January 2020 Newsletter

Hello 2020. The sheer numbers sound like perfect vision. I hope the year generates clarity as we approach life and situations.

A new year, a new decade, new goals, and a new word to motivate, brings renewed hope for improvements. I like to pick one word to direct my thoughts and efforts in reaching my goals throughout the year. Last year my chosen word was “simplify”. I strived to eliminate physical clutter from my life by getting rid of items I no longer need or use. I attempted to relieve mental clutter by accepting situations I can’t change. I worked at being realistic and straightforward about what I could accomplish without being overwhelmed. New projects I took on in a simple, less complicated way. I tried to shorten my to do lists because it’s impossible to accomplish everything I want to. I made mistakes and learned from most of them. Overall, I believe I made progress at simplifying my life. Fortunately, I have a lifetime to further my improvements.

This year my chosen word is “focus”. It seems like the ideal word for 2020, since the digits themselves state that I should be seeing more clearly this year. I will do my best to concentrate my efforts and thoughts on the people and things that matter the most to me. Writing down what I need to do and when it needs to be done will help keep my focus centered on what’s most important. Judging by experience, it won’t be a flawless year, but I’ll give my best shot at enhancing my focus.

The effects of brain injury, epilepsy and caregiving is a focal point in our life. I gain much support and help through meeting with others in like situations. I’m grateful for friendships made in these groups and their encouragement helps me meet challenges. The experience and knowledge shared in these gatherings is beneficial and uplifting.

The purpose of this newsletter is to share information about organizations. In case it’s impossible for you to get out, or you don’t live in this area, I’ve also included links to useful and inspiring websites.

If you have an activity, announcements or other information you’d like shared in this newsletter, please add them in the comments or email Barbara@UnitingCaregivers.com.

Have you picked one word to motivate and direct your efforts through this new year? If so, I’d like to hear it and know why you chose it.


January 2, 2020Utah Valley Aphasia Choir meets at 6-6:45pm on the 1st Thursday of the month, prior to the support group at the BYU Speech and Language Clinic. It’s for all brain injury, and stroke survivors, caregivers, family, and friends. Come and enjoy the power of music and friendship together. Everyone interested is welcome to join.

January 2, 2020Utah Valley Brain Injury Support Group meets at 7-8:30 p.m. on the 1st Thursday monthly at the BYU Speech and Language Clinic, Room #177. Address: 1190 North 900 East, Provo, UT 84060. ​For questions call Lori Johnson at (801)422-9132.

January 14, 2020 – Brain Injury Alliance Support Group for Adults, 6-8 p.m. meets every 2nd Tuesday monthly at Sanderson Community Deaf Center, 5709 South 1500 West, SLC, UT 84123. This social group is for caregivers and survivors. Come join us for dinner and games this month. Bring your favorite dessert to share if you’d like. For more information, please call Jennifer (801)386-2195, or Beth (801)585-5511.

January 16, 2020IMC Caregivers and Survivors Education and Support Groups, meets at 7 p.m. every 3rd Thursday monthly at Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107, building 1.

Caregivers meet on the 9th floor Neuroscience Conference Room. The discussion will be lead by Kim Coletti, MS,CCC-SLP on What to do When Your Loved One Refuses Treatmant.

Survivors meet on the 9th floor gym. Hillary Brown, Tosh Pilates will be presenting Pilates for Survivors. For more information, please call (801)314-2086 or email Emily Redd at emily.redd@imail.org.

January 28, 2020University of Utah Brain Injury Support Group meets at 6 – 7 p.m. every 4th Tuesday monthly at Sugarhouse Health Center, 1280 E. Stringham Avenue, 3rd floor conference room, SLC, UT 84106. Sarah Gallant and Ally Cayas are over this Support Group. For more information please call (801)581-2221.


Aphasia Talking Practice Group – Meets every Tuesday, Noon-1 p.m. at 5770 South 250 East #G50

Meditation Group – Meets every Wednesday, 3 p.m. at 5770 South 250 East Cafeteria Conference Room

Cognitive Skills Group – Meets every Thursday Noon-1 p.m. at 5770 South 250 East #G50

Contact: Emily Redd at Emily.redd@imail.org


Together we share coping strategies, provide encouragement, comfort and advice from people with common experiences.

For more information contact Margo at (801)455-6089 or Utah@efa

January 8, 2020 – Provo Epilepsy Group for All, meets at 7:00 – 8:15 pm on the 2nd Wednesday at the Provo City Library, 555 N. University Ave., Provo, UT.

January 9, 2020 – IMC Epilepsy Group for All, meets at 7:00 – 8:30 p.m. on the 2nd Thursday at the Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT Bldg. 6, 1st floor – CR2 in the Doty Education Center.

January 15, 2020 – SLC Epilepsy Group for All, meets at 6:30 – 8:30 p.m. on the 3rd Wednesday at the SLC Main Library 200 E. 400 S., SLC, UT (3rd floor conference room).

West Jordan Epilepsy Group for Teens, is cancelled this month. If you have any questions, concerns, please contact Margo Thurman @ 801-445-6089.

The Logan Epilepsy Support Group for All is in the process of looking for a replacement moderator that is as passionate about supporting their community as the last one. This Support Group will be postponed until further notice. If you have any questions, concerns, or information you would like to share, please contact Margo Thurman @ 801-445-6089


http://www.caregiver.org (online webinars for caregivers)

http://www.braininjury.com (medical, legal, information resource)

http://www.abta.org (brain tumor education and information)

http://www.cdc.gov/ncipc/tbi (brain injury facts, programs, education)

http://www.ninds.nih.gov/Disorders/all-disorders (education for brain injury, stroke and other neurological disorders)

http://www.msktc.org/tbi (TBI Model Systems Knowledge Translation Center) national leaders in TBI research and patient care.

http://www.nationalmssociety.org/Resources-Support (resource for those with MS)

http://www.epilepsy.com/utah and/or http://www.epilepsy.com (seizure education and support by state or national)

https://biau.org (resource for those with brain injury)

http://www.brainline.org (preventing, treating and living with TBI)

http://www.uilc.org (Utah Independent Living Center is a resource center which enhances independence of persons with disabilities)


https://store.usgs.gov/access-pass (free pass to National Parks & Federal Land Agency areas)

https://twilightinsight.wordpress.com/hobbies/hobbies-or-healing-the-brain/tbi-and-selecting-a-hobby (select a hobby – ideas especially for TBI survivors)

(wheelchair accessible trails in Utah)

wasatchadaptivesports.org (Wasatch Adaptive Sports)

http://www.discovernac.org (National Ability Center)

https://healthcare.utah.edu/rehab/support-services/trails.php (University of Utah TRAILS Program)

https://www.meetup.com (meet up groups)


http://www.brainline.org/abbymaslin (blog about loving and learning after TBI)

https://www.loveyourbrain.com (Kevin Pearce’s nonprofit organization that improves the quality of life of people affected by traumatic brain injury)

 Two of my favorite websites. What are yours?

Thank you for reading. I hope you found the information helpful and will follow this website via email to receive notifications of every new post. The “Follow” button is located at the beginning of the newsletter. However, if you want to subscribe only to a monthly newsletter, I can add you to the newsletter only list. For this option, please email Barbara@UnitingCaregivers.com.

Seizure Insights

Christine told about her sister’s seizures in Laura’s Story, part 2. Seizures are scary to witness, especially when you don’t understand what’s going on. I know because I’ve seen Mark have many. They look painful and leave him very confused and sometimes unresponsive. Mark’s first seizure was seven years after his traumatic brain injury (TBI) and left me with many questions and concerns. I found the short article below very informative.

What is a seizure? 

Reference http://www.epilepsy.com/learn/epilepsy-101/what-seizure

  • A seizure is a sudden surge of electrical activity in the brain.
  • A seizure usually affects how a person appears or acts for a short time.
  • Many different things can occur during a seizure. Whatever the brain and body can do normally can also occur during a seizure

What happens in the brain during a seizure?

  • The electrical activity is caused by complex chemical changes that occur in nerve cells.
  • Brain cells either excite or inhibit (stop) other brain cells from sending messages. Usually there is a balance of cells that excite and those that can stop these messages. However, when a seizure occurs, there may be too much or too little activity, causing an imbalance between exciting and stopping activity. The chemical changes can lead to surges of electrical activity that cause seizures.
  • Seizures are not a disease in themselves. Instead, they are a symptom of many different disorders that can affect the brain. Some seizures can hardly be noticed, while others are totally disabling.

The nature of seizures varies, because the lobes of the brain control different behaviors, movements and experiences.

Does just one or two seizures mean I will get epilepsy?

  • About half of the people who have one seizure without a clear cause will have another one, usually within 6 months.
  • If there is a known cause for your seizure (for example, brain injury or other type of known brain condition), then you are twice as likely to have another seizure.
  • If you have two seizures, there’s about an 80% chance that you’ll have more.
  • If your first seizure occurred at the time of an injury or infection in the brain, then you are more likely to develop epilepsy. Often, more seizures don’t occur until weeks or months after the initial injury or infection.
  • More seizures are also likely if your doctor finds abnormalities on a neurological examination (tests that are done in a doctor’s office to see how the nervous system is working).
  • An EEG test can look at the electrical activity of the brain and may help predict whether more seizures will occur. Certain patterns on the EEG are typical of epilepsy. If your brain waves show patterns of that type, you are about twice as likely to develop epilepsy.

Understanding a Complicated System

Have you ever studied so hard your brain hurts or feels tired? How delicate is our brain? Why does a person with a traumatic brain injury drift in and out of consciousness? I’ve researched some sites on the brain and meshed information together from two of my favorite sources, which are listed at the end of my article.

Our brains weigh about 3.4 pounds of extremely delicate soft tissue, being the consistency of jelly or soft butter. So delicate it can’t even support its own weight. Fortunately, it’s well protected in the hard bones of our skulls, durable tissue and surrounded in a bath of cerebral spinal fluid. Because the brain is immersed in a liquid, its weight is reduced to a point at which it can support itself. The cerebral spinal fluid provides further protection to the brain by its presence within a series of hollow, interconnected chambers, called ventricles. Aside from contributing to the structural support of the brain, this bath of fluid also provides a water cushion that protects your brain in a collision or if you just bump your head.

The brain has no ability to maintain long term energy reserves; it must be constantly supplied with blood. This occurs through the vertebral arteries and the internal carotid arteries. Within the brain itself, these arteries are interconnected, allowing for a continuous supply of blood to all portions of the brain when one or more arteries become blocked.

Brain scans show that thinking uses up a lot of energy, which is revealed by increased blood flow. It uses as much as a fifth of all the energy we get from food. Since our brains can’t store much energy and because they’re tightly enclosed inside our skulls, there is a limit to how much blood and therefore energy can be supplied to the active areas. Consequently, thinking hard tires your brain.

Image credit: File:Neuron.svg

Image credit: File:Neuron.svg

Specialized cells called neurons perform the information processing that occurs within the brain. This processing occurs as a result of the transmitting and receiving of electrochemical signals by these cells.

Many of our brain’s nerve fibers are wrapped in a fatty sheath, which makes 10% of our brain fat. This fatty sheath, called myelin, is vital as it insulates the nerves. This allows electrical impulses to travel quickly around your brain.

Image credit: Imgarcade.com

Image credit: Imgarcade.com

If you hit your head hard and the skull is broken, the pieces of the broken bone may dig into the brain and tear the delicate tissue. Even if your skull isn’t broken, it’s possible to sustain serious brain damage if the brain impacts onto the inside of the skull or twists against its rough surface. When there is sudden speeding up and slowing down, such as in a car crash or fall, the brain can move around violently inside the skull, resulting in injury causing bruising or bleeding. Bleeding is particularly dangerous, causing further damage. A person with this type of injury may seem fine initially as the effects take several hours to reveal themselves.

The severity of injury refers to the degree or extent of brain tissue damage. The degree of damage is estimated by measuring the duration of unconsciousness, the depth of coma and level of amnesia or memory loss. MRIs or CT scans are also used to project the injury.

Research shows that just like with muscles the more you use a part of your brain, the larger it will get. Also like muscles, as you use a particular part of your brain, more blood is pumped to that area to provide energy. Finally, as with muscles, the more you use your brain, the better it works, subsequently it can improve.

The human brain is a complicated system comprised of over 1 billion specialized cells called neurons. These neurons get damaged in a collision and take time to heal. Amongst these neurons there are countless connections. “To comprehend this fully, one needs not look further than the Amazon rainforest, where there are some 1 billion trees. If one counted every leaf on every tree, the sum would closely parallel the number of connections in the human brain.”-unknown author.

Your brain is constantly monitoring and fine tuning what is going on in your body – 24 hours a day, year after year – without you even being aware of it. What do you do to ensure its health and safety?