Kennedy's Disease Association

A Public Benefit, Non-Profit Organization

"I am very glad to see that you have added the personal stories, they are a great help. They give an outlook on what to expect with such a disease. It makes me proud to see people who are willing to express and share their stories with the world, keep up the good work!"

2017 Chat Room Transcripts

Topic: Open Forum  
GregF   Good Morning Ron
ronmoffett   Good morning Greg. How ru feeling today ?
GregF   Doing well how about you?
ronmoffett   Doing better. I had the Flu for the last couple weeks. I am finally feeling better
GregF   That stuff is horrible this year. It seams like a *banned*tail of sicknesses that hit all at once. Several of my friends have had it and it seams like it just hangs on for a long time
GregF   I'm glad your feeling better
GregF   That is supposed to be a *banned*tail of sicknesses 
GregF   a mixture of sicknesses
ronmoffett   Thanks - yes. This just seams to hang on. Its been a tough year health wise for me. I am looking forward to the warmer months 
GregF   Is it starting to warm up up there
ronmoffett   How has the weather been by you ? We have had cloudy skies for 8 or 9 days in a row. Finally some sun today
GregF   It has been raining most of the week here, but that's ok we need the moisture and we aren't getting the snow that the mountains are
ronmoffett   Rain is better than snow. Your in Colorodo ? Correct ?
GregF   yes that is correct, snow makes it hard to get around
ronmoffett   Do u still work or ru retired ?
GregF   Both I am not able to do the work that I used to but I volunteer full time as the Administrator of Riverview Christian School 
GregF   I was a heavy equipment operator and truck and heavy equipment mechanic for 38 years
ronmoffett   The admin position sounds like a nice way to keep busy. I imagine it was hard to be a mechanic with KD 
GregF   Yes in the field that I worked in every thing was heavy and awkward. Now I am behind a desk all day and that takes some getting used to  
GregF   Are you still working?
ronmoffett   Working behind a desk does take some time to get used too. I am still working. It has gotten harder. I battle fatigue a lot. I feel tired all the time and it has become hard to work
GregF   I have that same problem but I don't sleep very well at night, I think that has some to do with it as well
GregF   What do you do for fun? 
ronmoffett   Yes, could be. I went to a sleep study and they put me on Gabapetin to help me sleep. It has helped a lot control the movements that would wake me up from sleeping but no matter how good a night sleep I get. I am still tired. 
GregF   I am on Gabapetin as well, I don't have the twitches as bad as I used to
ronmoffett   I like to be outside. So, I like to walk my dog or go fishing. I like baseball a lot so I am happy that its opening weekend. I like taking drives. How about you ? 
GregF   I like to be outside as well, I can
ronmoffett   ru taking the gabapentin when you go to sleep ? Or, all day ?
GregF   oops I can't walk like I used to but I am learning photography and I really like that. I also spend a lot of time with my smoker, I enjoy cooking on it
GregF   I take it 3 times a day, Breakfast, Lunch, and Supper
GregF   300mg 3 times a day
ronmoffett   Photography is great. I am interested in learning more about it myself. I also enjoy cooking
ronmoffett   This could be why your tired. As you probably know a side effect of the drug is being tired. That's why my neurologist told me to take it before I go to sleep.
GregF   The more pictures I take the more I realize how much more I have to learn but I like it
ronmoffett   Yes, photography is complicated. There is a lot to learn. What do you take pictures of ?
GregF   Yes and I was afraid of that when I started taking it but I was twitching so bad that I had to do something
GregF   Mostly outdoors country life, cattle, old tractors, trees, and things like that
ronmoffett   That's a nice subject matter. You have a lot of that by you in Colorado. Illinois is not known for its scenery
ronmoffett   How long have you been twitching for ?
GregF   I tried some portraits of my wife but I didn't do as well with those
ronmoffett   I think landscapes are easier
GregF   I have had the twitches for a little over 10 years, they started out mild and just kept getting worse
GregF   Also my hands get to shaking so bad that I can barley sign my name or type on the computer
GregF   barely 
ronmoffett   That's a long time. I twitch occasionally but not bad at all yet. My fingers cramp up in the cold which makes it hard but so far I am ok with the twitching. I forget Greg. How old are u.
GregF   I used to hunt a lot so I would really like to get a blind so I could photograph wild life
GregF   I am 56
ronmoffett   We are close in age. I will be 56 in January. How long have you been involved with the school ?
GregF   I started here in December of 2013, My Dr. told me I couldn't work anymore in January and I was fired from my job the first of February that year
ronmoffett   A blind would certainly help. That and a high powered zoom lens. I am interested in wild life photography also. I like those type of shows on tv. 
ronmoffett   That's awhile. Is the school close to where you live ?
GregF   The school here is 5 miles from town, we have turkey and deer on the playground regulary
GregF   The school has a house on the property, they let me live in it for my salery
GregF   Its only about 200 yards from my office
ronmoffett   Thats nice that's it close. I know Colorado can get pounded with snow. I try not to go our when it snows
GregF   Yes even living this close it can be hard to get to the office when it snows
GregF   My chair does really good most of the time but it don't like snow
ronmoffett   You probably need one of those tractor wheel chairs I have seen at a conference. Just plows through snow and over rough terrain 
GregF   They brought an Action Trackchair out and let me try it, I loved it but haven't saved enough money to get one yet
ronmoffett   I remember them being a ton of money and very large.   
GregF   These aren't as expensive as some of them. I think they start at about $11.000 for the basic model. some I have looked at online are around $40,000
ronmoffett   11 is comparable to some other chairs but they don't appear to be that maneuverable to use in doors. A person would need 2 chairs which is very expensive and takes up a lot of room.  
ronmoffett   How big is the town you live in ?
GregF   That is right they are to big to use indoors and the lady told me that the tracks will destroy carpet so they are strictly for outdoor use 
GregF   Brush is about 5000 people
GregF   I was raised in Eastern Kansas in a town of 2500 so this is big for me.
ronmoffett   Thats a good size town. Is there a MDA clinic anywhere close ?
GregF   One in Denver which is a little over 80 miles away but I have been disappointed in that clinic I go to Kansas City to the one there
GregF   Its a 10 hour trip to K.C. but I go and visit family each time and that makes it a good trip
ronmoffett   I think each clinic is different. Glad u found a good one. The MDA just changed its approach with treatment. I am not sure I am going to go back now.
GregF   Why is that?
ronmoffett   I used to go and the neuro would see me and make some suggestions. They would bill my insurance company and then not charge me the difference. The last time I went. The neuro saw me. Sent in a sleep study doc and a few other people and I had a $ $2000 bill which I was responsible for.
GregF   O wow, that would hurt, this is the first I have heard of that.
ronmoffett   They call it there wholistic approach now. If you have good insurance I guess its good.
GregF   All I have is Medicare so I wouldn't call it good insurance
ronmoffett   If I go back. I am going to be clear that I just want to see the Neuro and that's it.
GregF   I sure understand that
ronmoffett   I don't know much about medicare and how it works there.
ronmoffett   Greg. I hasve to go meet a friend. I wish you a good day. It was great chatting with you
GregF   They pay 80% of the bill and I am responsible for the rest. So far the MDA has picked up the difference 
GregF   Have a good visit and it has been a good visit Good by 
ronmoffett   Greg - check with them. I don't know if they will pick up the difference anymore.
ronmoffett   Bye