This shirt is available in Greg’s AZ Store.
Hello, friends, family, and supporters.
“I wish I knew then what I know now” are lyrics from the 1973 song “Ooh La La” by the rock band Faces. I suppose all of us have made decisions and later felt that way. I certainly feel that way about my decision to start Lecanemab infusions last October.
The consistent adverse side effects I experienced from Lecanemab led Duke Neurology to stop my infusions about two months ago. Most of the drug-related adverse side effects have stopped.
I am not going to bash Lecanemab. Some people are realizing positive results from Lecanemab. Overall, I think the modest benefit, safety concerns, and high cost should give every patient pause. If you are considering Lecanemab, please carefully conduct your own risk-versus-benefit analysis. You can also contact me if you want to chat.
In my opinion, my medical team at Duke Neurology is the best of the best. They fully explained the pros and cons of Lecanemab and Donanemab to me during the decision-making process. The challenge I faced (and probably most Alzheimer’s patients do) was limited knowledge of AD, fear stemming from the diagnosis, and grasping for anything that may slow the disease progression. Let’s be totally honest and blunt - I was scared shitless. Who makes good decisions in that state of mind?
Knowing what I know about Lecanemab today, I would not have started the infusions. The complete cost (relocation to be near Duke Health, closing my business, severe side effects, and mental anguish) was not worth the modest benefits. Ultimately I had to stop the infusions due to the adverse drug reaction.
Today, I have only one therapeutic option available. NeuroEPO (also known as NeuroCIM) appears to slow the progression of mild-to-moderate AD. The challenge is that this drug was developed in Cuba. While many Americans travel to Cuba for medical evaluation and possibly to obtain NeuroEPO, there are inherent risks. Another hurdle is that the cost for the drug, travel, and medical evaluation must be paid in cash. United States health insurance is not accepted in Cuba. In my mind, the greatest risk of NeuroEPO is political. Trump openly talks about taking control of Cuba. I would hate to be in Cuba when the United States attacks. (I would miss Linda and our cats!)
For now, I am shifting my focus to prevention. My other publication (Greg Rowland’s Alzheimer’s Research Report) will focus on research, emerging therapies, and existing symptom treatments.
This publication will continue to chronicle my Alzheimer’s journey in a very personal, honest, and raw manner. Additionally, I will write about emerging Alzheimer’s prevention efforts.
As I prepare for our move to Greensboro, your spiritual and emotional support continues to keep my spirit strong. But living with Alzheimer’s - navigating the costs of care, relocations, and exploring new options - comes with heavy, unavoidable financial realities. Direct financial backing allows me to maintain stability and access the care I need right now. If you are in a position to give, please consider making a financial contribution today - your support means more to me now than ever.
Greg
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