A neurologist shares his journey with Alzheimer's disease
It was 2006 when Dr Daniel Gibbs first noticed he was losing his sense of smell.
But it wasn't what he didn't smell that tipped him off that something might be wrong.
It was what he did smell: perfume, mixed with baked bread – 'The same thing, every time,' he said.
The neurologist in Portland, Oregon, United States, knew this was an olfactory hallucination.
And that meant something wasn't working properly in his brain.
'I attributed it to getting older, which is a common cause of decreased ability to smell,' he said.
But Dr Gibbs was just 57 – not so old that he should be losing his sense of anything.
'I also knew losing your sense of smell was an early sign of Parkinson's disease, so I thought it might be that.'
It wasn't.
Dr Gibbs was experiencing an early symptom of Alzheimer's disease.
But it would be another six years before he knew it.
He has since written a book about his experience, which was turned into a documentary.
He also keeps a regular blog to help people understand what it's like to live with Alzheimer's.
These days, he spends a lot of his time learning and talking about how to slow progression of the disease – something he's been trying to do since he got his diagnosis more than a decade ago.
Dr Gibbs and his wife, Lois Seed, discussed what he's learned about Alzheimer's dementia and how he navigates the condition for The Experts Say , an American Heart Association News series in which specialists explain how they apply their professional knowledge to their own lives.
Their remarks have been edited in the below Q&A. When did you realise your symptoms were due to Alzheimer's disease?
Dr Gibbs: In 2012, Lois was doing a genealogical project, so we did some genetic testing.
Mine came back showing I had two copies of APOE4, a gene known to influence the risk of developing Alzheimer's disease, which totally gobsmacked me.
Having two copies means it is almost certain to eventually cause Alzheimer's.
I had no measurable cognitive impairment at that time.
I was in charge of the neurology resident training programme at Oregon Health and Science University in Portland, and I was seeing patients in the clinic, so it was a very busy year for me.
Even though it was difficult, I was still able to get all the balls to balance in the air. What did you do once you knew your genetic risk for Alzheimer's?
Dr Gibbs: The first thing I did was to go to one of my colleagues and have some cognitive testing done.
It was essentially normal with the caveat that all of my cognitive domains were in the 90th percentile except verbal memory, which was in the 50th percentile.
So there was a strong hint that there was some incipient loss of function of verbal memory.
With that in hand, I went to my department chair and explained the situation.
I had no impairment, but did not feel it was safe for me to continue to practice.
I retired in 2013.
Seed: You also went looking for studies you could join, because it's a big deal to see people before they experience symptoms.
Dr Gibbs: That's right, I went to the University of California in San Francisco, because they have a ton of studies there.
The first study I was involved with was a longitudinal neuroimaging study.
I had PET (positron emission tomography) scans of abnormal amyloid and PET scans for tau proteins – two protein clusters in the brain that play a role in the development of Alzheimer's disease.
And I had cognitive testing.
They loved having me down there because they rarely have people with as early a stage of disease as I showed up with.
About a year later, I joined a clinical trial for an anti-amyloid antibody drug that is now approved by the US Food and Drug Administration (FDA) to treat early Alzheimer's disease. What else did you learn about how to slow progression of the disease?
Dr Gibbs: This is not rocket science.
The sort of things that are good preventive behaviour for brain disease are also good for preventing heart and vascular disease.
There are evidence-based lifestyle changes that include: Getting daily aerobic exercise
Eating a Mediterranean-style diet, such as the MIND diet
Getting mentally-stimulating activity
Staying socially engaged
Getting at least seven hours of sleep nightly, and
Getting good control of any cerebrovascular risk factors, such as diabetes, high blood pressure, high cholesterol, obesity and smoking.
What's good for the heart is good for the brain!
Dr Gibbs notes that it is difficult to know what to expect as his Alzheimer's progresses as previously, most people with the disease were only living three to five years after the diagnosis as they were being diagnosed late. How do you put this knowledge into practice?
Dr Gibbs: Walking is just built into my day.
I do it with my dog, Jack, an 11-year-old English cocker spaniel who is about to age out.
He can't keep up with 10,000 steps as easily any more, so I take some walks by myself.
We live in the hills, so I'm getting very good aerobic exercise, short of running.
I used to go to the gym, but that stopped at the start of the Covid-19 pandemic.
I also have a short workout at home.
The first thing I do is I use resistance bands, which is a strength exercise.
That takes about 15 minutes, and then I do tai chi pretty religiously, something I started six months ago.
I can clearly see that it helps my balance, but I can't see if it helps my brain, which is continuing to do more poorly.
And thanks to Lois, I've been eating a healthy diet, really forever.
Seed: I didn't have control over those french fries you were eating.
Dr Gibbs: I don't eat red meat any more.
I closely follow the MIND diet, which is essentially the Mediterranean diet with more berries and nuts.
It includes a heavy focus on fruits and vegetables, especially green leafy vegetables, beans, nuts, whole grains, seafood, lean poultry, and uses olive oil to cook.
I'm quite happy with it.
ALSO READ: What is MIND, the diet that may help protect against Alzheimer's disease?
Because I lost my sense of smell, which is totally gone now, I have virtually no taste either.
I eat the same thing for lunch and breakfast every day. I enjoy it.
I make a sandwich on whole wheat bread that has tuna salad and garbanzo beans, avocado and arugula to get the dark leafy greens.
Then some grapes or bananas, and half a dark chocolate bar.
Breakfast is homemade granola, and I add cranberries or blueberries.
I throw walnuts in as well.
Dinner is whatever Lois picks that I can eat.
I stopped drinking alcohol.
There's no safe amount of alcohol if you are on this trajectory.
So I got rid of it, but I used to love red wine. Do you know what to expect as the disease progresses?
Dr Gibbs: That's a difficult question to answer.
In the old days, when people got a diagnosis of Alzheimer's, they were only living three to five years after that because we made the diagnosis so late.
There's less information out there about people who have known they have the disease for a long time and how they will do going forward.
Seed: There's a lot of confusion and misconception because there are different types of dementia.
Alzheimer's tends to progress more slowly.
The early stage can last 20 years.
Here we are 13 years after his diagnosis and Dan's really doing well.
I'm a little more of a caregiver than I was a few years ago, but not by much.
He dresses himself and monitors medications, and people who talk to him casually wouldn't even know.
We've been at that plateau for quite some time. How would you describe the stage you're at right now?
Dr Gibbs: Right now, I have mild Alzheimer's dementia.
To say you have dementia is to say you are having trouble managing your personal affairs.
I'm just at a stage now where I can't balance a chequebook.
And as things go along, I will have more problems with memory and the ability to recognise people and remember their names.
I've lost my train of thought.
Seed: You were talking about what stage you're at.
Dr Gibbs: When I'm not remembering where I am, then I will have severe dementia.
There are memories I have going back through my whole life.
They tend to be events that are emotionally-laden.
I'm terrible with names.
I know my immediate family members. My neighbours, I forget their names.
Lois is taking over the things I can't manage any more, like the financial part of our lives, anything that involves planning ahead, scheduling, calendars, remembering all the family stuff, managing the household.
She also goes with me when I have a talk to give.
Seed: He gives talks on Alzheimer's, but almost every time that Dan is getting ready to speak to a group, he gets frustrated and says, 'This is the last time I'm doing this,' because getting his thoughts together is challenging.
He writes out notes.
Most of the talks he gives now are screening events for the film with question-and-answer sessions.
Dr Gibbs: It works well if Lois is there to find ...
Seed: Words.
Dr Gibbs: That makes it easier. – By Laura Williamson/American Heart Association News/Tribune News Service
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Star
3 hours ago
- The Star
A neurologist shares his journey with Alzheimer's disease
It was 2006 when Dr Daniel Gibbs first noticed he was losing his sense of smell. But it wasn't what he didn't smell that tipped him off that something might be wrong. It was what he did smell: perfume, mixed with baked bread – 'The same thing, every time,' he said. The neurologist in Portland, Oregon, United States, knew this was an olfactory hallucination. And that meant something wasn't working properly in his brain. 'I attributed it to getting older, which is a common cause of decreased ability to smell,' he said. But Dr Gibbs was just 57 – not so old that he should be losing his sense of anything. 'I also knew losing your sense of smell was an early sign of Parkinson's disease, so I thought it might be that.' It wasn't. Dr Gibbs was experiencing an early symptom of Alzheimer's disease. But it would be another six years before he knew it. He has since written a book about his experience, which was turned into a documentary. He also keeps a regular blog to help people understand what it's like to live with Alzheimer's. These days, he spends a lot of his time learning and talking about how to slow progression of the disease – something he's been trying to do since he got his diagnosis more than a decade ago. Dr Gibbs and his wife, Lois Seed, discussed what he's learned about Alzheimer's dementia and how he navigates the condition for The Experts Say , an American Heart Association News series in which specialists explain how they apply their professional knowledge to their own lives. Their remarks have been edited in the below Q&A. When did you realise your symptoms were due to Alzheimer's disease? Dr Gibbs: In 2012, Lois was doing a genealogical project, so we did some genetic testing. Mine came back showing I had two copies of APOE4, a gene known to influence the risk of developing Alzheimer's disease, which totally gobsmacked me. Having two copies means it is almost certain to eventually cause Alzheimer's. I had no measurable cognitive impairment at that time. I was in charge of the neurology resident training programme at Oregon Health and Science University in Portland, and I was seeing patients in the clinic, so it was a very busy year for me. Even though it was difficult, I was still able to get all the balls to balance in the air. What did you do once you knew your genetic risk for Alzheimer's? Dr Gibbs: The first thing I did was to go to one of my colleagues and have some cognitive testing done. It was essentially normal with the caveat that all of my cognitive domains were in the 90th percentile except verbal memory, which was in the 50th percentile. So there was a strong hint that there was some incipient loss of function of verbal memory. With that in hand, I went to my department chair and explained the situation. I had no impairment, but did not feel it was safe for me to continue to practice. I retired in 2013. Seed: You also went looking for studies you could join, because it's a big deal to see people before they experience symptoms. Dr Gibbs: That's right, I went to the University of California in San Francisco, because they have a ton of studies there. The first study I was involved with was a longitudinal neuroimaging study. I had PET (positron emission tomography) scans of abnormal amyloid and PET scans for tau proteins – two protein clusters in the brain that play a role in the development of Alzheimer's disease. And I had cognitive testing. They loved having me down there because they rarely have people with as early a stage of disease as I showed up with. About a year later, I joined a clinical trial for an anti-amyloid antibody drug that is now approved by the US Food and Drug Administration (FDA) to treat early Alzheimer's disease. What else did you learn about how to slow progression of the disease? Dr Gibbs: This is not rocket science. The sort of things that are good preventive behaviour for brain disease are also good for preventing heart and vascular disease. There are evidence-based lifestyle changes that include: Getting daily aerobic exercise Eating a Mediterranean-style diet, such as the MIND diet Getting mentally-stimulating activity Staying socially engaged Getting at least seven hours of sleep nightly, and Getting good control of any cerebrovascular risk factors, such as diabetes, high blood pressure, high cholesterol, obesity and smoking. What's good for the heart is good for the brain! Dr Gibbs notes that it is difficult to know what to expect as his Alzheimer's progresses as previously, most people with the disease were only living three to five years after the diagnosis as they were being diagnosed late. How do you put this knowledge into practice? Dr Gibbs: Walking is just built into my day. I do it with my dog, Jack, an 11-year-old English cocker spaniel who is about to age out. He can't keep up with 10,000 steps as easily any more, so I take some walks by myself. We live in the hills, so I'm getting very good aerobic exercise, short of running. I used to go to the gym, but that stopped at the start of the Covid-19 pandemic. I also have a short workout at home. The first thing I do is I use resistance bands, which is a strength exercise. That takes about 15 minutes, and then I do tai chi pretty religiously, something I started six months ago. I can clearly see that it helps my balance, but I can't see if it helps my brain, which is continuing to do more poorly. And thanks to Lois, I've been eating a healthy diet, really forever. Seed: I didn't have control over those french fries you were eating. Dr Gibbs: I don't eat red meat any more. I closely follow the MIND diet, which is essentially the Mediterranean diet with more berries and nuts. It includes a heavy focus on fruits and vegetables, especially green leafy vegetables, beans, nuts, whole grains, seafood, lean poultry, and uses olive oil to cook. I'm quite happy with it. ALSO READ: What is MIND, the diet that may help protect against Alzheimer's disease? Because I lost my sense of smell, which is totally gone now, I have virtually no taste either. I eat the same thing for lunch and breakfast every day. I enjoy it. I make a sandwich on whole wheat bread that has tuna salad and garbanzo beans, avocado and arugula to get the dark leafy greens. Then some grapes or bananas, and half a dark chocolate bar. Breakfast is homemade granola, and I add cranberries or blueberries. I throw walnuts in as well. Dinner is whatever Lois picks that I can eat. I stopped drinking alcohol. There's no safe amount of alcohol if you are on this trajectory. So I got rid of it, but I used to love red wine. Do you know what to expect as the disease progresses? Dr Gibbs: That's a difficult question to answer. In the old days, when people got a diagnosis of Alzheimer's, they were only living three to five years after that because we made the diagnosis so late. There's less information out there about people who have known they have the disease for a long time and how they will do going forward. Seed: There's a lot of confusion and misconception because there are different types of dementia. Alzheimer's tends to progress more slowly. The early stage can last 20 years. Here we are 13 years after his diagnosis and Dan's really doing well. I'm a little more of a caregiver than I was a few years ago, but not by much. He dresses himself and monitors medications, and people who talk to him casually wouldn't even know. We've been at that plateau for quite some time. How would you describe the stage you're at right now? Dr Gibbs: Right now, I have mild Alzheimer's dementia. To say you have dementia is to say you are having trouble managing your personal affairs. I'm just at a stage now where I can't balance a chequebook. And as things go along, I will have more problems with memory and the ability to recognise people and remember their names. I've lost my train of thought. Seed: You were talking about what stage you're at. Dr Gibbs: When I'm not remembering where I am, then I will have severe dementia. There are memories I have going back through my whole life. They tend to be events that are emotionally-laden. I'm terrible with names. I know my immediate family members. My neighbours, I forget their names. Lois is taking over the things I can't manage any more, like the financial part of our lives, anything that involves planning ahead, scheduling, calendars, remembering all the family stuff, managing the household. She also goes with me when I have a talk to give. Seed: He gives talks on Alzheimer's, but almost every time that Dan is getting ready to speak to a group, he gets frustrated and says, 'This is the last time I'm doing this,' because getting his thoughts together is challenging. He writes out notes. Most of the talks he gives now are screening events for the film with question-and-answer sessions. Dr Gibbs: It works well if Lois is there to find ... Seed: Words. Dr Gibbs: That makes it easier. – By Laura Williamson/American Heart Association News/Tribune News Service
The Star
19-06-2025
- The Star
Local authority has duty of care to the elderly
IN reference to the article 'Elder abuse: spot the warning signs' by Dr Tay Hui Sian (The Star, June 18), and the proposed Senior Citizens Bill aimed at enhancing protection for Malaysia's ageing population, I would like to share my experience as a caregiver to my 80-year-old mother. I have been my mother's sole carer since she was diagnosed with Alzheimer's disease five years ago. My sibling does not provide any financial or moral support.
The Star
19-06-2025
- The Star
Faced with a terminal illness themselves, doctors prefer assisted dying
When it comes to advanced cancer or Alzheimer's disease, over half of doctors would consider assisted dying for themselves, but preferences seem to vary according to their jurisdiction's legislation on euthanasia, reveal the results of an international survey, published online in the Journal of Medical Ethics . And most say they would prefer symptom relief rather than life sustaining treatment for their own end of life care, indicate the responses. Previously published research suggests that doctors' views on their own end of life care inform their clinical practice, and that their perceptions of their patients' treatment wishes are influenced by their own preferences, note the researchers. But most of the studies on physicians' preferences for end of life practices are outdated and/or narrow in focus, added to which little is known about whether doctors would consider assisted dying for themselves, and whether this might be influenced by national or state legislation on the practice, point out the researchers. Survey in five countries To shed more light on these issues, the researchers surveyed doctors in eight jurisdictions with differing laws and attitudes to assisted dying: Belgium; Italy; Canada; the states of Oregon, Wisconsin, and Georgia in the United States; and the states of Victoria and Queensland in Australia. Physician-assisted suicide law entered the statute book in Oregon in 1997, while Death with Dignity legislation has been introduced in Wisconsin numerous times over the past 20 years but remains illegal. It is also illegal in Georgia which is one of the most religious states in the US. In Canada, both physician-assisted suicide and euthanasia have been permitted since 2016. In Belgium, assisted dying has been legal since 2002, but remains illegal in Italy, one of the most religious countries in Europe. The Australian state of Victoria implemented assisted dying legislation in June 2019. In Queensland, assisted dying legislation was passed in 2021, but had not yet come into force when the data for this study were collected (May 2022–February 2023). Two hypothetical situations were included to probe doctors' views on end of life care: advanced cancer and Alzheimer's disease. Respondents were asked the extent to which they would consider various end of life practices for themselves. These included cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feeding, intensified alleviation of symptoms, palliative sedation, the use of available drugs to end life, physician-assisted suicide, and euthanasia. Responses were sought from family doctors (GPs), palliative care doctors, and other medical specialists highly likely to treat patients at the end of their life, such as cardiologists, emergency medicine doctors, oncologists, neurologists, and intensive care specialists. What's a good option? Of the 1,408 survey responses received, 1,157 were included in the final analysis. These showed that doctors rarely considered life sustaining practices a (very) good option in cancer and Alzheimer's, respectively: CPR 0.5% and 0.2%; mechanical ventilation 0.8% and 0.3%; tube feeding 3.5% and 3.8%. Most (94% and 91%, respectively) considered intensifying symptom relief a good or very good option, while 59% and 50%, respectively, considered palliative sedation a good or very good option. Respondents who considered palliative sedation for Alzheimer's disease as a good or very good option ranged from just over 39% in Georgia to just over 66% in Italy. About half of respondents considered euthanasia a (very) good option: just over 54% and 51.5%, respectively, for cancer and Alzheimer's disease. The proportion of those considering euthanasia a (very) good option ranged from 38% in Italy to 81% in Belgium (cancer scenario), and almost 37.5% in Georgia, to almost 67.5% in Belgium (Alzheimer's disease scenario). Around one in three (33.5%) respondents said they would consider drugs at their disposal to end their own life (cancer scenario). While sex, age and ethnicity didn't seem to influence doctors' preferences for end of life practices, prevailing legislation in their jurisdiction did. Doctors working in a jurisdiction with a legal option for both euthanasia and physician-assisted suicide were three times as likely to consider euthanasia a (very) good option for cancer and almost twice as likely to consider it a (very) good option for Alzheimer's disease. 'This may be because these physicians are more familiar and comfortable with the practices and have observed positive clinical outcomes. 'It also suggests that macro-level factors heavily impact personal attitudes and preferences, and physicians are likely influenced by what is considered 'normal' practice in their own jurisdiction,' say the researchers. Religious views GPs and other specialists were less likely to consider palliative sedation a good or very good option than palliative care doctors, and they were more likely to consider euthanasia, physician-assisted suicide, and the use of available medication to end their own life a (very) good option. And doctors who weren't religious were more likely to consider physician-assisted suicide or euthanasia a preferable option than those with a strongly held faith: physician-assisted suicide 65% vs 38%; euthanasia 72% vs 40%. Due to the study design and nature of surveys the results can't be considered fully representative, and those doctors with a particular interest in the subject may have been more likely to take part, acknowledge the researchers. While the overall recruitment of respondents was satisfactory in all jurisdictions, GPs were under-represented among the Canadian respondents. But note the researchers: 'Our findings show that across all jurisdictions physicians largely prefer intensified alleviation of symptoms and to avoid life-sustaining techniques like CPR, mechanical ventilation, and tube feeding. 'This finding may also relate to the moral distress some physicians feel about the routine continuation of treatment for their patients at the end of life. 'These findings warrant reflection on current clinical practice since life-prolonging treatment is still widely used for patients,yet is not preferred by physicians for themselves.'
