While we have all heard about dementia and Alzheimer's disease, not many of us know about Lewy Body Dementia or LBD. While it is the second most common form of dementia after Alzheimer's disease, there is still lot of things that remains unknown to many. LBD is a progressive and often misdiagnosed neurological condition that affects approximately 1.4 million Americans. It is also marked by cognitive and motor symptoms that result from abnormal deposits of alpha-synuclein protein in the brain. Despite its prevalence, however, it is often misdiagnosed and leads patients to see an average of three doctors over the course of two years before they are diagnosed correctly.

However, to help you out, we made this guide to navigate you through the early warnings of LBD.

What is Lewy Body Dementia?

It happens when the abnormal protein deposits known as Lewy bodies and then affect neurotransmitters and brain cell functions. It is divided in two forms:

Dementia with Lew bodies: Cognitive symptoms appear either alongside or before movement-related symptoms

Parkinson's disease dementia: Dementia develops in someone with a prior diagnosis of Parkinson's disease

These protein deposits disrupt brain function by interfering with chemical messengers and brain cell connections, leading to cognitive decline, movement issues, and behavioral changes. Recognizing the early symptoms of LBD can be challenging, but timely intervention can significantly improve the quality of life for both patients and caregivers.

What Are The 10 Early Warning Signs of LBD?

Visual Hallucinations: It happens when you see detailed, vivid visual hallucinations which involves people, animals, or objects. It occurs when a person is alert and aware that the hallucinations are not real.

Fluctuating Cognition and Alertness: It happens through dramatic variations in attention, concentration, and mental clarity within short periods. The fluctuations in cognition happen spontaneously, without any external triggers.

REM Sleep Behavior Disorder (RBD): It happens when you act out dreams during REM sleep, including movements such as talking, kicking, or even leaving the bed. It can precede LBD symptoms by years or even decades and make it one of the most reliable early warning signs.

Parkinsonism: Here, the symptoms are similar to Parkinson's disease, such as muscle rigidity, tremor, and bradykinesia, which is slowness of one's movement.

Extreme Sensitivity to Antipsychotic Medicine: You may have severe reaction to antipsychotic drugs, and it could worsen your confusion and sedation.

Unexplained Falls and Fainting: You experience sudden, frequent falls or faint without an obvious cause. This could also occur early in the disease and could be linked to autonomic dysfunction which affects blood pressure regulation.

Visuospatial Difficulties: This happens when you face difficulty judging distances, navigating spaces, or completing visually-based tasks. It also occurs early and could be more prominent than memory issues.

Autonomic Dysfunction: You may face problems with automatic body functions such as blood pressure regulation, temperature control and bladder function.

Depression and Anxiety: You have a persistent low mood, apathy, anxiety, and irritability that could appear before other cognitive symptoms.

Executive Function Problems: You face difficulty with planning, problem-solving, and organizing daily tasks.

Misleading signs are often worse than no signs, you may be working on the symptoms when the disease is already doing damage to your body. When something goes wrong in our body, most of us can catch onto it. However, we almost always tackle the most obvious issue, not knowing there could be something worse going on.

A similar issue happens to a UK-based woman, named, Loise who was suffering with high blood pressure and dismissed it as a symptom of menopause. Soon she found out that it was in fact not menopause that she was going through, rather she had been battling kidney cancer and did not know about it.

Cancer is the leading cause of death worldwide with nearly 10 million deaths in 2020. Cancer is a generic term for many different diseases that affect parts of one's body, according to the World Health Organization. Kidney cancer is the sixth most common cancer in UK adults and 14th most common cancer worldwide. According to Cancer Research UK, the average number of cases reported for kidney cancer in 2017-19 UK was 13,834. It is also more common in the elderly, aged 80-84, and there has been a 92% rise in the incidence rates of kidney cancer since the 1990s.

Misleading Symptoms and Important Warnings

In the Kidney Cancer UK's TikTok page, Louise's highlights the critical importance of recognizing that not all symptoms in middle-aged women are solely due to hormonal changes. In her case, the elevated blood pressure was an indicator of an aggressive form of kidney cancer.

Often, kidney cancer doesn't manifest with clear and distinct symptoms, and it is frequently discovered incidentally during tests conducted for other health concerns. Louise emphasized the challenge of diagnosis, "Symptoms are unfortunately vague, especially for women, as it includes high blood pressure, night sweats, blood in your urine and flank pain. GPs often relate these to menopause symptoms." She strongly advises everyone to "regularly scan your body" and to pay attention to persistent discomfort. She urged, "How long have those niggling pains been there? Get them checked - always better to be safe than sorry!"

What To Expect After The Diagnosis?

Reflecting on her own diagnosis, Louise recounted having "high blood pressure but unseen blood" in her urine. She explained how her cancer was detected, "I was lucky routine bloods picked up an issue with my liver, prompting ultrasound."

Her treatment journey involved significant surgical interventions, "I have now had two major surgeries to remove cancer and my kidney within the last 15 months. I'm three weeks post open surgery and recovering well." The outcome of recent tests brought encouraging news, "The news that all the biopsies came back as not cancer has been amazing."

Currently, Louise is managing side effects from her immunotherapy treatment. Looking ahead, Louise remains realistic but hopeful "My cancer was the most aggressive at grade 4 so there will always be a high chance of it coming back, but medications and research is changing all the time and I have faith that the surveillance scans will help us nip anything untoward in the bud!"

Kidney Cancer Symptoms You Should Look Out For

While kidney cancer often progresses without noticeable symptoms, the NHS indicates that when they do appear, they can include:

• Blood in your pee
• A lump or swelling in your back, under your ribs, or in your neck
• Persistent pain between your ribs and waist
• Unexplained loss of appetite or weight loss
• Persistent fatigue or lack of energy
• A recurring high temperature
• Excessive sweating, particularly at night

Throughout the first week of April, the state of Kentucky witnessed flooding, due to heavy rains, specifically in the Franklin County. The reason being, it is located on the Kentucky River for over 200 years. While such natural disasters can cause distress in terms of physical safety, expert also reveals that such natural disasters could impact one's mental health too.

Natural disasters like Kentucky's recent flooding can have serious impacts on victim's mental health, reveals Christal Badour, associate professor of psychology at the University of Kentucky and a trauma recovery research.

As reported in Weku NPR, the UK psychologist explains that reactions to traumatic events typically fall into short-term and long-term symptoms. These include people feeling overwhelmed, anxiety, and difficulty communicating. While most people eventually recover without lasting effects, some may struggle for a longer duration.

These long-term issues include depression or post-traumatic stress disorder (PTSD). Badour also notes that people who already had a mental health difficulty before the natural disaster could also further feel isolated. Along with that, individuals with fewer financial resources could be at more risk of long-term problems.

Are These Long-term Symptoms Common?

According to a report from Clinical Psychology Review, 20 to 80% of people will experience long-term symptoms after a disaster. These rates could vary depending on the type of disaster one faces. PTSD symptoms often improve after the first year, however, depression and anxiety are more likely to linger.

What Do Other Experts Say?

There have been previous studies too that confirm the same. As per a 2024 study, titled Impact of Natural Disasters on Mental Health: Evidence and Implications, by Eamin Z Heanoy and Norman R Brown, notes: "Natural disasters are large-scale catastrophic events, and they are increasing in frequency and severity. Converging evidence indicates that the mental health consequences of disasters are extensive and are often associated with trauma and the disruption of personal and socioeconomic factors in people’s lives."

However, the study also notes that although most individuals who experience disaster-related traumatic events do not develop mental illnesses, some could experience adverse psychological effects of the disaster.

Another expert, Nomy Levy-Carric, MD, MPhil, writes for Mass General Brigham, which is an institute dedicated to serving the community and enhancing patient care, teaching, and research, notes that natural disaster can indeed leave a lasting impact on individuals, families, and often an entire community.

Levy Carrick notes: "A person’s reaction depends on many factors, including their past experiences, what is happening in their life at that moment, the nature of their exposure, and the support available to them as they rebuild. The sudden loss of control and uncertainty can be overwhelming, making it harder to cope in both the short and long term."

What Are The Types Of Natural Disasters?

• Hurricanes and tropical storms
• Earthquakes
• Tornadoes
• Wildfire
• Floods
• Blizzards and winter storms
• Drought and extreme heat
• Landslides and mudslides

The doctor notes the Psychological First Aid or PFA provides a structured way to support emotional recovery immediately after a disaster.

However, notes Badour, there is still a major gap in treatment. Most disaster relief services only last up to one year.

“After that year has passed, a lot of people feel like there's no one there to help them, especially if you're in a community that was already lacking in mental health support and resources,” she said.

Emily Kramer-Golinkoff, 40, today struggles to take in enough oxygen with each breath. She is living with advances cystic fibrosis, which makes simple activities like walking or showering, exhausting for her. She is one of the 40,000 Americans who are affected and are living with the most common fatal genetic disease in the United States.

As per the National Heart, Lung, and Blood Institute, cystic fibrosis is a genetic condition that changes a protein in the body. The faulty protein then affects the body's cells, tissues, and the glands that make mucus and sweat. Cystic fibrosis cause mucus to become thick and sticky. As a result, it builds up and causes blockages, damages, or infections.

While most are born with this condition and continue to be on the medication throughout, for Kramer-Golinoff's rare genetic mutation cannot be managed by the same medication that help about 90% of cystic fibrosis patients.

"For our friends who have been lifting from the sinking ship, we feel such pure joy. But we just feel so eager and desperate to join them. It is really hard to be in this minority of people left behind," Kramer-Golinoff told the Associated Press (AP).

Rare Mutation And Its Challenges

The gap between patients with common and rare mutations is a growing concern. Advances in genetic science have uncovered the precise causes behind many brutal diseases, offering treatments to some but not all. Patients with rare mutations often face fewer treatment options and a much grimmer outlook.

Market forces contribute to the problem. Drug companies tend to focus on treatments that serve the largest groups of patients. “You need a sufficiently large number of patients in a major market in order for a company to be interested in going forward,” said Dr. Kiran Musunuru, a gene editing expert at the University of Pennsylvania. He described this reality as "mutational discrimination."

Charities, including Emily’s Entourage—a nonprofit co-founded by Kramer-Golinkoff—are working to change this. Their fundraising efforts have helped jump-start gene therapy research that could benefit patients with any mutation. Although these treatments are likely years away, "just to have these therapies in trials provides so much hope," she told the AP.

To Live With Cystic Fibrosis

Kramer-Golinoff was diagnosed with this condition at just six weeks old. “As I’ve gotten older … my CF has gotten worse, despite all my best efforts to delay it,” she shared with the AP. Before her condition worsened, she earned a master’s degree in bioethics from the University of Pennsylvania, traveled, worked, and spent time with friends. But over time, she developed CF-related diabetes and other complications, including frequent infections. Since the pandemic began, she has lived in isolation with her parents in Greater Philadelphia. “CF is a real monster of a disease,” she said.

Meanwhile, newer therapies known as CFTR modulators have dramatically improved life for many cystic fibrosis patients. However, these drugs don't work for those with rare or unknown mutations, often leaving people from underrepresented groups, including Black patients, at a disadvantage.

A Ray Of Hope

One promising solution is developing "mutation agnostic" gene therapies that would work for all patients, regardless of the specific genetic mutation. “There’s a huge push to develop these therapies," said Dr. Garry Cutting of the Johns Hopkins Cystic Fibrosis Center, as reported by AP.

The Cystic Fibrosis Foundation reports that 14 experimental gene therapies are currently in development. Many aim to deliver a healthy copy of the CFTR gene to patients' cells, enabling proper protein function.

Spirovant Sciences, a company partly funded by Emily’s Entourage, is sponsoring one such therapy. The first patient received it in a 53-week clinical trial at Columbia University last November.

Despite her worsening condition—living with 30% lung function, kidney issues, and pulmonary hypertension—Kramer-Golinkoff remains hopeful. “You have to make really conscientious choices … throughout the day on how to use your limited energy,” she told the AP. “We’re incredibly excited about the promise of gene therapies. They can’t come soon enough.”