Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Surfing the internet I found the KDA and for me it was like an island for a castaway."

Archives - 2015 and Older Transcripts


Topic: Open Chat
Host: David Yelton
david Good Morning
carofer hi david
david Hi Stewart
Stewart Hi Good morning
david In southwestern Ohio it is a nice fall day a little sunshine and warm for this time of year
david Hi Gary
carofer sun is just starting to come out with clear skies in aptos, california
Stewart looking for a nice day here in the Los Angeles area
david Are either of you heading to the conference next week.  I will be there
carofer i wish i could go, but i cannot make it because of local obligations
Stewart I'll be there, I am getting ready looking forward to the conference
Ron M Good morning all
david carofer, maybe you can login to one of the webcast, Mike Goynes sent out a weblink and the agenda has the session we hope to webcast
david Hi RonM
Ron M Hi David, how was your week
carofer i definitely plan to get in on the webcast. is it one-way or two-way (with input from user)?
david Ron the week was good and how about for you?
Gary_KC Good morning. This is Gary joining in from Kansas City. It is a nice sunny day with 45 degress this morning.
Ron M Busy, still trying to work. Glad it is over. I just spend the weekends resting and watching football
david carofer, for this year it will be a one-way expereince for remote attendees will only be able to listen and see presentation materials.  Hopefully the learning from this year will allow us to expand the offering in the future.
Ron M GM Gary. For some reason I thought KC would be warmer than 45.
carofer one-way works for me
david Ron will you be able to use the conference webcast, I think you mentioned earlier that you wouldnot make the trip
Gary_KC Ron, It will be warm up soon. Thank you.
Ron M The web cast is a nice addition to the conference. I hope it works out. I am sure going to try and catch some of it.
carofer web cast is a great idea...
Ron M Yes David. I am going to try. I am waiting for the conference to be held alittle closer to me. Maybe some where in the mid west. I just don't travel well.
Gary_KC I like the idea of the web cast, too.
carofer ron, does vegas work for you?
Stewart I couldn't make the conference last year the webcast will be great for times I can't make it.
david Ron I am glad you might be able to use the webcast, anyone who uses the webcast should let Mike Goynes know about what worked and more importantly what did not work.  I too would like it to be closer, I am not looking forward to the long days of air-travel to and from the conference.
Ron M Carofer, Vegas is nice. It has probably been 20 years since I have been there. It is I think closer to me. I would have to see if I could take a train down.
carofer I am a huge train fan... maybe I could take a train to the next conference.
Ron M I understand the attraction to having it in a warm climate.
carofer yes, skiing is probably not part of the conference activities
Ron M Carofer. I am too. If you have enough time. You can take a train anywhere. It is a great way to travel. My other issues to getting to the confereence are time and money.
david The location has been dictated by the scheduling of a large annual neurological conference that many doctors and researchers attended and that limits the locations to cities with larger conference venues
Ron M agreed
Ron M David. Maybe there is still hope for the midwest
david Ron I will hope right along with you, you're in Chicago area right?  That a short drive from soutwestern Ohio
Ron M David, yes. I am about an hour from Chicago. do you ever think about leaving Ohio becuase of the weather/ To move somewhere warmer
Stewart I am good with most locations as long as these a major airport nearby, Vegas would work I wouldn't mind Florida (Orlando or Tampa).
david Ron, any moving we might do will have more to do with where our daughter and son-in-law live.  They live in the Lakeview area just north of downtown Chicago.  We will be heading to their way for the Thanksgiving holiday.
Ron M Where do you live Stewart?
Gary_KC Ron, it is about 7 hours drive for Chicago from here.
Stewart I live in California Los Angeles area (Torrance)
Ron M David, if you are in for a few days. Let me know and I can drive down and meet you for a cup of coffee if you have some time. Just shoot me an e mail
carofer do we have a moderator or did they move their clock back one day too early?
Ron M Gary, so does the 7 hours help in regards to weather or do you guys get pounded with snow?
david Ron, sounds like a good plan I will contact you when we know the schedule
Ron M Nice area Stewart. It has been awhile since I was in California. But I liked it out there.
Gary_KC Ron, we had lots of snow in Feb and Mar this year.
Ron M David, that would be great. Let me know. As of this moment, I should be off of work and at home.
Stewart One day I think I would like to relocate to Florida leave this State to busy, it was great when I moved here 30 years ago.
Ron M Gary, that is no help for people with KD.
Ron M Stewart, I have been told a lot of men with KD our down in Florida. I am thinking about it. Trying to figure out if I can remain in a cold climate
Gary_KC Ron, yes, cold weather and snow are not good for our living. I would like to move a warm area too.
david My wife have discussed the advantages of the warmer weather but for now moving away from family and friends seems more of a loss than what we might gain.  The cold is certainly bothersome but manageble so far.
Ron M David, any tips for managing the cold weather. It gets cold and my muscles just tighten up.
Gary_KC david, I agree with you. You have a good point. :-)
carofer when i go to the mountains, i always wear my silk long johns. i have had good results with chemical hand warmers. i heard that electric socks work well too.
Ron M I understand your views David and Gary. I actually love the midwest with the change of seasons. It just gets hard in the winter time.
Ron M Carofer, My ex has suggested silk long johns. I guess that is the warmest material. Didn't know about electric socks. I will have to check it out.
Stewart I have also heard there a lot of people there in Florida with KD, warm weather it's cheaper living that CA. I will work as long as I can, I have one son in 10th grade once he’s situated I can think about relocating. Who knows what will happen.
david Ron I have not noticed muscle tightening, rather my hands and feet can get almost painfully cold if I am out too long.  I have found that following the layering technique helps a lot and just accepting the fact that it might look weird when we go out and my wife has only a light jacket and I have gloves, hat, and heavy coat even in the fall and spring.
carofer for me, it is important to keep moving in cold weather. if i stop, i may not start up again.
Ron M Stewart. Cheaper living is good. That is what I am looking for. Not cheap outside Chicago. Not sure how many more years I have left working
Ron M David, I dress the same way. Kind of crazy but as you said, what can you do.
david Ron I also have acquired some good lightweight sweaters and jackets from LLBean and Lands End.  Typically I in the winter I go with a long-sleeve t-shirt then a sport shirt light sweater and then whatever coat works.  It really seems to help, but then again when it is really cold outside for the most part I stay indoors and will still be overdressed by most folks standards
Ron M Carofer, what state do you live in where there are mountains?
carofer california -- my son used to love snowboarding, so i was obligated to take him there
david I have also found that following the exercise guides on KDA website helps keep me keep down the muscle pain.  Recently I took advantage of the article Bruce had on his blog about neck muscles, add a couple of simple moves and have much less discomfort with my neck muscles in particularly at night and when I wake up in the mroning.
Ron M David, LL Bean is a great place. They opened a store a few years back by me. Quality stuff. I dress similar to you. My problems come more in the legs and muscles in the legs. Hard for me to keep the legs warm. Causes me to limp or lose bablance
Ron M Carofer, I understand. How old is your son?
carofer now he is 23. i have another one who is 30.
carofer the long gap between the two is an indicator of the type of fertility problems that kd'ers have
Gary_KC david, I am doing light exercise too. It helps me blood circulation and burning calories.
Ron M I have been putting it off. But exercise would certainly help. I just have to do it.
carofer how do you get the motivation and time to do exercises? I wish i could do more.
Stewart Ron M, I don’t let them know at work I have KD, I think if they know they with start looking for my symptoms then see me as a liability
Ron M carofer. I never knew there was fertility problems with KD. I have the one son. He is 13 now. I ended up getting divorced so I didn't have an opportunity for moe kids
carofer i was told that sperm motility and volume is somewhat lower with kd people.
david For the motivation comes from feeling much better now than I did four years ago.  I feel much stronger and stable now than I was, my physical therapist confirms the improvement.  When I do not do my normal routines daily my muscles ache more.  I use to take off over the weekends to "rest" but wound up just having morn pain to work through on Monday mornings.
Ron M Stewart. Cheaper living is good. That is what I am looking for. Not cheap outside Chicago. Not sure how many more years I have left working
david I read somewhere that infertility was also a potential problem with KD men, and since our only child is adopted I consider her the one very good gift that came along from my having KD.
carofer did the exercise nih trial results ever get published?
Stewart I have a 15 year old, My wife passed away when he was 3 years old so no more kids.
Stewart Well, have a great week I am off to start the day (breakfast).
Ron M Sorry to hear Stewart. That is quite a loss
carofer stewart, that's tough. I too became a single dad/widower when my son was 11
david Ron do you use a cane, I have a very light weight walking stick from Leki, their primary -products are trekking poles, but they also have a couple with cane type grips.  One expands to a full trekking pole height, the othner is a travel cane
Stewart thanks guys
Ron M Not yet but this winter could change that. I almost bought one last winter. I will check out the Leki brand.
david One of the webcast next Wednesday morning will include whatever the NIH can share with us about the exercise trial, I think it will wrap up later this year so final results will not be known.
Gary_KC I got go. Have a nice weekend. Bye now.
Ron M Quick hour everyone. I too need to get going and start my day. Have a good weekend everyone
david It was good chatting with you this morning stay vertical!
carofer thanks to all -- have a great week!