Dear AMN men Certainly an exciting time for Minoryx and Swan Bio! As you all have learned, though, while we share many attributes of the disease, all of us are special in our own way. It is because of this, I am thinking that it is going to take more than 1-2 solutions to solveContinue reading “There is work to be done!”
Category Archives: Uncategorized
Working that Oil
Dr. Moser had published an article 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”
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
Blue Ribbon Day!
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!”
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”
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”
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”