Welcome to all......

I would like to welcome ALL newcomers to my blog: Gene Chapman's ALS Journey. I was diagnosed with ALS (Lou Gerhigs disease) back on 1/12/2010. It was confirmed on 2/12/2010. I enrolled and started in a 3rd stage drug trial out of the Mayo Jacksonville, Fl. Clinic that will hopefully stop but not cure ALS. My first dosing was on 4/30/2010 and my wife or my daughter in law administers two 20 cc dosages twice a day, one per sitting, 12 hours apart via a picc line that was surgically placed in my jugular vein.

I have filed for and should get disability by the end of August, 2010. Till then, my wife and I carve out a living with our two dogs in the Gainesville, Fl. area.

Tuesday, July 27, 2010

CHOICE...

Good afternoon all. I wish to apologize for the delay in my post to this blog; my Secretary went away for a week and I was lost. While she is given a stipend, she is still a young teen and basically does what she wants.

I am doing well today, no pain and some-what mobile. I am waiting for the MSW she is forty minutes late.

My visit to Mayo went well last week.We found a Five-Guys Burger and had a great lunch. We then went to a Wal-mart and I used a new scooter and was actually a help to my wife which was refreshing. I will certainly do that more.

This weeks blog post is about making choices: this is perhaps the greatest gift that our heavenly Father has given us. I began thinking about this subject when my wife, Sharon, made the comment to her brother, David, that her decision to stay with me and honor her marriage vow "in sickness or health" was a choice she made. That got me to thinking about choices we make everyday that are both important and not so important.

If you believe that we are made in God's image, then it was God the Father gave us this Free Will when we were first created. The flip side of choice is unconditional love because you cannot have unconditional love without Free Will. The reason I state Free Will is that there can be other types of choices made by choice: guilt, anger, even denial. To have a Free Will choice a person must be free of any external forces and only motivated by love from the Father, the Spirit of the Son and the Spirit of truth. There are times when we must have self-love but that is only when you are being self-caring.

As a matter-of-fact the angels, when it came time for them to make a choice to follow GOD the Father or Satan they only got one choice and that's only because they were not created to experience GRACE! I do not believe that this was limited by the lack of love but just because angels, being created just above men were not created for grace.

Now back to the choice; when my wife chose to stay with me it was done out of selfless love. That is how choice was designed to be made. Every decision that GOD the Father ,Son and Spirit does is selfless and out of love. And from what the Apostle Paul tells us I Corn. 13 we can surmise that Satan did not rebel out of love!, except for himself.

I could say more, but it would do this subject a tremendous disservice. I do not wish to do that. The only perspective I can give is my own and I believe that love is the only choice we can make. It was made by my Father in heaven, his son who is my Savior, and the basis for the truth given by the Spirit. That is the choice that his Son made in the garden , and that is the choice that I believe that my Father in heaven wants me to make.So make the choice of love.

Love to all,Gene/slc

Wednesday, July 14, 2010

Dark Things......

Good afternoon to all, some updates on whats going on. First, Sen. Lemieux's office is still working on my Medicare foul up, this is frustrating to me because I need things and home health help and physical therapy. Second, I have just finished my 5 day steroid treatment and I am back where I was 6 days ago. During that five day period my overall ability improved and the pain was eliminated. I hope my wife calls my doctor for long term steroid use because I am in pain. I have not gotten up except to go to the bathroom yet today because I just don't feel like it. This could easily turn into a three pain pill day. Third, today is my 29th wedding anniversary to the gift from my father above, Sharon. Fourth, our five pound chihuahua has been sick and is coming home from the vet today, an unplanned expense. Now on to today's post.....

About two weeks ago my wife brought this concept to my attention; I call it the reduction or elimination of the "dark things" in our lives. To be specific, I make the choice to monitor and manage all the dark things that I say, hear,and watch. I choose simply to do this out of love for my wife and for my family. This disease has been difficult but especially so on my wife Sharon because she got hit by every thing. What I choose to do, I do for her and to be obedient to the will of my father in Heaven

Again, to be specific; there are certain TV shows I will not watch. There is certain music I will not listen to. Whenever I think of it I bring up this mental picture of a a barrier of love around my family. This is not my love this is my fathers agape love that he gives to us. Since my primary source of entertainment is the TV, I am picky about what watch. I wish to be clear here so I will restate this belief in a more concise manner: I believe that there are evil forces that exist that have manifested themselves through my disease and the results of this disease.

I must be very careful and always remember that I am not being punished nor did I commit "bad karma". This is not the "luck of the draw". I simply choose not to be discouraged or allow my encouragement to be taken or stolen from me. I also choose to protect my heart. That protection extends to my wife and family which are the two things plus the relationship with my father in heaven that make up the three things that are most important to me, even more important than my life itself. This is not done from a legalistic "have to " position but from a father's love for those who love him. It is my choice to set and be the example of love to my wife and family, this extends beyond the encouragement for husbands found in Ephesians chapter 6.

So here I am asking what does this really mean? Am I just guarding whats important or am I connecting with something much much bigger than I am? These are thoughts that I must consider and try to answer in next weeks post. Already the thought of an old barn comes to mind..........

Love, Peace, and Understanding to all, please keep Sharon and I in your prayers, Gene/slc

P.S. For more information on this viewpoint read C.S. Lewis's, The Screwtate Letters

Wednesday, July 7, 2010

My life is not my own...

Greetings everyone.I hope everyone had a great holiday over the 4th. My holiday was much like everyday except my wife was with me.

My granddaughter Sharon ,not my wife Sharon, is typing this for me since my hands are swollen and stiff.My daughter Rebekah and her crew has come and gone, She got allot done but there's more still to do.

Now,onto my statement: My life is not my own. I want to say upfront that being a believer in Christ; I know I was bought with a price and that spiritually I belong to him. That is not what I am talking about, I am talking about your everyday,day-to-day happenings,my life in general.Since I depend on others to help me out of bed,or up from the chair,or even take me some where I need to go, since I no longer can drive,I feel my life is no longer my own.Some might say,Gene, get up get out and move on with it.It is not that simple since I depend on others for help For example I am laying in bed with swollen hands and my granddaughter Sharon is typing in this Post.If she was not as gracious in doing this for me,it wouldn't get done

My life now revolves around the t.v. the satellite, the bathroom,and two or three meals a day.Fortunately my youngest son and his family have moved in to help with my care.This has helped tremendously.

Now back to the subject at hand;even when we get in a car to go some place it is a chore to carry the extra stuff I need and to get comfortable.My caretaker and I both get wore out by just doing this.This is why I don't go to church or even don't try to find a church.There is no easy or quick and dirty solution to this issue. Still waiting on my SSDI means I can do nothing outside the house that cost money.Why even eating in has become a chore!

Since this is a life and situation that is in progress. This story has not ended but this is where I am at right now,today.I'll be married 30 years in the middle of this month and I'll be 51 years young later on this month.This is not where I expected to be when I reached those milestones.I'll say more when the time is best.

Continue to pray for us, Sharon and I. Things are better because of the two positive changes I mentioned in this post but I wish for more.The challenge I wish to leave you with is : How much of your life is your own?

Love and Blessings,Gene