Kennedy's Disease Association

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2016 Chat Room Transcripts

Topic: Open Forum    
       
DavidOhio   Good Morning all a beautiful day here in the Greater Cincinnati area hope all is well for you too
TomK   good morning  
Guest1.35   Good Morning beautiful morning here in Colorado as well  
ronmoffett   Good morning all  
TomK   Has anyone been effected by the EarthQuake in Oklahoma?  
DavidOhio   Those pics of you and the grandkids were great TomK  
ronmoffett   Tom - I have not  
DavidOhio   When did that happen Tom, this morning?  
ronmoffett   It is beautiful here in Illinois. Just perfect weather.  
TomK   News reports say 7 States felt shock Waves.  
ronmoffett   Didn't know that Tom. That's a lot  
ronmoffett   Anyone have plans for this long Labor Day weekend ?  
TomK   Dave It was around 7 Am Oklahoma Time  
ronmoffett   Good morning Gary  
Gary_KC   Good Morning, ron  
Gary_KC   TomK, I felt the earthquake this morning. I live near Kansas City.  
TomK   Gary No damage?  
DavidOhio   We were in Chicago last weekend to see Anita and Mike.  We took them on a Chicago River architecture boat tour and that was a good experience.  So this weekend we are just staying here and relaxing. 
ronmoffett   Gary, do you live in a house or are you in a multi story building ?  
ronmoffett   Very nice David. I hope your daughter is doing well. You have to let me know when you are heading this way again. We can meet for dinner or coffee if you have time  
elvspretzl   Good morning.  
ronmoffett   My cousin is in for Texas. So I have some plans to spend some time with his family. I also want to spend some time outside. Its just beautiful out.
ronmoffett   Good morning elvspretzl  
TomK   Ron TEXAS was one of the state that felt a lot of After Shock from the Earth Quake!
DavidOhio   Well Ron our next Chicago trip is for Thanksgiving and then we will be back the second week in December when we expect to be able to visit with our first grand-baby.  So we can make plans for one or both of those times.
ronmoffett   David - sounds good. I should be in town for both those dates. When it gets closer, Just let me know what days you are available.   
elvspretzl   How's everyone doing today?  
TomK   Great Weather in OHIO  
ronmoffett   Tom - I will have to check with my cousin when I see him later. I hope everything is ok.
ronmoffett   Doing good elvsprezl. Where are you from ?  
TomK   I get mix reports on the 6.5 Earthquake in Oklahoma  
DavidOhio   Margy and I took a short walk in a local park earlier this morning and is was great to be outside in the sunshine and not feel like we were melting.  I am so looking forward to autumn weather
ronmoffett   David- Me too. Took the dog out early. The humidity here has been unbearable for the last few weeks. It has finally passed. I am also looking forward to fall. I don't know how these men live in Florida
TomK   David this is Great Weather!  
elvspretzl   I'm not familiar with the earthquake.  I've come to a point where my ability to walk is rapidly disappearing. I'm also extremely fatigued this past week. I've called my neurologist but haven't heard back yet. I'm going to look into Lyme Disease (again) to see if I haven't been infected with that too. 
DavidOhio   Today is much more pleasant weather wise than what my Mom told me it was some 63 years ago.  The high for the day on my birthday was 99 here in Cincinnati and the entire summer was very hot a lot of 100 degree days and many of them this late in the summer.  
ronmoffett   elvsprezl - sorry to hear that your health has declined rapidly. I hope that it comes back. I know I have some periods where I have a rough patch and then come back.
elvspretzl   Have any of you experienced a rapid decline strength?    
elvspretzl   Thanks, Ron.  Yes, sometimes it waxes and wanes.   
TomK   elvspretzl  I think  we all have cycles of weakness!   
ronmoffett   David - Happy Birthday. I hope you do something fun to celebrate.
DavidOhio   elvsprezl - are you taking a statin for high cholesterol?  I was when I was first diagnosed and soon after got off that drug and since then found another.  The statins impact our muscles making them ache.
elvspretzl   Mine rarely rebounds to anything like it was in prior weeks or months.
elvspretzl   Got off of statins about 14 years ago.   
TomK   Happy Birthday!  So Iam the OLD Man  of the Group 65.  
elvspretzl   Lipitor .... My PCP kept increasing my dosage as my weakness progressed ... somehow relating it to my high cholesterol.  Since then, my cholesterol has been stable with an adjustment in my diet. 
TomK   Whats your Blood Sugar Level?  
Gary_KC   elvspretzl, I feel rapid weakness in cold weather.  
DavidOhio    The other thing that has worked for me is years ago i started with just some stretching moves that I learned from a physical therapist and then never did enough to cause pain and gradually added more movement.  I hope you find something that works for you to limit the pain
elvspretzl   I am 52.  
Gary_KC   elvspretzl, do you take any other supplements or drugs?  
elvspretzl   I try to avoid sugar and coffee at all costs.  I did overexert myself a bit earlier this week. Trying to get a lot of rest, but don't want to stay too stagnant.  I don't know my B/S level.  Perhaps I'll get that checked ...???
TomK   elvspretzl, Vitamin B-12 works for me when I am feeling tired  
elvspretzl   I take an antidepressant - Pristiq.  I'm pretty sure it has a negative consequence, but can't get off of it. I become desperately depressed within moments.  
elvspretzl    I also take nasonex (antihystamine), but am told the steroid in that is VERY insignificant.
ronmoffett   elvsprezl - I get a lot of muscle pain and have not been able to figure out what makes it worse. Other than the obvious of over use and the cold
elvspretzl    I was taking B-12, but it didn't seem to help me.   
TomK   Cold is definitely has a BAD effect on my Muscles   
ronmoffett   Tom K - 65. That's slowly getting up there. How are you feeling at 65 ? 
elvspretzl   Thankfully, I've not experienced muscle pain on any grand scale. It's almost nonexistent except for twinges of discomfort when muscle wasting is happening. 
TomK   Ron  Thank God for GrandKIDs it makes life in a Wheel Chair   
ronmoffett   Does anyone else experience muscle pain with the KD ?   
Guest1.35   Cold really makes my muscles sore  
ronmoffett   TomK - They are a blessing. how many grand kids do you have ?  
TomK   I don't feel any Pain  just a Total lack of coordination in my legs & arms. 
DavidOhio   Recently I have been taking a naproxen (aleve type of pain med) to help me sleep better at night.  I aggravated my left shoulder joint and hope to work it out like I did several years ago, but as we have all shared these thing seem to take a lot more time than we'd like
TomK   Rom Three Grand Kids all call me PaPa and smile at me!   
Guest1.35   My grand kids like to sit on my lap and ride the wheelchair. the one year old thinks she needs to drive
DavidOhio   Tom K if I recall correctly the older grandchild makes you chase her and then get a ride in the wheelchair
ronmoffett   I have been taking Gabapentin at night for awhile now to sleep. If I don't take it. I don't sleep for long. It helps keep my movements down. Its been a lifesaver.
elvspretzl   Has anyone seen the studies on Nusinersen? My neurologist left Mass General Hosp. (sabbatical) to sign on with the manufacturer. I wish I could to a trial with that because it seems to be helping infant SMA patients. 
ronmoffett   Tom - that's certainly something to cherish  
DavidOhio   Ron I have not heard of that is that a prescription med?  
TomK   All my Grand Kids Love My wheel Chair it there Red Carpet ride  
Guest1.35   My son thinks that we need to build a hot rod wheelchair with ATV tires and a Briggs engine
TomK   My chair has a Top Speed of 7mph  
ronmoffett   David - yes. It was prescribed by my Neurologist at the MDA clinic I go to. He hit a homerun with it. Prior to that. The sleep study I took prior to being on the med showed I had no deep sleep. I think it was originally developed for epilepsy. Its been around a long time. Very inexpensive with my insurance
elvspretzl   I'll look into Gabapentin. I know I have a degree of restless leg syndrome ... probably not related to KD, though. 
Guest1.35   My Dr prescribed Gabapentin 3 times a day. It helps with the twitches 
TomK   Guys I got to GO, David I will call You later t  
DavidOhio   At one of the recent conferences a sales rep showed us what could be used as an off-road wheelchair I will see if I can locate something on that after our chat
DavidOhio   Take care TomK have agreat weekend  
Guest1.35   That would be great. I have an indoor outdoor wheelchair but it is really sandy here and I get stuck a lot
DavidOhio   If I find it I will put something on the KD forum page or even if I do not find it someone else may remember the chair and provide a link
Gary_KC   elvspretzl, I increased B-12 dosage from 1000mg to 5000mg. I felt better.
Guest1.35   I test drove an Action Trackchair and it worked great. and not a bad price considering  
Guest1.35   oops considering what others cost'  
elvspretzl   I'm currently using an e-wheels 36 to get around town.  Its top speed it 18-20 mph. It has big tires but they're still to narrow for sand. 
elvspretzl   Not exactly a wheelchair.   
DavidOhio   One version of the those wheelchairs had tracks instead of wheels I will also look up trackchair
ronmoffett   elvsprezl - that's the fastest wheel chair speed I have heard of.  
Guest1.35   I have a Quickie S-636 it will do around 9 mph and overall i like it   
elvspretzl   It's really a three-wheel scooter.   
Guest1.35   The Trackchair is great outdoors but it is to big to go indoors  
ronmoffett   Still - that's fast for a stock mobility chair/scooter.  
DavidOhio   That sound right they brought one into the hotel conference center and it certainly looked too big and not at all indoor flooring friendly
Guest1.35   We built a trailer hitch for it and we took the grand kids to the zoo. I pulled the wagon with my chair
ronmoffett   David - remember that chair. I believe that's the name of it. It was huge and powerful.
DavidOhio   That sounds like a great way to get around the zoo and some extra fun for the grandkids
Guest1.35   yep I got a lot of comments from the folks there. I told them when you put a redneck in a wheelchair you never know what might happen
Gary_KC   I got go. Have nice long weekend and take care all. Bye  
ronmoffett   Men - its been a great chat this morning. I wish everyone a good weekend. Have some fun. I need to transition. Take care. Be well. 
DavidOhio   Well gents I need to move on to other activities today and get back outside while the weather remains nice, since the only certainty with weather is that it will change!
Guest1.35   Have a great weekend   
elvspretzl   When is the next chat?  Are they still every other weekend?   
elvspretzl   I haven't been participating for several years in these chats, but hope to get back to them consistently. 
elvspretzl   Thank you all.   
Topic: Open Forum                                                
                                                   
DavidOhio    Good Morning all a beautiful day here in the Greater Cincinnati area hope all is well for you too                                        
TomK    good morning                                              
Guest1.35    Good Morning beautiful morning here in Colorado as well                                              
ronmoffett    Good morning all                                              
TomK    Has anyone been effected by the EarthQuake in Oklahoma?                                              
DavidOhio    Those pics of you and the grandkids were great TomK                                              
ronmoffett    Tom - I have not                                              
DavidOhio    When did that happen Tom, this morning?                                              
ronmoffett    It is beautiful here in Illinois. Just perfect weather.                                              
TomK    News reports say 7 States felt shock Waves.                                              
ronmoffett    Didn't know that Tom. That's a lot                                              
ronmoffett    Anyone have plans for this long Labor Day weekend ?                                              
TomK    Dave It was around 7 Am Oklahoma Time                                              
ronmoffett    Good morning Gary                                              
Gary_KC    Good Morning, ron                                              
Gary_KC    TomK, I felt the earthquake this morning. I live near Kansas City.                                              
TomK    Gary No damage?                                              
DavidOhio    We were in Chicago last weekend to see Anita and Mike.  We took them on a Chicago River architecture boat tour and that was a good experience.  So this weekend we are just staying here and relaxing.                     
ronmoffett    Gary, do you live in a house or are you in a multi story building ?                                              
ronmoffett    Very nice David. I hope your daughter is doing well. You have to let me know when you are heading this way again. We can meet for dinner or coffee if you have time                            
elvspretzl    Good morning.                                              
ronmoffett    My cousin is in for Texas. So I have some plans to spend some time with his family. I also want to spend some time outside. Its just beautiful out.                              
ronmoffett    Good morning elvspretzl                                              
TomK    Ron TEXAS was one of the state that felt a lot of After Shock from the Earth Quake!                                          
DavidOhio    Well Ron our next Chicago trip is for Thanksgiving and then we will be back the second week in December when we expect to be able to visit with our first grand-baby.  So we can make plans for one or both of those times.                
ronmoffett    David - sounds good. I should be in town for both those dates. When it gets closer, Just let me know what days you are available.                                   
elvspretzl    How's everyone doing today?                                              
TomK    Great Weather in OHIO                                              
ronmoffett    Tom - I will have to check with my cousin when I see him later. I hope everything is ok.                                          
ronmoffett    Doing good elvsprezl. Where are you from ?                                              
TomK    I get mix reports on the 6.5 Earthquake in Oklahoma                                              
DavidOhio    Margy and I took a short walk in a local park earlier this morning and is was great to be outside in the sunshine and not feel like we were melting.  I am so looking forward to autumn weather                      
ronmoffett    David- Me too. Took the dog out early. The humidity here has been unbearable for the last few weeks. It has finally passed. I am also looking forward to fall. I don't know how these men live in Florida                    
TomK    David this is Great Weather!                                              
elvspretzl    I'm not familiar with the earthquake.  I've come to a point where my ability to walk is rapidly disappearing. I'm also extremely fatigued this past week. I've called my neurologist but haven't heard back yet. I'm going to look into Lyme Disease (again) to see if I haven't been infected with that too.   
DavidOhio    Today is much more pleasant weather wise than what my Mom told me it was some 63 years ago.  The high for the day on my birthday was 99 here in Cincinnati and the entire summer was very hot a lot of 100 degree days and many of them this late in the summer.          
ronmoffett    elvsprezl - sorry to hear that your health has declined rapidly. I hope that it comes back. I know I have some periods where I have a rough patch and then come back.                          
elvspretzl    Have any of you experienced a rapid decline strength?                                                
elvspretzl    Thanks, Ron.  Yes, sometimes it waxes and wanes.                                               
TomK    elvspretzl    I think  we all have cycles of weakness!                                      
ronmoffett    David - Happy Birthday. I hope you do something fun to celebrate.                                            
DavidOhio    elvsprezl - are you taking a statin for high cholesterol?  I was when I was first diagnosed and soon after got off that drug and since then found another.  The statins impact our muscles making them ache.                    
elvspretzl    Mine rarely rebounds to anything like it was in prior weeks or months.                                            
elvspretzl    Got off of statins about 14 years ago.                                               
TomK    Happy Birthday!  So Iam the OLD Man  of the Group 65.                                              
elvspretzl    Lipitor .... My PCP kept increasing my dosage as my weakness progressed ... somehow relating it to my high cholesterol.  Since then, my cholesterol has been stable with an adjustment in my diet.                     
TomK    Whats your Blood Sugar Level?                                              
Gary_KC    elvspretzl, I feel rapid weakness in cold weather.                                              
DavidOhio    The other thing that has worked for me is years ago i started with just some stretching moves that I learned from a physical therapist and then never did enough to cause pain and gradually added more movement.  I hope you find something that works for you to limit the pain      
elvspretzl    I am 52.                                              
Gary_KC    elvspretzl, do you take any other supplements or drugs?                                              
elvspretzl    I try to avoid sugar and coffee at all costs.  I did overexert myself a bit earlier this week. Trying to get a lot of rest, but don't want to stay too stagnant.  I don't know my B/S level.  Perhaps I'll get that checked ...???                  
TomK    elvspretzl, Vitamin B-12 works for me when I am feeling tired                                              
elvspretzl    I take an antidepressant - Pristiq.  I'm pretty sure it has a negative consequence, but can't get off of it. I become desperately depressed within moments.                              
elvspretzl    I also take nasonex (antihystamine), but am told the steroid in that is VERY insignificant.                                        
ronmoffett    elvsprezl - I get a lot of muscle pain and have not been able to figure out what makes it worse. Other than the obvious of over use and the cold                              
elvspretzl    I was taking B-12, but it didn't seem to help me.                                               
TomK    Cold is definitely has a BAD effect on my Muscles                                               
ronmoffett    Tom K - 65. That's slowly getting up there. How are you feeling at 65 ?                                             
elvspretzl    Thankfully, I've not experienced muscle pain on any grand scale. It's almost nonexistent except for twinges of discomfort when muscle wasting is happening.                             
TomK    Ron   Thank God for GrandKIDs it makes life in a Wheel Chair                                   
ronmoffett    Does anyone else experience muscle pain with the KD ?                                               
Guest1.35    Cold really makes my muscles sore                                              
ronmoffett    TomK - They are a blessing. how many grand kids do you have ?                                              
TomK    I don't feel any Pain  just a Total lack of coordination in my legs & arms.                                             
DavidOhio    Recently I have been taking a naproxen (aleve type of pain med) to help me sleep better at night.  I aggravated my left shoulder joint and hope to work it out like I did several years ago, but as we have all shared these thing seem to take a lot more time than we'd like        
TomK    Rom   Three Grand Kids all call me PaPa and smile at me!                                    
Guest1.35    My grand kids like to sit on my lap and ride the wheelchair. the one year old thinks she needs to drive                                      
DavidOhio    Tom K if I recall correctly the older grandchild makes you chase her and then get a ride in the wheelchair                                      
ronmoffett    I have been taking Gabapentin at night for awhile now to sleep. If I don't take it. I don't sleep for long. It helps keep my movements down. Its been a lifesaver.                            
elvspretzl    Has anyone seen the studies on Nusinersen? My neurologist left Mass General Hosp. (sabbatical) to sign on with the manufacturer. I wish I could to a trial with that because it seems to be helping infant SMA patients.                 
ronmoffett    Tom - that's certainly something to cherish                                              
DavidOhio    Ron I have not heard of that is that a prescription med?                                              
TomK    All my Grand Kids Love My wheel Chair it there Red Carpet ride                                              
Guest1.35    My son thinks that we need to build a hot rod wheelchair with ATV tires and a Briggs engine                                        
TomK    My chair has a Top Speed of 7mph                                              
ronmoffett    David - yes. It was prescribed by my Neurologist at the MDA clinic I go to. He hit a homerun with it. Prior to that. The sleep study I took prior to being on the med showed I had no deep sleep. I think it was originally developed for epilepsy. Its been around a long time. Very inexpensive with my insurance
elvspretzl    I'll look into Gabapentin. I know I have a degree of restless leg syndrome ... probably not related to KD, though.                                     
Guest1.35    My Dr prescribed Gabapentin 3 times a day. It helps with the twitches                                             
TomK    Guys I got to GO, David I will call You later t                                              
DavidOhio    At one of the recent conferences a sales rep showed us what could be used as an off-road wheelchair I will see if I can locate something on that after our chat                            
DavidOhio    Take care TomK have agreat weekend                                              
Guest1.35    That would be great. I have an indoor outdoor wheelchair but it is really sandy here and I get stuck a lot                                      
DavidOhio    If I find it I will put something on the KD forum page or even if I do not find it someone else may remember the chair and provide a link                                
Gary_KC    elvspretzl, I increased B-12 dosage from 1000mg to 5000mg. I felt better.                                            
Guest1.35    I test drove an Action Trackchair and it worked great. and not a bad price considering                                            
Guest1.35    oops considering what others cost'                                              
elvspretzl    I'm currently using an e-wheels 36 to get around town.  Its top speed it 18-20 mph. It has big tires but they're still to narrow for sand.                                 
elvspretzl    Not exactly a wheelchair.                                               
DavidOhio    One version of the those wheelchairs had tracks instead of wheels I will also look up trackchair                                        
ronmoffett    elvsprezl - that's the fastest wheel chair speed I have heard of.                                              
Guest1.35    I have a Quickie S-636 it will do around 9 mph and overall i like it                                               
elvspretzl    It's really a three-wheel scooter.                                               
Guest1.35    The Trackchair is great outdoors but it is to big to go indoors                                              
ronmoffett    Still - that's fast for a stock mobility chair/scooter.                                              
DavidOhio    That sound right they brought one into the hotel conference center and it certainly looked too big and not at all indoor flooring friendly                                
Guest1.35    We built a trailer hitch for it and we took the grand kids to the zoo. I pulled the wagon with my chair                                      
ronmoffett    David - remember that chair. I believe that's the name of it. It was huge and powerful.                                          
DavidOhio    That sounds like a great way to get around the zoo and some extra fun for the grandkids                                        
Guest1.35    yep I got a lot of comments from the folks there. I told them when you put a redneck in a wheelchair you never know what might happen                                
Gary_KC    I got go. Have nice long weekend and take care all. Bye                                              
ronmoffett    Men - its been a great chat this morning. I wish everyone a good weekend. Have some fun. I need to transition. Take care. Be well.                                 
DavidOhio    Well gents I need to move on to other activities today and get back outside while the weather remains nice, since the only certainty with weather is that it will change!                          
Guest1.35    Have a great weekend                                               
elvspretzl    When is the next chat?  Are they still every other weekend?                                               
elvspretzl    I haven't been participating for several years in these chats, but hope to get back to them consistently.