Brain, like you I get the JAMA Network Neurology weekly updates for free. I encourage other people interested in these articles to subscribe at https://jamanetwork.com
. I have taken the liberty of sharing some sections of Dr. Daniel Gibb's article, because I feel strongly that it is informative and hopeful. I feel confident Dr. Gibbs would like his message heard by a wider audience. As an almost 67 year old ApoE 4/4 myself, I draw inspiration from this 67 year old, who is still teaching us:
I am a 67-year-old retired neurologist with early-stage Alzheimer disease (AD)...When I was age 60 years I accidently learned that I am homozygous for the apolipoprotein E (APOE) ε4 allele. I had DNA testing done for genealogical purposes through a commercial service.... I was shocked to find that I had 2 copies of the APOE ε4 allele....About a year later I began to notice very mild memory problems that I might otherwise have ignored had I not known my APOE ε4 status. I couldn’t learn the telephone number in my new office and I had trouble recalling the names of colleagues at times. I decided to retire in 2013 when I was age 62 years.
By the time I underwent my first amyloid PET scan, [in 2015] I knew that I had cognitive problems. The positive amyloid PET result was oddly reassuring. It gave me the certainty of a diagnosis. In consultation with my family and legal advisors, I made sure that financial and estate plans were in order. I modified my durable medical power of attorney to include detailed instructions regarding end-of-life issues. I made lifestyle changes that have been shown to help slow the progression of AD. I am committed to support research in AD and associated dementias both as a clinical trial participant and as an advocate. I speak regularly to medical students about my experiences with AD, and I encourage patients with dementia as well as their family members to consider volunteering for research studies.
...I am still doing well. My verbal memory is below normal, but all other domains are still in the normal range...I still read an average of 2 books per week, but now I have trouble remembering much about them a few weeks later. I make lists to stay on track and I use mnemonics to remember important names. I exercise daily and follow a Mediterranean-style diet. I try to stay intellectually and socially engaged. Other than no longer being able to work as a neurologist, early-stage AD has not been that bad, and I’m hoping for another 5 or even 10 years before entering the late stage of the disease.
Early in my career as a neurologist, my approach to a patient who was worried about dementia was reassurance for as long as possible, avoiding a firm diagnosis at all costs... I don’t think that attitude was acceptable then, and it certainly is not acceptable now. I strongly believe that the first effective disease-modifying therapies for AD will be those targeted at the earliest stages of the disease, perhaps even before cognitive changes are apparent. We as neurologists will need to provide the leadership to promote the early diagnosis of AD and the education of our patients in how the management of risk is possible now and is certain to improve in the not-too-distant future.