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, June 1, 2010

First Tuesday...................

Good morning to all!!!!!! I hope everyone had a safe, fun, enjoyable holiday... As promised, I didn't even touch a computer or a cell phone while I was on holiday, which was OUTSTANDING!!!

First thing, first: ALS clinic was FANTASTIC! Many thanks to all involved but especially, Susan, Val, Debbie, Dr. B & Elke. Many tips, tricks & exercises! I go back in Nov/Dec 2010 for a 6 month follow-up. I really enjoyed the premarital discussion with Elke.

Drug study day: Went VERY WELL, INDEED! All my muscle performance stats were unchanged. No Gallbladder sludge (it was 100% clear) My. in-depth breathing performance was 81%!!! That is only off by 3% from Feb/2010! The spascisity has gotten a bit worse, so we have upped the muscle relaxer(s). (I hope Sharon will buy me some bottles of Merlot!). The good news: Virtually no change in the ALS since the baselines in April/2010!!!!! Looks like I will make it to at least Thanksgiving & my Grandson's wedding! Now for the bad news: the Pseudo Bulbar spells (inappropriate crying & laughing) has come on. They have medicine they can give me to eliminate those spells that are not anti-depressants. I have to find a pharmacy that still can mix drugs at the correct ratio.

After Jacksonville, we did a four hour drive, with one stop for the sake of my butt, to the Villages to see my dear sister-in-law & brother-in-law Sandi & Tom. We spent, late nights, plenty of laughs, some glasses of Rose' and some tears, and we had a happy & fun filled time by all. Sharon got some time off for caring for me, some time with her sister & started an Ebay store by the name of "JESS's Place; go check it out! Kudo's & thanks to Katey & tater tot, Mike & Kelly & Paul & Suzanne for all stopping by; It was a joy to see each & everyone of you; Thank You.

I learned some things about life in general & myself specifically, that I will share the rest of this week, so stay tuned for more! I am very sore & tired from over exerting myself, so I will go and rest up. A recent news bulletin: My daughter, granddaughters and my grand-daughter-to-be will be here either June 10th or that following weekend! Some very important young women that are exceptionally important to every one down here, especially to me!!!!! Since my grand-daughter-to-be, Natasha, has never been to Florida; we need to make plans for Disney, Universal & Seaworld, the Springs, the Beach & the Gulf of Mexico!!! Plenty of SPF lotion too!!

Well enough of micro managing what we all are going to do; I am just glad I have the ability to do those things, still!!! I notice we are up to eighteen followers on the blog, WOW!!

Love, Peace & JOY......, to all, Gene
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1 comment:

  1. KELLYJune 1, 2010 at 9:08 AM

    It was a wonderful time for us too.It was really great just to get to hear you laughing again.Don't forget to do your tongue exercises.If you need me to do them with you just call or write me a note.Anyways hugs and love sent your way.

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