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”

Disabled Adventures!

I like to think that I stretch the boundaries of what can be done in a wheel chair, well at least I used to until I ran across this young man in Maine! This is incredible stuff. I guess we all face at least some self imposed limits. Go Enock G! Makes me think thatContinue reading “Disabled Adventures!”

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”