Archives for July 2020

The Long Term Effects of Covid-19 on the Brain

Jul 28, 2020 by United Brain Association Leave a Comment

COVID-19 moves swiftly, and in some cases is devastating and even deadly. Because this disease is a novel virus, the data, and information on how it impacts our population, is limited but ever-growing. As the world continues to analyze, review, and research the viruses’ symptoms and long term impact, we come closer to important answers about the disease. With more cases diagnosed every day, scientific experts, immunologists, and medical professionals worldwide are frantically working to find treatments for those affected with the hope that someday a vaccine will be available.

Newly emerging data points to the potential for some unfortunate long term issues for those suffering from a COVID-19 infection. For those who suffer minimal symptoms, the long term effects may not be understood for quite some time. Unfortunately, the long term effects of COVID-19 on the brain may mean some very serious risks for individuals diagnosed with the virus. In one of our previous blogs, we discussed how COVID-19 affects the brain. At the time, some researchers witnessed neurological symptoms in some patients diagnosed with the disease. Now, several months later, researchers have found that not only do some patients display severe neurological symptoms that coincide with respiratory symptoms, but some patients showed only neurological symptoms upon diagnoses. These researchers discovered that neurological symptoms may impact more individuals than previously thought, changing the landscape for treatment and faster diagnoses moving forward.

The Impact of Inflammation in the Brain Due to COVID-19

In a recent study, researchers examined the emerging spectrum of COVID-19 neurology. In this study, preliminary data indicated that a severe COVID-19 infection can be associated with neurological and neuropsychiatric illness. Further, a high incidence of acute disseminated encephalomyelitis (ADEM) was observed in several infected patients; inflammation of the brain was widespread throughout the study group. ADEM is a rare condition typically observed in children who’ve contracted a viral infection. An alarming increase in adult patients with ADEM was seen throughout the progression of this research study.

brain damage and COVID-19 — Brain damage and COVID-19 are more closely related than previously thought. With many patients experiencing inflammation in the brain, several neurological complications have been observed in the field and during research studies.

While these symptoms resulting from brain inflammation were found in patients diagnosed with the disease, the study found that COVID-19 may not be directly attacking the brain. This suggests that brain and neurological damage may be caused by the immune response the body has to the disease’s attack on the respiratory system. Once the disease has been contracted, complications for patients can include the following:

Transient encephalopathies
Encephalitis
Delirium
Brain inflammation
Stroke
Nerve damage
Acute disseminated encephalomyelitis

Dr. Michael Zandi of the UCL Queen Square Institute of Neurology and University College London Hospitals NHS Foundation Trust said: “We should be vigilant and look out for these complications in people who have had Covid-19. Whether we will see an epidemic on a large scale of brain damage linked to the pandemic – perhaps similar to the encephalitis lethargica outbreak in the 1920s and 1930s after the 1918 influenza pandemic – remains to be seen.”

The Potential Long Term Effects of COVID-19 on the Brain

Inflammation in the brain can cause a wide range of symptoms and complications. Some of these complications are short term while many others may have long term, life-changing effects for those infected. If you or anyone you know are experiencing neurological symptoms without respiratory symptoms, be sure to notify your medical professional. Resulting damage to neurons and other neurological structures may lead tolong term effects including the following:

Cognitive delay or degeneration
Mood changes
Speech impairment
Memory loss
Epilepsy
Delirium
Dementia-related disorders
Nerve damage

While this data is alarming in a time where our daily routines and normal way of life have been turned upside down, it’s promising when it comes to treatments and patient care management. While researchers and experts continue to study how this virus works, the answers to questions regarding diagnoses, treatment plans, and quicker more effective recoveries are getting clearer. We aren’t out of the woods yet, but with our greatest minds at work studying COVID-19 and its effects on the brain and body, we’re getting there. Stay healthy, stay safe, and stay confident that our experts are well on their way to finding a cure.

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What it’s Like to Raise a Child With Mental Illness

Jul 20, 2020 by United Brain Association Leave a Comment

Being a parent is one of the most rewarding, yet challenging roles an individual can have in life. For all the love, joy, and satisfaction that children can bring, there can be bumps in the road that prove difficult, especially when faced with raising a child with mental illness.

The issue of mental health has become part of the national conversation over the past few years. According to research conducted by the National Alliance on Mental Illness (NAMI), one in six U.S. youth aged 6-17 experience a mental health disorder each year. It’s also estimated that two-thirds of this younger demographic are not receiving the help they need.

What Does all This Mean for Parents Raising Our Next Generation?

Thankfully due to increased awareness, more information and research, an increase in available resources, and continued dialogue about the prevalence of mental illness in our culture, parents are more equipped to handle the challenges that accompany their child’s diagnosis.

A Look at Mental Illness Among Young People in the U.S.

According to NAMI, here are a few more statistics for young people and mental illness in America:

● 17% of youth (6-17 years) experience a mental health disorder

● 51% of youth (6-17) with a mental health condition receive treatment in a given year

● 50% of all lifetime mental illness begins by age 14, and 75% by age 24

● Suicide is the 2nd leading cause of death among people aged 10-34

● 70.4% of youth in the juvenile justice system have a diagnosed mental illness

A wide variety of different conditions are recognized as mental illnesses, however, the most common include:

● Attention Deficit Hyperactivity Disorder (ADHD)

● Affective (mood) disorders

● Anxiety disorders

● Disruptive behavior disorders

● Eating disorders

● Elimination disorders

● Schizophrenia

● Tic disorders

It is not uncommon for a child to exhibit comorbidity; the occurrence of multiple conditions at the same time.

The Challenges Parents Face When Raising a Child With Mental Illness

From considerations about medication and determining a treatment plan to the social concerns and even backlash, raising a child with a mental illness comes with a unique set of challenges. This video showcases two families and their experiences living with ADHD and Tourette Syndrome:

A study published in the Journal of Child and Family Studies (Mazur, 2017) highlights these common frustrations faced by mothers and fathers parenting a child with mental illness.

● Helplessness

● Needing parenting support groups and advice about coping with their child’s behaviors and emotions

● Struggling to deal with unwanted input from strangers

● The safety and effectiveness of medication plus getting their child to take the medication

● Unpredictability in how and when symptoms will flare

● High levels of stress in the overall parenting experience

● Impatience

● Communication barriers that fuel frustrations

● Anger

● Shame because of their child’s behavior in public

Dorothy O’Donnell, who’s daughter was diagnosed with bipolar disorder at age five says, “Sadie is in a much happier place today — she has friends and many passions. Yet just when I think I’ve got everything figured out and we’re in for smooth sailing ahead, things change again. A long streak of stability will be disrupted for reasons neither I nor her treatment team can always explain. And I know we’re likely to hit more bumps in the road as she grows and matures. The jury is mixed about how kids with mental disorders like bipolar disorder and ADHD fare as adults. Some get better, others continue to suffer and can even get worse. My learning curve may not be as steep as it once was, but I don’t think it will ever end.”

Tips for Helping Your Child Live with Mental Illness

Says Fletcher Wortmann, author of Triggered: A Memoir of Obsessive-Compulsive Disorder, “In caring for a child with a mental illness, your responsibility is the same as any other parent’s: to support your child, to lift them when they stumble, to guide them away from dangerous roads, to help them until they’re ready to strike out on their own if they can.”

Raising a child with mental illness comes with its unique challenges, but with love, and unconditional support, your child can live a happy and healthy life. Below are a few ways to help your child (and yourself!) should they live with mental illness.

Ensure your child is properly diagnosed and receives appropriate treatment.

In addition to showing your child the love and support they need, it’s imperative you help your child living with mental illness receive a proper and thorough diagnosis followed by a treatment plan by a mental health professional. This is perhaps one of the most difficult parts of the process, as it’s common for a child to exhibit symptoms from multiple conditions. Each illness is different, and thus the symptoms being exhibited can often be misdiagnosed.

Find a mental health professional that you’re comfortable with and trust so you can fully understand your child’s condition and create a treatment plan.

Dr. Bobbi Wegner, a clinical psychologist at Boston Behavioral Medicine says, “Mental health issues often are managed with some combination of medication and therapy, so having a solid team of specialists – from a psychiatrist to a school social worker – is crucial…Therapy is based on connection. At the end of the day, the patient is the consumer. If it’s not working, there are many other people out there who can provide more support.”

Process the diagnosis.

Once your child has been diagnosed, it’s important you understand your response and make sense of your feelings. It’s normal to grieve the life you had imagined for your child before their diagnosis. It’s also normal to feel a range of emotions, such as anger, sadness, confusion or frustration, but the best way you can make your child feel accepted and loved is to process the emotions so that you can fully be there to support them.

Keep lines of communication always open.

Demonstrate your acceptance and care for your child by always taking the time to listen attentively about how they are doing and feeling. Remind them that they are so much more than their mental illness.

Ensure that your home environment is comfortable and friendly for your child.

Attempt to keep your home calm and as stress-free as possible. Perhaps let your child decorate

their room so that it provides a sanctuary for joy. Experts also suggest having structure, organization, and a consistent daily schedule keeps frustration and additional behavioral problems at a minimum.

According to Stephen Wallace, the President and Director of the Center for Adolescent Research and Education (CARE), structure can be crucial to creating a low-stress environment; creating a consistent schedule provides stability and cohesion. “If we constantly change how we respond to kids [with mental health diagnoses], it’ll put them on edge,” Wallace says.

See support for yourself.

Seek comfort and support from other parents who are in a similar situation. Support groups either in your community or online are a fantastic place to vent, share information, and have your frustrations heard in a non-judgemental environment.

Consider getting support for your entire family

A child’s mental illness diagnosis affects the whole family, so family therapy sessions are often recommended as a way of opening lines of communication and helping siblings understand the condition further.

Constantly remind yourself and your child that they are NOT defined by their diagnosis.

Having a mental illness does not define a person, and is only a part of who they are. Focusing on your child’s talents, strengths and other valuable qualities will remind all of you that their mental illness is only one part of their whole identity.

Practice self-care

It’s natural for parents to focus so much on their child that they neglect themselves, however taking care of your own needs is equally asimportant. In doing so, you’re ultimately helping your child as well. Dr. Wegner says, “Modeling good behavior, such as sleeping enough, eating well, exercising often, and seeing your own therapist is setting an important example for your child.”

Your Child, Your Journey

“My message to you is, never give up hope, and never stop encouraging your child to accomplish their own “optimal outcome.” It’s not going to be easy, and you’ll likely have to make compromises—but with your support and love I know your child can build a life, too,” says Wortmann about his experience.

Quite often parents are their own harshest critics. When faced with adversity, it’s easy to second guess your choices or lack confidence in your parenting abilities. Particularly when raising a child with mental illness, remember that like all parents, mistakes are almost always inevitable, but…

Be gentle with yourself.

Forgive yourself.

Life does not always go as planned, however the most important thing you can do is to love, support, and accept your child, and remind yourself that in navigating your child’s journey, you are never alone. If you suspect your child may have a mental illness and are looking for support or resources, please call the NAMI Helpline at 1-800-950-NAMI or visit https://www.nami.org/.

You can click here to learn more about what The United Brain Association is doing by way of research regarding a number of mental illnesses and other neurological diseases. Also be sure to sign up here for important updates and to receive news about current and upcoming research projects!

Lack of Sleep and Dementia – What’s the Connection?

Jul 13, 2020 by United Brain Association Leave a Comment

A healthy night’s sleep benefits us in a variety of ways. Sleep helps our bodies reset, heal, and prepare for the next day. During a healthy sleep cycle, new neural pathways are created to help our brains with memory, cognitive learning, and other important brain functions. For those of us with a healthy functioning body and brain, a good night’s sleep means better physical and cognitive function. Without enough sleep our decision making, stabilized moods and behavior, problem-solving, and many other brain functions are compromised. As we age, our brain functions are impacted by a variety of factors. Diet and physical activity are two of the most important variables when it comes to our brain’s health; as we age, our lifestyle choices may impede healthy function. Researchers have found that lack of sleep and dementia-related diseases and disorders may be more closely linked than previously thought.

In a recent study published in March of 2020, researchers found that individuals who suffered from sleep disorders experienced changes associated with breathing that resulted in increased amyloid beta and tau deposition in brain regions typically involved in Alzheimer’s. What does that mean exactly? Amyloid-beta is a protein that is necessary for healthy brain function. At healthy levels, this protein plays an essential role in the building and repair of neurons and neural pathways in the brain. This single protein aggregates into soluble oligomers, which then combine to form insoluble fibrils and plaques. When these fibrils and plaques accumulate at an unhealthy rate and there isn’t an appropriate clearance of these proteins, it can lead to neurotoxicity, and in turn, can cause neuronal and synaptic damages and even loss. When reviewing the tau protein, abnormal structure or mutations can also be attributed to neurodegenerative losses.

Lack of Sleep and Dementia – An Increased Risk

Experts agree that one of the largest causes of dementia-related disease is abnormal sleep or lack of sleep. The sleep deprived buildup of the amyloid-beta protein leads to the deterioration of brain function and cognitive development when neurons and pathways are compromised. It’s no wonder that unhealthy sleep patterns are found in a majority of people living with dementia disorders; researchers and medical professionals believe these unhealthy sleep behaviors start years, sometimes decades before dementia symptoms are even seen. Sleep is one of the ways our bodies clear this buildup of fibrils and plaques. This means when there’s an unhealthy or broken sleep cycle, our bodies can’t repair and clear the way for healthy neural function.

While unhealthy sleep patterns earlier in life may contribute to an increased risk for dementia-related disorders later in life, it can also mean that those suffering from dementia will most likely experience unhealthy sleep patterns as they are struggling to live with these disorders. The unfortunate pattern seems to be cyclical in nature. This has led researchers to determine that establishing healthy sleep behavior early on is essential to helping stop dementia disorders in their tracks before they have a chance to take hold. Early diagnosis of disorders like Alzheimer’s, and implementing treatments that heavily rely on normalizing sleep behaviors may be the key to stopping the devastating regression.

Sleep Behavior in Dementia Patients

The build-up of proteins in the brain is at least partially to blame for dementia disorder symptoms. It’s not a surprise patients experience trouble with sleep in their later years. Because the build-up of fibrils and plaques affects cognitive function, the symptoms of dementia disorders compound to cause even more issues with brain function later on. This unfortunately means less sleep and less restful sleep only contribute to these symptoms even more. To add to the patient’s unfortunate circumstances, their ever-changing perception of the world around them can cause sundowning and an altered grasp on time.

While degeneration of healthy neurons and cognitive function cannot be reversed, slowing the effects can help them maintain their current quality of life. By helping those suffering from dementia disorders gain quality and consistent amounts of sleep, caretakers and loved ones can help mitigate additional neural damage. Because the world around them is uncertain and in many cases new and scary, dementia patients are at risk for wandering. Lack of sleep in dementia patients can lead to days filled with greater cognitive impairment and mood swings, behavioral changes, and even difficulties with other brain functions.

Patients may experience tiredness throughout the day with an inability to sleep restfully at night. Staying outdoors to encourage melatonin production can help those living with dementia to stay awake until it’s time for bed. Cutting back on fluid intake in the later hours of the day can help with bathroom breaks during the night hours. Creating a restful sleep environment can assist in staying asleep once dementia patients are able to retire for the evening. While these actions may help in small ways, it is still very common for those living with a dementia disorder to continue to have unhealthy sleep behaviors and struggle with getting quality sleep.

To continue to understand the way sleep impacts brain function, especially as it relates to brain disorders, researchers have much left to learn. For more information on how you can help find a cure for a variety of brain disorders by funding research projects through the United Brain Association, click here. If you’d like to get updates on our ongoing and upcoming research projects, sign up for emails with us here. Together we can help find a cure!

Telling Your Brain Story

Jul 3, 2020 by United Brain Association Leave a Comment

The main focus of the United Brain Association is finding cures for brain disorders worldwide. To help support advancements in brain disorder research, we’re striving to raise funding through charity events and fundraisers. A key part of our fundraising efforts consists of raising awareness of the brain disorders that many individuals live with every day. Often, relating to those affected or understanding the hardships of the charitable cause in question is the most important element when donors choose to contribute.

UBA’s efforts are rooted in the cathartic experience of storytelling and humans’ innate desire for explanations. Stories and experiences are born by our curiosity and asking “why.” We are then rewarded with a response that deepens our understanding and even elicits an action on our part. At UBA, asking “why” means telling a story about the hardship, struggle, and triumph of someone impacted by a brain disorder. The benefits of asking “why” are addressed in a research study by Frank C. Keil, where he found that an in-depth explanation assists in high-level thoughts and a broader understanding of the world around us. By providing a platform where individuals living with a brain disorder can tell their story, we hope others will hear them and be motivated to help fund a cure.

For those living with a brain disorder, the hope for a cure may seem distant. By writing down your story, better awareness surrounding your brain disorder can be achieved.

It’s our job to help portray the need for advancements in research and brain science to find a cure. By sharing stories and life experiences from those most impacted with these disorders, we deliver a powerful message that inspires positive change. In helping those affected by brain disorders find a platform to tell their stories, we also bring attention to each disorder independently. By providing a space for caretakers, loved ones, and those living with these disorders, we spread the word and bring much-needed assistance to all of our active and upcoming research projects.

Your Brain Story – Why Telling Your Story is So Important

When speaking to the importance of telling your story, the impact is two-fold. In terms of fundraising efforts, it is necessary to share experiences to help make those unaware understand the need for scientific studies. Another comes in the form of improvements in psychological health. Also known as narrative psychology, writing about important personal experiences has positive effects on mental and physical health. In a study published by Johns Hopkins University, findings reveal that writing serves as a way for individuals to organize complex emotional experiences more clearly. Those who used a higher number of positive-emotion words showed an increase in the use of cognitive words in their storytelling.

From a psychological standpoint, conveying your message through storytelling can be cathartic, validating, and empowering. The biggest and most important benefit of putting your life experiences into words, videos, or any other media platforms is its positive impact on your mental health. Our goal is to encourage those affected by a brain disorder or disease to help us deliver their story to the world by facilitating your storytelling through us. United Brain Association would be honored to be the platform you choose to tell your story. The healing power of narrative psychology alone can help those living with a brain disorder process the events of their life. Your story matters, and we want it to be heard! Help us connect you to others living with brain disorders, caretakers, loved ones, and individuals who will support and lift you up.

In terms of fundraising efforts for research projects, telling your brain story can have an enormous impact on the overall big picture. By telling your story, you give donors and those uninformed about your brain disorder the opportunity to relate, engage, and become more involved. To help generate the necessary awareness of our fundraising efforts, getting people unaffected involved in our cause is key to finding a cure. They become advocates for our cause and help spread awareness, reaching even more people as they share the stories and successes of our members.

We want to give a platform to any and all individuals impacted by brain disorders. Providing a melting pot of caretaker stories, family experiences, and stories from individuals living with these disorders are key to raising awareness. To learn how we can help deliver your message and story to a greater audience, please reach out to us via email at info@unitedbrainassociation.org or by contacting us on our Facebook page. We want to help you tell your brain story and bring awareness and recognition to your disorder. Together, with your help, we will find a cure! Want to sign up for news and updates on current and upcoming research projects? Join our email list by clicking here.