The importance of paying attention
I read Lisa Genova’s first book, Still Alice, in 2009, long before I had any inkling that I was on the path to Alzheimer’s. I was busy in my practice as a general neurologist, and I had a number of patients with Alzheimer’s disease and other dementias. Two of my patients were professional women with early-onset Alzheimer’s, both still in their 40s. Still Alice is a wonderful novel about a 50-year-old university professor with early-onset Alzheimer’s from her own point-of-view as well as that of her family. Although it may seem odd, reading the book opened my eyes to what dementia patients and their families are really going through in ways I had missed as a neurologist caring for them.
Lisa Genova’s new book, Remember: The Science of Memory and the Art of Forgetting, is her first non-fiction book, and I highly recommend it. It provides a very readable yet accurate explanation of how our memory works: how we make memories and how we retrieve them. There are many tips on how we can improve our chances to remember something, how to remember to remember. Of course having Alzheimer’s or another dementia raises the bar for forming and retrieving memories. For me it is getting really hard. I have been using a pill minder for 4 or 5 years with good results. But lately I have been making more errors in using it. I might look at it in the morning and realizes I forgot to take the pills meant for the night before. More alarming is to find that I have taken two boxes of evening doses within minutes of each other, not recalling that I had just taken them. The problem is distraction. I can’t trust the automatic pilot anymore. I can’t be thinking of anything else when it’s time to take my pills. My recent solution that seems to be working so far is the note shown below that lies on top of my pill box: STOP – PAY ATTENTION. Sometimes when I see it, I’m surprised, but I always stop thinking about whatever thought my mind was chasing so that I can concentrate on the job at hand. Probably before too long I will have to turn over pill dispensing to my wife, but for now I can safely maintain that important piece of independence.
Thank you for this. I am a nurse and a social worker who worked with Parkinsons patients for years and therefore I have seen the results of dementia in all its challenging ways. Not looking forward to my future or to the worries and challenges my family will probably face. I would like to be of benefit to others who too are facing such challenges. It would be very uplifting to be able to help others and join others in dealing with the unwelcomed invader of our mind
Dear Susan,
Thank you so much for your comment. I strongly advise getting involved in advocacy and clinical trials. Depending on where you live, there may be a chapter of the Alzheimers Association near you. I speak on panels of people with Alzheimer’s and caregivers multiple times per year. One of my favorite panels is speaking to local medical students about AD. I have also spoken at national conferences sponsored by the Alzheimer’s Association. I would also suggest looking into joining the Early Stage Advisory Group of the Alzheimer’s Association. The people in this group provide national advocacy including media appearances. https://www.alz.org/about/leadership/early-stage-advisory-group. Depending on the stage of your AD, you may be an excellent candidate for a clinical trial. There is increasing need for subjects with early stage disease to test new drug candidates. Although being in a trial may not help you directly, I found the experience to be very rewarding because I felt that I was making a contribution to finding an effective drug for slow progression of AD. Finally, getting involved in advocacy and trials can be therapeutic. It is for me. The Alzheimer’s Association has a webpage that will help you find trials recruiting in your area. https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/about-clinical-trials A more comprehensive list of trials can be found at https://clinicaltrials.gov, although this website can be more difficult to navigate.
Best of luck.
Dan
Thank you for this. I am a nurse and a social worker who worked with Parkinsons patients for years and therefore I have seen the results of dementia in all its challenging ways. Not looking forward to my future or to the worries and challenges my family will probably face. I would like to be of benefit to others who too are facing such challenges. It would be very uplifting to be able to help others and join others in dealing with the unwelcomed invader of our mind