chat this morning, I will need to bug him about it in early January.  I did share some thoughts about the conference and pointed him to the facebook posts.
ronmoffett   Yes. It would be nice if Tom was able to join. I miss touching base with him. How long have you been retired now ?
DavidOhio   As you may recall Tom was a firefighter and when I first met him at one of the DC conferences 6 years ago he was already wheelchair or scooter bound.  But he was still working, doing an office job for the IRS.
ronmoffett   Not sure why - but the chats have been very lightly attended lately. I always wonder what happened to these men. With the exception of Tom, I know what happened. 
ronmoffett   Yes. I remember. Not sure if he is still able to work. I didn't know you met him 6 years ago. Was it then you discovered you were cousins ?
DavidOhio   My job moved to Charlotte NC in 2011 and I just was not able/willing to make that move.  So I stopped working in 2011 and filed for early retirement pensions in 2012 and then early social security in 2016.
ronmoffett   Were you ever on SSDI - disability ?
DavidOhio   He retired from the IRS about 3 years ago.  Tom's mother is my grand aunt, and I recall family gathering as a young child but we did not remain in close contact.  We reconnect because another cousin from that generation and my brother met up and mentioned KD.  That first conference we had a good time getting a better grip on my grandfather's family (bothers sisters and parents)
ronmoffett   Very nice story - family is good.
DavidOhio    No at the first conference there was a SSI experts and she thought I had a good case for disability, but I just did not feel right claiming it because I knew if it was the only option I could work and still earn a very good salary.  My wife had returned to work and had good benefits with the local school district so that made the decision much easier.
ronmoffett   Makes sense.
DavidOhio   Well Ron it has been great chatting with you today.  I need to breakaway soon to go and join the bday party time for our grandson Nate. 
ronmoffett   Ok. It was nice to catch up. Have a wonderful time.