Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am glad to finally see information being made available about this disease.. THANKS for the website"

2017 Chat Room Transcripts

 

Topic: Open Form  
     
DavidOhio   Good morning krish1002
ronmoffett   Hello all.
DavidOhio   Good morning Ron, it's a beautiful day in southwest Ohio, how about there in Chicagoland
ronmoffett   David. Its just perfect here. Supposed to be 745 to 80. Low humidity.
ronmoffett   krish - where are you from ?
DavidOhio   My wife has already spent a little time out in the flower gardens, she of course does most of the work.
ronmoffett   Its a beautiful day for that. How big is the garden ?
DavidOhio   But I am able to assist and it is good to be outside when it is so comfortable
ronmoffett   I used to love to do all that gardening and landscaping. I always had an outdoor project going as an excuse to be outside. Now I just sit outside and walk my dog.
DavidOhio   We have several around the house mainly around the foundation of the house and garage.  Most of it is planted in perennials but we also have a small area with two tomato plants and some cucumber plants.  Everything is green and lush but no benefits yet. 
ronmoffett   Sounds nice. Fresh tomatoes are the best.
ronmoffett   How have you been feeling ?
DavidOhio   I am doing better than I deserve I had allowed my good exercise habits to slip away early this year, got too busy doing other things.  But have been more disciplined the last couple of months and it helps a great deal.
ronmoffett   In what way does the exercise help u ? Do u feel stronger ?
DavidOhio   I have regained both stability and some stamina.  I can handle my normal routines much better when I do those exercises.
ronmoffett    ru still walking everyday ?
DavidOhio   Strength is really hard to measure, but a couple of years ago I was using some 2 lb. dumbbells regularly and I have not be able to resume using them.  The main problem with them is my left shoulder there is an impingement that gets inflamed at times and recovery takes awhile.
DavidOhio   Not walking every day instead I am trying to keep it at least 3 days a week for 30 minutes
DavidOhio   I will try again to ask you about your work efforts.  I know that you had struggled more in the winter.  Are you feeling better.
ronmoffett   It is hard to measure. I have stopped exercising because of work being so busy. The only exercise I get is walking my dog about 30 minutes a day. I break up the walks to 3 or 4 so its manageable. Recently, I have had more weakness in my legs with balance issues. I am feeling a decline.  
DavidOhio   Not sure what happened I guess my computer froze. Sorry just refreshed the link
ronmoffett   Been in a decline. I feel ok though. Work has been hard. I am concerned about the winter. I am going to try and take time off through out the winter months to see if that helps at all. I feel that I survive the winter more or less. My son will be in college next year so I am starting to look around at places where the winters aren't as severe. 
DavidOhio   I am not sure how far south you'd need to go but it is a good idea to begin to do some research.  For most cities you can easily get an average temp by month as a starting point.
bedardrobert   good morning from Canada
bedardrobert   I haven't logged into chat for a long time....this platform is new to me
ronmoffett   I am starting the process. I have been visiting a few over 55 communities. Not sure how far to go. My son is going to stay in the area so if I go way south near Florida. Not sure if I would be able to see him. Trying to find a balance
DavidOhio   Good morning how are you doing today in Canada, Ron and I both are enjoying a more fall like day than the typical hot summertime.
ronmoffett   Good morning Robert. Glad u could join and figured out the platform
bedardrobert   thanks how is everyone....not a lot of people here only 4 of us
ronmoffett    Yes. I think only 3. Not sure on the status of krish
DavidOhio   Yes Robert it is a small group today.  We have no script today just sharing about our personal efforts and what works and does not work well.
ronmoffett   How have u been feeling Robert ?
bedardrobert   names that are not familiar....I used to chat when the creators of the association, Terry and his wife, had just started 
ronmoffett   Ur going back many years. how long have u been diagnosed with KD ? 
DavidOhio   Both Ron and I are now serving on the KD board.  I have attended the annual conference regularly but missed last year.  I met both Terry and his wife when I attend my first conference in 2010.  Great people and so thankful for what they did in getting KDA started
bedardrobert   well here is a bit of info for me.I'm 53 y/o and I was diagnosed with KD in my late 20s. My grandmother was a carrier and 4 of her sons had KD. My mother was also a carrier and so is my sister. I was very stable with minor symptoms up until a few years ago. I'm now on long term disability and undergoing occupational therapy assessment for my home. 
bedardrobert   I am still relatively mobile with a cane but have lots of difficulty with stairs and getting up from sitting on a low chair. I need to have risers as much as possible. Needless to say that I can't do much physical work or efforts
DavidOhio   Robert since you have not be active in a while you may not be aware that Terry passed away over a year ago
bedardrobert   Yes I heard that Terry passed away....a great loss for us
ronmoffett   Robert - have you been to any conferences recently ?
bedardrobert   no I have not....$$$ it's not possible 
bedardrobert    and difficult to travel alone now
DavidOhio   Your experience sounds very familiar Robert. I avoid stairs.  But I have found started with some of the "smart exercises" Bruce put out the website.  I printed them and had a physical therapist help me learn them.  for me the most important thing is to try to stimulate muscle but never exhaust them.
ronmoffett   Robert - I understand. The reason I ask. The conference a few years ago in Chicago. There were quite a few people from Canada. I was wondering if we met.
bedardrobert   ah no sorry I wasn't there
ronmoffett   Stairs appears to be the first physical activity that goes. I a struggle with them also. I need to go up them sometimes for work which makes it hard. Not sure how much longer I can do it.
DavidOhio   Using those exercises and continuing to work with the physical therapist I have experienced some improvement.  I am just very that I can still walk with a cane and handle my normal daily routine unassisted.
ronmoffett   David - does the exercises help with ur balance ?
bedardrobert   I hear you ron....I have stairs to the basement, front and back entrance of my house
ronmoffett   Robert - that can be hard to navigate. I am fortunate that my home has no stairs at all. A tiny step to get into.
DavidOhio   Yes I had a 15 minute stability routine that I do every morning while the coffee is brewing.  It all centers on stimulating core muscles and leg muscles.  When I started is was just standing and taking a step forward and back with each leg; then side steps and back step a the while holding in the stomach muscles.
ronmoffett   Is that in the exercise routine u mentioned on the website ?
DavidOhio   Robert the therapist helped me test what size steps I can handle.  OUr house had three 8 inch steps at all entrances.  I had the back entrance changed to 4 inch steps and I can still handle those well.  If possible you might consider that change.
DavidOhio   Ron yes part of it came from what was no the website and once the therapist clearly understood the stimulate but do not exhaust, we added more complex movements first only with her and then I added some to my daily routines.
bedardrobert   yes I have received a report from the occupational therapist that was here last week and that is one of her recommendations....also she suggested a lift or ramp for the front entrance and a chair lift for the stairs to the basement....all this cost a lot of $$ so unsure how I will be able to make the necessary changes
bedardrobert   David can you share the link please? I,m looking on the website and cannot find them 
ronmoffett   K tnx - I will have to look at that guide again. Its been a while since I was in PT. I was working on balance issues. I probably need to go back to the exercises 
DavidOhio   Please try this link https://www.kennedysdisease.org/index.php/additional-resources/kda-information-guides
bedardrobert   thank you 
ronmoffett   Its under additional resources on the left>>KDA information guides. I see David gave u the link  
bedardrobert   yes and I,m printing them now
ronmoffett   David - how is your cousin Tom doing ?
DavidOhio   Robert - you may also want to check out Bruces blog. https://kennedysdisease.blogspot.com/ you can sign up for an email of Bruce's blog posts he general has a few each month
bedardrobert   ok thanks I have to re-familiarize myself wiht the website...haven't been on in a long time
DavidOhio   Ron Tom K is doing well he is home and I am now getting regular "history quiz" posts from him, so I know he is active on the computer again
ronmoffett   That's good. I didn't know he liked history. I also like history a lot.
DavidOhio   If you would like to be part of his daily history challenge just send him a note. 
DavidOhio   T Kotte 
DavidOhio   I do not know why his email wont post it
ronmoffett   Got it. Thanks. I will send him a note 
ronmoffett   Men, Its that time for me to make a move. Enjoyed the chat. Wish everyone a good month.
DavidOhio   Well gents it has been good chatting with you this morning and look forward to another opportunity next month. Now it is time for me to move on to other activities.  Stay vertical!
bedardrobert   thanks David and Ron....enjoy your weekend !

 

Topic: Open Forum        
         
DavidOhio    Good morning krish1002    
ronmoffett    Hello all.    
DavidOhio    Good morning Ron, it's a beautiful day in southwest Ohio, how about there in Chicagoland    
ronmoffett    David. Its just perfect here. Supposed to be 745 to 80. Low humidity.    
ronmoffett    krish - where are you from ?    
DavidOhio    My wife has already spent a little time out in the flower gardens, she of course does most of the work.    
ronmoffett    Its a beautiful day for that. How big is the garden ?    
DavidOhio    But I am able to assist and it is good to be outside when it is so comfortable    
ronmoffett    I used to love to do all that gardening and landscaping. I always had an outdoor project going as an excuse to be outside. Now I just sit outside and walk my dog.    
DavidOhio    We have several around the house mainly around the foundation of the house and garage.  Most of it is planted in perennials but we also have a small area with two tomato plants and some cucumber plants.  Everything is green and lush but no benefits yet.     
ronmoffett    Sounds nice. Fresh tomatoes are the best.    
ronmoffett    How have you been feeling ?    
DavidOhio    I am doing better than I deserve I had allowed my good exercise habits to slip away early this year, got too busy doing other things.  But have been more disciplined the last couple of months and it helps a great deal.    
ronmoffett    In what way does the exercise help u ? Do u feel stronger ?    
DavidOhio    I have regained both stability and some stamina.  I can handle my normal routines much better when I do those exercises.    
ronmoffett    ru still walking everyday ?    
DavidOhio    Strength is really hard to measure, but a couple of years ago I was using some 2 lb. dumbbells regularly and I have not be able to resume using them.  The main problem with them is my left shoulder there is an impingement that gets inflamed at times and recovery takes awhile.    
DavidOhio    Not walking every day instead I am trying to keep it at least 3 days a week for 30 minutes    
DavidOhio    I will try again to ask you about your work efforts.  I know that you had struggled more in the winter.  Are you feeling better.    
ronmoffett    It is hard to measure. I have stopped exercising because of work being so busy. The only exercise I get is walking my dog about 30 minutes a day. I break up the walks to 3 or 4 so its manageable. Recently, I have had more weakness in my legs with balance issues. I am feeling a decline.      
DavidOhio    Not sure what happened I guess my computer froze. Sorry just refreshed the link    
ronmoffett    Been in a decline. I feel ok though. Work has been hard. I am concerned about the winter. I am going to try and take time off through out the winter months to see if that helps at all. I feel that I survive the winter more or less. My son will be in college next year so I am starting to look around at places where the winters aren't as severe.     
DavidOhio    I am not sure how far south you'd need to go but it is a good idea to begin to do some research.  For most cities you can easily get an average temp by month as a starting point.    
bedardrobert    good morning from Canada    
bedardrobert    I haven't logged into chat for a long time....this platform is new to me    
ronmoffett    I am starting the process. I have been visiting a few over 55 communities. Not sure how far to go. My son is going to stay in the area so if I go way south near Florida. Not sure if I would be able to see him. Trying to find a balance    
DavidOhio    Good morning how are you doing today in Canada, Ron and I both are enjoying a more fall like day than the typical hot summertime.    
ronmoffett    Good morning Robert. Glad u could join and figured out the platform    
bedardrobert    thanks how is everyone....not a lot of people here only 4 of us    
ronmoffett    Yes. I think only 3. Not sure on the status of krish    
DavidOhio    Yes Robert it is a small group today.  We have no script today just sharing about our personal efforts and what works and does not work well.    
ronmoffett    How have u been feeling Robert ?    
bedardrobert    names that are not familiar....I used to chat when the creators of the association, Terry and his wife, had just started     
ronmoffett    Ur going back many years. how long have u been diagnosed with KD ?     
DavidOhio    Both Ron and I are now serving on the KD board.  I have attended the annual conference regularly but missed last year.  I met both Terry and his wife when I attend my first conference in 2010.  Great people and so thankful for what they did in getting KDA started    
bedardrobert    well here is a bit of info for me.I'm 53 y/o and I was diagnosed with KD in my late 20s. My grandmother was a carrier and 4 of her sons had KD. My mother was also a carrier and so is my sister. I was very stable with minor symptoms up until a few years ago. I'm now on long term disability and undergoing occupational therapy assessment for my home.     
bedardrobert    I am still relatively mobile with a cane but have lots of difficulty with stairs and getting up from sitting on a low chair. I need to have risers as much as possible. Needless to say that I can't do much physical work or efforts    
DavidOhio    Robert since you have not be active in a while you may not be aware that Terry passed away over a year ago    
bedardrobert    Yes I heard that Terry passed away....a great loss for us    
ronmoffett    Robert - have you been to any conferences recently ?    
bedardrobert    no I have not....$$$ it's not possible     
bedardrobert    and difficult to travel alone now    
DavidOhio    Your experience sounds very familiar Robert. I avoid stairs.  But I have found started with some of the "smart exercises" Bruce put out the website.  I printed them and had a physical therapist help me learn them.  for me the most important thing is to try to stimulate muscle but never exhaust them.    
ronmoffett    Robert - I understand. The reason I ask. The conference a few years ago in Chicago. There were quite a few people from Canada. I was wondering if we met.    
bedardrobert    ah no sorry I wasn't there    
ronmoffett    Stairs appears to be the first physical activity that goes. I a struggle with them also. I need to go up them sometimes for work which makes it hard. Not sure how much longer I can do it.    
DavidOhio    Using those exercises and continuing to work with the physical therapist I have experienced some improvement.  I am just very that I can still walk with a cane and handle my normal daily routine unassisted.    
ronmoffett    David - does the exercises help with ur balance ?    
bedardrobert    I hear you ron....I have stairs to the basement, front and back entrance of my house    
ronmoffett    Robert - that can be hard to navigate. I am fortunate that my home has no stairs at all. A tiny step to get into.    
DavidOhio    Yes I had a 15 minute stability routine that I do every morning while the coffee is brewing.  It all centers on stimulating core muscles and leg muscles.  When I started is was just standing and taking a step forward and back with each leg; then side steps and back step a the while holding in the stomach muscles.    
ronmoffett    Is that in the exercise routine u mentioned on the website ?    
DavidOhio    Robert the therapist helped me test what size steps I can handle.  OUr house had three 8 inch steps at all entrances.  I had the back entrance changed to 4 inch steps and I can still handle those well.  If possible you might consider that change.    
DavidOhio    Ron yes part of it came from what was no the website and once the therapist clearly understood the stimulate but do not exhaust, we added more complex movements first only with her and then I added some to my daily routines.    
bedardrobert    yes I have received a report from the occupational therapist that was here last week and that is one of her recommendations....also she suggested a lift or ramp for the front entrance and a chair lift for the stairs to the basement....all this cost a lot of $$ so unsure how I will be able to make the necessary changes    
bedardrobert    David can you share the link please? I,m looking on the website and cannot find them     
ronmoffett    K tnx - I will have to look at that guide again. Its been a while since I was in PT. I was working on balance issues. I probably need to go back to the exercises     
DavidOhio    Please try this link <a target="_blank" href="/https //www.kennedysdisease.org/index.php/additional-resources/kda-information-guides"> https //www.kennedysdisease.org/index.php/additional-resources/kda-information-guides</a> 
bedardrobert    thank you     
ronmoffett    Its under additional resources on the left>>KDA information guides. I see David gave u the link      
bedardrobert    yes and I,m printing them now    
ronmoffett    David - how is your cousin Tom doing ?    
DavidOhio    Robert you might also want to check out the Living with KD blog <a target="_blank" href="/https //kennedysdisease.blogspot.com/"> https //kennedysdisease.blogspot.com/</a> you can sign up for an email of Bruce's blog posts he general has a few each month and all of the back issues are on his website
bedardrobert    ok thanks I have to re-familiarize myself wiht the website...haven't been on in a long time    
DavidOhio    Ron Tom K is doing well he is home and I am now getting regular "history quiz" posts from him, so I know he is active on the computer again    
ronmoffett    That's good. I didn't know he liked history. I also like history a lot.    
DavidOhio    If you would like to be part of his daily history challenge just send him a note at T Kotte     
DavidOhio    T Kotte     
DavidOhio    I do not know why his email wont post it is This email address is being protected from spambots. You need JavaScript enabled to view it.    
ronmoffett    Got it. Thanks. I will send him a note     
ronmoffett    Men, Its that time for me to make a move. Enjoyed the chat. Wish everyone a good month.    
DavidOhio    Well gents it has been good chatting with you this morning and look forward to another opportunity next month. Now it is time for me to move on to other activities.  Stay vertical!    
bedardrobert    thanks David and Ron....enjoy your weekend !