Dr. Moser had published an article[1] that suggested that if pre-symptomatic boys received Lorenzo’s Oil, they had a reduced chance of developing the bad stuff associated with adrenoleukodystrophy. Problem: this stuff was hard to come by, in the U.S., anyway. I wondered, could this deficiency actually be a novel angle? Expectant and new parents, withContinue reading “Working that Oil”
Tag Archives: X-ALD
6 Lesions is not proof, but…..
When I was diagnosed with AMN some years ago, I remember telling myself: I am ok with a wheelchair, but please, please leave my brain alone. So, as I was advised, I got the annual MRI. Nerve-wracking for the first several times, but became routine. Back in those days, the company line was if youContinue reading “6 Lesions is not proof, but…..”
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
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”
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”
ALD Connect Annual Meeting is Upon Us!
For those of us seeking up to date information on AMN and all of the other X-ALD maladies, I encourage you to register and attend this year’s ALD Connect Annual Meeting. There is no charge to register (as long as you are not a company) and it is virtual, so there truly are no goodContinue reading “ALD Connect Annual Meeting is Upon Us!”
Walking the Rails 