Status quo continued. Life seemed to be back on course with the wins sometimes more common than the defeats. Something remained, though, and I had no idea what it was. What was it that I required? Who could know, but it seemed that I had both short- and long-term ideas. I needed to stay healthy,Continue reading “Apathy Surrenders to Progress!”
This is a consensus article that sews together bunches of facts. It seems to answer many of the questions I am hearing from newly diagnosed ALD/AMN patients and their caregivers. Have a look. Keep it straight. Brad https://journals.lww.com/neurotodayonline/fulltext/2022/10200/new_consensus_document_provides_practical_guidance.4.aspx
My wife dragged the kids along on 5k runs. Great for the family, less for me. I mostly waited at the finish area. I needed more. When I heard of The Fathers’ Day, Amazon Foundation Run for the Trees, I decided that my spectator days were over. I would celebrate Fathers’ Day rolling with theContinue reading “Blue Ribbon Day!”
There were some ups and downs. I drank the gross medicine. This was not the main attraction, though. At the end of the day, I was still a cripple. I had 3 young kids- there was plenty to do. My progress, while significant, did not erase the physical challenges. I was still walking (well, sortContinue reading “Verse 21: I expect that we do as we must”
Anyone who reads, has likely seen bunches of articles intending to teach us how to go about being disabled. I happened upon this one in Forbes today: How To Look For Help If You Have A Disability The best that I can tell, Mr. Pulrang has concisely summarized most all of the stuff that IContinue reading “Fantastic Article”
Hello folks. A question for you all. Maybe I am just extra hard on my chair. Anyway, it seems that I am constantly fixing one thing or another. I have parted out 2 older TiLites, almost to the frames. It got me to thinking, do other people have this problem? If so, how do youContinue reading “Wheelchair Maintenance”
Maybe I could slow down a bit. I was keen to move from the reactive to the reflective space as I tried to learn more about my disease and how its course might be interrupted. It made good sense to meet the elusive Mr Augusto. The plan was for a coffee break at his houseContinue reading “The Oil Speculator Meets with the Man”
This is quite fabulous. Please read and share the inspiration: http://www.bittyandbeauscoffee.com Amy & Ben Wright are the proud parents of four children — Lillie, Emma Grace, Beau and Bitty. Lillie was born with autism, and Bitty & Beau were born with Down syndrome. With over 80% of people with intellectual and developmental disabilities unemployed nationwide,Continue reading “Bitty & Beau’s”
I guess I never knew quite what it cost. There were a few extras: wire fees, shipping charges, U.S. import duties and the like. Besides, I bought the stuff in Euros, and I always get confused by exchange rates. It seems that in December, 2009, it came to around $175 a bottle, which was enoughContinue reading “Getting to Know Mr. Augusto”
Untangling the shipping mess was going to wait. I had 17 bottles, and was on the program. I figured that my dose ought to be 50 mL per day. I vividly remember that first day. The whole family gathered around the kitchen table, almost like a ceremony. They watched as I carefully measured out theContinue reading “Fire in the hole!”
Something went wrong. Please refresh the page and/or try again.
Follow My Blog
Get new content delivered directly to your inbox.