Meet Dr. Daniel Gibbs – A Dementia Expert Diagnosed with Alzheimer’s Disease- His Story
28 Feb 2024 · 26 min
Dr. Daniel Gibbs, a dementia expert, shares his own Alzheimer's diagnosis and the genetic risk factor APOE4 that contributed to it. He describes his diagnostic tests, treatment with donepezil, and lifestyle changes like aerobic exercise and a Mediterranean diet that he uses to manage the disease.
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Hi everybody. Welcome back to another new episode of The Truth Lies and Alzheimer's Show, and I'm Lisa Skinner, your host. So I found a really fascinating article that I wanted to share with you today. About a doctor who— his name is Dr. Daniel Gibbs, and he was diagnosed with Alzheimer's disease, and he wrote this story for the dailymail.com sharing his story, and I thought it was intriguing enough that I wanted to share it with you today. Now I'm reading it the way he wrote it in the first person. So this is his story about being diagnosed with Alzheimer's disease. He starts off by saying, I'm a dementia expert who spent 25 years caring for patients. Now I've been diagnosed with Alzheimer's myself. This is what I'm doing to slow down the disease. Looking back, my first symptom of Alzheimer's disease occurred in 2006 when I was 55 years old, and I realized that my sense of smell was not as sharp as it had been. At that time, I assumed it was down to aging, but within 5 years, I couldn't smell a thing. I wasn't particularly worried until the year 2012 while doing genealogical research, uh, with his wife Lois. Um, they thought DNA testing would help in filling in some of the missing branches of his ancestral trees. He discovered through that research that he carried 2 copies of the APOE4 allele. This is a variant of the APOE gene and is the most significant genetic risk for Alzheimer's disease. Having 1 copy increases a person's risk by about 3-fold. Carrying 2 copies, like he does, increases a person's risk by 12-fold. Before his diagnosis, Alzheimer's disease was not on his radar at all. He says, both of my parents had died in midlife from cancer, but looking back on a generation or two, There clearly was a family history of dementia. I was stunned by this news. I was 61 and still active, teaching neurology to doctors and medical students and providing care for patients with various neurological problems, including dementia. I traveled to Tanzania every year to teach as well. Now, cognitively, I thought I was doing fine, but I asked a friend who is a dementia specialist to do some testing on me. After my diagnosis, I plunged into the literature to find out what was known about this. I found that there was consistent evidence that regular aerobic exercise can slow progression of the disease by as much as 50%. Plus, the Mediterranean diet, or the variant called the Mediterranean/DASH Intervention of Neurodegenerative Delay, in other words, the MIND diet, with a greater emphasis on berries and strict restrictions on dairy products, has been shown to slow progression by 30 to 50%. I love cheese and I struggled to limit myself to the recommended 1 serving per week. Then last year, I discovered that I'm lactose intolerant. No more cheese or other dairy products for me. Other lifestyle modifications that appear to be beneficial include staying intellectually and socially active. Getting at least 7 hours sleep per night, and controlling cardiovascular risk factors such as high blood pressure, cholesterol levels, obesity, and smoking. Fortunately, I quit smoking when I was 18, and I followed these other guidelines religiously. I think it is making a difference. 2 years after my diagnosis, I volunteered for my first research study, an investigation of a PET scan, P-E-T, that could detect beta amyloid and tau proteins, an MRI scan, and 2 days of cognitive testing. The results showed I had mild cognitive impairment, also known as MCI, which is mild memory loss or other cognitive issues that do not yet interfere with daily activities, including work. There was a moderate amount of beta amyloid throughout my brain and the beginnings of abnormal tau, which are proteins. I think we should be receptive to the idea that the early presymptomatic stage of Alzheimer's is likely to be the most effective time to attack the disease and even stop progression. New medications for Alzheimer's, the ones that have been recently approved by the FDA, may turn out to be more effective if used early during MCI or even before. As a medical student, I had my cholesterol checked. Surprisingly, it was near the upper limit of normal. Too many burgers and fries, my wife told me. I laughed it off. There wasn't much heart disease in the family, and I was in my 20s and felt invincible. As I grew older, my cholesterol levels crept higher, and by the time I was in my 50s, I was taking medications to keep my cholesterol and blood pressure under control. As the years went by, the doses continued to climb. Also, my verbal output was getting worse. I frequently use the wrong words, which may be humorous in a family setting, but it's embarrassing in public. However, writing seems to make world retrieval easier. I think this is because it provides an immediate link to the thoughts you have just that have just come before you. I can literally look back on the page to remind myself what I'm trying to say. I started thinking, will doing brain games and crossword puzzles slow down dementia? The evidence has been conflicting. On paper, one paper from 2014 showed that people who did crossword puzzles were 2.54 years slower to begin cognitive impairment than those who didn't do them at all. Yet most recent studies have shown little, if any, benefit from doing crossword puzzles alone. You'll improve your crossword skills but won't build a bigger Alzheimer's-resistant brain. When I started practicing neurology, there were no medications that mitigated cognitive deterioration in patients with Alzheimer's disease. Then in the 1990s, a new class of medication, acetylcholinesterase inhibitors, emerged. These are thought to work by raising levels of acetylcholine, an important chemical messenger in the brain. The drugs, donezepil and a few others, are about equally effective. A few of my patients had remarkable improvement, but others didn't seem to change much. And for some, the side effects were intolerable. The most common side effects were nausea, cramps, and diarrhea, as well as nightmares and insomnia. Though I found that starting my patients at a very low dose lower than recommended, and slowly increasing it over several months would usually avoid these. When I started taking denazapill myself a few years ago, I went through the usual gastrointestinal upset, but what bothered me the most were the terrible nightmares I experienced. My neurologist said this can usually be avoided by taking the daily dose in the morning. Sure enough, that definitely did the trick. But new drugs can slow down its progression, and the earlier it is spotted, the most effective treatments can be. I'm adapting to changes with the support of my wife, family, and friends. Life is still good, and I expect it to continue being good for many, many years to come. When we were young, the timeline of our lives stretched from our earliest memories to our expectations for the future. As the cognitive impairment of Alzheimer's disease progresses, so that timeline will constrict. I'm not there yet. But for those of us on the Alzheimer's journey, it is important to embrace the moment and not dwell on the frustration of trying to remember the past and plan for the future. Others can help us retrieve old memories. Calendars, lists, and Post-it notes will help us minimize the chaos of our futures. But happiness and peace come from focusing on the moment, whether it's hugging a grandchild, writing in a journal, gardening, or listening to the great music. As the Roman poet Horace put it more than 2,000 years ago, carpe diem, quam minimum credula postero— seize the day and don't worry about tomorrow. That was very, very touching. And a lot of the things that he shared with us in his story, um, have been part of my extensive research and, uh, is supported by the information that I've uncovered as well in terms of diet and exercise and brain activities as, uh, and this was a, a very recent articles. So these are things that all are still found to be true and effective. So the second part of, of the episode today, I want to elaborate for you a little bit about the difference between the normal aging process and forgetfulness and a more serious brain disease that might be developing and how do you tell? Because I get this question a lot. People are very concerned when they start to forget things that they might be developing Alzheimer's disease or related dementia. And you know what? I don't blame you guys at all. Why wouldn't we? There's so much media attention on Alzheimer's disease and other brain diseases that cause dementia these days that when these things begin to happen and we notice them, why wouldn't we be concerned that maybe we're also developing Alzheimer's disease? So let me, let me share with you some of the ways that you can tell if this is just the normal aging process that you're experiencing, if it might be the next step of mild cognitive impairment, or if there's really cause for concern that you might be developing a brain disease like Alzheimer's. So signs of normal aging, mild cognitive impairment, and brain disease such as Alzheimer's. So when was the last time you forgot where you placed your keys or where you set your phone down? I can tell you it happened to me this morning. How about walking into a room and forgetting why you went in there? I've done that a few times. Have you ever been in the middle of a conversation and couldn't for the life of you remember the name of someone you wanted to share a story about? When this happened, did you frantically worry that you might be developing dementia? A lot of people do, according to the National Institute of Aging. Many older adults do worry about their memory, but the things I just mentioned are usually not serious age-related memory problems, but just part of normal aging. According to the Alzheimer's Society, signs of normal aging can look like the following: You become a little more forgetful. Maybe you take a little bit longer to remember things. Maybe you get distracted a little more easily than you used to, or maybe you find it a little more difficult to do several things at once. Don't we call that multitasking? These changes in brain function may definitely be frustrating for us. But may only be a natural part of aging and not necessarily a sign of a developing brain disease like Alzheimer's. People can begin to notice these changes starting as early as in their 40s or 50s. Learning new information and retaining that new information may decline slightly, usually when a person reaches their later 60s, then may experience more notable declines in their 70s and 80s. Now, statistically, approximately 40% of people age 65 and over do have some age-associated memory impairment, but of the 40% who do, only about 1% of them will progress to develop dementia. I find that very encouraging. Additionally, hearing problems may be a culprit behind people missing parts of conversations and may appear to be a memory issue. Studies suggest that treating hearing loss with hearing aids may actually reduce the risk of developing dementia as much as 19%. There definitely has been studies that are showing a correlation between hearing loss and developing dementia, but the way to mitigate that is to wear hearing aids. Now, if it becomes obvious that the onset of short-term memory loss after the age of 65 is consistently noticeable, it may be the early stages of mild cognitive impairment due to Alzheimer's disease. In some people, however, mild cognitive impairment can be caused by several factors, such as a nutrient deficiency, a hormonal balance, but once resolved, can actually be reversed. Not everyone who displays mild cognitive impairment will progress into dementia caused by a brain disease such as Alzheimer's disease. You can progress from the normal aging forgetfulness process to mild cognitive impairment and just stay there, which really isn't severe enough to impact your activities of daily living and, and your ability to, you know, live a normal life. Some of them do progress into Alzheimer's disease and related dementia, and others just stay in the space of mild cognitive impairment. Mild cognitive impairment is commonly defined as a subtle but measurable memory disorder more severe than with normal aging decline, but does not show other symptoms of dementia, such as impaired judgment or reasoning. Because the changes caused by mild cognitive impairment are not severe enough to affect daily life, a person with mild cognitive impairment does not meet the diagnostic guidelines for dementia. People with mild cognitive impairment, or MCI, do have an increased risk of eventually developing Alzheimer's disease or another type of dementia, but not everybody does. And they can also remain stable or eventually get better which is not the case with dementia. Symptoms of mild cognitive impairment may include forgetting appointments or social events, misplacing household items like car keys, etc., having greater difficulty finding the correct words than your peers of the same age, having trouble remembering events, instructions, or even conversations. Occasionally repeating yourself. Occasionally missing a payment on a bill. With dementia, however, these things happen much more frequently, and the cognitive issues interfere with one's ability to function on a daily basis. The progression of symptoms generally corresponds to the underlying Nerve cell degeneration, usually beginning with the cells that attack and destroy learning and memory, and gradually moves to the cells that control all aspects of thinking, judgment, and behavior. The damage eventually spreads to the cells that control our movements. Alzheimer's disease and other dementia affect people in different ways. And each person will experience symptoms or progress through the stages differently. And the stages can also overlap, making it very difficult to definitively place a person into a particular stage. People also vary in the length of time spent in any one of these stages and in which stage the signs and symptoms appear. However, the progression always worsens with time due to an increase in brain decay. These are some of the significant differences between dementia and MCI and the normal aging process. Some, so some of the early and more common symptoms of Alzheimer's disease include confusion, memory loss. All of a sudden, your attention span is short. Struggles with problem-solving and decision-making skills. Agitation, restlessness, and anxiety show up. Difficult finding the right words when speaking or writing and easily getting lost. So because Alzheimer's disease is caused by misshapen protein structures in the brain called beta amyloid plaques and tau tangles, over time, the malformations kill the brain cells they're in, limiting cognitive function. Because Alzheimer's disease is defined by these microscopic changes in the brain, Doctors can't say for certain whether a person has Alzheimer's disease without first performing an autopsy. And then the late stage of dementia will progress into one of near total dependence and inactivity. Memory disturbances become very serious, and the physical signs and symptoms become more obvious and may include, but not limited to, becoming unaware of time and place, having difficulty recognizing relatives and friends, having an increased need for assisted self-care. Some may develop a difficulty walking and then experiencing behavioral changes that may escalate and include aggression. So these are all things to be mindful of, and hopefully this helps that if next time you can't remember where you put your phone down, that it might not be because you're developing Alzheimer's disease. It might just be the normal aging process or even mild cognitive impairment. So that's what I have for you today. I always appreciate you listening, and I hope that you find this information very valuable, and maybe you can sleep a little better tonight knowing that what you fear is going on in your brain might not be anything to lose sleep over at all. So I'll see you back next week for another new episode of The Truth Lies in Alzheimer's Show. I'm your host, Lisa Skinner, and I hope you all have a safe and wonderful week, and we'll see you next week. Thanks again for being here. Bye-bye.
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