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.

Friday, May 21, 2010

Things on my mind............

When I got up and around a few minutes before 7 am this morning, I felt tired and my arms felt very rubbery. Now it's after lunch, I am rested and fed. I am not so tired, but my arms STILL feel like rubber. I hope this is not a permanent feeling. I will probably double up on my muscle relaxer tonight and use the hand splints that help my hands when they really curl up. If this is what I have to endure to have as much time with my family as possible; then YES, it is worth it. I love my Wife Sharon, My three adult kids, Becky, Stephen & Mike AND my 10 grand-kids and the soon to be grand-kid-in-law Natasha; and I want to spend as much time with them as possible. It's Friday and Star Gate Universe is on at 9 pm. Hopefully the sky will clear up and allow, Sharon Lynn, Mike and myself do some Star Gazing tomorrow night. I saw a Yahoo news brief that both the ISS and Atlantis will be visible to most of the US this weekend right at dusk & dawn. Something to look foreword too!

Now onto what's on my mind: There is nothing new in the World, a quote from Solomon and I would like to add there is nothing sacred in the world. The reason I say this is because on the Yahoo news brief this morning I saw a story stating that they were planning on bringing a remake of the venerable TV show known as Hawaii 5-0 on! Plus, they redid the theme song and gave it a 21st century style and sound, which I liked. The purists out there didn't like either option, but I think it might be around for a few seasons. That is the "nothing new in the world" piece because the film & TV producers are remaking more & more shows!

Now for the nothing's sacred part. I also read on a separate Yahoo story that some nutritionists with a cause are bashing Ronald McDonald and want that clown pulled. The CEO of Mickey D's basically said NO! Now, Ronald is about the same age as I am (50 years young) so he is a 50 year old American icon. You just don't mess with a 50 year old American icon!!! I have a personal spot in my heart for Ronald because way back when, when I was into clowning about 3-4 years; I interviewed for Ronald's assistant for the Orlando Ronald McDonald. After missing that spot by one decision (the clown wanted me, the SR. VP didn't, so the other guy got the job; shows you just how much they listen to the clowns that are in the know). Eventually, the assistant becomes the next Ronald McDonald. That would have been a SWEET job.

So nothing new in the world and nothing is sacred. My wife came in as I was writing the end of the previous paragraph and she added, "and no one cares either". What a crappy world we live in at times. I am just glad that we are not of this world, we are just visitors for a brief time.

Well Danny from the Barnes Health care Service just finished adjusting my power-chair. It's the neatest thing since sliced bread! He did it on the ALS loaner, power-chair and he took all the time needed and did everything that it took. It was so nice of him to dovetail it on a visit to Chiefland. Thanks Danny! And kudos to Cindi Pettio, who is a private practice Occupational Therapy Therapists, for taking time to bring the Hoyer lift with her last Wednesday night. It does fold down! I plan on using both of those professionals when my medicare kicks in.

Well that's all for now folks. I plan on taking the weekend off, unless Sharon does go into work on Saturday. If she does and I have energy I might to a weekend post. Love, Grace, Blessings,Hugs and Kisses to all, Gene

1 comment:

  1. I've been reading your posts and learning a little more about you. It seems that you have a large close family and lots of varied interests. I worked at what was Bellsouth, and there were several in our group who were clowns and it always looked like they had lots of fun. You must have been a very good one to have been in the running for Ronald Mcdonald. It can be a very cold world we live in, but it is also a very warm one at times. I think if we look around we can see the best and the worst on almost any given day. My mother wasn't very technically minded, and she was in her late 70's so she never got a power chair or the Hoyer, but I always wished that she had been able to. It would have opened up her world a lot. I hope that you and your wife have a good weekend. We live close enough to the space center to see a little bit of the launches, but only as tiny little vessels. I always wanted to go see one close up, but I guess that it is getting late now. Hope you get to do your sky watching.

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