March 2020 Newsletter

During your busy day, do you think about all that your brain does to get you through it? It controls everything you say, feel, and do. Through your brain, you experience emotion. It keeps you alive through breathing, circulation and digestion. It controls your hormones, and the immune system. It’s responsible for your urges, ideas and the way you think, even the reason why on some occasions, you don’t think, but act instead.

This incredible organ of soft tissue, weighing less than three pounds contained in our skull is largely taken for granted. Yet it functions as a primary receiver, organizer, and distributor of all information for the body. We usually don’t think about all the brain does, until an injury occurs or malfunctions.

Washington, DC reports every 11 seconds someone in the US sustains a brain injury.

There are two basic types of brain injury:

Traumatic Brain Injury (TBI) is caused by an external force, a blow or jolt to the head. Common causes include motor vehicle crashes, falls, sports injuries, assaults and gunshot wound to the head. Injuries range from mild concussions to severe permanent brain damage.

Acquired brain injury (ABI) is caused by internal factors, such as a lack of oxygen supply due to near drowning or heart attack. It can also include infectious diseases, a brain tumor, exposure to toxins, aneurysm or stroke. The brain injury will range from mild to severe.

Remember you only get one brain. Unlike the liver, kidney or heart, no human brain transplant has ever been done. Your brain can’t be replaced like a hip, knee or shoulder. Nor fixed like a broken bone.

Since 1991, we enjoy many friendships of all types of brain injured people with varying degrees of damage. We gain valuable information through meeting with others in like situations. I’m grateful for the people we meet in our support groups. Their encouragement helps me meet our challenges. The experience and knowledge shared is both beneficial and uplifting.

My hope for this newsletter is to share information about organizations which help people with a brain injury and their caregivers. I’ve included information relating to epilepsy because TBI and ABI can cause epilepsy. My husband, Mark had his first seizure seven years after the car accident. He was diagnosed with epilepsy as a result of his brain injury.

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.

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FREE SUPPORT GROUPS FOR STROKE AND BRAIN INJURY SURVIVORS AND CAREGIVERS

March 5, 2020 – Utah 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.

March 5, 2020 – Utah Valley Brain Injury Support Group meets at 7-8:30 p.m. on the 1^st Thursday monthly at the BYU Speech and Language Clinic, Room #177. Address: 1190 North 900 East, Provo, UT 84060. Join us for an Adaptive Yoga Night, taught by Abigail Atkinson. For questions email byutbigroup@gmial.com or call (801)422-9132.

March 10, 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. Bring your favorite dessert to share if you’d like. For more information, please call Jennifer (801)386-2195, or Beth (801)585-5511.

March 19, 2020 – IMC Caregivers and Survivors Education and Support Groups, meets at 7 – 8 p.m. every 3rd Thursday monthly at Intermountain Medical Center, 5171 S. Cottonwood St., Murray, UT 84107, building 1. This month survivors & caregivers willmeet together on the 9^th floor Neuroscience Conference Room. Natalie Caldwell, MS,CCC-SLP is presenting Ground Rules for Communication with Those You Love. For more information, please call (801)314-2086 or email Emily Redd at emily.redd@imail.org.

March 24, 2020 – University of Utah Brain Injury Support Group meets at 6:15 – 7:15 p.m. every 4th Tuesday monthly at Sugarhouse Health Center, 1280 E. Stringham Avenue, 3^rd floor conference room, SLC, UT 84106. This month they are hosting Molli Baker from Molli Dogs, a service dog training academy. She will be talking about therapy, emotional support, and service animals. For more information please call (801)581-2221 or email Kelsi.Schiltz@hsc.utah.edu.

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FREE WEEKLY GROUPS INTERMOUNTAIN HEALTH CARE NEURO THERAPY in Murray, Utah

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

Adaptive Yoga – Meets every Wednesday, 4 p.m. at 5770 South 250 East, Gym

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

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

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FREE EPILEPSY SUPPORT GROUPS FOR THOSE EFFECTED BY SEIZURES

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

March 11, 2020 – Provo Epilepsy Group for All, meets at 7:00 – 8:15 pm on the 2^nd Wednesday at the Provo City Library, 555 N. University Ave., Provo, UT.

March 12, 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, 1^st floor – CR2 in the Doty Education Center.

March 18, 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).

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HELPFUL WEBSITES:

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)

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ACTIVITIES TO DO WEBSITES:

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)

http://wanderookie.com/blog/2015/07/27/12-beautiful-wheelchair-accessible-trails-in-utah
(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)

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SHARING WEBSITES:

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?

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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.

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Closer to Home

by Katie, May 1991. One month after her 7th birthday. A picture of Katie and Christopher. Our cat, Spook in a picture on the wall. She expressed her biggest fear, “I hope you will remember us.”

Mark’s neurologist explained that it’s difficult for any physician to predict the outcome of traumatic brain injury. Along with family members, they have to “wait and see” how the patient progresses. They encouraged me to bring Mark’s favorite music and surround him with familiar people and things.  After meeting each one of the therapists assigned to work with Mark, Mom drove me home.  What a huge difference it made having him only 2.3 miles away. What used to be an hour drive to see Mark now took five minutes. This relieved the pressure of feeling like someone needed to be at the hospital at all times. Knowing I could get there quickly in an emergency lightened the stress. My dad, brothers and brother-in-law would no longer need to take turns spending the night at the hospital. I will be forever grateful for the weeks they did so.

May 1991, Christopher’s drawing of the swing set Mark built for the kids

I picked up the kids from the neighbor’s house and they gathered pictures they had drawn and colored for their Dad over the past seven weeks with get well notes to him. They were excited to decorate his room with them. Christopher put his prized pinewood derby car in a bag, along with the first place trophy he had won the week before. I packed up some family pictures, clothes and dinner for us to eat in Mark’s new hospital room. We were all anxious to be together again as a family and we went there with the intention of making Mark’s hospital room feel like a second home. Our excitement made the memory of their fearful first visit disappear.

At the hospital, the kids helped me tape their pictures on the salmon colored walls and closet door right in front of Mark’s bed. I put framed school pictures of the kids and some family pictures on the shelves above the drawers. We hoped these pictures would be the first thing Mark would see when he opened his eyes. While I placed underwear and socks in the drawers, I encouraged the kids to read to their Dad, which was the nightly routine before the accident. I hung a few pullover shirts and sweat pants in the closet before taking a seat in the room. There was a small, round table with only two chairs in the room. I asked  the nurse if I could bring in one more chair from the recreation room so we could each have one. The three of us sat around the table and we ate our first meal by Mark’s bedside. It felt so good to all be together again and the kids seemed to be happy to see their dad. Christopher pulled the pinewood derby car and trophy from the bag and set it on the night stand next to his dad’s hospital bed. A touch of home was now in the room. We knelt by his bed and said our prayers with him before leaving the hospital. This became our nightly routine which enabled me to sleep better than I had in the previous seven weeks. Having Mark so close to home was indeed a big blessing.

Struggling to understand this complicated condition, I made sure I was at the hospital every morning for Mark’s therapies. On my way, I would drop the kids off at the neighbor’s home or my parents would take them to their home or their cousin’s home to play for the day. Before dinner, I would pick up the kids from wherever they spent the day and we’d take dinner up to the hospital. After our meal together, the kids would play with the other children in the hospital playroom; some of them were patients while a few were visitors. They enjoyed playing and helping the children. The nurses and aides were friendly and caring in helping our children adjust to our new situation. They helped the kids become comfortable in the hospital setting, encouraging them to sit in the wheelchairs and learn to maneuver them.

The uncertainty of Mark’s health condition was frightening. Each family member and friend dealt with this crisis in his or her own way. Being responsible for Mark’s well-being,  I felt an urgency to learn everything about his condition so I could make wise choices in his behalf. All the stress and worry made it difficult for me to concentrate and remember explanations given to me. Keeping a journal of events, feelings, concerns, and questions became my way of coping. Overwhelmed, I felt the need to write down my questions and the answers I received from therapists, doctors and nurses. Some of the staff were fine seeing me doing this, while it made others feel guarded and suspicious of my motives. I was constantly taking notes because I didn’t want to forget what I was told and it helped me understand and stay focused on what I felt was most urgent at the time. I was aware of each staff member’s concern, but I just focused on the most critical ones at a time. I believed Mark would come out of his coma once his other injuries and infections healed, but for his therapists, the coma was the most concerning.

After three weeks of the powerful intravenous medication, Amphotericin B, Mark’s red and white cell counts were in the normal range and it was another victory to complete this treatment. The next focus for improvement was weaning Mark off the ventilator. The respiratory therapist came three times daily. I asked and kept record of his respiratory rate and the breaths Mark initiated on his own. I was encouraged every time the preset pressure value was turned down. After one week of weaning him off of the ventilator, the tracheotomy tube was downsized and a smaller tube was inserted. The smaller size allowed for the stoma site to shrink. The next step towards removing the tracheotomy was to plug it. The purpose of this cork was to insure that he was able to clear his own airway effectively without the need for suctioning. After a couple of days without any complications, the doctor ordered the trach tube to be removed. Glorious news, but I was taken by surprise when they pulled the tube out right there in his hospital room and then covered it with dressing and taped it in place. I was unprepared for the gasping, high-pitched sound he made and I panicked. It was hard to watch him struggle. The respiratory therapist kept a close eye on him and tried to reassure me the hole would close up on its own quickly. Since I had no previous experience with this, I doubted him. It was the first night since Mark had been at Western Rehab that I didn’t dare take the kids to see him nor did I want to leave him. Thankfully, Mom and Dad were able to keep the kids overnight and within twenty-four hours, Mark was breathing more easily all on his own.

Conflicting Viewpoints

With my collarbone healed and my right arm free from the sling, I started writing daily notes about Mark’s progress. I recorded his red and white cell counts, temperature, heart rate and respiratory pressure support. I did this so I could recognize the improvements no matter how small they might be. It helped me stay focused on just parts of the recovery instead of thinking about everything Mark needed to overcome.

Mark’s white cell count was high and since the increase indicates an infection, they did a body scan. Mark’s liver was abnormal. With his weakened immune system, they treated the liver infection aggressively with a powerful intravenous anti-biotic because they were worried the infection would spread quickly to other organs, causing death. Within a week his white cell count went from 50,000 down to 11,000, which was an answer to our prayers. He was schedule be on this medication for two weeks with the goal range of 5,000 –10,000. In my mind he had almost reached the elevated end of the goal range.

With high blood sugar levels, Mark was now on insulin and with a large blood clot in his right leg, he was getting heparin. He was now in a floatation bed to help with the blood clot problem. There were so many health concerns that at times I thought I’d lose my mind from the anxiety. I found it helpful to write down the worries and the normal or goal range for his white and red cell counts, heart rate, temperature and the respiratory pressure support. I tracked the numbers daily. I recorded when they did a test and then the test results. Gathering all the information I could helped me understand the process and what was happening with Mark’s body. I recognized and celebrated every little miracle that happened.

Mark’s low red cell count was a cause for concern because it could indicate internal bleeding, bone marrow failure or kidney disease. Within this same week his red cell count increased from 3.3 to 3.8 million with the goal range of 4.0-4.5. I saw the numbers as a great improvement.

I also noted on one day I saw Mark move his finger, on another he held his head up slightly to cough and another time he yawn. I rejoiced in every movement and recorded them in my journal. Unfortunately, Mark wouldn’t do these things when the doctors, nurses or therapist were there so my joy had no merit by their standards.

Without meaning to, I annoyed the doctors and nurses with my records and positive notations. It became a daily routine when the doctor walked into Mark’s room with the hospital records and stated, “No change.” I would then read from my records and report what I had witnessed. The doctor then left the room as frustrated with me as I was with him. We definitely did not see Mark’s progress in the same way. He never specifically said, but it was written all over the doctors face, who was I? A young 32 year-old spouse, uneducated in neurology, who had the audacity to question and challenge his words. I was truly grateful for his knowledge and skills which saved my husband’s life, but I didn’t appreciate his bedside manners. My observations were not taken seriously. The doctor was the medical professional, reading and understanding what the results of many tests were telling him. However, I knew Mark and was the one spending many hours with him day in and day out. I felt his spirit and knew he felt mine. It was so frustrating that what I witnessed had no value with the professional caregivers. I wanted us to be on the same team, working together in Mark’s behalf, but instead it felt like we were on opposing teams. There were a few days I was tempted to throw my shoe at the doctor as he walked out the door. Equally frustrated at me, I’m sure he was tempted to stitch my lips together.

The day after my 32^nd birthday, they did a Brain stem Auditory Evoked Response (BAER) test which measures how the brain processes the sounds you hear. The BAER test records brainwaves in response to clicks or other audio tones that are played. The test can help to diagnose hearing loss and nervous system disorders in people who are not able to participate in a standard hearing test. While Mark was lying in bed, a technician placed small electrodes (sticky patches with wires attached) on Mark’s scalp and earlobes. The electrodes were connected to a machine which recorded his brain activity while he heard a series of clicks and tones played through earphones.

I was elated as I watched his brainwaves being recorded in black on the continuously fed white sheets of paper. He was reacting to the noise he heard, which confirmed my belief that he could hear and his brain was processing it. My spirit jumped for joy with each spike his brain activity made every time he heard one of the clicking sounds or other tones. The printout of the test results was something tangible which showed the spikes. I didn’t know what a normal or abnormal test looked like, but the report appeared wonderful to me. I was excited to hear what the doctor would say. I was positive it would be good news.

The next day the doctor told me that the test indicated significant damage to the brain stem, which is responsible for breathing, sleep patterns, hunger and thirst, blood pressure, heart rhythms, and body temperature. It regulates the central nervous system. “Mark has bruising and injury throughout all parts of his brain, but the most severe damage is to the brain stem. When you go to sleep, it’s the part that wakes you up. With the amount of damage he has, I don’t expect he can ever wake up.”

A chill ran up my spine while a flashback flooded my mind. After I gave birth to Katie, I hemorrhaged and had to have an emergency surgery. When I was coming out of my sedated state, I heard doctors talking about all the blood I had lost. I felt one of them pull down the bottom part of my eyelid as he commented on how white the area was, which should be pink in color. Inside I panicked, but could not make my body move. I worried they thought I was dead and I felt helpless to show or tell them otherwise.

With this doctor’s words, I felt Mark’s terror. He, too, was trapped in a body unable to respond. I followed the doctor as he left Mark’s room. “Please don’t ever give reports like that at his bedside again. I prefer we meet in the conference room to have these discussions. After all, the BAER test confirms he can hear, right?”

“Yes, he can hear, but I don’t believe he understands a word that’s said. However, if it makes you feel better, we can meet in the conference room from now on.”