Apathy Surrenders to Progress!

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!”

Nice article in Neurology Today, Today

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

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”

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”

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!””

Derailed

The plan was a 4-year study, but 3.5 years in, I got a letter ordering me to stop taking the oil immediately, no explanation. I later learned that the IRB shut it down because enrolment was slow, inadequate patient retention and a safety issue. Turns out the safety thing was in a placebo patient, butContinue reading “Derailed”