Curing AMN: A Tall Order

I learned that there had been a transgenic X-ALD mouse model for many years, and I kept hearing about the grand gene therapy trials that were right around the corner. Still, things were not happening as I would have liked. At the time (mid-to-late 90s), efforts were limited to re-purposing old medications; not exciting. Still,Continue reading “Curing AMN: A Tall Order”

Brad Gillespie: AMN Peer Mentor

I am pleased to be selected by ALDConnect as a Peer Mentor. It is my hope that I am able to help AMN-afflicted men better understand their disease and the scary thoughts that many of us feel as we come to terms with our diagnosis. Many thanks to the folks at ALDConnect for the opportunityContinue reading “Brad Gillespie: AMN Peer Mentor”

Back to Business: What to do with a Recent AMN Diagnosis?

Please rewind to 1996, the early, foggy days. So that was what cerebral involvement was all about. There was no way that I could have imagined how horrible it could be. Nonetheless, at least for the time being, my MRI looked good: I did not have to worry about this business, and that was aContinue reading “Back to Business: What to do with a Recent AMN Diagnosis?”

Coming to Know Todd

While dying is what we are trained to fear, it turned out that bearing witness to the passage from living to dead was not as difficult for me as I had expected. Somewhere in the process, I became detached from the anticipated dread, and engaged in a pleasantly unexpected subject. To understand this development requiresContinue reading “Coming to Know Todd”

Todd was the third to go

After a few trips to the hospital, mom got Todd enrolled in a hospice care program. So, the next time he got sick, he would skip the hospitalization and the stuff that goes with it. Instead he would receive extra grooming, time with a chaplain, additional nursing care, morphine and oxygen. His time in hospiceContinue reading “Todd was the third to go”

Cerebral Adrenomyeloneuropathy

This one is not such a cheerful installment. I am aware that I promised that the content of this website would be optimistic and upbeat. Nonetheless, as we all know, the potential for cerebral involvement is part of the bargain. I do not plan to dwell on it, but it is a big deal forContinue reading “Cerebral Adrenomyeloneuropathy”

His Name is Ken D: He has AMN

This one was a bit tricky for me to write. If it hits anyone the wrong way, please know that it was not intentional. I have known Ken for the past several months through ALD connect. Please watch his story. Suffice it to say, if you are afflicted with AMN and do not know him,Continue reading “His Name is Ken D: He has AMN”

First Impulsivity after an Adrenomyeloneuropathy Diagnosis

It was the Friday before Mothers’ Day when Dr. Moser dropped the bomb. My body proved resilient, remaining virtually the same as it was the day before, the month before, really even 5 years before. Everything else, though, at least everything that I could see, was flipped on its head. This decapitation of my physicalContinue reading “First Impulsivity after an Adrenomyeloneuropathy Diagnosis”

Part 5: Diagnosis: Adrenomyeloneuropathy

Betty was a good sport, and a hard worker. Since I have never been able to consider complex answers to such simple questions, I was confident that she would come back with a straight forward plan of attack. Certainly, an explanation for what had been causing these annoying balance problems. More importantly, I expected anContinue reading “Part 5: Diagnosis: Adrenomyeloneuropathy”

Words from Jeff Harmon, an AMN brother

Jeff sent me this video about his journey. Please have a look. I think what is so great about Jeff’s talk is his openness to discuss his challenges, issues that many of us have. While I am now older and maybe a bit wiser, I realize that most of the stuff comes with the territory.Continue reading “Words from Jeff Harmon, an AMN brother”