Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"Kennedy's Disease can be a lonely existence in many ways, but the KDA makes me feel I'm not alone, thank you."

2018 Chat Room Transcripts


Topic: Open Forum  
ronmoffett   Good morning Tom. How are you feeling ?
TomK   Feeling a little Weak
ronmoffett   Sorry to read this. Are you back at home ?
ronmoffett   Good morning Greg ?
TomK   I am back at Home but still a little weak
GregF   Good Morning Ron. How were your holidays
ronmoffett   Greg, the holidays were good. Had some time to relax. I love the time of year. How were your holidays ? 
GregF   Good Morning Tom, I just joined in but it looks like you have been Ill?
GregF   Mine was great. We went to Spokane WA. We have a new granddaughter there and one that turned 2 on the 31st 
TomK   I had Pneumonia.
GregF   Man that sucks, I am glad you are home and recovering
ronmoffett   Greg - congrats on being a grandfather. Its a blessing. did you drive to Spokane ? 
ronmoffett   Tom, if you don't mind me asking. How long were you in the hospital ?
GregF   Yes we drove, we usually fly but the airline tickets are so expensive over Christmas we could drive and spend a couple nights in a motel cheeper
ronmoffett   Good morning David. How are you feeling ?
DavidOhio   Good Morning all
GregF   This little girl is Grandchild number 5, and we have number 6 due in march in Houston
DavidOhio   Hey Ron I am feeling better than I deserve; but baby it's cold outside!!!!
GregF   Good morning David
ronmoffett   Greg, yes - tough time of year to fly. Your in Colorado correct ?
GregF   That is correct, it is 1200 miles to Spokane
ronmoffett   Greg - wonderful news on the grand children. I'm sure you are a great grand dad
GregF   David how were your holidays
GregF   Thank you Ron, I love being around them
DavidOhio   The holidays were great!  Our grandson and his parents were here for over a week.  The little character is walking now!  My favorite time was when Nate would take his Gramps for a walk all over the house.
GregF   David you wrote that it is cold outside, is that front that is hammering the east coast hitting you as well?
ronmoffett   David - we are 15 days of temps around 10 degrees. I haven't been outside much. Relief is coming tomorrow. How have the temps been by you. And how are you holding up with them.
GregF   David I remember those times, they are great
DavidOhio   The main problem for us is very low temperatures.  It was about 5 below zero here this morning.
GregF   Wow I don't miss those temps at all
ronmoffett   David - thats cold. Are you able to get outside at all ?
GregF   I talked to my son in Houston Friday and his high for the day was 25 and here in CO. it was 50. This weather pattern is strange
ronmoffett   Greg. Was wondering. Whats the coldest it gets by you in Colorado ?
DavidOhio   Wearing layers of clothes allowed me to go out long enough to get to and from the car at home and at the destination.  But as we all seem to notice the muscle did not like the cold, had to be extra careful moving around
GregF   We normally get about a week each winter that stays below 0 and a week in the summer that is above 100. this winter has been warm with an average in the low 20s
ronmoffett   It has been crazy cold all over the US. They have Iguanas in Florida dropping from trees because of the cold. I guess they can live for 2 more days in like a frozen state. And are back to normal if the temps warm up or they are in the sun.
DavidOhio   Like Ron we have been promised warmer weather for the next couple of days.
GregF   Our biggest problem is no snow. the ski resorts are struggling 
ronmoffett   Greg - thats cold. This is what I thought. You guys get a lot of snow though every year don't you ?
carofer   snow level in sierras is 3% of normal
GregF   Places usually do, I am in the north eastern part of CO. we are a desert with very little snow or rain
DavidOhio   Hey every once in awhile we have to have cold days to maintain the average temperatures for a given date.  Last year at this time is was in the upper 40's!
carofer   it's been raining last few days so there's hope
ronmoffett   We haven't had much snow which is just been great for me. I have to go outside to walk my dog and the snow can cause problems. 
carofer   (from califrnia)
ronmoffett   Good morning carofer. How have you been ?
GregF   I am in a wheelchair most of the time so I don't mind no snow, but we really do need some moisture
carofer   ok -- lots of physical therapy has been helpful
ronmoffett   Carofer - you guys need rain. Hopefully it will stop the fires from starting again
GregF   carofer are you close to where the fire has been?
carofer   still walking with a rollie
carofer   there was a fire in santa cruz mountains but not the big one
ronmoffett   Its not a pretty site but I am still able to walk. Balance is starting to go so I am using a cane at times
GregF   I have seen the damage of some fires after the fact, I can't imagine being in one
DavidOhio   Those wildfires this year have been really scary, I don't even want to imagine the fear those things create.
carofer   i'm about 80 miles from the closest point of the biggest fures
ronmoffett   Fires are scarry - you don ;T need to be very close to one. That smoke travels and does damage and messes things up.
GregF   So you probably still had to deal with the smoke
carofer   that's great ron. i don't try to walk without rollie outside because of fear of falling
carofer   we saw the smoke
GregF   Ron I would recommend still going slow even with a cane. I got over confident and fell on my cane and broke it 
DavidOhio   carofer is your area at risk, I guess I mean is it also too dry for comfort in your area?
ronmoffett   Carofer - thats smart. I have a rollie to. Its great. Nice big tires. The problem has become that I have weekend and have a hard time getting it in my car.  
carofer   it is far too dry. the mountain areas are at risk
carofer   socal is worse. we don't live in the desert
carofer   and we have damp fog from the ocean here
ronmoffett   David - how have you been with walking. Its been some years since I have seen you
TomK   Have any of you been asked to Participate in the Genetic Test by NIH?
carofer   is that a new trial?
DavidOhio   I am still able to walk fairly well.  When my wife goes to the Y for her exercises I use the track and walk for about 30 minutes.  On the track I do not need the cane; but anywhere else I always use a cane
TomK   Yea it suppose to start up after the Holidays
GregF   I saw the post in the newsletter for the DNA test but I haven't responded yet
DavidOhio   Yes TomK they asked all of us at the conference; they are collecting saliva from KD'er to build up their genetic data.  I encourage all  to participate the more information they have the better.
DavidOhio   Good Morning cousin Tom, I assume you are staying inside as much as possible like I am.
carofer   who was it who said, " i have fallen in more countries than most people have ever visited"?
ronmoffett   David. I am the same way. If I am walking at a fast pace on even ground. I feel ok. If I am walking slow around people. My balance starts to go 
TomK   I plan on participating but how confidential are the TESTS?
GregF   carofer I like that, I couldn't say countries but probably I could say States-@->
ronmoffett   David - are they looking for something specific ?
TomK   David definitely not my Type of Weather 
DavidOhio   Use your cane Ron, I find that when I am outside people tend to give me more space when I have the cane.  Of course I am not dealing with the kind of crowds you have in Chicago.  except for when we visit the Kids of course
ronmoffett   Tom - I will participate. 
DavidOhio   Ron my understanding is building a database of genetic information, not sure how it might be used in the future, perhaps it has to do with being able to test for genetic changes in future trails whenever they can start clinical trials
TomK   Ron when i TOLD MY Family about the TESTING she was worried about how confidential was DATA collected
ronmoffett   I can't say for sure but I have to believe it would be very confidential or researchers woud have no one participate in their trials. My guess is when they send you the kit. A sheet would accompany it and explain this. You can also send Angela the contact for this an e mail and ask her. Do you want her e mail address ?
DavidOhio   TomK I suggest you contact Angela Kokinis with that confidentiality question; I know that they are very careful with all testing and patient data.  But if anyone can get you the answer you need to feel secure it would be Angela
DavidOhio   This email address is being protected from spambots. You need JavaScript enabled to view it. this is the email I have for Angela
TomK   I talked to Angela she told me she would send me a packet with all pertinent Information....Waiting for the INFO PACKET. 
DavidOhio   By the way Ron the terms fast and walking are not compatible.  I am not sure that I even make it a mile in my 30 minutes, but then again I am just thankful that I can still stay upright and moving for that long!
carofer   congrats, david. stay upright
DavidOhio   Thanks carofer, you mentioned therapy.  I have been fortunate to still see my therapist every other week her ongoing help is what I credit for my maintaining  physical abilities. 
carofer   medicare changed its rules. they will pay for only 15 pt sessions per year
ronmoffett   Yes. Is a key to staying healthy with KD. In my opinion, the two biggest risks for KD are falls and pneumonia.  Both can change your condition fast..
carofer   i am also in aquatic exercise class
carofer   breathing exercises are important to stave off lung problems too
DavidOhio   Oh I wonder what would happen when I have to start dealing with Medicare, I will start working on setting aside budget dollars to cover the extra sessions next year
carofer   i'm not sure if supplemental insurance helps
DavidOhio   Carofer you are so right on the breathing issues, I try to do a number of throat and neck exercise every day to maintain those muscles also
carofer   at $650 per session, it gets pricey
TomK   Carofer, I am been using the "SMART VEST" MACHINE to help with breathing.
DavidOhio   Oh I guess I need to investigate a supplement plan.  As for the cost years ago I ran into a limit but was able to negotiate the same discount with the hospital for the uncovered PT sessions.  Still was expensive but significantly less than full price
carofer   good idea, david
carofer   i have an inspirator machine. is that like smart vest?
ronmoffett   Men. its been a great chat this morning. Thanks for participating. I need to transition to get some work done. I wish everyone a good month and a healthy 2018.  
TomK   The smart vest shakes your Lungs for 5 Minutes.
DavidOhio   TomK I guess that helps you with phlegm issues right? 
carofer   very cool, tomk. is it helping?
DavidOhio   Ron have a great rest of your weekend and until next time stay vertical!
TomK   Phlegm & mucus it shakes it out 
carofer   i'm going to check it out. for now i need to leave also. happy new year to all!!!
DavidOhio   I will be making a note of that device, the last time I had bronchitis I got so weak I needed an emergency room visit.
TomK   The Pulmonary Doctor recommended the VEST!
DavidOhio   Well gents it's been a great chat and I also need be moving on the other tasks today.  Happy New Year and best wishes for all to stay healthy
TomK   Good Chat today!
TomK   Keep your wheels dry & stay Healthy.