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."

2017 Chat Room Transcripts

Topic: Open Forum    
       
GregF   Good Morning Ron  
ronmoffett   Good morning Greg. How ru ?  
ronmoffett   Good Morning Bruce  
BruceG   Morning  
BruceG   I'm not certain how long I can stay on this morning, but I'm here now.
ronmoffett   Greg. Were u able to log onto the chat without much difficulty ?  
ronmoffett   Glad ur here Bruce. how is the weather down in Georgia ?  
BruceG   Cool this morning - 41, but supposed to warm up to the 60s today and 70s early next week.
BruceG   GregF, where are you located?  
ronmoffett   Good morning dbymay  
GregF   Ron I am well and got onto chat really easily this time  
GregF   Bruce I am in eastern Colorado  
ronmoffett   We have had a very nice winter here Bruce, Supposed to be 55 tomorrow
This email address is being protected from spambots. You need JavaScript enabled to view it. Good Morning sorry I am late but had trouble finding out which login and password combination works now.  I had it would have been the same as my previous login and password.  Ron dbymay is really DavidOhio
BruceG   Our winter has been very mild with only one cold week in January and a few cold days in February.
ronmoffett   Greg, that's great to here.   
BruceG   David, are you a Buckeye fan?  
ronmoffett   David, thanks for clarifying. I was wondering how ur doing. How ru and the family ?
ronmoffett   Greg, ur in the snow capital of the US. How do u do it. Have u lived there all ur life ?
This email address is being protected from spambots. You need JavaScript enabled to view it. Bruce I do not follow the Buckeyes much being from southwestern Ohio I more attune to the UC Bearcats
GregF   Out where we are it is more desert we don't get much snow and I have lived here 20 years we came from eastern Kansas
BruceG   I love college ball and with the NCAA Tournament starting soon, I am as happy as can be.
ronmoffett   Bruce, ur on the border of TN. Do u follow college sports ?  
GregF   It does get really cold here and thats hard to handle sometimes  
BruceG   See my previous comment, Ron  
TomK   Good  Morning Snow Day in Cincinnati  
ronmoffett   Are u for TN colleges or GA colleges. Bruce  
BruceG   TomK, good mornomg.  
BruceG   I just love a good game no matter who is playing.   
ronmoffett   Good Morning Tom. Were you able to login to the chat without difficulty this morning ?
This email address is being protected from spambots. You need JavaScript enabled to view it. Yes Cousin Tom there is a nice light coating of snow up here as well, thankfully I do not have to get out in it until later this afternoon
TomK   Easy login  
TomK   My daughter is on her way to Chicago to See "HAMILTON"  
ronmoffett   I am not that big of a college fan except for basketball and the NCAAA tournament. This is a lot of fun to watch. I get involved with some brackets.
BruceG   She must have really wanted to see it if she is willing to drive that far.
TomK   It was A BIRTHDAY GIFT TO HER HUSBAND...  
BruceG   When I was still working, I won our pool at work one year. It was just luck, but it was a nice payoff.
This email address is being protected from spambots. You need JavaScript enabled to view it. Bruce I will follow the NCAA tourney also but what interests me more right now is how well the ladies from Thomas More College ( my undergrad college) will do this year in division III play.  As of yesterday they had won 95 consecutive home games and were heading to that final four once again.
BruceG   Everyone who has seen Hamilton really likes it. I hope they enjoy it also.
ronmoffett   Greg, I didn't know that there was less snow in the dessert area. I thought the whole state got pounded with snow. I hate the snow here in Chicago most of all - been here all my life. Looking to head out of Illinois soon.
BruceG   Thazt is what is fun about college sports. Look at the UConn women. AN amazing record.
TomK   My daughter did not want to wait until it came to Cincinnati 2018  
GregF   The only time I ever liked snow was when I was Elk hunting. Now I can't hunt and I have no use for snow
TomK   Greg where did you hunt ELK?  
BruceG   I was thankful to be able to retire in Georgia. The winters are short and mild.
ronmoffett   Greg - I agree. The snow just makes it hard to get around. I am also afraid that I will fall because the paths aren't shoveled that well.
This email address is being protected from spambots. You need JavaScript enabled to view it. Bruce my brother would agree for years he had season tickets to Bengals games and then several years ago switched to attend UC Bearcat football and has enjoyed those games so much more than the pros
ronmoffett   Bruce - with being from the far north. Any adjustments going to live in the South.
BruceG   I use to love the pros, now I only watch the playoffs and Superbowl. College is much more fun.
GregF   in north western Colorado, on the flat tops. It is wilderness area with no motors allowed so we would drive to the end of the road, unload the horses and pack six miles up the mountain and live in a wall tent for a week
GregF   Can  
GregF   can't do that any more  
BruceG   Ron, most days in the winter are like fall in MN. I love it because weather hardly ever holds me back.
ronmoffett   Greg - that sounds like a great way to live. I imagine u miss it.  
GregF   I really do I looked forward to it all year  
BruceG   Greg, that sounds like fun. My nephew and Brother in Law hunt elk in Colo. every year. My uncle who lived on a ranch in Jackson, WY, was an avid hunter.
ronmoffett   Bruce - that's something I consider because I like being outside so much. It can be hard with the winters here in Illinois to b outside.
GregF   You can't imagine how you can unwind up there like that  
BruceG   I was a camper and hiker. Spent a lot of time outdoors especially hiking Mount Rainer when I could still climb. I miss that the most.
This email address is being protected from spambots. You need JavaScript enabled to view it. GregF, I think can imagine even though I have never taken an adventure like you described.  Our favorite vacation spot is Rocky mountain national park and just getting to drive through the area and occasionally walk around one of the lakes is incredible.
BruceG   It was fun to be looking down on Mountain Goat and watch them.
GregF   I would really like to find a small camper for me and the wife but finding one that is east to get in and out of is a challenge
TomK   I hope I can still take my Grandchildren Fishing!  
GregF   we still like to go to RMNP. we like to go to bear lake  
This email address is being protected from spambots. You need JavaScript enabled to view it. TomK do you have some favorite places around here?  
BruceG   Greg, contact Mike Goynes and ask asbout his RV. He has a lift on the one side to lift him and his wheelchair up inside. They spend months cruising around the country.
GregF   I have seen them on the internet but the cost is prohibitive   
BruceG   A friend of mine was mayor at Estes Park, CO. They live up where the elk actuallly come up on his deck to eat.
This email address is being protected from spambots. You need JavaScript enabled to view it. GregF Bear Lake is a great place and most of the path around that lake is accessible for a wheelchair!
TomK   U I take the Kids to Miami Whitewater Park  
BruceG   I use to love to trout fish (fly fishing). It was so relaxing.  
This email address is being protected from spambots. You need JavaScript enabled to view it. Bruce from one of motels along Big Thompson River we would see all kinds of wildlife  from the windows
GregF   David; It is and for someone who can still walk some it is not a hard hike either
This email address is being protected from spambots. You need JavaScript enabled to view it. TomK that is a great park we are blessed to have some many park options here.
BruceG   David, we live on a ridge above a lake. 3 and a half wooded acres. Deer, turky, coyote, etc. all visit us here.
TomK   Great Park and has the Perfect spot for small kids to fish  
BruceG   I still remember when my son caught his first trout. He was probably 6-7. When he finally landed it he was so proud. On the way home, he passed out in the back seat with a smile on his face. We still talk about it today.  -)
This email address is being protected from spambots. You need JavaScript enabled to view it. GregF yes when we were in RMNP a few years ago I found 6 other accessible walks around lakes or through some wooded areas, most of our national parks have some accessible areas.  In fact RMNP has an accessible "back woods" camp site just off an entirely accessible picnic area.
GregF   I didn't know about that, I will have to check it out this summer  
BruceG   In my last  few years of hiking the mountains, I was able to slide down a lot of trails (by accident) because my quads just wouldn't hold me up any longer.
This email address is being protected from spambots. You need JavaScript enabled to view it.  GregF the camp site and picnic area are just off the road beyond the entrance to Fall River Rd!
GregF   Our kids like to go up to RMNP in the winter, they have some sledding areas they really like
GregF   Thank you for that I know about where you are talking about  
BruceG   Well, guys, I enjoyed chatting. I promised to take my wife into town. Take care and stay upright.
GregF   Bruce, Have a great day  
ronmoffett   U2 Bruce. Have a good day.  
This email address is being protected from spambots. You need JavaScript enabled to view it. Have a great day Bruce stay vertical!  
TomK   Enjoy the Weekend  
ronmoffett   How has everyone been feeling ?  
TomK   Still TRYING to get a New Pad for My wheel chair  
GregF   Ron I have been doing well. Went to the Dr. in Kansas City last week and got a good report
ronmoffett   Tom - where do u find those pads ?  
This email address is being protected from spambots. You need JavaScript enabled to view it. Ron I other than an occasion throat troubles in the morning I am doing very well and hope you are also
TomK   Ron I have to order them from the Wheel Chair REp  
GregF   Tom what kind of chair do you have?  
ronmoffett   Doing ok David - been very busy with work. Some days I don't know if I am coming or going. I am looking to see if I can take a coule days off in a few weeks just to get a break.
TomK   Greg I have a QM-710 chair handled locally by NuMotions Inc  
This email address is being protected from spambots. You need JavaScript enabled to view it. My daughter asked why some with KD have used inhalers to help with throat troubles and I recall hearing about this at one of the conferences but did not recall the why, any of you know that answer?
ronmoffett   Greg. KC.  How far ru from there ?  
GregF   NuMotions is who I got my chair through as well, They are good but slow here
GregF   Ron I am 10 hours from KC.  
TomK   They are very slow and demand that I get PT evaluation before they provide a new Pad!
ronmoffett   I don't know David. I have a lot of issues with my throat closing when I try and drink fluids to fast. Its frustrating. I don't believe an inhaler would help me.
GregF   Yep I need new batteries and I need the Dr. to fill out paperwork before they will order them
This email address is being protected from spambots. You need JavaScript enabled to view it. Her concerns was that part of the KD symptoms would impact our lungs and that was a new area of concern for her.  I do not think our lungs are affected except by aspiration issues caused by a swallowing troubles.
ronmoffett   Greg. That's not too bad. Any drs closer ?  
TomK   My Numotions rep need more than a Doctor note they need a Total Evaluation from a register PT
GregF   I was diagnosed in Denver. He said " you have KD. and there is no cure have a good life, My brother is still in Eastern Ks. and goes to K,U, med center and they are great so thats why I go all the way to K.C.
ronmoffett   David, the only time I have heard of problems with the lungs being involved is when men catch pneumonia/flu . Don't have the strength to clear the fluid from there lungs and are in trouble. 
This email address is being protected from spambots. You need JavaScript enabled to view it. TomK given issues I have had with other health care issues these last few years I am not surprised that getting service in that area was also made more difficult
GregF   In order to get my chair in the first place I had to get two Dr's, and a P,T to fill out the paperwork saying that I needed it
TomK   Have any of you Guys taken the Barium Swallow TEST?  
GregF   Tom Yes I have and it Sucks  
ronmoffett   Greg - makes sense. Many of those University medical centers are great. 
TomK   I failed My Swallow test and yes it does Suck!!  
GregF    My wife and I usually take a few days and visit family and then my Brother and I go to the Dr. together
This email address is being protected from spambots. You need JavaScript enabled to view it. TomK yes I had that test down twice since my diagnosis, laryngospasms were one of my earliest symptoms.  Both times after the test I have had several sessions with a speech therapist and she has help give me exercises to do that have work well for me. 
GregF   Have any of you guys had to start using a neck brace?  
TomK   Dave did you re take the TEST?  
This email address is being protected from spambots. You need JavaScript enabled to view it. If I do not do my normal neck and throat routine for more than two days I notice more difficulties.  Most of the moves I do are on the KD website along with the other smart exercises that Bruce has posted to that site
ronmoffett   Greg - I have not yet. I know many have. Its tough because the brace can weaken the muscles.
TomK   Dave I do your neck & voice exercises in the Morning  
This email address is being protected from spambots. You need JavaScript enabled to view it. Yes I have had two barium swallow panels and did not like either one, but what I learned afterward from the therapist made having those tests worth it.  If you did not get therapy ask your doctor to order it.
GregF   The muscles in my neck are getting really week and my neck is out most of the time. They mentioned a neck brace but I have pride issues
TomK   Got to go Guys have a GOOD Weekend!!  
This email address is being protected from spambots. You need JavaScript enabled to view it. From the last test period I added one that requires pressing the back of the tongue to the roof of my mouth, I imagine trying to pull it up through the top of my head, hold it for a count of 20.  that one seems to help with being able to clear my throat better.
ronmoffett   Greg - I understand. But if u need it. U need it. I would just encourage u to keep doing neck exercises to keep the muscles as strong as they can be.
GregF   Tom it was good chatting with you Have a good month  
ronmoffett   Take care Tom. Have a nice weekend  
TomK   Thanks  
GregF   Ron I know your right,   
ronmoffett   Greg - I can't remember. Do u live alone ?  
GregF   No I am married  
This email address is being protected from spambots. You need JavaScript enabled to view it. I think we all know what we should do, but some times it just seems like too much trouble.  At least that is my story.
GregF   When I start these things it feels like I am giving up and that goes against my grain 
ronmoffett   Greg - I don't think ur wife would care about the brace.  
This email address is being protected from spambots. You need JavaScript enabled to view it. However part of what keeps me going back to the routine every time I get too busy is that part of me knows that doing it help keep me more mobile and self-susficient
GregF   Using the wheelchair was awful but falling was worse  
GregF   Ron again you are right, I am the one with the problem  
GregF   Like I said Pride Issues  
GregF   Sometimes knowing and accepting are miles apart  
This email address is being protected from spambots. You need JavaScript enabled to view it. Acceptance of any limitation is not easy I will never like it that my wife has to handle our luggage etc, but she is just thankful that we can still travel.
ronmoffett   I understand  
ronmoffett   KD is certainly hard but I feel it could be a lot worse. A lot worse disease out there
GregF   David my wife is there for me as well, even when I can't get the lid off of a water bottle
This email address is being protected from spambots. You need JavaScript enabled to view it. Well gents this has been a great chat today thanks.  Greg thanks for reminding me about RMNP I think we need to head back out that way next spring, too much happening this year to allow that.
GregF   Ron I agree when I see some of the diseases out there I know I don't have anything to complain about
ronmoffett   Men. It was nice catching up with you today. I hope you have a nice weekend. I need to transition.
GregF   David If you make it let me know I would love to meet you there for an afternoon
This email address is being protected from spambots. You need JavaScript enabled to view it. Have a great rest of your weekend and until next time be safe and hopefully a little warmer each day as the spring time begins.
GregF   Have a great month guys