Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"... almost all of the nurses and doctors did not know about Kennedy's Disease. I referred them here. I want to thank the creators of this website."

2018 Chat Room Transcripts


Topic: Open Forum    
ronmoffett   Good morning mickle.   
Mickle Spiffy   Good morning.  
Mickle Spiffy   This is my first. ow busy does it get?  
ronmoffett   Welcome. In regards to busy. It varies. There usually are a few of us that touch base regular. Sometimes more. Sometimes less. Summer can be a slower time.
ronmoffett   Where are you from ?  
Mickle Spiffy   Washington DC  
Mickle Spiffy   You?  
ronmoffett   Ok. I am from Illinois. We just had our conference last year on the east coast in Virginia. Were you able to attend ?
Mickle Spiffy   I was there for one afternoon.  Work.  My wife made the whole thing. You?
ronmoffett   Nice. glad to hear you were able to make it. I did not make. Travel is hard on me. I went a few years back to the conference in Chicago. It was a couple hours from where I lived. I enjoyed it. 
ronmoffett   What type of work do you do ?  
Mickle Spiffy   Where in Chicago? I used to live in Naperville.  
Mickle Spiffy   I move paper for the government.  
Mickle Spiffy   I'm fairly recent with symptoms so movement isn't bad.  
ronmoffett   Funny. There is probably a lot of paper to move. Goverment seems to get larger every year
Mickle Spiffy   'kept this year.  
ronmoffett   This is good that you are still moving well. How long ago were you diagnosed ?
Mickle Spiffy   Last year.  ou?  
ronmoffett   6 or 7 years.  
ronmoffett   If you don't mind me asking. How old are you  
Mickle Spiffy   58  
ronmoffett   We are about the same age. I am 56. What were the symptoms that you were having that caused you to look for a diagnosis.
ronmoffett   Good morning Tom  
Mickle Spiffy   I was playing my guitar one day and my hand just quit.  
ronmoffett   I imagine that would be frustrating. Finger dexterity can go with KD. Especialy in the cold weather
TomK   Good Morning  
ronmoffett   Tom, how have you been feeling ?  
Mickle Spiffy   I'm still in the dealing with reality phase  
TomK   Ron just got over a case of Pnemonia so starting to get my strength back
ronmoffett   Mickle. Yes. Living with KD is an adjustment   
Mickle Spiffy   I have one question.  
Mickle Spiffy   I have severe “out of shape” problems some KD related, some not. I was on the couch for two years before my diagnosis last year. I’m having a hard time telling when to slow down and rest due to KD vs tired because I’m out of shape.
ronmoffett   Can you clarify what you mean by on the couch. Have you walked etc. Run errands
Mickle Spiffy   Part of it was flu. Part a broken foot, Part a misdiagnosis treatment. Did not move beyond getting to my desk at work
ronmoffett   Ok. I unserstand  
Mickle Spiffy   Tom  How do you get your strength back?
TomK   Wife kept pushing on taking the Scripts and staying  active.  
ronmoffett   My opinion from living with the disease, drs and listening to other men with KD. The best thing you could do is go to physical therapy and learn some exercises. It has helped me as well as other men I know. KD affects the muscles and the strength of the muscles. Its important to keep the muscles active and as strong as possible. You don't want to over work them. There is a 70% rule. Exercise to 70% tiredness. There are some exercise guides on our website that might help 
Mickle Spiffy   I've heard to 70% rule. I just can't translate that. I get winded from two flights of stairs and that can't be KD but lifting heavy things for ten minutes sure feels like it.
Mickle Spiffy   I twitch for a day afterwards.  
ronmoffett   In regards to fatigue. It can be common with KD. I suffer from it. Lastly, if you haven't read or follow the living with Kennedy's Disease blog. Bruce who writes it share a lot of information regarding living with the disease. He contributes a lot of his health with KD  because he exercises every day. You can access the blog on our home page toward the bottom center.  
ronmoffett   Mickle - each person with KD is different. Stairs is very demanding for men with KD. A lot of men with KD I know can't go up stairs and its not a case of becoming winded. The muscles won't allow it. 
Mickle Spiffy   I had that experience a couple of weeks ago. I was out with my wife and there was just a small step up but my legs did not respond.
ronmoffett   The winded part sounds more cardio to me but I ma no dr. KD effects is the weaking of the muscle. I have times where my leg muscle doesn't move right and causes me to fall.
Mickle Spiffy   I read Bruce's stuff and met him at the meeting last year. I can't follow his diet as I'm vegan and I'm not up to his level of fitness... yet.  I'm just having trouble balancing the two, I guess.
ronmoffett   Your step description is more KD common  
ronmoffett   Bruce that writes the blog wasn't at the conference that I know of. He is in his 70s. I don't think he is a vegan.
Mickle Spiffy   You're right.  "Bruce" didn't sound right.  
TomK   My leg muscles failing forced me to retire.  
ronmoffett   Tom - I am having the same issue. Its going to cause me to retire as well as voice issue
Mickle Spiffy   The whole "how will we retire" is a constant discussion here.  
ronmoffett   Mickle - the one thing I would highly suggest is to keep your weight down. Not a good combination to have weakening leg muscles supporting a lot of excess weight
Mickle Spiffy   I'm trying but exercise is hard. Just get used to being hungry?  
ronmoffett   The early retirement situation is a hard one   
ronmoffett   Tom. were you a fireman. I can't remember   
TomK   Yes a fireman for 30 years.  
Mickle Spiffy   That's hard. I've lots of fireman friends.  
ronmoffett   I guess my memory does work  
ronmoffett   Tom. How have you been feeling   
TomK   It changes from day to day... My Grand Kids  keep me Going..  
ronmoffett   Grand kids are good. How many do you have again  
TomK   3 Grand kids and One on the way  
ronmoffett   Tom - how far are you from Cincinnati   
ronmoffett   Very nice. Keeps you busy I am sure  
TomK   I live in the suburbs of Cincinnati  
TomK   Guys got go My Grandaughter wants to Play  
Mickle Spiffy   Nice!  Have fun!  
Mickle Spiffy   Best I can do is when one of the cats wants a lap to sleep in.  
ronmoffett   Tom - take care of yourself.  
Mickle Spiffy   You have kids or animals?  
ronmoffett   I have a son heading to colloege and a dog  
Mickle Spiffy   What major and what kind of dog?  We have a really old beagle.  
ronmoffett   Miked breed about 15 lbs. Beagles are nice. My son wants to study finance.
Mickle Spiffy   Good luck. I know nothing of finance.  
ronmoffett   I am not a finance guy either but it interests my son. Its not an easy major
ronmoffett   Mickle - glad you joined us today. Good chatting with you. My dog needs to go out and I need to finish errands. Have a wonderful weekend
Mickle Spiffy   Yeah, thanks. I need to go off and practice feeling hungry.  
Mickle Spiffy   Have a good weekend.