Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

2016 Chat Room Transcripts

Topic: Open Forum   
     
TomK   Good Morning
carofer   good morning from california
GregF   Good morning from Colorado
ronmoffett   Good morning everyone
carofer   hi ron and gregf
jfurman   Good morning
Johnson   Good Morning from Southern California
ronmoffett   Good Morning jfurman and Matt
GregF   Is everybody keeping warm?
TomK   Beautiful Day in Cincinnati 
jfurman   Getting rain in eastern Kansas
ronmoffett   Greg, its been nice here in Illinois. High 80s. Whats the temps in Colorodo  
GregF   cloudy and 64 here this morn
GregF   we have been in the upper 90's almost every day
carofer   it's been cold and overcast all summer here -- 50-60 degrees most days. Inland, however, it has been in the 90s
ronmoffett   Didn't know Illinois had better weather than Colorodo
ronmoffett   Where are you living Carofer ?
GregF   It's been unusual here this year. we are considered desert but we have got rain several times a week this summer  
GregF   corn is 10' high
carofer   i am in central california near the coast (santa cruz area). About 40 miles north of the big fire in big sur
ronmoffett   Carofer, ok, didn't know the temps got that cool there.  
ronmoffett   Is anyone planning on following the Olympics. I try and tune in when I can
GregF   My wife and I watched the opening ceremony last night and I have watched some rowing and bicycling this morn 
carofer   we tend to prefer winter olympics.  but i liked the opening ceremony
Johnson   We always start slow, but as more evnts happen it gets more interesting.  By the end of 2 weeks and the Olympics are over it feels like something is missing
ronmoffett   The opening ceremony was nice
GregF   I like the fact that they are planting a tree for every contestant 
ronmoffett   That is nice
carofer   one of our local sportswriters is in Rio - her greatest fear is being mugged
Johnson   Did anyone see the recent entry in Bruce's blog about Nusinersen?  It is focused on SMA instead of SBMA.  But I'm hoping there may be applicability to Kennedys
ronmoffett   That's probably a real fear.
GregF    I have herd that the government there dropped the ball with the things that they should have done. I would still like to go
TomK   I hear the big PUSH is to Move the Olympics back to Greece every 4 years?
ronmoffett   Johnson, I saw it and although it is not a direct correlation  it gave me some hope that maybe there might be a breakthrough with KD
ronmoffett   Tom I would be for that. I couldn't believe Rio got the games. I give credit to the athletes going down there. Battling the crime, polluted waters and the Z virus.
TomK   Ron; The people in Rio are starving and the Cops haven't got paid in Months.
DavidOhio   Good Morning sorry to be late, too many distrations
carofer   i wonder if the researchers will cover the applicability of Nusinersen in the kd conference
GregF   Good morning Ron
Johnson   We have been following the KDA site since one of our sons was diagnosed 18 mos ago.  It is encouraging to see so much going on with research in CRISPER, gene therapy for muscles being done at Michigan State, now this.
TomK   Congratulations David our Newest Board member.
carofer   olympics tend to be a $loser for the host country. Probably there should be contributions from all participant countries to cover the costs
DavidOhio   Thanks TomK
TomK   I thought the USA did contribute to the Olympics?
ronmoffett   Good Morning David - thanks for joining the Board.  
carofer   David, what are your goals as a board member? 
Johnson   I saw your bio, David, in the monthly message.  Glad to see you on "Board"!
DavidOhio   Hi RonM thanks for welcome I look forward to helping continue the goods thing KDA has done for all of our benefit
DavidOhio   carofer my first goal is learning the inner workings and then how best I can be of service.  my initial task is to serve as board secretary so that will be my primary contribution
ronmoffett   How has everyone been feeling ?
carofer   thx david, i hope to meet you at the conference
GregF   Ron this summer has been a struggle
ronmoffett   Greg - how so ?
DavidOhio   carofer I would like to meet you but unfortunately I will miss this year's conference, it is just too long of a trip for me to travel to San Diego on my own
GregF   The numbness that I have had in my feet and legs for years has moved into my hands and I have had a lot of trouble breathing. Have my respirator here at my office so I can use it during the day
ronmoffett   Greg - sorry to read this. Is there anything that helps the numbness. Heat , medication ?
GregF   not that I have found, I think that it causes the shakes in my hands to be worse also 
carofer   breathing problems tend to be a loss of diaphragm strength for me -- i got some exercises  from the physical therapist for this, and they help a little
GregF   My last visit I was told that my lung capacity was down to 42%. I am going to K.C to the Dr. in two weeks. will see what he has to say
carofer   the exercise for improving swallowing (on the website somewhere)  seems to help -- i try to do it 5-6 days per week in bed. It's like a mini-sit up.
GregF   I have never herd of that one. I will try to find it.
DavidOhio   GregF there are some breathing related exercises on the KDA website that Bruce shared and I have found them to be helpful also
ronmoffett   Greg - is it a Muscular dystrophy dr. ?
TomK   I have o find that Swallowing Exercise also
GregF   Yes Ron, at the K.U. med center in K.C.
GregF   My brother and I go together twice a year
DavidOhio   TomK I also got some additional swallowing exercises from a speech therapist and they have really helped me, but I did find important to learn them from her 
GregF   My Dr. did give me some "safe swallow" instructions as well
DavidOhio   The therapist I saw was associated with the TriHealth system here in Cincinnati
ronmoffett   Greg - here is a link to the page that has the exercise pdf. The swallowing execises are on page 13.  http://www.kennedysdisease.org/index.php/share-information/info-guides#Exercise"> http
TomK   David send me the Name etc....
GregF   Ron thank you
TomK   Thanks RON
ronmoffett   David - how far do u live from Cincinnati
GregF   We have high ozone warnings here in Colorado, it makes it hard for even healthy people to breath when it is really high
DavidOhio   I am about 15 miles north of Cincinnati proper and our county is considered part of the Great Cincinnati area
ronmoffett   Greg - you are welcome. Hope it helps. Here is another page that has breathing and swallowing exercises. http://www.kennedysdisease.org/index.php/share-information/info-tips
GregF   Thanks for the help
ronmoffett   Ok, that's not far. So the weather pattern is much better that where I live. You live much further South
Johnson   Greg, I'm believe you have struck an emotional cord with all of us on the call this morning. Thank you my friend.
GregF   Thank you Johnson I know that whining wont fix anything, but it is easy to get frustrated 
DavidOhio   RonM it depends on what you consider better, we tend to get your weather a couple of days after you, the main difference seems to me to be is the wind factor you Chicagoan's have much more to deal with 
ronmoffett   Johnson - how is your son doing ? I forget how old he is. Is he showing many symptoms ?
carofer   Here is bruce's blog post on the swallowing sit up exercise
ronmoffett   David - I guess I look at amount of snow. We are in the 34 to 40 inch annual average. My guess is you might be half that
Johnson   We are very fortunate so far.  He is in the early stages although he had symptoms going back 5 years or so.  They just had a baby boy!
GregF   Johnson, did it take the Dr. that long to diagnose him/
ronmoffett   Johnson - good to hear. Congrats on being a Grandpa. Grandpa's are important
DavidOhio   Ron we do not often get even half of that total, but we often has freezing rain and ice storms to battle
Johnson   Greg, probably like most of you,  no one could figure it out for a long time.
GregF   I think that because this disease is rare, most Dr. don't know about it
ronmoffett   David - that's not good. Maybe the snow is better. Its just damn dangerous to walk through the snow. I fall a lot more. 
carofer   i think a lot of neurologists are still in the dark ages
Johnson   Being a Granpa is one of the coolest things ever!!
TomK   Having Grand Kids makes the World Go Round!!
carofer   johnson, it's also comforting to know that the grandkid is kd-free
GregF   I agree, Grand kids are something special
DavidOhio   Johnson since I was diagnosed in 2009 a number of other extended family members have also been diagnosed with KD  it is helpful for the family to know the genetic pattern of KD
Johnson   Boy I'll say!!!!
DavidOhio   We are also looking forward to entering the Grandparent world in early December
ronmoffett   David - very nice. Congrats
Johnson   The family is actually quite small. so that helps
GregF   David you are so right, I was diagnosed in 2012 then my brother and sister got checked and found that they both have K.D as well. I think that helped my brother get a jump on things
TomK   David a Grand Child in December is Great You can Be GRANDPA/SANTA!
ronmoffett   Men - I wish everyone a good weekend. I need to transition and eat something and start my day. Be well 
Johnson   Until next time...
TomK   Enjoy the Weekend
GregF   My grand kids like to ride on my lap in my wheelchair, they think its great
DavidOhio   It was great chatting with all of you today have a great weekend and stay vertical! 
TomK   Me too my Granddaughter loves the ride on the Wheel Chair 
GregF   Have a great month
carofer   c u all  -- nice chat