Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The site is essential for a source for the general public, whenever one encounters the diagnosis of Kennedy's Disease and has no idea what that might be. There is simply no other source as easily available to the public."

Archives - 2015 and Older Transcripts

Topic: Open Forum  
Host: Ron Moffett  
     
Gary_KC   Good morning. This is Gary joining in from KS.
David   Good MorningGary_KC and jackj
David   It is cloudy and cool this morning in soutwest ohio this morning what weather are you having today?
David   Did you see the announcements about the 2015 KDA conference in Chicago? 
Gary_KC   It is cloudy and cool near Kansas City too. It is rain all week.
David   We had bright sunshine yesterday and warm, high in the mid 80's.  May and so far in June we had very little rain
Gary_KC   Yes, I received the email too. I can't attend the conference due to my health issue.
David   Well I hope we can work on webconferencing parts of the conference again this year so that KD'ers like you Gray_KC who cannot travel can share in the experience.
Gary_KC   We have some sunderstorm and lots of rain in June, so far.
Gary_KC   David, that will be nice. 
David   I traded emails with Ron Moffitt yesterday and was hoping he would be able to be on the chat today since he might be able to share more details about the conference.  Ron lives on Chicago and helped with the site selection.
Ron M   Good Morning all
Gary_KC   Hi Ron
David   Speaking of Ron M there he is, good mroning.
Ron M   Was I the only one that was required to update Java before joining the chat. Did this happen to anyone else
Gary_KC   Ron, no I was not requested the update recently.
Ron M   Good Morning David and Gary. How are you guys feeling?
David   Ron M no I had to run an update also I must have just started earlier than you.  And jackj seems to be having trouble staying connected
Ron M   Hmm. Some people have that problem staying connected and I am not sure the cause. 
Ron M   David, you metioned you are in the process of moving out. Is the place you are staying at in the same town? Is it a home or an apartment?
Gary_KC   I guess jackj may not type in. If the case, his PC must be restarted.
David   Ron M one of the things I would like to work on for the conference is to help with webconferencing in our KD friends who cannot travel for some of the meetings.  
Ron M   Restarting a PC has fixed a lot of problems in my time.
Ron M   David, got it. Thats great. Were you at the last conference? 
David   We are moving to a small apartment about 12 miles from our home.  So we will be able to visit frequently and keep up with the project daliy.
Ron M   Thats pretty close. Glad you found something.
David   Yes, I've actually been able to attend every conference starting 2010, about a year after my diagnosis.  I learn something new every year.
Ron M   We are in the beginning stages of planning the conference. Do you guys have any suggestions on topics that you would be interested in hearing about.
Ron M   Good morning Jack. How are you today? 
Ron M   David, were we successful with the web conferencing last year? 
David   We've had a psycologist the last couple of years and I think it has been useful to have that opportunity.
Ron M   David, I agree. I was thinking about that. In the past. What were the subjects they talked about?
David   No the webconferencing was not very successful last year.  I am hoping the Mike Goynes will make it this year and be willing to take the lead on the technology issues, I am not tech-savvy enough to handle it.  Also we need to promote it early, but I know that it is a concern that some who might be able to attend in person would opt for webconferencing instead and we need in person attendees to make it all happen.
Gary_KC   David, I understood your concerning.
Ron M   I agree. I believe Mike is planning on attending the conference.
David   Both years she covered general coping skills for those who have cronic medical conditions and also facilitated men-only and women-only sessions to allow both KD'ers and their caregivers to express concerns that they might not share when we are all together.
Ron M   Gary, how have you been feeling lately?
Ron M   Those are good topics. Certainly there is benefit of having some of those discussions again.
Gary_KC   Ron, I am fine thank you. I can not stand up and walk at all. I use wheelchair in home and use a scooter or power wheelchiar outside.
Gary_KC   I hope we can hear their resarch status from ARMCO pharm who presented us in March.
David   Ron M our daughter is an art therapist and she lives in Chicago.  I was thinking of asking her to present on how an artistic expression can help people deal with issues like ours.  Or maybe even ask her to bring materials for the group to try to unlock our creative side.
Ron M   Glad your ok. I do remember now that you mention it that you have said you used a wheel chair. Your situation does make it hard to attend the conference. Are you able to get help around the house at all?
Ron M   Jack, I don't think I know you. Have you been on this chat before? 
Gary_KC   Ron, I am managing to do my daily work with som help.
Ron M   David, when will you be able to move back into your home again?
David   We hope to return by the end of September.
Ron M   Gary, thats good. I live with my 15 year old son most of the time. But he is not much help. I get alittle concerned about living alone. Although technology has helped with that. If you don't mind me asking Gary. Do you live alone?  
Gary_KC   Ron, Yes, I live alone but my some friends lives near. They help me lots.
David   In addition to the accessibility related changes, we are taking advantage of the opportunity to replace wallpaper, change some window coverings and repaint most of the rooms.  As we discussed the project my wife casually mentioned that some of our rooms had not been renewed in 25+ years.  So when we return it will be like moving into a new home.
Ron M   David, so its a 3 month remodel. Thats quicker than I thought. Not too bad. Still probably a big pain
Ron M   David, it makes sense that you do that stuff when you are out of the house
David   Ron M a year or two ago one of the topics included some unique renovations one man made to allow him to continue to live alone.  One interesting item was a cieling mounted track system that allowed him to transfer from bed to the bathroom wihtout assistance.
Ron M   Gary, glad you have friends near by that can help. That makes a huge difference. 
Ron M   David, I am familiar with the track system. Are you putting one of those in your home?
David   No we are concentrating on widening doors and hallways, creating a fully accessible bathroom with a roll-in shower and a new exterior entrance with a ramp.
Gary_KC   I still have some strength of my arms and shoulders that allow me to trasfer between bed and wheelchair.
Ron M   Welcome back Jack. Sorry to see that you are having problems staying on. 
jackj   Hi Guys, Been having technical difficulties.  My first chat.  My son was recently diagnosed with KD.  Question;  a lot of research money seems to go to ALS and MD;  is any of that research directly applicable to KD?
Ron M   Gary, thats good. Thats important. I think about this all the time because I will be living alone when my son moves out. I hope to be able to keep my strength up to make that transfer. 
David   Glad you were persistent and could join us jackj.  Yes the KDA association has been able to encourage a number of directly related KD research projects.  The annual conference is a great place to learn about current and future research activities.  In fact there is a clinical trial currently seekings participants to take part in a pontential drug treatment to improve muscles for KD men.
Ron M   Jack, in regards to the MDA. A lot of money does go to ALS and other MD related illnesses. Thats why the KDA was created. We raise money to fund our own research. Since KD is a rare disease. I have not read where the MDA has funded a lot of research directly at KD but I am not completely positive
David   Lsst year KDA awarded two 
David   $50,000 grants and intends to that or more again this year.
jackj   what did you guys think of Fishbeck's interview posted on the site a few days ago.  Is there real cause for optimism of something happening any time soon?
David   I had the opportunity to talk with Dr Fishbeck and hear his presentations at the c onference each year and this is the first time he expressed any hope for a treatment.  But we all need to keep in mind that this current trial is the first human treatment opportunity and we are still likely to be years from any widely available treatment.  However it is progress and that alone is very good.
Gary_KC   Jack, may i ask you how old your son. KD usually appears the symptom at least 30 or older.
Ron M   Jack, if you look through the KD website. You will see where the money goes. What is being researched and funded. Its a pretty informative site. What I have learned and by no means am I a neuorolgist. MD is a very general term with a lot of different causes that aren't exactly related to easch other. So a cure in ALS may not mean a cure for KD or other MD related illnesses. The symptoms of ALS and KD are similar but I believe the root causes and genetics are different.  
jackj   Thanks for your inputs guys!  The conference in Chicago sounds like a great place to get up to speed on this and get a chance to meet other KDA people
David   Well guys the movers will be here in about an hour and I need to lend whatever support I can to my wife as try to be ready for their arrival.  Until next time take care all.
jackj   has anyone thought of doing anything with crowd funding to get more money?
Ron M   Jack, I have never talked to anyone that has ever siad it was a bad confence. Neurolgists do attned to share the ltest research. You might also consider going through are site for inf. I woul also call attention to a Blog written by Bruce on our site. It is very informative. If you have trouble finding any of this information. My e mail is This email address is being protected from spambots. You need JavaScript enabled to view it.. Just e mail me.  
jackj   Thanks a lot Ron,  I'm still feeling my way around and will probably take you up on that.
Ron M   Your welcome. Contact me anytime. My info is on the site under the Board of Directors link. 
Ron M   Guys, its that time. It was great chatting with you. I have to go take my son to baseball. Have a wonderful week.
Gary_KC   hope you have nice beginning of summer. Bye
jackj   Thanks, guys.  Nice meeting you!
frabayrui   Good morning from SPAIN