Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I attended a KDA Conference. Personally meeting several the doctors and researchers actively trying to find a cure has changed my life. I now have hope!

2017 Chat Room Transcripts


Topic:  Open Forum  
cbcoulter1   Good morning.
GregF   Good Morning how are things today
cbcoulter1   Cold, wet and dreary in Cleveland
cbcoulter1   How 'bout you?
GregF   I am in Colorado and its sunny and warm, supposed to hit 85 today
cbcoulter1   Don't rub it in.
cbcoulter1   Been this way the last three days. I have cabin fever.
cbcoulter1   This is my first chat so glad to finally join in.
GregF    Ill bet. We had that last week even had a freeze so all of mama's flowers froze
GregF   Do you have K,D,
cbcoulter1   I saw that, big snow up in the mountains. A friend from high school lives in Colorado Springs and said it was quite beautiful.
cbcoulter1   Yes, I do have KD
ronmoffett   Hello everyone. Sunny day here in Illinois
cbcoulter1   Diagnosed about 18 years ago. I'm 54 as of last month.
ronmoffett   cbcoulter1 - where are u from ?
cbcoulter1   Strongsville, OH, just outside of Cleveland
GregF   Wow I have only been diagnosed for 4 years but it took them 10 years to figure out what was wrong
GregF   Good Morning Ron
ronmoffett   Not far from Illinois. I am heading that way to take my son to a baseball tournament this summer. 
ronmoffett   Goodmorning Greg. How are you feeling ?
cbcoulter1   I have a younger brother who was having health issues back then and it took over a year to diagnose him. Once they did that they said any brothers have a 50/50 shot at winning the KD Lottery. There are three of us and we all have KD
jackj   Good morning all, I am Jack from Southern California. My son has KD
GregF   Feeling really good; thank you
cbcoulter1   Ron, where is your tournament?
ronmoffett   Good morning Jack. How is your son doing.
GregF   My brother and sister both have K,D, but I was the first to be diagnosed so it made it easier for the two of them
jackj   very good now that he knows more about taking care of himself
cbcoulter1   My son played baseball and just graduated from Otterbein University. We used to do the travel baseballs many summers.
DavidOhio   Good Morning all
GregF   Good Morning David
ronmoffett   Chocoulter1 - its in Youngstown. Did your son play in college.
cbcoulter1   Ohio is well represented so far. No I feel better . . .
ronmoffett   Good morning David 
ronmoffett   Jack - good to hear.
cbcoulter1   He did, first three years. Focused on grades as he is an Athletic Training major and wanted to go to grad school. He was accepted as a Graduate Assistant at University of Kentucky so he made the right choice.
cbcoulter1   My name is Chris by the way so you can use that and save some keystrokes
cbcoulter1   David, where in Ohio are you?
ronmoffett   Chocoulter1 - that's great. University of Kentucky is a good school. I am sure it was a nice experience for your son playing baseball at the college level.
DavidOhio   Hi Chris, we live in Lebanon Ohio - midway between Cincinnati and Dayton and where are you?
cbcoulter1   It was, he pitched and didn't throw 90 so he didn't get much action but really enjoyed it. Goal is working in MLB with pitchers someday.
cbcoulter1    David, I'm near Cleveland, in Strongsville.
ronmoffett   Nice - that's what I hear. If you can't throw 90. Not much action for you.
cbcoulter1   I have a brother, with KD, who lives in Dayton.
DavidOhio   Chris, we are finally drying out a little today after it seems like a week of rain.  But I think you might still be getting wet?
cbcoulter1   He had a mean curve and change up but it is what it is. How old is your son and what positions does he play
cbcoulter1   Yes, I mentioned it's been coming down non-stop for three days. I'm about to put a big garbage bag over me and the scooter and go for a spin.
ronmoffett   My son is 17. He pitches. He is pitching today but its too cold for me to go sit and watch him.
cbcoulter1   I know what you mean. Lots of hats, gloves, layers and blankets.
DavidOhio   Chris do you think you or brother will be able to attend the annual conference in the DC area in November?
cbcoulter1   I just mentioned to my wife the conference is in Virginia and we plan to go.
cbcoulter1   We went to the very first one in Baltimore way back when. Haven't gone again since then.
cbcoulter1   Can't speak for my brothers yet. There are three of us.
ronmoffett   Greg - does your school go year round. Or, is it winding down where you have summers off ?
DavidOhio   Chris I did not make it last year, San Diego is just too long a trip for me now.  But before that I made it to each one since 2010 and I learn something each year.  I look forward to meeting you in November
GregF   It is winding down we have 3 more weeks
ronmoffett   Greg - very nice. Any summer plans ?
cbcoulter1   David, likewise. I keep up with the website and the Living with Kennedy's blog but couldn't fit the yearly trip into our budget. Just paid the last college tuition bill.
GregF   My youngest son is getting married the end of June so we are busy with that until then
cbcoulter1   Congratulations!
ronmoffett   Chris - that last payment is a cause to celebrate. Are you still able to work ?
GregF   Thank you
ronmoffett   Greg - congrats - how old is he ?
DavidOhio   My brother does not have KD, but I have nephew and several cousins with KD.  Tom Kotte a cousin has made the chat room before however he had an episode with swallowing about a month ago and has been in and out of the hospital ever since.
cbcoulter1   I am blessed to be able to work from home in what I do. I do database support and management for a recruiting company. Unfortunately the company I was with for 15 years scaled back and I was laid off but I started my own consulting gig and am working about 20 hours a week.
GregF   He is 23 and lives down by Houston. They are coming back here for the wedding
ronmoffett   David - can you elobrate. is he having a hard time taking food down ?
cbcoulter1   I'm in that spot where I made to much and at the perfect age not to hire. And I would have concerns having to work in an office with the physical limitations of KD
ronmoffett   Greg - good age to be married. Nice that the wedding will be close for you. Houston is supposed to be nice though. I have a cousin down there.
GregF   He really likes it down there. 
ronmoffett   A lot of people moving to Texas.
DavidOhio   Tom got some food stuck and passed out.  In the aftermath he had to have a trach  and a stomach tube installed and has been dealing with pneumonia. 
cbcoulter1   That is definitely one of my fears. I'm always the last one up from the table eating small and chewing long. I had some severe chest congestion a few months back and hacked up some phlegm that got stuck. Finally knocked it loose but was light headed and panicky. I keep Mucinex in stock now.
ronmoffett   Its hard. I have a lot of swallowing issues my self where my throat just closes. You have my e mail address, if you think its ok with Tom. Can you e mail me his phone# and I will give him a call. 
ronmoffett   My dr has prescribed Lorazepam oral for me to put down my throat when it closes. I think it helps.
cbcoulter1   Speaking of eating, have any of you made any changes in your diets as you progress. I've noticed if I eat to much my legs just don't want to cooperate. Also, I don't drink much and last night the wife made a margarita for Cinco de Mayo and my legs never felt so weak when I got up from the table.
DavidOhio   Ron I can certainly send you his wife Marsia's email address and let you take it from there.  Tom has no been online, he used to be on every day
ronmoffett   Thanks David, that would be great.
DavidOhio   I was thinking that maybe we should have a conference session on this subject.  It seems that all of us have some swallowing issues.  I know that at least for me exercises that I learned from a speech therapist has helped me.  Maybe we can get a speech therapist from the NIH to explain the mechanics of swallowing and what we can do or should avoid etc.  What do guys think?
ronmoffett   Great suggestion David
cbcoulter1   Great idea. I recently had a swallow test done at the MDA Clinic in Cleveland and while all was well I know I have to be careful.
DavidOhio   Chris I have found that I should avoid eating certain foods especially in the evening.  We used to have some dessert in the evening but now I do not because I need time to allow phlegm to clear before going to bed. 
cbcoulter1   Thanks David, I've had a real surge into more weakness the last year of so. I've noticed when I eat more sugary foods the weakness kicks into a higher gear for while. Fortunately the phlegm part has been a factor except when I was sick.
ronmoffett   With many people Dairy products will produce more Phlegm. I think Bruce wrote a blog related to this with his experience.
cbcoulter1    Agreed on dairy, I use Almond Milk for making green smoothies as I try to cut a few pounds. David, are you familiar with Young's Jersey Dairy down your way. I'd be in trouble if I lived closer.
DavidOhio   I have had two swallow test since finding out about KD about 8 years ago.  The second time I asked my doctor to order a second test because I was having more trouble.  While I was able to handle all of the test, the therapist noted that I had occlusions even with the lightest test material.  She helped me add a couple of exercises to specifically address the issue and it seems to have helped . 
cbcoulter1   Ron, be sure to let me know when the that tournament in Youngstown is happening. Would enjoy coming over to meet you and take in a game or two.
cbcoulter1   David, for preventative purposes, what were the exercises.
DavidOhio   Yes I been to Young's Dairy but thankfully it is over an hour away from us.  On the other hand on the way to Chicago on I-65 there is Fair Oaks Dairy and we pass that one a several times a year on our trips to visit our daughter and grandson.
ronmoffett   Chris - this would be great. Its late June. They don't release the dates we play until a week before. Probably be June 23rd to 25th. If u send me your e mail. I can let u know. 
cbcoulter1   Maybe I can get my son to come with me. He's coaching a travel team this summer before heading to UK
DavidOhio   Chris they are very similar to the one's posted on the KDA website.  One was to tighten the throat (like a we experience with dry drowning episodes) and hold it for a few seconds, then to attempt to "pull" the back of the tongue through the top of your head and again hold for few seconds.  
cbcoulter1   Thanks
ronmoffett   Chris - got it. I will be in touch. Not sure how competitive they will be. He changed teams. Be good to meet you though
DavidOhio   Hi Todd how are you today?
ToddAllen   I'm doing very well, I hope all is good with you.
ToddAllen   A beautiful spring morning here in Chicago and I just got back from walking our dog.
DavidOhio   Well just now I see a little sunshine outside and recently that has been hard to come by.  I think a walk about sounds like an excellent idea.
ToddAllen   We've had lots of rain so it is a welcome change.
jackj   Bruce wrote a very comprehensive piece on choking and swallowing called "are you afraid to go to sleep".  You may want to check it out on his blog
ronmoffett   Hello Todd. Glad ur well. Its that time for me. I need to transition and get something to eat and finish some work. Everyone. Have a great weekend.
cbcoulter1   take care Ron
ToddAllen   Hi Ron, bye Ron, talk to you soon.
ronmoffett   Thanks Jack. I will check it out. I must of missed that one.
jackj   so long guys.  It is always good to see the KDA family in action
DavidOhio   Thanks Jack, I will be sure to check it out.  Bruce's Living with KD blog is a blessing to all of us.  I have learned so much from him.
cbcoulter1   I like to share the blog with friends and family. Awareness is huge.
ToddAllen   Bye Jack, hoepfully I'll be able to walk faster next time.
cbcoulter1   I'm out as well. Thanks for the warm welcome. Looking forward to the next chat.
DavidOhio   Time for me to move on to other tasks as well this morning, so until next time, please stay vertical everyone!