My Personal Story with Alzheimer’s Disease.
As the first part of this short series on Alzheimer’s disease, I share with you my personal story with Alzheimer’s disease and my unlikely path to conducting Alzheimer’s research.
When I was a child, my favourite part of the winter holidays was dinner at my grandmother’s. Grandma Denise was a cheerful woman and an excellent cook. I was impressed at the operation going on in her kitchen, only a few meters away from the dining room. I would hear the clinking and clanking of the kitchen in the background behind the sparkling conversations and the joyful laughs. So much delicious food was being put on the table at the steady rhythm of my grandma’s comings and goings from the kitchen. The festive energy and the fast turnover of the plates prevented me from keeping track of the number of courses we ingested. Denise would only eat a few bites here and there, rushing back to the kitchen, vehemently insisting that she did not want help when anyone offered. She was generous and genuinely wanted the whole family to enjoy their Christmas dinner. When she was done cooking, it was already time for dessert, at which point she would sit down at the table with us, truly satisfied.
The dinner always culminated with her world-famous pineapple dessert, a sort of cake that was covered in so much whipped cream that I would have sworn that I was eating a cloud stuffed with pineapple confit. I never understood by which culinary magic something so soft adopted the defined shape of a cake. This dessert was heavenly, so creamy, so sweet, covered in crunchy sugar crumbs to give it texture. The secret of this dessert was so well-kept and prized that, to this day, my dad holds dearly the old paper on which the recipe is written!
When I was about 13 years old, my grandmother started misremembering a few things. Nothing too important; the self-absorbed young teenager that I was at the time did not even notice. My father, in contrast, had seen Denise go through the many challenges that life had for her. He was well accustomed to the acuity of her mind. My grandmother was in her late sixties at the time, so it was a true cause of concern for him: his mom was not old enough for this amount of forgetfulness, he thought. And he was right…
Inevitably, through my teenage years, the steady decline of my grandmother’s mind got very apparent and extremely sad to see. Her ability to follow conversations was fleeting. When she would intervene by pitching in a few words, we had trouble tracing where her thoughts came from. Soon, she could not participate in cooking Christmas dinner anymore. Things were never the same. Denise was a very proud woman. She seemed resolute to never talk about her illness. She developed compensatory tricks to cover up the incoherent sentences she just uttered, trying to link them back to a previous part of the conversation she remembered. Along with her demise towards dementia, I never heard the word “Alzheimer’s” coming out of her mouth, not even an allusion to the disease that would eventually take her life. Only would we discuss her condition among my nuclear family. Unspoken situations tend to snowball into taboos over time, as though there was tremendous shame in keeping things unsaid when we are not yet ready to talk about them.
She died in 2018, at age 76. I remember going to the palliative care center and looking at her breathing with much difficulty, making hissing sounds at exhalation and gasping sounds at inhalation. These sounds still haunt me to this day. I remember wondering what her subjective experience was at that moment. The day before, I was told, she took a walk outside, and while it was difficult, she was still able to admire the beauty of a tree, to glance at the river close to the palliative center. Sitting next to her bed, I watched her agonize with sorrow. I wondered if she could hear me and make sense of my words. I wondered if she struggled for air as much as she seemed to. I hoped that she was already gone and that her lungs struggling for air was just life trying to hold onto her body. At 21 years old, that night is the only time I have ever seen a person die.
We all react to grief in very different ways. When I was left alone in a room with her dead body, my first feeling was a mix of puzzlement, confusion. How could this amazing woman, who had been so lively throughout my childhood, lose everything within the span of a few years? I remember how we used to take long walks and have serious yet candid conversations when I was a child. I shared a very vivid memory with her. One that she kept on reminding me about even in advanced illness. It was that time when we were sitting at a restaurant and, being the nerd that I am, I asked her to invent math problems that I would solve. In perspective, I see how boring it was for a 60-something to come up with simple problems for an hour, but she did it with heart and patience. And here I was, merely a decade later, staring at her lifeless body.
Talking about math problems, I had trouble understanding the simple arithmetic of aging at that moment. When my body would double in age, at 42, I could still be running marathons. When my body would triple in age, by 63, I would surely have a few health issues, but most probably nothing that affects my quality of life. However, when my body would quadruple in age, all bets were off: I could be long gone, in insufferable conditions or, if I am extremely lucky, quite healthy. Plainly stated, I had trouble to fathom how fast aging seems to strike all of us: why does a machine that works so smoothly for 2 billion heartbeats never reaches its third billionth? How did my grandmother struggle breathing after 500 million flawless breaths? And why do most people’s bodies fail them on almost exactly on the same timeline? My pondering was soon interrupted: I needed to support my dad, who was now an orphan at 49 years old.
As I furthered my education in biomedical research, I was so busy that I did not think too much about my grandmother. But as I was in the last year of my bachelor’s degree, I read a book about aging: Lifespan, by David Sinclair. Something attracted me in that book so much that I asked my research supervisor to research aging. He kindly agreed. Little did I know, the newest aging research in my laboratory was related to neurodegeneration. Now, I am writing my Master’s thesis about the Alzheimer’s Disease research I conducted with my colleague and mentor, Amr Omer. As I finish my thesis, I find myself writing my acknowledgements. It occurred to me that I must acknowledge that the unfortunate trajectory, as tragic as it is for our family, gave me a great sense of purpose. I saw what Alzheimer’s did to her. I saw the swiftness of her disease. And I saw how much it affected so many of her close ones. The reflection I had when I spent a few minutes with her lifeless body is why I was moved so much when I read Lifespan and why I decided to study age-related diseases. In fact,the book clearly stated the answer to my question about the steep descent of the body with age, but the explanation belongs in another blog post.
After reading my story, you might feel pessimistic, anxious or scared. For yourself or for your close ones. By sharing this story with you, my goal is not to scare you but to instill movement. When a situation scares you, I learned that you should take two sequential actions:
1. Identify what can be done about the source of the fear, and use the fear as a motivator to take these actions as early as possible.
2. Learn to live with the remaining fear, which is a useless “overflow” of fear (easier said than done, I know). With the next four blog posts, I’m here to help you with step 1: I will tell you everything you need to know about Alzheimer’s.
In my second post, I will share what I think everyone should know about Alzheimer’s and explain the actionable steps you can take personally. Here are a few examples: We hear some people have Alzheimer’s at 40. Could that be you? How to screen yourself for the risk factors of the disease? And should you get that information or remain blind about it? What life habits are supported by science to delay the onset and slow the progression of AD? How does an AD diagnosis work? Should you take part in experimental treatments? What is the attitude to have towards the disease if you end up having it?
In my third blog post, I will explain what control we have on Alzheimer’s as a society. I will focus on research towards Alzheimer’s drugs and potential preventative approaches we could have, as a society, to stop this disease that affects 25% of people above 85 years old.
In my fourth blog post, I will nerd-out on the biology of Alzheimer’s Disease for the people interested. There is a lot of science drama involved, so it is pretty entertaining. What’s more, seeing how the first ten decades of Alzheimer’s disease research were relatively scarce in discovery, followed by two decades of promising discoveries, is a true beacon of hope for the future of this research field. Plus, understanding the topic more profoundly empowers you as a citizen to advocate for the policymakers to fund Alzheimer’s research that is likely to yield results that bring us closer to a drug that works.
As you will learn in the next post, my grandmother getting the disease early is not good news for my own odds. However, I believe that through well-conducted science and well-informed policy, we could reach a world in which I can serve my grandchildren pineapple dessert well into my 80s!