News

Explaining Brain Injury to Your Child

Chapter Four, The Caregiver’s Journey on tbi.cemmlibrary.org

 

Having a parent with a TBI can be frightening for a child who looks to them to provide strength and safety.
A parent with TBI may no longer act the same as they did before the injury. They may be angry, depressed, or uncertain. They may not be able to speak or walk, and they may not be able to do all the same things they did before they were injured (for example, go to work, pick up the kids from school, play on the playground). You can help your children by explaining TBI in a way that they can understand, or you can ask a healthcare provider to talk with your children.

As a result of the changes caused by the injury, the special parent-child bond that existed previously has probably changed, at least to some degree.

Children may be confused and upset about what is going on. This could be due to worry about a parent’s condition or concerns about changes in their parents’ relationship. It could also be due to financial strains, or simply adjusting to the new “normal” (in other words, the new way of life following the TBI). Be sure to communicate with your child that they are not to blame for the TBI – many children will assume they somehow contributed to the injury and will carry some sense of responsibility for it. If your child appears to be anxious or depressed for a long time, or they begin taking on risky behaviors, seek professional help.

It is important to recognize that your children are grieving, just as you are – they are grieving the loss of the parent’s former “self” and the abrupt changes that have taken place. They may withdraw from social activities with peers, have mood swings, become withdrawn or disruptive, do poorly in school, and show other behavioral problems.

Children also need time and space to be kids. Allow them time to think, play, talk, or just hang out – don’t smother them with too much information or attention over the injury – but be sensitive to their questions and concerns. Build new family routines, and keep an eye out for signs that your child is not coping well.

Some children may need to take on some caregiving tasks for the parent or for younger children in the family. Children who care for parents or other relatives may experience conflict over the reversal of roles between parent and child. Others will find it helpful for them to play a supportive role.

Make sure any tasks that your child takes on to help around the house or with caregiving activities – household chores or meal preparation, for example – are suitable for their age. Strive as much as possible to find other adults to help you, rather than relying on your children to play a major caregiving role.


 
How Can I Tell My Child about TBI?

It is difficult to explain TBI to a child. Yet it is vital to tell your child what is going on. Some adults try to protect children from the truth because they think they are too young to understand. Children of almost any age are aware that something is wrong and they want to know what is happening.

Communicate in an age-appropriate way what has happened to the service member or veteran with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.

How you tell your child about TBI depends on the age of the child. Here are some suggestions for how to explain TBI to a child:

  • Use Language a Child can Understand: The brain is similar to the command station of a spaceship. If a meteorite hit the command station, the crew would not be able to control what the spaceship does. If the brain is hurt, it may send out the wrong signals to the body or no signals at all. A person with TBI may have a hard time walking, talking, hearing, or seeing.
  • The brain is the body’s computer. When it gets injured, it doesn’t “boot up” properly, runs slower, has less memory, and may not perform all of its normal functions.
  • A cut may take a few days to heal, and a broken bone will usually heal and be as good as new in a few weeks or months. Getting better after a brain injury can take several months or even years, and sometimes the person may not get 100 percent better.
  • Even though the person with the injury may look the same, they may still be injured. These injuries might include having a hard time paying attention or remembering what you told them. They may get tired easily and need to sleep more than usual. They may say or do things that seem strange or embarrassing. They may get angry and shout for no apparent reason.
  • Explaining Anger Changes: Many people with a TBI develop anger as a direct effect of the damage to the brain. In other words, the parts of the brain that normally stop angry flare-ups and feelings have been damaged and don’t do their job as well. The parent with TBI may be mad because they can’t do the things they used to do. Their feelings may be hurt because others treat them differently than before the injury.
  •  
    Brain injury changes people. These changes can be confusing. Try to remember that the changes you see are caused by the brain injury. You can still love and care about the person regardless of the brain injury.
     

    CLICK HERE to read the original article
     

     

    The Benefits of Smiling

    By Jennifer, spindpals.com, July 16, 2020

     
    How many times have you smiled today?  If you’re an average adult, you’ll smile 20 times today.  If you’re a really happy adult, you’ll smile 40-50 times today.  That sounds decent, until you compare it to the number of smiles a child expresses each day: 400!
     
    Why do we smile and how does it affect our brain?  Here’s the sequence of events:

  • You feel happy
  • Your brain sends a signal to cranial nerve VII, which then triggers the face’s zygomaticus major muscle (the one responsible for lifting the corners of your mouth) and the obicularis occuli muscle (the one around your eyes)
  • You smile
  • A positive feedback loop is initiated and a signal is sent back to your brain, releasing dopamine and serotonin, and reinforcing positive emotions
  •  
    Other benefits of smiling:

  • It lowers the stress hormones of cortisol and adrenaline
  • It boosts the immune system by increasing gamma interferon (a protein that fights viruses), B-cells and T-cells (the white blood cells needed to create antibodies)
  • What about fake smiles?  It turns out that fake/”social” smiling enough can actually bias your brain to thinking you are genuinely happy due to the positive feedback loop.

    —>FUN FACT:  A single smile can stimulate neurotransmitters as much as 2000 bars of chocolate, but without the sugar crash and stomach ache!
     
    When you next pass someone on the street, flash your pearly whites.  You’ll make them feel good and cheer yourself up as well.

    “Sometimes your joy is the source of your smile, but sometimes your smile can be the source of your joy” ~Thich Nhat Hanh

    CLICK HERE to read the original article
     

     

    My Tech Tools for TBI

     

    By Alexander Rostron, August 25, 2020

     
    After my traumatic brain injury (TBI), I suffered from a large drop in mental capacity.  I could not remain focused for even moderate lengths of time and forgot the majority of the content that I had just consumed.  

    Not only that, whenever I attempted focused work, I was so mentally and physically tired after doing something as simple as reading that I needed to take a nap.  The limited runs of mental stamina prompted me to explore different tools and systems for assistance.

    Below are three apps I find useful:

    Notability App (iOS, Mac)

    I use Notability to write notes (handwritten and typed), take photos and record audio from class and during medical appointments.  My favorite feature is the ability to capture audio while handwriting notes and highlighting key terms with the Apple Pencil.  

    While reviewing my class notes to study for a test, I realized that the audio recorded more information than I was able to put down during the lecture.  For example, a professor gives an example of the definition they had just explained.  I was only able to write out the definition, before the professor started on a different part of the lesson.  The audio recording left me more information than my writing speed could handle.

    Google Calendar

    I use Google Calendar to track the scheduled appointments I have.  My favorite part of that utility is the option of adding details to each event, such as the address, a notification to remind me an hour before, and a space for a custom description.  Here is where I list important details about what needs to be brought and prepared for the appointment.  I have used it to track things I need to bring and do before each appointment.

    Forest Pomodoro Timer (iOS, Mac)

    I use Forest to practice the Pomodoro technique for working on tasks that take intense focus, while giving scheduled breaks for a mental recovery.  It is a timer that stops if you use your phone.  This is to practice only studying for a set amount of time, with an alert after as a reminder to physically get up from where I’m studying and take a very short break.  Studies have shown that after 25 minutes of intense mental focus, human ability to retain information gets severely diminished.  This is a tool I consistently use when I am completing a task with a lot of paperwork and takes a lot of time and mental energy, such as writing essays or personal record-keeping.

    These 3 tools act as such a critical part of my life post-TBI.  The Notability app catches all of the information that I cannot record at the time of, and helps support my memories with the tools it gives to type, write, and emphasize certain information.  The Google Calendar system helps give me a clear layout of the events in the week ahead of me and contains a place for each small and important detail.  The Forest app helps me pace myself through large blocks of work with small checkpoint breaks to ensure that I don’t drain my mental battery and a chance to reflect about what info I had just absorbed.

    These are the systems that assist me with the mental stamina and memory recall struggles specific to my traumatic brain injury. If you have tools that you would like to add to this list, I would love to hear about what you have used to support your life post-TBI. If you would like to hear more about one of these tools please let me know.  If you have any comments, questions, or feedback please feel free to reach out to me at arroston@gmail.com.

    CLICK HERE to read the original article
     

     

    Alcohol and Brain Injury

    After a TBI or Stroke the brain can become more sensitive to the effects of alcohol. This can cause cognitive problems that impact memory, mobility, and speech. It can also cause someone to feel fatigued and unwell. What can be expected after your recovery?

     

    By Fred at Spindpals.com, July 18, 2020

     

    Whether we’re on holiday abroad or enjoying the Christmas festivities, an alcoholic drink tends to not be too far from reach for many of us.

    But after a brain injury, the body’s tolerance to alcohol is greatly reduced, and many survivors find that they are no longer able to enjoy alcohol in the same way as they did before their injury. The reduced tolerance to alcohol means that many effects of brain injury are exacerbated after drinking, such as memory problems, mobility issues, speech and fatigue.

    Remember you should always discuss with your medical practitioner your particular condition to understand what the impact would be on yourself. Never take alcohol without their approval and guidance.

    AUTHOR: “It is clear that there is an uneasy relationship between alcohol and brain injury. Survivors are often faced with the challenge of balancing a desire to enjoy the social life they had before they sustained their injury with the acceptance that alcohol now affects them in a different way.”

    We asked brain injury survivors to tell us about how their relationship with alcohol has changed.

    For some, the enjoyment of drinking is simply outweighed by the effects caused.

    “I don’t drink anymore,” said Louise Fry. “I couldn’t drink to start with because of meds, but now? It just hits me too hard.”

    Janet Creamer agreed: “Drinking is now a no-no. Just one alcoholic drink does awful things to my brain. It feels like I’ve drunk way too much and I get that spaced out feeling.”

    Others, like Giles Philip Hudson, have found that being advised by doctors to no longer drink has actually been a blessing in disguise.

    AUTHOR: “After sustaining my brain injury and spending over four months in hospital, doctors advised me not to drink alcohol. During this time I found I no longer needed to drink alcohol to make me feel good or enjoy myself. I certainly don’t need the headaches it causes.”
     

    Enjoy a drink at home with family and friends

    Naturally, many people want to continue to be able to enjoy a drink every now and then, particularly at social gatherings. But what if going to the bar is too daunting a prospect?

    Home drinking is increasingly popular For some, staying in allows them to enjoy a drink without some of the challenges of being in a busy, crowded and noisy pub or bar.

    “Since my disability I do not feel comfortable going into a bar as I may find it hard to use the restrooms,” said one member of the community, “so my drinking is done in my home.”

    Patricia Nugent on Facebook agreed: “We tend to drink at home so it is easier and less stressful to moderate intake,” she said.

    If you are choosing to drink at home, it’s important you monitor your intake carefully.
    Here’s some useful advice for home drinkers:

      1. Keep track of how many units you’re consuming
      2. Use smaller glasses
      3. Use proper spirit measures to avoid inadvertently pouring yourself a double or triple measure
      4. Eat as you drink
      5. Invest in a good bottle stop to make that bottle of wine last longer

    Out and about

    For others, however, a good night out is still a must! If that’s the case, then planning ahead can be the key to the success of the evening.

    “I don’t go out much, once every two months,” said Michelle Richardson. “But it’s lovely to have some drinks and let my hair down and forget how challenging recovery is for a while.

    AUTHOR: “I do have to prepare for a night out by having an afternoon snooze.”

    If you do want to enjoy a night out on the town with friends, here are some more top tips:

      ▪ Don’t drink on an empty stomach and check your medication allows you to drink
      ▪ Make sure your friends know about your brain injury, lowered alcohol tolerance levels, and any other issues such as an intolerance to noise
      ▪ Drink water between alcoholic drinks and avoid getting into rounds

    Alcohol-free alternatives

    Of course, not drinking alcohol doesn’t mean you can’t still go out to pubs and bars.

    “My husband has been told he can’t drink alcohol,” said Amanda Hopkins. “So, as he is a real ale drinker, we made a pact to still go to country location but to just check out ‘alcohol-free’ ales and to become connoisseurs of the growing ‘alcohol-free’ ranges that are now appearing from many microbreweries.

    “It won’t be quite the same but we hope it will be a bit of fun tasting them.”

    AUTHOR: Kathy M agreed: “I sometimes have a non-alcoholic beer shandy so I feel like I am having a pint and I’ve discovered things like elderflower cordial with soda. There’s nothing wrong with ordering a fancy coffee or mocktail either.”

    Drinking alcohol after Stroke

      ▪ Drinking too much alcohol contributes to a number of risk factors for stroke, including high blood pressure.
      ▪ Alcohol can interfere with the medicine you take to reduce stroke risk.
      ▪ Your doctor can advise when it is safe for you to start drinking alcohol again and how much alcohol it is safe for you to drink.
      ▪ Healthy men and women should have no more than two standard drinks a day, and no more than four standard drinks on any one occasion.

    Alcohol and stroke risk

    Drinking too much alcohol contributes to a number of risk factors for stroke. If you have already had a stroke or transient ischaemic attack (TIA), you can help reduce your risk by only drinking a safe amount.

    High blood pressure is the biggest risk factor for stroke, and drinking too much raises your blood pressure. Atrial fibrillation, which is a type of irregular heartbeat, can be triggered by too much alcohol.

    Diabetes and being overweight also increase your risk of having a stroke. Both of are linked to alcohol consumption.

    Alcoholic drinks are also high in calories with little nutritional value. Reducing the amount you drink will support you to maintain a healthy weight.

    Hemorrhagic stroke and alcohol

    A hemorrhagic stroke is caused by a break in the wall of a blood vessel in the brain. If you have had a hemorrhagic stroke, you must not drink alcohol for at least three weeks after your stroke. Ask your doctor when it is safe to start drinking alcohol again.

    Drinking alcohol and your medication

    Alcohol could interfere with the medicine you take particularly, blood-thinning medicine such as Warfarin. Discuss with your doctor about whether it is safe to drink alcohol while taking any medicines.

    Consuming alcohol safely if your doctor clears you to

    The Guidelines for Alcohol Consumption gives advice about safe amounts of alcohol.

    AUTHOR: Remember, the Guidelines are for healthy people. Talk to your doctor about whether it is safe for you to drink at all, and whether the amounts in the Guidelines are safe for you.

    The Guidelines state that healthy men and women should have no more than two standard drinks on any day and if you go out, no more than four standard drinks on any one occasion.

      ▪ For spirits with 40 % ABV, a standard drink is 30 mls (1.5 fl oz)
      ▪ A 285 ml (10 fl oz) glass of 3.5% ABV beer is about 1 standard drink.
      ▪ 100 ml (3.5 fl oz) of wine or champagne is approximately one standard drink, however this varies between types. Keep in mind most glasses of wine served in restaurants and bars are more than 100 ml (3.5 fl oz).
      ▪ Always check the label on the bottle to find out how many standard drinks you are having.
      If you find you are tempted to go over your safe limits learn strategies to help you keep to them.

    Strategies to reduce your drinking

    Write down how many drinks you have to see how much and how often you drink.
    If you find that you are drinking more than is safe, try these tips:

      ▪ Drink water when you are thirsty rather than alcohol.
      ▪ Sip your drink slowly. Put down the glass after each mouthful.
      ▪ At social occasions, make every second drink a non-alcoholic beverage. Choose something like a sparkling water rather than a sugary drink.
      ▪ Try low-alcohol alternatives such as light beer.
      ▪ Opt out of ‘shouts’. Drink at your own pace. If you cannot avoid buying a round, get yourself a non-alcoholic drink.
      ▪ Avoid salty snacks such as potato chips or peanuts. These make you thirsty and more inclined to drink quickly.
      ▪ Set goals such as not drinking alone and have at least two days without alcohol each week.
      ▪ Do not drink on an empty stomach. A full stomach slows the absorption of alcohol

    Brain Injury affects different people in different ways. There is no one size fits all. For some, their relationship with alcohol will be over. For others, a moderate consumption can be tolerated. Complete your recovery and then discuss with your medical practitioner your options. Do not make any decisions without consulting them first.

    This post is shared from the Stroke Association AU and Headway UK websites
     
    CLICK HERE to read the original article
     

    Computer Vision Syndrome

     

    Caring for Your Vision with So Much Screen-Time!

    Avoid “Computer Vision Syndrome”

    By Carl Hillier, OD FCOVD

     
    Most of us are engaged in “screen time” more than ever before—using Zoom/Skype/FaceTime as a tele-therapy platform. For many, this can be very successful, but also potentially very visually stressful.

    We recommend the following guidelines to help minimize the following problems associated with excess screen-time—collectively known as “Computer Vision Syndrome”:

    • Cognitive Fatigue
    • Visual Fatigue/Eye Strain
    • Dry Eye Symptoms
    • Blurred Distance Vision
    • Headache
    • Neck and Shoulder Pain
    • Poor-Quality Sleep

     

    Things to do to alleviate the symptoms above:

    • Take scheduled breaks from screen time at least every 30 minutes, walking away from the computer for at least 2 minutes.
    • During these 2 minutes, stand or sit in a very relaxed way and rotate your body without moving your feet—try to look behind you one way, then back to the other way as far as you are able.
    • Check each eye individually during these 2-minute breaks to ensure you are not losing distance vision from either eye.
    • Acquire optical quality lenses that deflect the harmful blue light that emanates from screens. Your optometrist can get the proper protective lenses for you.
    • Research-proven nutritional supplementation solutions:
      • Lutein (10 mg), Zeaxanthin (2 mg) and Mesozeaxanthin (10 mg)—to improve visual performance, sleep quality and decrease adverse physical symptoms
      • Omega-3—Minimum EPA: 400 mg; Minimum DHA: 960 mg
    • Stop screen time 2 hours before going to sleep.
    • Get outside as much as possible!

    If you would like more advice on how to establish a strong visual foundation for the demands of online learning, just let us know. We can provide activities for you to do off-line that will help you maintain good vision while you are on-line!

    Carl G. Hillier, OD FCOVD
    Melissa C. Hillier, OD FCOVD
    San Diego Center For Vision Care
    SanDiegoCenterForVisionCare.com

    CLICK HERE to download the original article
     

     

    What’s the difference between all the different head scans (X-Ray, CT, MRI, MRA, PET scan)? And what do they show in the head?

    Michael S. Tehrani, M.D.Follow Founder & CEO at MedWell Medical

     
    Ever wonder what’s the difference between all the different head scans (xray, CT, MRI, MRA, PET scan) and what they show in the head. Well wonder no more. The Dr. T easy to understand version…

    X-Ray: shows bone/skull only. Does not show the brain. Best used to detect if there are bone fractures.

    CT: a quick test. Shows brain but detail not great. Shows if any larger bleed, stroke, lesions, or masses.

    MRI: a long test. Shows brain and detail is great. Shows smaller bleeds, stroke, lesions, or masses.

    MRA:
    shows the flow of blood in the vasculature system of the brain. If there is vessel narrowing or blockage this test would show it.

    PET scan: shows how active different parts of the brain is. An active brain uses sugar as energy and pet scan detects how much sugar is being used by lighting up and turning different colors. The more sugar being used the more that area will light up and be different in colors. Cancer cells use the most sugar so cancer cells light up the most. PET scan is used to see if there are cancer cells. (Cancer cells replicate at a very fast and uncontrolled rate hence use a lot of sugar to allow that replication hence why they light up so much).

    CLICK HERE to download the original article
     

     

    Top 10 Volunteer Opportunities in San Diego in 2019

    September 25, 2019, by Mary at greatnonprofits.org

     
    Want to volunteer or intern at a great San Diego nonprofit? Whether you’re new to the city and want to learn about its charities, trying to change up your routine with some local charity work, or just want to volunteer or intern at a neighborhood nonprofit, everyone knows that the best way to find the right place for you is from the people who’ve been there!

    Here’s a list of volunteers’ and interns’ favorite San Diego charities. Every nonprofit on this list has earned an overall score of 4 or greater out of 5 on GreatNonprofits.org. If your favorite San Diego nonprofit or volunteer gig is missing, find it on GreatNonprofits.org, write a positive review, and show your co-volunteers how to start adding reviews and get it on the list!

    Mayan Families
    We just returned after 10 days working with Mayan Families. I, along with my daughter and nephew, have been volunteering with this great nonprofit for the past four years. The focus of our volunteering has been to raise money for the purpose of installing stoves for indigenous families living around Lake Atitlán. The beauty of this particular program, and most of the programs run by Mayan Families, is the direct and immediate impact they have on the recipients. We love the fact that we see where the money we raised is going and that we literally have a hand in helping change the lives of people who truly need the help.

    “We continue to be impressed with Mayan Families’ dedication to its motto to ‘Educate, Feed, Shelter, Feed’ these wonderful people around Lake Atitlán.” –David Kujan

    Sepsis Alliance
    “As a small nonprofit, they do a tremendous job of spreading awareness about sepsis and as a result have reached millions of people to educate them about the signs and symptoms of this condition, albeit with their limited staff and budget.

    “I feel confident in asking others for donations for this organization, as I have seen firsthand that they use their funds very effectively.” –Lynn S1

    Labrador Rescuers
    “Lab Rescue goes over and above to help match the right family with the right lab.

    They have a great foster program that provides information about the traits of the labs to help find the right fit. We can improve our program by increasing the number of people helping to promote intake, fostering, adoptions, and fundraising.” –mobileUser381273

    San Diego Dance Theatre
    “The Dance Fierce program has served as an incredible creative outlet for students from all backgrounds and has united these students through the art of dance. Students who participate in this program are more well-rounded, expressive, and balanced. They pride themselves on their hard work and are more motivated every day through their experiences.” –Mmctighe

    San Diego Brain Injury Foundation
    “I ended up doing one of my internships at SDBIF. Never have I seen so few accomplish so much for so many on so little resources.

    I can only imagine how much more dynamic and influential in helping those with brain injuries, myself included, this organization could be if they had additional funding. The ‘F’ signifying foundation should be changed to ‘Family’—as this organization helps us all to feel this way during very trying times that can last for years.” –Michael Murphy

    College Area Pregnancy Services
    “During the almost 14 years that I volunteered at CAPS as a counselor I witnessed firsthand the impact this place has on every client who comes in. Women from all ages come burdened with fear, confusion, and uncertainty. Volunteers and staff at CAPS are able to provide a safe, nonjudgmental place for these women where they find not only help and resources, but also a caring and personal environment. A comment I most often heard after a counseling appointment was ‘This place is so nice, I felt comfortable and welcomed here.’

    “CAPS will be forever in my heart, and love to tell others about it.” –Ana_39

    The League of Amazing Programmers
    “The League has done an incredible job exposing young people to the vast world of computers in a way that is fun and interactive!

    As a volunteer, I have seen kids develop confidence and problem-solving prowess before my very eyes, all while developing skills they will use for the rest of their lives!” –Mike D3

    Mind Treasures
    “I’ve had the privilege of volunteering with this wonderful organization for many years. Their program is changing the lives of the children one student and school at the time. Children are becoming aware of their hidden potentials and learning how to use these resources in their personal, family, and community finances.” –MT Volunteer 1

    The Seany Foundation
    “The passion that you see from those involved in this foundation is infectious. From the founders, board members, organizers, and volunteers you see an intense commitment to carry on the fight for whom this foundation is in honor of, Sean Robins. The rapidly accelerating success in awareness and donations is a testament to their effectiveness as an organization and their tremendous potential.” –Keenan 27

    Voice of the Bride Ministries
    “Voice of the Bride is a beautiful expression of community love and hard work. I’m constantly amazed at how far they manage to stretch each dollar and how many people they touch—be it by feeding families, helping community, or simply being a force of goodness in an area. They truly love the poor and give to the needy.” –FreckldFlower

    Read the original article online
     

     

    New Rules to Protect Your Kid’s Noggin

    May 25, 2019, Parents Magazine

     
    Children bonk their head all the time when they’re wrestling with siblings, playing soccer, and just being clumsy-and it’s easy to worry that a bump could turn into something bigger. After all, more than 800,000 kids in the U.S. get a concussion every year. For the first time, the Centers for Disease Control and Prevention has released specific “return to learn” and “return to play” guidelines for head injuries, based on 25 years of research. One doctor shares the big takeaways.

    ALWAYS take any injury beyond a light head bump seiously. A concussion occurs when a bump, blow, or jolt to the head or a hit to the body makes the brain bounce or twist in the skull. This creates chemical changes and can sometimes damage brain cells. “If your child complains of a headache or dizziness, is nauseous or vomiting, appears dazed, or sleeps more or less than usual, it’s time to get a doctor’s evaluation,” says Dennis Cardone, D.O., associate professor of orthopedic surgery and pediatrics and co-director of the NYU Langone Concussion Center. Even toddlers can get a concussion from a tumble, so look for changes in their behavior such as not wanting to nurse or eat or losing interest in toys.

    If diagnosed with a concussion, your child will need menlal rest, says Dr. Cardone. That means taking a break from all activities for two to three days, and after that, starting with light aerobic activity. He may need to attend school for only half the day or do little to no homework (he won’t mind this rule!). However, he shouldn’t return to any sports or strenuous activities that have a high risk of falling or contact (think: field hockey, gymnastics, climbing a tree) until he’s been cleared by his doctor, which should be within a few weeks.

    Download the original article PDF
     


    Ann C. McKee, chief of neuropathology at the VA Boston Healthcare System, which houses the world’s largest brain bank devoted to CTE research, examines a brain earlier this month.(Photo: Robert Deutsch, USA TODAY)

    Researchers close in on CTE diagnosis in living, one brain at a time

    By Nancy Armour, August 24, 2018, USA TODAY

    BOSTON – Submerged in chemicals in the stainless-steel bowl is the key to life and, researchers hope, death.

    It’s a human brain. That of a man who played college football in the 1950s, to be exact. His family donated his brain to get answers for themselves, but what’s found could lead to more answers about chronic traumatic encephalopathy, the devastating neurodegenerative disease linked to concussions and repetitive head trauma from football and other contact sports.

    “Our main objective, our overarching goal, is to help the people who are living. To be able to diagnose this disease during life,” says Ann McKee, chief of neuropathology at the VA Boston Healthcare System, which houses the world’s largest brain bank devoted to CTE research.

    “If we can diagnose it, we can monitor it and test therapies to see if they’re effective in treating this disease,” says McKee, director of the CTE Center at Boston University’s School of Medicine. “It would really dramatically increase our ability to point out genetic susceptibilities for this. We’d be able to look at how much is too much in certain individuals or certain positions in certain sports.”

    As another football season begins, it inevitably leads to questions and fears about head trauma and its long-term damage. How many hits are too many? What can parents do to protect their children or players do to protect themselves? Are athletes in certain sports more susceptible?

    Most important, which athletes will develop CTE – or Parkinson’s or ALS (amyotrophic lateral sclerosis) – and why?

    The answers will come from brains such as the one McKee dissected this month, when USA TODAY Sports toured the brain bank.

    The brain bank has more than 500 brains, most of them donated by former athletes or their families who suspected CTE because of mood swings, behavioral changes, depression or dementia. Of those brains, more than 360 had CTE, McKee says.

    SEARCHING FOR CLUES

    The arrival of a brain sets two teams in motion. One set of clinicians talks to the family to find out more about the donors. Did they play any sports? If so, what and for how long? When did they start? Did they experience any other kind of head trauma, say from an automobile accident, domestic violence or military service? Did they have drug or alcohol problems? How did their mental health change, and when did that occur?

    Separately, and usually without any information about the person whose brain it was, McKee and her researchers study the brain. It is cut in half, and one half is stored in a minus-80-degree freezer, so it will be available for molecular, genetic and biochemical studies.

    The other half is then photographed and sectioned. After removing the brain stem, McKee uses what looks like a bread knife to cut slices of the brain about a quarter-inch thick.


    Ann C. McKee slices the brain into segments about a quarter-inch thick as part of in-depth, time consuming research on the organ. McKee hopes the work will unlock answers to CTE. (Photo: Robert Deutsch, USA TODAY)
     
    Simply by looking at the brain, McKee can tell a few things. The brain of this man, who was in his 80s when he died, has shrunk, noticeably smaller than it should be for a man who once played football. The folds of the brain, normally pressed tightly against one another, are loose and have gaps between them, some large enough that the tip of a finger could be inserted.

    She points to the ventricles, chambers in the middle of his brain that are filled with fluid during life. They should be small, but these are “just gigantic.”

    “As the brain shrinks, they expand. What this indicates is there’s been enormous shrinkage of the brain,” McKee says. “Those are huge.”

    The hippocampus, a section in the middle of the brain that controls memory, is small but not abnormally so for a man in his 80s. If it was, that could be an indication of Alzheimer’s. But a membrane that runs from one side of the brain to the other, normally thick like a rubber band, has shrunk. In some spots, it’s almost invisible.

    “This is looking more like frontal predominant atrophy, and that could mean CTE because Alzheimer’s almost always affects the hippocampus,” McKee says. “At this point, I always want to know, ‘What is it? Let’s look under the microscope.’ But you have to wait.”

    CTE can’t be seen by the naked eye, and it takes at least three weeks to prepare slides of the brain tissue.


     
    CTE is caused by tau, a protein in the brain released as a result of head trauma. When tau clumps together, it damages brain cells and can change the brain’s function. Though tau causes Alzheimer’s, McKee says, the tau that causes CTE looks distinctly different.

    Under a microscope, it can be seen in telltale brown spots.

    “CTE is very focal. In fact, in its early stages, it’s in the crevices. It just piles up. And that’s around blood vessels,” McKee says. “That’s very different. Alzheimer’s never does that.”

    As CTE progresses, those clusters or clumps of tau will spread, and the disease will become more severe. That’s why, in the early stages of disease, stages 1 and 2, the symptoms usually relate to behavioral changes or mood swings. In stages 3 and 4, the disease is exhibited in memory loss.

    “We think there may be more pathology in the young players than we’re appreciating just with the tau protein,” McKee says. “We think there’s maybe white matter structural changes or maybe inflammatory changes that are responsible for that loss of control, which is so difficult for the individuals.”

    ‘EVERY CASE IS A MYSTERY’

    Once the slides have been examined, the pathologists and clinicians will come together for a conference. At this point, neither knows what the other does. The clinicians detail what they’ve learned about the brain donor’s history and suggest a diagnosis. The pathologists will then say whether the brain tissue confirms it.

    “Every case is a mystery,” McKee says. “It’s not the same way you usually solve a mystery. I solve the pathology first, and then you go back and find out (the history). And then you try and put the two together.”

    Some former players and their families once were reluctant to donate their brains, but that stigma largely has disappeared. So much so that McKee said brains arrive at the Boston bank almost every day.

    Though that lengthens the time it takes to reach a definitive diagnosis, it will shorten the time before a living diagnosis can be found. In addition to the work done in her lab, McKee shares tissue samples with researchers around the world.

    “What we want to do is establish the risk, educate people, educate parents, educate players,” McKee says. “So if they’re unwilling to risk that future self, if they’re unwilling to take that risk because it’s too high for them personally, we want to give them enough data so they can make a very sound and wise decision.”

    When that day comes, it will change sports forever.

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    TIAA-CREF Tuition Financing, Inc. also Oversees Treasurer’s ScholarShare Program

    August 8, 2018 | Contact:Press Office, news@sto.ca.gov, 916-653-2995

    SACRAMENTO – California State Treasurer John Chiang today announced the selection of TIAA-CREF Tuition Financing, Inc. (TFI) to administer the California Achieving a Better Life Experience (CalABLE) Program.

    “TFI’s selection means we’re one step closer to turning on CalABLE’s ‘Open for Business’ sign,” said State Treasurer John Chiang. “TFI’s expertise and oversight are a welcome help in reaching Californian’s with disabilities and their families, who will soon be able to save up to $15,000 a year, tax free, without jeopardizing their federal and state assistance.”

    Currently, savings for individuals receiving Supplemental Security Income (SSI) or other public benefits have a $2,000 resource limit. Once a beneficiary is determined to have more than this $2,000, their benefits may be suspended until savings fall below that level. CalABLE — the state’s version of the federal ABLE Act — allows people with disabilities to establish a tax-advantaged savings account in which they can save up to $15,000 per year, up to a total of $100,000, without jeopardizing their ability to continue to receive existing public benefits. Earnings into CalABLE accounts are not subject to federal income tax or California state income tax, so long as the earnings are spent on a broad range of disability related expenses.

    “We are excited to see the CalABLE program move forward in providing people with disabilities the opportunity to build their futures,” added Christina Mills, executive director of the California Foundation for Independent Living Centers. “There are very few ways for people in our community to save money without penalties. Opening a CalABLE account will be a game-changer for individuals with disabilities, and parents of children with disabilities, who have been limited by programs and services that prevent us from saving and becoming more independent.”

    TFI was selected to manage the new CalABLE program by a vote on Tuesday by the CalABLE Act Board, based on the firm’s low costs, proposed investment portfolio that offered simple choices for enrollees with clear preferences, and the simplicity of its program for those new to such a savings program.
    TFI is a national leader in providing program management services for college savings plans and currently serves as the manager for California’s successful ScholarShare 529 college savings program.

    Any individual whose disability occurred before age 26 is eligible to open a CalABLE account so long as they receive benefits based on disability, such as SSI or Social Security Disability Insurance, or if they have disability certification (including a copy of a diagnosis signed by a physician).

    CalABLE participants can:
    • Make automatic contributions from a bank account
    • Invite family and friends to contribute directly to an account
    • Deposit online or by check
    • Select from easy to understand investment options

    Chiang added, “No one should have to fear losing their disability benefits because they decided to save wisely and invest in their future. This program will help ensure no Californian with a disability will be penalized for thinking ahead.”
    CalABLE will launch by the end of 2018.

    For more information about CalABLE visit https://www.treasurer.ca.gov/able or call 916-653-1728.

    For more news, please follow the Treasurer on Twitter at @CalTreasurer, and on Facebook at California State Treasurer’s Office

    Serving the Brain Injury Community Since 1983