Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"The web site acted as a central organizing influence for the sharing of information and brotherhood. Without the KDA, I was alone, as this disease is very rare and even my neurologist was less than fully knowledgeable."

Archives - 2015 and Older Transcripts

Topic:  Open Forum
Host:  Bruce Gaughran
Bruce Morning Hugo
Hugo Rodriguez Good morning Bruce, sorry for the delay (I was out watering the grass)
Bruce No problem, the chat doesn't start for another fifteen minutes.  How are you?
Hugo Rodriguez Fine, thanks a lot, how aqre you?
Bruce Doing good, thanks.  I need to step away for a couple of minutes myself.  Be right back.
Hugo Rodriguez Actually, the disease have not affected me too much.
Hugo Rodriguez I went absent in last september chat
Hugo Rodriguez but I read the transcript in the KDA pages last nigth
Hugo Rodriguez last night
Bruce I'm back ... too much tea this morning.  :-)
Bruce How old are you Hugo?
Hugo Rodriguez That's good, I already had a cofee. I'am 61
Bruce Okay, I'm 66.  Good to hear that the progression hasn't been to bad for you.
Hugo Rodriguez Wildeman was asking if we are not more able to build muscle, but some years ago, before knowing I was affected with, I was going tro the gym and I beleived it was beneficial to me.
Hugo Rodriguez But I am not able to laugh loudly, can you?
Bruce Exercising smartly is good for you.  Too much can be harmful, however.
Bruce I don't have a problem with laughing loudly.  I can't imagine how that could be related to KD ... hmmm?
Hugo Rodriguez I believe that
Hugo Rodriguez But if you can, probably I also could do it.
david Good Morning
Bruce I exercise every day.  I do 15-20 minutes of light exercises every other day and 90+ minutes oin the in-between days.  It seems to work for me.
Bruce Morning David
Hugo Rodriguez Good morning David, how do you doing?
david I am well this morning and you?
Bruce David, are you an Ohio State fan?
Hugo Rodriguez Fine thanks, I am enjoying nice weather after a heavy rain period
david Living in a town surrounded by OSU flags each weekend for over 30 years has slowly converted me, Go Bucks!
Bruce Tropical Storm Karen is supposed to hit us tomorrow with up to 6 inches of rain.  But, it doesn't appear to be too bad as it nears landfall.  Let's hope it is only a minor inconvenience.
Bruce I moved to Georgia when I retired and now I am a Georgia Bulldog fan.  Go DAWGS!
Hugo Rodriguez We were between Ingrid and Manuel, before Karen 
david It is always scary when large amounts of rainfall is expected, hopefully not many streams hit flood stage.
Bruce We live in the woods on a ridge overlooking a lake.  If it floods here, the whole area is in serious trouble.
Bruce Well, not many joining the chat today, let's get started with an offical :  BEGIN CHAT
david Bruce I should explain that I only keep track so that I know the mood of fellow Sunday School members on Sunday morning.  From your question should I assume Georgia and Ohio State do battle today?
Hugo Rodriguez As it sounds, it is a nice place when rain is not heavy
Bruce No, I just love college football.  I hope for good games.  Ohio State plays Northwestern today.  Georgia plays Tennessee.
Bruce Hugo, we love it here and are blessed to be close to the city, but far enough away to live in nature.
david Here in southwestern Ohio it is a bright sunny morning, but not veryh fall-like high expected in low 80's.
Hugo Rodriguez Not relevant football in Mexico, and it exist the risk that Mexico do
Bruce I had planned on a topic like ... No everything going on is related to Kennedy's Disease, but what would you two like to chat about?
Hugo Rodriguez do not participate in Soccer World cup
Bruce Morning Ron
Hugo Rodriguez Hi Ron
Bruce Ron, are you a Northwestern fan?
david Hugo -  Soccer (or football to the rest of the world) is also an exciting game.
Ron M Morning Bruce, Hugo, David
Hugo Rodriguez Yes, it has a lot of fans
david Bruce - I suggest we chat about your recent articles on KD and exercise, I found each one to contain valuable information as well as confirmation to continue to exercise.
Ron M Bruce, I watch the football games when I can but I can't say I am a huge fan. I don't watch a lot of college football. I know you are a fan of college football. What teams do you follow?
Bruce Yes, David, if you saw my remarks above, I exercise every day.  We are anxiously awaiting the results of the exercise trial to be published.  
Ron M Bruce, do we have a better idea of the publishing date/
Bruce Ron, I watch a lot of games and have a few favorites (Georgia, Penn State, Minnesota, Alabama, for example).  I just want to see good games.
david The one that most interested me was the discussion on neck muscles.  I shared your comments with my physical therapist and we worked out some additional daily efforts for me.  I do not have as much discomfort in my neck since starting.
Hugo Rodriguez Let me please repeat the question, already answered by Bruce, are you able to laugh loudly?
Bruce We hope to see something published early next year, but there will be an update at the KDA conference in November.
Ron M Bruce, do you follow Pro football or just college.
Bruce Ron, I watch a few pro games, but don't follow it religiously until the playoffs.
Hugo Rodriguez Probably I will no attend the Conference in November, by financial reasons.
Ron M An update would be nice. I won't be at the conference but I will hopefully get the info via notes.
david Hugo, yes I can laugh loudly, however I have been singing in choirs and choruses for abut 50 years so my experience might be different than others.
Bruce Neck weakness is something that impacts many of us with KD.  The exercises I do every day seem to help me.  Also, being aware of what causes neck fatigue helps.
Ron M Bruce, I am the opposite. Watch as many Pro games as I can. My son and I are involved in fatasy football. I will watch a few college games here and there. I will watch a lot of Bowl games though.
Bruce My one brother had severe neck weakness that appeared in the late 60s.  He had to use his hand to rest his head on.
Hugo Rodriguez Time before I could sing, now it is difficult, and when I try to shout I feel suffocated
Bruce Hugo, have you discussed this situation with your doctor?  How is your breathing?  Do you practice deep breathing and coughing regularly.  They seem to help me.
david Another thing I have learned from my physical therapist is to try cold compress for 10 minutes or so on my neck and shoulders when there is more discomfort than normal and I think it releaves some inflammation and aloows me to resume careful exercise.
Hugo Rodriguez Thanks for your comments David, certainly I have some troubles with breathing and also with dry drowning
Bruce I believe neck problems can be the result of sitting at a desk looking at a monitor (for example) too long.  Breaks are necessary.
Hugo Rodriguez I will try the coughing exercise
david Hugo I can attest that following Bruce's exercise guides to slowly add things like the breathing exercises have really helped me maintain and even expand my singing.
Bruce Hugo, it can be helpful when used with deep breathing.  I do them every day (morning and evenings).
Hugo Rodriguez Thanks a lot for the recommendations
david Bruce I agree and also notice more discomfort after an hour or more at the computer.
Bruce My thoughts are to stimulate the motor neurons and muscles every day.  Make it a part of your daily routines.  This includes the lungs.
david Getting up and moving around for a couple of minutes seems to releave the discomfort.
Hugo Rodriguez I feel discomfort when I watch a movie in the bus that take us to the job (it is a 60 minutes trip)
Bruce Since we do not stimulate ourselves like when we were more mobile, it is important to work the lungs and heart (if your doctor doesn't have a problem with it).
Bruce Hugo, do you mean your neck?
david Hugo - check out the mouth and throat exercises on the KDA website, I started using some of those over 4 years ago and my episodes of dry drowning have decreased significantly
Hugo Rodriguez I'm sorry Bruce, I don't understand very well the question
Bruce I wrote six articles for my Living with KD blog about improving the quality of your life by taking care of yourself with simple, but effective exercises.
Hugo Rodriguez I will take your gi
Bruce Hugo, you said you sat for 60 minutes each day watching a movie on the bus.  Does the discomfort you feel impact the neck area?
Hugo Rodriguez ... yur guides seriously. About my neck, I feel discomfort if I stay watching the monitor continously, but if I move my neck the trouble dissapears
Bruce I tell my neighbors that if they see me roating my neck or shoulders or singing "EEEEE" or "AHHHHH" (for example) bto not be alarmed.  I am just exercising my neck, throat and lungs.  :-)
Hugo Rodriguez yes, it is importat the are informed about what happen with us.
Bruce I have a golf cart and walk my dog four times a day.  I use the time to exercise the facial, throat, neck, jaw and lung muscles.  I know it muist look strange, but it works for me.
Bruce Ref. research, I found the leuperin (spelling) trial concluding with no recommendations interesting.  I have been following that for several years.
Hugo Rodriguez I do exercises with a spoon on my tongue to provoke the sensation of vomiting to prevent dry drowning, as recomended by a doctor
Ron M Bruce, I think about getting a dog but question if I can clean up after it down the road when the KD gets worse. Do you find cleaning up after the dog difficult.
Bruce Hugo, what works for me is sticking my tongue out and lightly grabbing the tongue with my teeth and then swallowing ten times.  I do this several times a day.
david Bruce I am not familiar with that term - leuperin, what was the expected outcome for that study
Bruce Ron, I live in an area that doesn't require that.  My dog only goes in the meadow (community area sounding the lake) and in our large yard.
Hugo Rodriguez Thanks Fruce, sounds helpful. I will try it.
Ron M That certainly is nice feature of the community your in. I think I need to find one of those communities.
Bruce I am spelling it wrong.  It is chemical castration.  There were several studies and at first they saw some initial positive results, but over the long run it didn't slow the progression.  The trials took place in Japan.  Look under research updates on the KDA website and you'll see more on it.
Bruce We live on 3½ wooded acres with an invisible fence.  We have two rescued dogs.
david OK I am aware of a study using chemical castration and that is was inconclusive
Bruce That's the one.
Ron M Sounds beautiful Bruce. I know Georgia has some beautiful land.
Bruce We are hoping for two trials within the next year sponsored by NIH.  
Ron M Anyone have an opinion on the travel sccot. Saw the videao on the KD site. Compared to other travel scooters?
david Bruce -- will those trials be focused on drugs reducing testosterone?
Bruce Hugo, I have also found that sleeping with my shoulders and head elevated minimize the occurance of dry drowining.
Bruce No, David.  
Bruce One if IGF-1 (for muscles).  It has gone through a lot of testing and still looks positive.
Bruce Ron, how mobile are you today?
david Ron -- my only experieced in seeing one of them being used at one of the annual conferences and the user was very happy with it.  So I filed that away for consideration as needs arrise.
Ron M I can walk. Starting to have problems with balance. Use to walk for miles, loved it. Now can only walk a block or so. Looking for something to allow me to be outside on a path like when I would walk. 
Bruce I had a scooter, but couldn't use it indoors (turning radius).  The small one shown was too small for me.
Hugo Rodriguez Dry drwning during sleeping does not happen so often. Some time I was sleeping with my bed slanted because , befor the KD diagnosis, a doctor beleived that the trouble was a hiathl hernia.
david Bruce, I recall hearing and reading about IGF-1 and it would be nice to have a clinical trial to determine whether is could help us.
Ron M Good to know David, thanks
Bruce Ron, I understand.  We were hikers and walkers.  It was a difficult transition for me.  Most scooters are not designed for off road use (paths and trails).  Keep that in mind when looking for one.  
Ron M I would be looking to use the scooter outside so the turning radius is not an issue. But good to know. thanks Bruce
david Ron, you might want to contact Jameson I recall that he was one who had it at a conference.  I think he uses it daily.
Bruce There are some scoorters specifically designed for trails, gravel, etc.  They have a higher ground clearance, better tires, etc.
Ron M Thats good to know Bruce. I guess I have to transioitn out of the idea of being on a hiking path
Bruce I am not saying to transition out, just be aware, and if your plan is to use it off-sidewalk, buy something that is designed for that.
Ron M Thanks david I will.  
david Ron - do not give up entirely on having some hiking experiences.  When we recently visited Rocky Mountain National Park I found 6 or 7 trails that were maintain to allow wheelchair access.  I am also aware of a number of areas locally that have made efforts to offer what some all "all persons" trails.
Bruce The other thing I found out about many scooters is that they are not designed for steep hills.  Motors burn out as well as the moptor braking unit.
Bruce Good point, David.  Yes, more access is being made available for those of us that require mobility support equipment.
Ron M Bruce, I understand. The problem comes into the ones that can go off road look to be heavy and I wouldn't be able to lift it. The travel scoot is only 30 pounds so it is very attractive but the wheels are small. Doubt it would be able to handle a gravel roud but I will try and find out. Thanks
Bruce Now, I have seen some very interesting chairs that are designed for the outdoors.  They are cool!
Bruce Ron, I understand.  I had a van with a Joey lift for the scooter.
Ron M Didn't know that David. I will certaily look into that where I live. I like being outdoors.
Bruce When I couldn't walk very far safely I switched to a bike.  That was great for a few years.  
Ron M Bruce, I might need to go down that path but it is an expensive one. That is why I am holding out. Appears to be no mercy in the van conversion business for lifts
david Ron - not sure what type of car you have but you should also look into lifts that can be installed in a van or suv that can handle a heavy chair or scooter.  I seen some that you should be able to handle.
Bruce There are also several lifts that fit into a trailer hookup on the back of a car.  You drive the scooter unto the platform and it then lifts it up and locks in into place for driving.
Ron M I am looking into it David. I go to these mobility shows. It is just expensive. I am going to check out and see if I can find anything used
Bruce Used, is good, Ron, but make certain you have someone local that can service the scooter.  Occasionally, a business will not service a scooter that isn't bought through them.  Just another consideration.  
Ron M Didn't knopw that Bruce. Thanks everyone for the advice. I will report back on what I find that helps. In the mean time I have to get my son to a basketball game. Be well
Bruce Enjoy and thanks for joining us today.
Ron M Thank you 
Bruce Well, guys, I have enjoyed chatting with you today.  It is time to grab a little lunch and turn on the TV.  It is GAMEDAY!  :-)  Please be safe.
david Thanks for hosting the chat Bruce, I always learn something.  Until next time stay safe.
Hugo Rodriguez Thanks a lot for all your recommendations. Still doing well!