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: Bruce Gaughran
     
david   Good Morning Bruce
Bruce   Morning, how are you doing?
david   It's warm sunny day here is southern Ohio unusual for July and so what could be better
david   How have you been Bruce?
Bruce   We had a beautiful 4th and today is also great.  Cool, low humidity and sunny.  WOW!
david   I feel sorry for those would had to deal with the hurricane, but I think we have that storm in part to thank for our good fortune weather wise.
Bruce   Life is good.  No complaints ... because no one listens. :-)
Bruce   Yes, your weather pushed into the South and made it nice while keeping the bad weather east of us.
david   We are heading to southwestern Colorado on Thursday and it looks like we get to enjoy so hot dry weather there this weekend.
Bruce   Family visit or vacation?
david   Vacation the highlight will be the Durango to Silvertion train ride through the mountains.  I also found on traillink.com a number of converted Paved rail lines that should allow us to see some more mountain and valley views at a more leasurly pace.
Bruce   Nice!
david   What's grear about the site that it covers most if not all of the nation and you can search for just paved or concrete trails.  and for some they provide parking designations and a few points of interest
Bruce   You should post the link with an explation on the KDA Forum.  People could use it.
david   I hope to share that and a little of our personal experience during the conference this year and if not maybe I'll see if I can make up an article for a future newsletter
Bruce   Good idea.  I know everyone will appreciate your sharing the good, the bad, and the ugly.  Hopefully, there is very little bad and ugly. :-)
Bruce   I guess we are the only ones today.  Must be the holiday weekend.
david   I wonder if you know whether any other KD man has experienced problems with jaw alignment.  My first cousion Bruce is having great difficulty eating and he thought it was related.  I suggested he discuss it with his doctors and make sure it was not something else.  We tend to blame too much on our condition in part because we can have such different acute symptoms
Bruce   Yup, the problem for me started many years ago.
Bruce   I began an exercise program to help restore the strength and it has helped immensely, but it hasn't eliminated the problem and the pain when it decides to rear its ugly head.
Bruce   Also, having support for the jaw when sleeping is also helpful.
david   Have you found an effective treatment, he has found it necessary to eat mainly smoothies, since he cannot chew very well
Bruce   I don't have a problem 99% of the time these days.  About 15 years ago the pain was bad enough that I had to support my jaw with my palm while eating.
david   Are those exercises part of the ones you have posted on the KD site or in your recent exercise blogs?
Bruce   Yes, some of them.  I do so many exercises these days I have to think about what is posted and in guides.
Bruce   Does he have to hold his jaw in place so it doesn't pop out?
david   Yes even when he is talking.  I am trying to get him to use the website more so I am hoping our exchange this morning will help show him how valuable it can be to get involved on the forums and chats and ask a lot of questions.
david   I know that all the time I spent immediately after my diagnosis lead me to the conclusion that I can take control of some things and that is there great benefit in working on those I can and accepting (not fight) those things I can no longer do.
Bruce   He can do a lot to ease some of the problems by being aware.  Using a pillow for support of the jaw at night will help loads.  Not eating hard things like bagels, for example, also helps.  But, I eat steak, nuts, most anything.  I still eat bagles, but take smaller bites and chew with an awareness of what I am eating.
Bruce   Great attitude, David.  You are exactly right.
Bruce   I might have tried five exercises for every one I keep.  It is a personal journey and one of exploration, experiments, trial and error.  But, in the end, I WIN!
david   Using what I have learned I now have a number of exercise routines that I do some daily some only 2 or 3 times a week.  My head, neck and vocal program is about 30 minutes and I try to it daily but the weekends are the hardest for me, too many other things to do.
Bruce   Moving the jaw back and forth exercises the muscles holding it in place.  Performing exaggerated winks also strengthens the jaw  muscles.  I do them ten at a time, several times a day.
david   The rest of the programs involve stretching (learned as part of the NIH study) and some hip and shoulder strength and stability routines that my physical therapist helped me develop.
Bruce   90% of my exercise program is done before 7:00 AM.  I am an early riser.  I do a long exercise program (90-100 minutes) Monday - Wednesday-Friday.  I do a short exercise program on the other days (aapprox. 20 minutes).  Then throughout the day I will take 30 seconds to 2 minutes (every two hours or so) and do some simple exercises including jaw and throat.
Bruce   All I can say, David, is that you are taking charge of your life and improving your quality of life.  Wonderful!
Bruce   This journey were are on is a very personal experience.  We have many self-beliefs we have to kill along the way.
Bruce   we are on
david   Most of that strength and stability routine has helped me maintain some mobility, like this morning I was able to take about a 30 minute walk with my wife.  We hope to use a little of that freedom during our vacation
Bruce   Yes.  That is wonderful.  You have taken control of your life.
david   I agree with your conclusion about it being a personal journey I for one am just very thankful that some men like you Bruce choose to share your experiences to help others learn from you that KD is not and never will be fun, but it definitely does not have to limit all of life.
Bruce   Life is a journey of self-discovery.  We might have some limiting issues, but we can usually get around most of them with mobility aids, and maintaining a positive attitude and using your head (safety).
Bruce   Well, I enjoyed chatting with you David.  Family just arrived, so I need to sign off.  Take care of yourself and enjoy your trip.
david   Thanks Bruce take care bye