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."

2016 Chat Room Transcripts

Topic: Open Forum    
       
DavidOhio   Good Morning All  
Guest6.97   GOOD MORNING  
DavidOhio   We have beautiful sunshine here in southwest Ohio for the first time in a several days, however we needed the recent rains.
Guest6.97   As of 5PM today I will be married 39 years!  
DavidOhio   Congratulations on your many years together.  My wife and I will celebrate 36 years in a few weeks
Guest6.97   Thanks David  
DavidOhio   I think today will be a general opportunity to share information about how each of us is dealing with KD.  So whatever is one your minds today please share and we will all try to help one another.
Guest6.97   In this last month my KD has progressed to my throat.  
DavidOhio   Have you seen a speech therapist?  I have done that twice since my diagnosis in 2009 and both times I learned some things that I could do daily to help maintain or improve swallowing etc
Gary_KC   Good morning, all.  
DavidOhio   Good Morning Gary_KC  
Gary_KC   We have beautiful blue sky this week, too in KC.  
Guest6.97   No but I did see my Neurologist and did say that swallowing is his main concern with KD patients
DavidOhio   If you have not yet done so Guest6.97 please check out the exercise material on the KD website there are a number of items that address the throat and neck however I have found that having someone check your form on using those movements is very important.  I suggest you ask for a referral from your neurologist or primary care doctor.
DavidOhio   Good Morning ronmoffett  how's life in Chicagoland?  
ronmoffett   Good morning all.  
Gary_KC   Guest6.97 I saw swallowing exercise in Living with KD blog.  
ronmoffett   Good morning David. Its going ok here. Been raining a lot. How is OH
Gary_KC   Hi ronmoffett!  
DavidOhio   Here is a link to a swallowing and throat info on the website.   
    http://kennedysdisease.org/index.php/share-information/medical-info/617-choking-and-swallowing-issues
ronmoffett   How have you been feeling Gary ?  
DavidOhio   here is another link to exercise information  
    http://kennedysdisease.org/index.php/share-information/info-tips
Gary_KC   Ron, it is beautiful blue sky with no cloud this week. I kive it.  
Gary_KC   I like it.  
ronmoffett   Blue skies are a lot easier to take than the cold and rain.  
Gary_KC   David, thank you very much for the link. I find lots....   
DavidOhio    Ron we have rainy days just like you, it started out nice and sunny today but now the clouds have returned
Guest6.97   David on my side of Town bright skies and sunny!  
DavidOhio   However we really needed the rain and at least for the last several days the rain has fallen slowly instead of all at once.
ronmoffett   I think you get are weather pattern. Although I am not sure if it gets as cold in OH as here in Illinois
ronmoffett   Good Morning Stewart. How are you feeling today ?  
Guest6.97   It gets cold but not that windy  
DavidOhio   Ron we tend to get what you had a day or two later.  And it can get very cold here and windy at times but never as much as you guys get up there.
ronmoffett   Good morning jfurman. How are you feeling ?  
DavidOhio   However not even that Chicago cold will keep us away this winter once our grandbaby arrives.
ronmoffett   David. yes. very exciting. When is the due date ?  
DavidOhio   December 1st, that is why we made reservations months ago to spend Thanksgiving up north, certainly do not want Anita traveling that late in the process.
Gary_KC   I took a flu shot this week. Have everyone done it?  
ronmoffett   David, that's getting close. Early December, the weather still isn't too bad. 
Guest6.97   I will get my shot in Last week of october  
ronmoffett   Gary, I think about it but last time I did. I got sick. Did you have any reactions to it ?
DavidOhio   My wife and I have talked about but will wait a little longer, we have heard that getting it this early the protection can run out before the flu season ends here in Ohio.
Gary_KC   Ron, no I did have any side effect.  
ronmoffett   David, How is your house now that the construction has ended and you have moved back in with the updates ?
ronmoffett   Gary, that's good. How have you been feeling lately ?  
DavidOhio   It is great, in particular the bathroom remodel makes showering so much safer for me. 
Gary_KC   Ron, my feet are always cold even summer. I can not sleep with the cold feet. 
ronmoffett   David, That's good. When was your house built ?   
Gary_KC   Daivd, that's great!  
ronmoffett   Gary, sorry to read this. My feet can get cold but not in the summer. Have you ever tried an electric blanket ? 
DavidOhio   Gary_KC, my wife made some flannel bags that she puts rice in and we heat them up for about a minute in the microwave.  I put it under the covers at the foot of the bed for a few minutes before getting in, makes a big difference for my feet.
DavidOhio   At one time we had purchased an electric fitted bed pad and that work great also, however it only lasted a few winter seasons.  I am thinking about ordering another one for this year, that way everything is a little warmer and not just my feet
ronmoffett   Yes, I have used an electric blanket in the past and it certainly helps.
Gary_KC   Ron and David, thank you for your nice advice. I use an electric blanket. It takes time to warm up my feet. My feet are very cold. 
stewart    Good morning Not sure if this is working...  
ronmoffett   Gary, does the dr. say this is from the KD ?  
Guest6.97   Good morning Stewart  
ronmoffett   Stewart, its working. Welcome to the chat.    
Gary_KC   Ron, my doctor said YES.  
ronmoffett   Gary, I was wondering. do you live in a house or an apartment ?  
Guest6.97   Cold WEATHER brings on Cold Extremities a symptom of kd  
Gary_KC   Ron, I live in an apartment.  
DavidOhio   I am not sure about cold feet specifically but I did read somewhere to include on the medical info for EMTs etc a caution that  for KD men in general their bodies have trouble regulating body temperature and tend to get cold quickly. 
Gary_KC   I guess that we generate less heat than others.  
ronmoffett   Being cold has always been a common thread with KD.  
Gary_KC   I use groves to go outside when temperature is below 50 degrees, otherwise, my fingers do not move.
ronmoffett   Gary, I live in a apartment/TH myself. Because its not a big drafty house. I am able to turn the heat up fairly high and that helps me in the winter. I also have an extra portable heater heating up my home. 
Guest6.97   Gentleman have a Good Weekend, I have to GO!  
ronmoffett   You too. Be well   
DavidOhio   Have a great weekend too chat with you next month  
ronmoffett   Good morning privlab. How are you feeling today ?  
Gary_KC   Ron, I have heat pad and portable heater too. My friends always tell me that my room is too warm in winter.  -(
ronmoffett   Gary, same here.  
Gary_KC   Bye David.  
ronmoffett   Stewart, were you having trouble getting into the chat room this morning ?
DavidOhio   Ron I plan to check later today but I think the Guest.697 was really my cousin TomK, so I suspect he had some trouble with login.  I will let you know what I find out.
ronmoffett   David, I think you are right. I was wondering that  Maybe I didn't scroll down but I didn' even see him on the chat
ronmoffett   I am not sure what would cause him to come in as labeled a guest.
DavidOhio   Your are right that person never showed up in the list and we have had a number of strange login names today
ronmoffett   Yes, not sure if they are having trouble figuring out the chat features or don't want to participate. Just not sure.
Gary_KC   David, you are right. I also found 4 strange login names.  
ronmoffett   Yes, I don't recognize the names.  
ronmoffett   Well October is going to be an exciting month. The Cubs are in it to win it. I hope they go all the way. It would be nice.
DavidOhio    Well now it is time for me to move on to other tasks this morning.  I hope you all have a great month in October that you feel well and I look forward to chatting with you in November.  Ron I too hope the Cubs have great success this month!!!
ronmoffett   Yes, its that time. I wish everyone a good month.   
Gary_KC   I ‘ve got go. It was a nice chat this morning. Let’s chat together the next month. Take care! 
ronmoffett   You too Gary. Stay warm.  
Topic: Open Forum                                                      
                                                         
DavidOhio    Good Morning All                                                    
Guest6.97    GOOD MORNING                                                    
DavidOhio    We have beautiful sunshine here in southwest Ohio for the first time in a several days, however we needed the recent rains.                                          
Guest6.97    As of 5PM today I will be married 39 years!                                                    
DavidOhio    Congratulations on your many years together.  My wife and I will celebrate 36 years in a few weeks                                              
Guest6.97    Thanks David                                                    
DavidOhio    I think today will be a general opportunity to share information about how each of us is dealing with KD.  So whatever is one your minds today please share and we will all try to help one another.                            
Guest6.97    In this last month my KD has progressed to my throat.                                                    
DavidOhio    Have you seen a speech therapist?  I have done that twice since my diagnosis in 2009 and both times I learned some things that I could do daily to help maintain or improve swallowing etc                              
Gary_KC    Good morning, all.                                                    
DavidOhio    Good Morning Gary_KC                                                    
Gary_KC    We have beautiful blue sky this week, too in KC.                                                    
Guest6.97    No but I did see my Neurologist and did say that swallowing is his main concern with KD patients                                              
DavidOhio    If you have not yet done so Guest6.97 please check out the exercise material on the KD website there are a number of items that address the throat and neck however I have found that having someone check your form on using those movements is very important.  I suggest you ask for a referral from your neurologist or primary care doctor.
DavidOhio    Good Morning ronmoffett  how's life in Chicagoland?                                                    
ronmoffett    Good morning all.                                                    
Gary_KC    Guest6.97 I saw swallowing exercise in Living with KD blog.                                                    
ronmoffett    Good morning David. Its going ok here. Been raining a lot. How is OH                                                  
Gary_KC    Hi ronmoffett!                                                    
DavidOhio    Here is a link to a swallowing and throat info on the website.                                                    
    https://www.kennedysdisease.org/index.php/share-information/medical-info/617-choking-and-swallowing-issues</a>                                           
ronmoffett    How have you been feeling Gary ?                                                    
DavidOhio    here is another link to exercise information                                                    
    https://www.kennedysdisease.org/index.php/share-information/info-tips</a>                                                   
Gary_KC    Ron, it is beautiful blue sky with no cloud this week. I kive it.                                                    
Gary_KC    I like it.                                                    
ronmoffett    Blue skies are a lot easier to take than the cold and rain.                                                    
Gary_KC    David, thank you very much for the link. I find lots....                                                     
DavidOhio    Ron we have rainy days just like you, it started out nice and sunny today but now the clouds have returned                                            
Guest6.97    David on my side of Town bright skies and sunny!                                                    
DavidOhio    However we really needed the rain and at least for the last several days the rain has fallen slowly instead of all at once.                                          
ronmoffett    I think you get are weather pattern. Although I am not sure if it gets as cold in OH as here in Illinois                                              
ronmoffett    Good Morning Stewart. How are you feeling today ?                                                    
Guest6.97    It gets cold but not that windy                                                    
DavidOhio    Ron we tend to get what you had a day or two later.  And it can get very cold here and windy at times but never as much as you guys get up there.                                      
ronmoffett    Good morning jfurman. How are you feeling ?                                                    
DavidOhio    However not even that Chicago cold will keep us away this winter once our grandbaby arrives.                                                
ronmoffett    David. yes. very exciting. When is the due date ?                                                    
DavidOhio    December 1st, that is why we made reservations months ago to spend Thanksgiving up north, certainly do not want Anita traveling that late in the process.                                    
Gary_KC    I took a flu shot this week. Have everyone done it?                                                    
ronmoffett    David, that's getting close. Early December, the weather still isn't too bad.                                                   
Guest6.97    I will get my shot in Last week of october                                                    
ronmoffett    Gary, I think about it but last time I did. I got sick. Did you have any reactions to it ?                                                  
DavidOhio    My wife and I have talked about but will wait a little longer, we have heard that getting it this early the protection can run out before the flu season ends here in Ohio.                                  
Gary_KC    Ron, no I did have any side effect.                                                    
ronmoffett    David, How is your house now that the construction has ended and you have moved back in with the updates ?                                            
ronmoffett    Gary, that's good. How have you been feeling lately ?                                                    
DavidOhio    It is great, in particular the bathroom remodel makes showering so much safer for me.                                                 
Gary_KC    Ron, my feet are always cold even summer. I can not sleep with the cold feet.                                                   
ronmoffett    David, That's good. When was your house built ?                                                     
Gary_KC    Daivd, that's great!                                                    
ronmoffett    Gary, sorry to read this. My feet can get cold but not in the summer. Have you ever tried an electric blanket ?                                             
DavidOhio    Gary_KC, my wife made some flannel bags that she puts rice in and we heat them up for about a minute in the microwave.  I put it under the covers at the foot of the bed for a few minutes before getting in, makes a big difference for my feet.                    
DavidOhio    At one time we had purchased an electric fitted bed pad and that work great also, however it only lasted a few winter seasons.  I am thinking about ordering another one for this year, that way everything is a little warmer and not just my feet                    
ronmoffett    Yes, I have used an electric blanket in the past and it certainly helps.                                                  
Gary_KC    Ron and David, thank you for your nice advice. I use an electric blanket. It takes time to warm up my feet. My feet are very cold.                                         
stewart    Good morning Not sure if this is working...                                                    
ronmoffett    Gary, does the dr. say this is from the KD ?                                                    
Guest6.97    Good morning Stewart                                                    
ronmoffett    Stewart, its working. Welcome to the chat.                                                      
Gary_KC    Ron, my doctor said YES.                                                    
ronmoffett    Gary, I was wondering. do you live in a house or an apartment ?                                                    
Guest6.97    Cold WEATHER brings on Cold Extremities a symptom of kd                                                    
Gary_KC    Ron, I live in an apartment.                                                    
DavidOhio    I am not sure about cold feet specifically but I did read somewhere to include on the medical info for EMTs etc a caution that  for KD men in general their bodies have trouble regulating body temperature and tend to get cold quickly.                     
Gary_KC    I guess that we generate less heat than others.                                                    
ronmoffett    Being cold has always been a common thread with KD.                                                    
Gary_KC    I use groves to go outside when temperature is below 50 degrees, otherwise, my fingers do not move.                                              
ronmoffett    Gary, I live in a apartment/TH myself. Because its not a big drafty house. I am able to turn the heat up fairly high and that helps me in the winter. I also have an extra portable heater heating up my home.                           
Guest6.97    Gentleman have a Good Weekend, I have to GO!                                                    
ronmoffett    You too. Be well                                                     
DavidOhio    Have a great weekend too chat with you next month                                                    
ronmoffett    Good morning privlab. How are you feeling today ?                                                    
Gary_KC    Ron, I have heat pad and portable heater too. My friends always tell me that my room is too warm in winter.  -(                                                  
ronmoffett    Gary, same here.                                                    
Gary_KC    Bye David.                                                    
ronmoffett    Stewart, were you having trouble getting into the chat room this morning ?                                                  
DavidOhio    Ron I plan to check later today but I think the Guest.697 was really my cousin TomK, so I suspect he had some trouble with login.  I will let you know what I find out.                                  
ronmoffett    David, I think you are right. I was wondering that  Maybe I didn't scroll down but I didn' even see him on the chat                                            
ronmoffett    I am not sure what would cause him to come in as labeled a guest.                                                  
DavidOhio    Your are right that person never showed up in the list and we have had a number of strange login names today                                            
ronmoffett    Yes, not sure if they are having trouble figuring out the chat features or don't want to participate. Just not sure.                                            
Gary_KC    David, you are right. I also found 4 strange login names.                                                    
ronmoffett    Yes, I don't recognize the names.                                                    
ronmoffett    Well October is going to be an exciting month. The Cubs are in it to win it. I hope they go all the way. It would be nice.                                          
DavidOhio    Well now it is time for me to move on to other tasks this morning.  I hope you all have a great month in October that you feel well and I look forward to chatting with you in November.  Ron I too hope the Cubs have great success this month!!!                    
ronmoffett    Yes, its that time. I wish everyone a good month.