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."

2017 Chat Room Transcripts

 

Topic: Open Forum  
     
DavidOhio   Hi Ron sorry I am late
ronmoffett   No problem. How are you today. I didn't think anyone was going to join.
DavidOhio   Other than being forgetful I am well.  How have you been feeling?
ronmoffett   I have been feeling better - thanks. I was in a bad slide health wise but I have appeared to have leveled off a little. Feeling a little stronger.
ronmoffett   How is your family. - Wife and daughter ?
DavidOhio   Glad to here you are currently stable.  Assuming it is KD related Did you make any changes or treatments to help or was it more a matter of time and acceptance?
DavidOhio   Our grandson Nate is now 10 months old.  We had a very short Saturday only visit last weekend and he is much more interactive and aware of others
ronmoffett   Thats a good question. Its certainly KD related. I have done exercises in the mornings before I get out of bed. I got them from a PT. It has helped tremendously. I was at a point when I would get up in the morning. I felt like I was going to fall over. This has improved my balance quite a bit. 
ronmoffett   Let me add they are just leg exercises
ronmoffett   10 months. Time goes by. Does your daughter have any plans of moving out of the city ?
DavidOhio   I am glad you got some PT help.  The guidance and encouragement I get from mine is critical.  Keep up the hard work on what you have learned but do not overdo it.  In time I hope like me you can add other actions to continue a gradual improvement.
ronmoffett   Yes. It helps. I also cut my walking down a bit. This has helped. Resting more
DavidOhio   Moving out, definitely not.  They love their Lakeside East neighborhood and have even mentioned that their local public school has a great reputation, which I found surprising since all I hear about that school system is the typical big city problems.  They would like to get a bigger apartment. 
ronmoffett   Wow. As a whole the Chicago school system and the city itself is filled with problems. There are pockets though that are actually pretty good. Just depends where you live 
DavidOhio   As for the exercise, I am currently finding that I need to pay more attention to the amount of time I am on my feet.  My overall abilities remain sound, I just need to take a rest sooner than I would like.  But that's all part of accepting and working within the limitations.
DavidOhio   Are you still able to work or have you needed to take a medical leave?
ronmoffett   I am still working but it is getting harder. The constant stress doesn't help the situation. I am thinking about saying something and moving toward retirement early next year. Just not sure. 
DavidOhio   The only problem for the kid right now is their dog George; she is old and her health is failing.  Nate of course is too young to notice any change, but it has been very hard for his parents.  I fear that it will be time to make hard decision to let her go; she appeared to us to be suffering a great deal.
ronmoffett   Putting a dog down is one of the hardest things to do in life. I remember back when I was young. I couldn't do it. My older sister had to. Its a shame that dogs have such a short life span
ronmoffett   How old is the dog ?
DavidOhio   Before you retire officially I strongly suggest that you investigate and apply for Social Security disability.  Based on that fact that my cousin who is the attorney who presented on applying for disability at the last DC area conference and did think he would qualify, actually did qualify and received full disability benefits and the associated health care!
ronmoffett   Is your wife traveling with you to the conference ? Are you driving or flying ?
ronmoffett   Yes, I need to figure this out but I think that you can't be working when you apply for SS disability. Am I correct on this ?
DavidOhio   She is a shelter dog and based on the age estimate they got for her, she is now around 9 years old, which as I understand is old for a dog.
ronmoffett   Must be a large dog. For large dogs. 9 is getting up there
DavidOhio   Actually I think you must be working or have very recently left employment for health reasons.  Bruce has put together a fairly effective guide for making the application on the KD website, start with it. 
ronmoffett   Yes, I remember now that he did put something up. I need to probably read it and figure this out.
DavidOhio    I think if apply for and receive your company's long term disability benefit that may  help with the social security application
ronmoffett   Whats not funny but true is. We are the largest insurance company in the world. I have paid for a long term disability policy through my employer. I haave recently learned reading it that long term means 3 years and caps it at 30% of your pay. Nothing like making sure your employees are taken care of when the unexpected happens. 
DavidOhio   We are planning to drive and in fact just this morning we started making plans to add a Blue Ridge Parkway and Skyline Drive adventure part of our getting there adventure.  We drove the parkway south from its starting point 7 years ago and are thinking of making it a northward drive this time.  The total length of both drives in over 500 miles at a speed limit of no more than 45 mph.
ronmoffett   What I am looking to do is relocate to a less expensive area. This should help. I went and visited a few places in TN a few months back. In a few weeks I am going to look at some places in Arkansas.
DavidOhio   That is a sad reality of the times, many companies have severely cut benefits.  I think you are smart to find somewhere now and moving south will certainly help you avoid some of the cold weather problems we experience. 
ronmoffett   Sounds like a nice trip. I haven't been to the east coast in a long long time. How many days travel are you figuring ? 
DavidOhio   I think we will need at least three days on the parkway/skyline and have it end on the Monday before the conference. So my current thoughts are to head south on I-75 Friday morning November 3rd.  We will head back on Friday the 10th after the conference and stop somewhere that night on our way home.
DavidOhio   If you have trouble with the SS disability process let me know. Paul might be willing to help a fellow KD'er gain the benefits he needs.
ronmoffett   Sounds like a sound plan. I can't drive that many hours anymore. I don't know if its the KD or age. I try and drive 5 to 7 hours and then I stop at a hotel
ronmoffett   Thanks. I appreciate it. I think I know Paul. Where does Paul live ?
DavidOhio   Even with Margy sharing the driving we also tend cap the drive at around 7 hours and that includes at least two stops.  I have yet to determine how far we will need to drive on that Friday and if it is too far we head out on Thursday.
DavidOhio   He lives in the DC area, somewhere in Maryland I think.  I have seen him only twice once at the conference and then at his Aunt's funeral(Tom Kotte's mom and my great Aunt). 
DavidOhio   It has been nice chatting with you Ron.  If I can help in anyway as you working on your work exit strategy call me or send me an email.  I know that is sometimes helps to have someone else read over contracts etc.
ronmoffett   I think I have ran across him on chats. Thanks David. I will probably take you up on your offer to talk through it with you. Nice catching up with you. Have a wonderful weekend. Be well.