Verse 21: I expect that we do as we must

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”

Wheelchair Maintenance

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”

The Oil Speculator Meets with the Man

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”

Bitty & Beau’s

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”

Getting to Know Mr. Augusto

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”

Fire in the hole!

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!”

I am told that getting weed is pretty straight forward. Lorenzo’s Oil was a bit trickier.

I sent out bunches of e-mails to suppliers. Mostly, I never heard back, and when I did, there was always one roadblock or the other: the Oil was available only by prescription, while sometimes, it could be purchased over the counter. Then it got complicated. The darn thing was, even if the Oil could beContinue reading “I am told that getting weed is pretty straight forward. Lorenzo’s Oil was a bit trickier.”

“So, there you have it, drink Lorenzo’s Oil and grow myelin!”

Although the study was halted, I still needed to come in for my final study appointment. Compared to my previous visits, my mood was not great. Still, I tried to be optimistic. I arrived armed with questions: “why was the study stopped early”, and with a bit of desperation, “were they able to salvage anyContinue reading ““So, there you have it, drink Lorenzo’s Oil and grow myelin!””