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.

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
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1 comment:

  1. CandaceJuly 11, 2010 at 1:50 AM

    I will continue to pray for you and your wife, I'm glad for your positive changes, and I hope that your situation improves. I hadn't thought about how much of my life is my own, but it is definitely thought provoking.

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