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”

Trail’s End/Journey’s Beginning?

So, we came back the next year, but it did not go well. I did not make it far this time, and never completed the AT. Still really important because it was a pivotal point in figuring out what would be my life. When you are on the trail, you spend a lot of timeContinue reading “Trail’s End/Journey’s Beginning?”

FDA Patient-Focused Drug Development Meeting

See a very important announcement fromaldconnect ALD Connect plans to submit a Letter of Interest to the FDA to host an Externally-Led Patient-Focused Drug Development meeting in April 2022. The primary goal of patient-focused drug development is to better incorporate the patient’s voice in drug development and evaluation. Our target population will be adults withContinue reading “FDA Patient-Focused Drug Development Meeting”

Strength? Or Weakness?

I have been described as mainly stubborn. I seem to have trouble giving up. Even when impractical. If I can get it done, I do. If I think I can, I try. And I think that is a strength, a good thing. According to dear olde dad, it has always been that way. AMN hasContinue reading “Strength? Or Weakness?”

A Mother’s Grief

Too often, I am afraid, we spend much of our time focusing on those afflicted with disease, without worrying so much about the impact on those around them. My mom, a lovely lady in so many ways, was stoic. She was a hard worker, who invested little in outward emotion. She was focused on objectives-Continue reading “A Mother’s Grief”

Wanted: Conquest

Maybe it was because I was no good at regular stuff, but I always have had this real need to conquer something, anything big would do. Most likely something long, canoeing the length of the Mississippi? I became obsessed by the Appalachian Trail (AT): a single track, skipping along the mountaintops from Georgia to Maine,Continue reading “Wanted: Conquest”

Something to Consider

I love to enter road races in my wheelchair. It is part of what I do, to feel normal. I guess I have a bit of work ahead of me before I need to deal with the problems described in this article- I am consistently slow. https://fivethirtyeight.com/features/why-wheelchair-racers-outpace-olympic-distance-runners-but-not-sprinters/ I have a racing chair that some dudeContinue reading “Something to Consider”

Genotypes, Phenotype, Whatotypes?

I expect every man with AMN knows full well how he got to where he is. We all know that while dad did his part proper on the Y, over on the X side, well, politely, mom shared a gimpy chromosome. Thus, the term, X-linked, as in the umbrella term, X-ALD. This, boys, is ourContinue reading “Genotypes, Phenotype, Whatotypes?”