In Remembrance

Cemeteries look beautiful this time of year with decorated graves including flowers, wreaths, balloons and flags adding color and variety to the area. I appreciate having a holiday dedicated to the remembrance of those who have passed and have changed our lives for the better. In honor of Memorial Day, I like to post an article by someone who recently lost a loved one. This year Peggy Martin shared her Tender Mercies amid the challenge of losing her husband of forty-nine years. Her ability to recognize the blessings during this hard time is inspiring. Remembering the purpose of this holiday is to show respect and reverence for those who lost their lives in the U.S. military, I’ve found three thoughts worth sharing.

One of my favorite quotes by Carl Jung, “That which is most personal is most universal.”

This weekend as we honored those who have passed, I thought about the how and why we lost our loved one, is most personal. However, the grief felt with that loss is most universal.

I’ve included five of my favorite quotes concerning grief.

And one of my favorite songs

What’s your favorite quote or thought concerning Memorial Day, veterans, death and grief?

Relating Articles:

Twelve Things I’ve Learned About Grief

Blessings From Grief

Twenty Things to Know About Grief

Tender Mercies Amid the Challenges

Written by Peggy Peterson Martin

My husband, David Paul Martin, age 74, passed away the morning of November 5, 2016 at a Hospice Facility in Las Vegas, Nevada.

It all started with blood clots in early 2016… first one in his right leg, then one in his neck, then two in his left leg. Dave’s Oncologist couldn’t figure out why a 74 year-old man would suddenly start getting blood clots. She scheduled him for a colonoscopy, because he had colon cancer in 2003, and an endoscopy which they were supposed to do the same day. However, the doctor didn’t receive the orders for the endoscopy in time, so he only did the colonoscopy, which was clear.

Then on September 25, 2016, Dave had a stroke and was taken to the hospital by ambulance. He was expected to make a full recovery and released, but he developed pain in his side and back which kept getting worse. He was also unable to swallow solid food. Less than a month after his stroke, he was frustrated by the pain and liquid diet. Unable to get satisfactory answers from his Primary Care Physician, he asked to be taken to the ER. He was admitted and spent eight days in the hospital where an endoscopy was finally performed, which showed a large tumor at the base of his esophagus. It turned out to be stage 4 esophageal cancer and had metastasized to his liver. We found out it was the cancer that caused the blood clots and stroke! Dave was allowed to go home to consider his treatment options.

2016, “Our last family picture,” Dave is in a white shirt and tie while the rest of us are in our grubbies because he wanted to have an obituary picture taken. We used something else, however. The blanket is covering his pajama bottoms!

Feeling a sense of urgency, all seven kids arrived within three days, including our son, David, who had recently moved to St. Thomas, Virgin Islands. This was a beautiful weekend together. Despite his almost constant pain, we shared many tender moments, laughs, tears, and memories. It was also a difficult weekend because Dave decided to forgo chemotherapy which would only have limited effectiveness at best. Hospice was called a couple of days later. Dave was getting weaker, but his wish was to spend his remaining days at home. Unfortunately, hospice couldn’t give him the medication he needed to manage his pain at home, so they transported him to their care facility in Las Vegas. He never regained consciousness once they medicated him. He passed away only ten days after his diagnosis. Though this was a very difficult time, we recognized several tender mercies from the Lord.

A year earlier, our daughter, Missy, and her family surprised us and drove all the way from their home in Charleston, Illinois, to show up at our son, Steve’s house in Herriman, Utah, for Thanksgiving dinner. All our other children were there, and it was the first time in over twenty years that we’d all been together for Thanksgiving. Dave was particularly touched and told Missy, “I’ll never forget this special surprise.”

In June of 2016, despite pain from two blood clots in his leg, Dave and I made a trip to Salt Lake City to see our kids and 23 grandchildren, including Missy and her family who were there on vacation. Jeff and his family from Henderson, Nevada, also just happened to be there for his wife’s family reunion. Our son, Rob, invited us to do some temple work with him. When we agreed, he decided to open the invitation to his siblings as well. Maybe it was Rob’s offer to buy everyone lunch, but all seven of our children and all but two of their spouses joined us in the Mount Timpanogos Temple that day. Having our whole family together was such a special experience, and everyone felt the significance and joy of being together there. It just happened to be our 49^th Wedding Anniversary! This is a memory I especially cherish since we didn’t make it to our 50^th which would have been next month.

As soon as Dave came home from the hospital after the devastating diagnosis, our son, Rob, took off work and stayed at our home for over two weeks, not leaving until after the funeral. I couldn’t have done it without him. He was a rock of strength and faith. He helped Dave with many of his physical needs which would have been difficult for me. While Dave was on his deathbed, we had a sewer flood through our house causing significant damage, both to the main floor and the basement. Rob discovered it and was there to help me bail water, trying to keep it from going into the bedroom where Dave was sleeping. Though we didn’t succeed, Dave never fully realized the extent of what had happened. Rob and some of our other children were invaluable in handling the mess and dealing with the plumber, restoration company, and insurance matters.

A tender mercy Dave had in his final days is that he was visited on two occasions by his deceased parents and brother, Leonard, who was killed while serving a mission for our church in Pennsylvania. This brought him great comfort and made him feel he would be with them again when he died.

Dave never became a burden. It was a pleasure to care for him. Several of our kids stayed in our home during Dave’s last few days. They took turns caring for him at night and spending time with him during the day. He was uncomfortable most of the time and in obvious pain, so it was heart wrenching to feel so helpless, but we were willing to do anything to give him even a moment of relief. His rapid decline and death were both devastating and merciful…devastating because it happened so fast and we felt cheated, hardly knowing how to prepare for or deal with our loss…merciful because he wasn’t made to suffer any longer.

We all feel gratitude for the few days we had with our dear husband and father before his passing. His love of family, great example, words of wisdom, and the blessing of serving him will stay with us long after the grief has passed.

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Dave and Peggy were one of the first ones to welcome us to our new neighborhood in Draper, Utah in the year 1996. Our friendship grew as Peggy and I participated regularly in a line dancing class for exercise. We also enjoyed serving together in a women’s organization for our church. In 2002, they moved to a new home in Boulder City, Nevada. Fortunately, the miles between us did not break the friendship bond. I treasure the memory of a few surprise visits when they came to Utah to see their kids. They always left with an open invitation for us to come to Nevada and stay with them. Dave encouraged us by commenting their home was wheelchair accessible. I regret we never made the trip. 

On this Memorial Weekend, I thank Peggy for recognizing and sharing her tender mercies during such a difficult time. I cherish our friendship and appreciate that when we’re together, it doesn’t seem like years have passed. We easily pick up right where we left off! 

 

 

 

The Starved Relationship

Last Thursday, Dr. Matt Townsend, a relationship expert, spoke to a group of survivors and caregivers at the Intermountain Medical Center. He presented life-changing skills with humor, teaching me how to improve my relationships in an entertaining way. I enjoyed his presentation so much that I’ve been listening to his many short videos on a variety of topics dealing with relationships while I work. If you like to listen to fun, uplifting, concise talks, you should check out his website.

A synopsis of what I learned from Matt is that life keeps changing and some experiences change the way we think and feel. Although our experiences may differ, we share feelings of: loss, sadness, insecurity, embarrassment, inadequacy, anxiety and/or depression at some time in our lives.

He quoted Carl Jung, a famous psychiatrist, “That which is most personal is most universal.”

Matt professionally counsels people for a wide range of challenges. Some have financial, fidelity, abuse and a variety of addictions. He calls these problems the smoke rather than the cause of the fire. He states we all have seven basic needs and we feel starved when those needs aren’t meet. When we feel starved, we don’t want to feed the other and the bond is broken, which ignites the fire.

We all want loyalty, happiness and honesty in a relationship. To feel joy and peace in a relationship we must feel:

• Safe – including physical, financial, mental, emotional, social and spiritual safety
• Trust – consisting of honesty and competence
• Appreciation- hearing or seeing words of approval (remember it takes four positives to ease one negative comment)
• Respect – showing through words and deeds
• Validate – hearing what is said to understand without having to agree
• Encourage – getting into the heart of your loved one and doing what you can to help them reach their goals
• Dedication – committing to your relationship and making them feel more important than any place or thing.

Matt said trauma or health issues are the number one way to expand in these areas. We don’t grow unless we are pushed. We learn through our challenges.

When these basic needs are not met, we feel starved which makes it hard to fill your loved one’s needs. We all feel love and express love differently. Gary Chapman, author of The 5 Love Languages, describes how some of us feel love by: words of affirmation, quality time, receiving gifts, acts of service and physical touch. We tend to give love to another in the manner that speaks love to us. However, it is better expressed in the language your loved one speaks. Matt says his wife’s love language is acts of service. He vacuums or does another household chore and she’s appreciative. His love language is physical touch. They’ve tried holding hands while he vacuums, but that’s just too awkward.

To learn more about The 5 Love Languages and to discover your own love language, visit: http://www.5lovelanguages.com

We all want loyalty, happiness and honesty in a relationship. To feel joy and peace, we must feed the relationship. “You must be the change you wish to see.”- Gandi

Matt is the founder and president of Townsend Relationship Center, a relationship skills-building organization.

To hear Dr. Matt Townsend’s presentation of The Starved Relationship see:

 

 

 

Hurdles in Our 5K Goal

BIAU 2012, 5K: Katie, Mark & I

For many years we’ve enjoyed participating in the annual Brain Injury Alliance of Utah (BIAU) 5K Run, Walk & Roll. The past two years we’ve missed due to recovery from a hernia surgery one year and a hip surgery another. The 5K is always held the third Saturday in May, so in January we put it on our calendar and set a goal for me to push Mark in the wheelchair most of the way, but the last stretch he would walk with a walker to the finish line.

2014, Family at the 5K, Cami, Ruth, Don, Katie & Mark

We’ll name our first hurdle plantar fasciitis and heel spurs. My feet were killing me and not just in the morning when I first got out of bed, but lasting throughout the entire day. With the 5K just two months away, I decided it was time to get medical help from a podiatrist. After x-rays which revealed a bone spur on each heel and an ultra sound to detect the inflammation of the ligament on the bottom of each foot, I opted for a cortisone shot. With little improvement, but determination to walk the 5K, I went back a month later for another cortisone shot.

The second hurdle we’ll call a VNS replacement. A month ago Mark had his regular six month appointment with the neurologist to check his Vagus Nerve Stimulation (VNS). This device is designed to prevent seizures by sending regular pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a pulse generator somewhat like a pacemaker and are sometimes referred to as a “pacemaker for the brain”. It is placed under the skin on the chest wall and a wire runs from it to the vagus nerve in the neck.

Mark has had a VNS for ten years now and it keeps him from having grand mal seizures. Normally, the device goes off every 1.8 minutes and the regular pulses are set at the strongest setting available. Every six months we have the generator checked, which consists of  Mark holding a wand to his chest where the generator is located. The neurologist is holding a hand-held computer, which is attached to the wand by a cord. Like magic, a report appears on the screen indicating how well the VNS is working and the amount of battery life left. The neurologist can make needed adjustments on the computer while the wand is placed over the generator. It’s amazing and weird all at the same time.

In September, the neurologist told us the pulse generator was running low and should be replaced soon. I was recovering from a total dislocated shoulder and the thought of another surgery overwhelmed me. The neurologist called the manufacturer of the VNS and gave them the numbers on the report. They figured the device would last until May. When we went in for the next check in March, there were no numbers to report, only a message stating, “urgent, replace immediately”.

Unfortunately, it takes weeks to get an appointment with a neurosurgeon even if it’s urgent and another ten days to get the surgery scheduled with the hospital. They didn’t realize we were determined to make it to the 5K, nor would it have mattered. The surgery finally happened, but just one week before the 5K.

Mark & I before his VNS surgery 05/12/17

Mark sailed through the surgery. It’s nothing compared to a total hip replacement. We thought we were on the homestretch until we came to the next hurdle: seizures. Since the old VNS hadn’t been working properly, the neurosurgeon didn’t set the new one at full strength. He thought it best to increase the strength gradually. In the past week after his surgery, Mark has had several seizures. Apparently, it’s set at a lower level than the old, worn out VNS. The pulses of electrical energy must be too mild to do much good.

The 5K was one day away and we were still determined to walk to the finish line, but one more hurdle got in our way. I’m not sure if it was something we ate or a 24-hour bug, but we both were hit with diarrhea. Not fun for me, but worse for Mark.

We had to make some adjustments to our 5K goal. I wouldn’t be able to push Mark in his wheelchair, but we were still determined to walk at least 150 yards to the finish line. That might not seem like much of an accomplishment, but for us it was quite a feat. Mark worked on hard on gaining strength, mobility and endurance with his therapists, volunteers, family members and his dedicated trainer, Jonathon. He walked with a walker about four times a week with two people assisting, one in front and another behind him, keeping the wheelchair close by in case a seizure occurred. He often joked, “Must I drag all of you along?”

I wondered if one might think we looked like a train wreck, but the cheers of encouragement told us otherwise. We were thrilled to reach our goal past the finish line. The 5K, which turned into a 150 yard walk for us was quite an achievement with the hurdles we had to overcome.

Thank you Jonathon, Eldin and Katie for your support in helping us reach our goal!

 

The Value of Occupational Therapy

Wanda in OT uniform in the middle of the back row

On Mother’s Day, I posted an article about Mark’s Mother’s career as an Occupational Therapist (OTR). I enjoyed interviewing her and thought it was interesting how treatments changed through the years and varied from those with physical, mental or cognitive disorders.

I’d never heard of an OT before I met Wanda. The word occupational lead me to believe they helped people find a job which was most fitting for each individual based on their knowledge and interests. When Mark realized my confusion, he explained she helped people with mental illness perform activities of daily living, which included crafts. Wanda clarified the craft media were used to improve attention span, attention to detail, concentration, planning, generalization, adaptability and socialization skills.

After our accident, I met another OT while Mark was in his coma. She did passive range of motion type exercises with the arms and shoulders. She ordered splints for his hands and wrists so they wouldn’t curl. I learned a Traumatic Brain Injury (TBI) can cause unwanted, excessive muscle tone, pulling hands and feet in positions which would keep him from using his hands properly in the future. Months later, after Mark came out of his coma and in a rehab center, I met another OT. She oversaw a series of full arm castings, which were needed to stretch out his muscles because the intensity of his flexor tone drew his right arm up to his chest and it was impossible, even manually, to stretch it down to his side. After several casts, he graduated into a brace, which he wore for nearly a year.

My experiences with OTs through the years have taught me there is a large range of treatments an OT does depending on the type of rehab needed. I recognize the needs of a TBI patient and one with mental illness are very different, but I wondered if through the years the profession and approach has changed. I decided to ask Wanda, who’s the best resource I know.

How did the field change from when you started to retirement?

“In the late 60s, there was a push to move patients out of institutions into halfway houses and to close the institutions. This was handled very poorly and resulted in a lot of misery for the patients. At this time family involvement became more common.

 When I first started working, there were no tranquilizers or really any other kinds of medications for the mentally ill. Electric shock, insulin shock and “the tubs” were the main types of treatment. A tub treatment consisted of the patient being submerged in a tub of cold water which had a canvas cover with a hole for the patient’s head to stick out and staying there for quite some time as body heat warmed the water. This kind of treatment was given by a Physical Therapist and OTs did not participate in any of these kinds of treatments.”

How did you feel about this treatment and did it seem to work?

“Electric shock therapy did work for many patients. It’s changed a lot since the 50s and is still used for patients who are depressed or suicidal. It works quickly and if I needed it, I’d prefer it to the medications.

Insulin shock therapy was used for patients with other problems, but I don’t remember what the differences were. I haven’t heard of it being used since the 50s.

The tubs worked for some patients, but since I’m always cold, it seemed cruel to me.

These treatments were not used together and OTs did not participate. Treatment was determined by the diagnosis.”

What types of experiences can you share?

“Patients tended to self- isolate when first admitted. Some patients were good to others and some weren’t. They hallucinated freely and were sometimes hostile and aggressive. Sometimes patients had to be isolated until they were in better control of themselves. I can truthfully say I never had a problem with a psychiatric patient, as opposed to a patient with tuberculosis (TB) who was going to bash my head into the wall until other patients jumped out of bed and restrained him.”

Yikes! What caused that?

“During my TB internship, patients were confined to bed and the medications for it were limited. They could have crafts to work on in bed for a certain time limit, fifteen minutes per day for example. I refused to give the patient materials for more time and he got VERY angry. I took refuge behind my supply cart and other patients jumped out of bed and restrained him. These were all ex-servicemen in a VA Hospital.”

Sounds like the military taught them well!

Where did you work?

Wanda on the far right

“Territorial Hospital on Oahu, HI, Northern State Hospital near Mt Vernon, WA, Firlawns Sanitarium in Kenmore, WA, Woodside Hospital in Vancouver, WA and Oregon Health Sciences University (OHSU). Firlawns and Woodside were small, privately owned Hospitals. The others were very large. All patients were legally committed.”

Mark talks about going to work with you at Firlawns as a child and still remembers some of the patients there. He smiles as he recalls one patient who sang Home on the Range. She changed the words to, “where seldom is heard, an encouraging word…”

We have Wanda to thank for our understanding of the benefits of therapy. Many therapists tell me they enjoy working with Mark because he’s willing to try whatever they ask of him. He works hard to recover or maintain the activities of daily living, which he did so easily before the accident. I believe his mother’s influence and her chosen profession kept him from giving up. With just eighteen years of living under the same roof and only twenty-one years in the same state, her inspiration continues to stretch across the miles between them.  It’s a testament to me to the importance of motherhood and the relationship formed in those early years.

I’m forever grateful for the Occupational Therapists who have worked with Mark. Their skills have made a difference in the quality of our lives.

 

Two Hats of Many

Wanda holding sister, Jerrie (1), Karen (2) on Mark’s 11th birthday

I’ll bet every woman feels she is wearing too many hats from time to time as she tries to fulfill the needs of family, friends, personal, professional, neighbors and colleagues. Today we celebrate mothers of the family and the influence women have in society. Next to my own mother who gave me the gift of life and continues to effect who I am today, stands my mother-in-law, Wanda. Her optimistic power in Mark’s life is a great blessing to me too.

Besides being a creative, fun, loving and caring mother, she made a career as an Occupational Therapist (OTR). Wanda was the first OTR I’d met and I assumed she helped people find a job. It didn’t take long for Mark to set me straight. She helped people with mental illness perform activities needed in daily life by using a crafts media.

Mark and Wanda

Through the years after our accident, I quickly learned the importance of skilled OTs. The ability to brush his teeth, feed himself and get a shirt on became the tasks Mark had to relearn after his Traumatic Brain Injury (TBI).

Since 1991, I’ve met more OTs than I can count and I appreciate each one for their help with improving Mark’s quality of life.  Whenever meeting an OT for the first time, Mark proudly states, “My mother is an OT” He then shares some experiences he had as a child with her work.

I’ve written, “I was raised to be a caregiver.” My upbringing helped prepare me for this challenge. Likewise, I believe Mark’s childhood prepared him to be a survivor.

Two hats, Mother and Occupational Therapist, which have had the greatest impact in our lives.

I asked Wanda why she chose this career and she agreed to let me publish this interview.

The first thing that drew me to OT was a movie called Snake Pit. It was about a woman who was committed to an asylum and how she eventually recovered and was released. When I was picking a major in college and looking through college catalogues, OT caught my eye because it involved helping people and a lot of crafts. I learned that psychiatric hospitals had OTs and the deeper I looked into it the more interested I became. Psychiatry and the idea of helping someone improve their attention span, concentration, attention to detail, better living and socialization skills and generalization by using crafts media was what influenced me most.

How long and what kind of schooling did you need before you could practice OT?

I had four years in college with a major in OT and a nine month internship working with other OTs and passing the national exam, which qualified one to add the R after OT. The internships had to be in all these fields: pediatrics, general medicine, tuberculosis, orthopedics and psychiatry and you had to be over 21. I started college in 1948 and got my degree in 1952. By the time I finished internships I really liked both orthopedics and psychiatry and decided I would take either kind of job. Psychiatry was the first job that turned up so I started in 1953. At that time about the only hospitals that had psychiatric patients were institutions. Since then most hospitals of any size have a small unit for psychiatric patients.

How long did you work in this field?

If I remember correctly, I think I worked in psychiatric settings for 22 years: small private settings, large state and territorial settings and the last 16 years at a medical teaching university.

What made a good patient to work with and what made a good family member or caregiver?

All patients were good to work with. We seldom even met family members because until recently, families were ashamed or afraid of mentally ill family members and seldom even acknowledged them. The patients were committed to hospitals and lived there, seldom seeing or hearing from their families.

How did you feel about this separation from family?

I thought family abandonment was terrible, but that’s just how it was. Some of the staff were concerned about the patients, others not so much. In hospitals where patients stayed a long time (years), they formed friendships and the hospital was like a community.

Describe a typical day at work and some of the crafts you did with the patients.

At Oregon Health Sciences University, the day started with rounds, then OTs led an exercise group and a crafts group before charting and lunchtime. After lunch, we led a relaxation group, then an activities group where we worked on attention span, concentration, social skills, etc. This often involved playing games of all kinds, quizzes or planning for the lunch that the patients got together to cook for everyone on the unit once a week, then more charting. Yes, we used a full variety of knives and never had a problem with them in any of the groups. We did check tools and equipment after all groups. In other settings, OTs were responsible for arranging social events, mostly dances and church services. This included everything from getting the band or minister to setting up the room. Sometimes we took patients on outings such as bowling, walks, etc.

 Some of the major crafts we used were: leather work (hand tooled and carved purses, belts, etc.), weaving on pot holders frames to floor looms, ceramics (slab construction, pinch pots, molds), needlework (knitting, crochet, embroidery, sewing) and all minor crafts you can think of.

There was a job cut, so Wanda retired in 1998, seven years after Mark’s TBI. From my own experience with OTs I can imagine the constructive difference she made to hundreds of patients she helped, along with the students and colleagues she influenced. I witnessed some of this when Wanda visited Mark in the rehab center as she quickly became friends with Mark’s OT  The therapist was new to the field and appreciated Wanda’s experience and sought her advice at times. Since Wanda lived several hundred miles away, she mailed things for Mark to work on or sent articles with ideas to help him.

Wanda & Mark 2016

There are all kinds of influential women in this world. If you’re lucky, you get one for a mother. Some people aren’t so blessed, but have other women in their life who nurture, teach and inspire them. Today we celebrate all women who make us feel like we’re easy to love and fun to be with. Who gives us freedom to grow and lets us know it is okay to make mistakes. I’m fortunate to have several such women in my life. The greatest of all are my own mother plus a mother-in-law or more appropriately thought of as a “bonus mom.” I think Mark is equally fortunate. He was raised by a wonderful woman and has the advantage of an ideal “bonus mom.”

To all the wonderful women in the world who benefit lives in a positive way!

May 2017 Newsletter

The effects of brain injury vary and can be puzzling. I’ve gathered pieces of information from this month’s support groups and therapy services offered in the Salt Lake Valley. In case you missed last months meeting’s, I’ve attached notes on the information covered. Please don’t forget to check out the upcoming events and mark your calendar. Also included are links to useful websites. Putting the puzzle together is easier with the help of others. If you have an activity, announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com.

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FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

May 9, 2017– 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 is a social group where dinner is enjoyed together and then games played or crafts made.

This month is the annual Kentucky Derby Races and I’m betting it will be a lot of fun! All caregivers and survivors are welcome. For more information call: Jennifer (801) 468-0027 or Beth (801) 585-5511.

May 18, 2017 – Caregivers and Survivors Education Group will meet together this month, 7-8 p.m. Meets every 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S., Cottonwood St., Bldg. 1 Floor 7 Murray, UT 84107

Dr. Matt Townsend will be speaking on Improving Relationships. He is the founder and president of Townsend Relationship Center, a relationship skills-building organization.    Through entertainment and humor, Matt teaches life-changing skills that will help improve our most important relationships.

May 23, 2017 – University of Utah Brain Injury Support Group 7 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center (801) 581-2221 1138 E. Wilmington Avenue.

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FREE WEEKLY GROUPS

offered through

INTERMOUNTAIN HEALTH CARE NEURO THERAPY SERVICES

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

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

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

Contact: Dr. Russo at antonietta.russo@imail.org

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Epilepsy Groups for those affected 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.org

May 5, 2017 – Epilepsy Group for Parents 7:00 p.m.-8:15 p.m. Meets every 1st Thursday of the month Riverton Library Auditorium 12877 S. 1830 W., Riverton, UT.

May 11, 2017 – Epilepsy Group for All Effected by Seizures 7:00 – 8:30 p.m. Meets every 2nd Thursday of the month Intermountain Medical Center (IMC) 5171 S. Cottonwood St., Bldg. 1, Ninth Floor, Murray, UT. This month Cynthia Peterson, PT will share insights and exercises. Her presentation is Breathe, Sleep, & Kiss Your Way to Better Health & a Happier Brain. Come to learn and bring your questionsI

May 17, 2017 – Epilepsy Group for All Effected by Seizures 6:30 – 8:30 p.m. Meets every 3rd Wednesday of the month SLC Main Library 200 E. 400 S., SLC, UT (2nd floor conference room).

May 24, 2017 – Epilepsy Group for Teens 7 p.m. Will meet the 4th Wednesday monthly at the West Jordan Library, 8030 So. 1825 W., West Jordan, UT. There will be two teachers overseeing this group. Come to enjoy an activity and meet other teens with epilepsy.

May 25, 2017 – Epilepsy Group for Women Only 7:00 – 8:15 p.m. Meets every 4th Thursday of the month SLC Main Library 200 E. 400 S. (3rd floor conference room)

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THE BRAIN INJURY ALLIANCE SUPPORT GROUP for ADULTS MEETING NOTES

Tuesday, April 11, 2017

Sanderson Community Deaf Center located 5709 South 1500 West, Murray, UT 84107

After a variety of yummy pizzas to choose from, we played Easter Bingo and then regular Bingo. The winners were offered an assortment of Spring prizes to choose from. Thank you Jennifer Gee and Beth Cardell for doing a great job directing this group. For more information call Jennifer (801) 468-0027 or Beth (801) 585-5511.

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CAREGIVERS EDUCATION MEETING NOTES

 Thursday, April 20, 2017

Intermountain Medical Center 5171 S, Cottonwood St., Bldg. 1 Floor 7 Murray, UT  84107

Lauri Schoenfeld gave an excellent presentation on embracing fear to move forward. She addressed what holds us back and how to overcome it so we can be our best selves. She was positive, fun and energetic. Her four tips included:

1. Recognize your fear and call out to it. Ask yourself:

• What happened to create this fear?
• How is it holding you back?

2. Face your fears. You have to surrender them and become willing to create a different reality. Write down your truths. For example, mine are being a child abuse survivor, scoliosis survivor, a writer, speaker and a mom. Face your fears by doing the following:

• If you’re afraid of speaking, go speak.
• Encourage yourself to do one scary thing each day.
• Courage, confidence and even fearlessness are the result of facing, embracing and dancing with fear.

3. Learn to love yourself and appreciate all that you are. Six suggestions on how to do this are:

• Motivational videos
• Gratitude journal
• Positive affirmations
• Take time out to breathe
• Read uplifting books
• Get an accountability/support buddy
• Surround yourself with people who can relate to you and the things you’re going through

4. Be present and realize that this is your life. Why are you waiting? Why not now?

To read the presentation in full see: https://unitingcaregivers.wordpress.com/2017/05/09/embrace-your-fears/

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Notes from Greg Nordfelt, MBA & TBI Survivor

SURVIVORS EDUCATION MEETING NOTES

 Thursday, April 20, 2017

Intermountain Medical Center 5171 S, Cottonwood St., Bldg. 1

Dr. Cara Reddy, Directory of Neuro Rehab, IMC, gave an informative presentation on brain injury and fatigue.

Dr. Reddy is from Pittsburg where she spent 15 years in physical medicine. She and her husband decided to move west to advance their careers. They have two children, 10 and 15 years old. Dr. Reddy follows the TBI Model System, national leaders in TBI research and patient care.

After a TBI (Traumatic Brain Injury), survivors usually have more than one type of fatigue:

• Physical – I’m tired and need to rest.
• Psychological – I just can’t get motivated to do anything and I’m depressed.
• Mental – After a while I just can’t concentrate anymore. It’s hard to stay focused. My mind goes blank.

Dr. Reddy indicated that most of her TBI patients have fatigue. Their mornings are easier to handle than late afternoons. Fatigue usually hits hard in the evenings. She said its not like having a broken leg that heals and then you’re better. People say, “You look better so why are you so tired?” Patients say to themselves, “I look okay. Shouldn’t I be okay?”

Fatigue affects brain injury patients differently. For example:

• some can’t fall asleep
• some sleep all the time
• some get over stimulated doing taxes
• some get over stimulated at the grocery store
• some get over stimulated at family parties
• some are anxious

TBI brains don’t run as efficiently as they used to. On good days brain filters run really well. On bad days they don’t and that’s when the brain injury impact becomes extremely evident. Everything is all of a sudden amplified and loud! Conversations from others appear to be YELLING, everything is NOISY, and sounds coming from the street, hallways, offices and diners are CONFUSING! To top it off, what’s left of our working brain muscles get tired easily.

Dr. Reddy said when your brain is fatigued, its your brain’s way of saying “you’ve had enough”. Stop, you’ve had enough and its time for a brain rest.

She advised, “Don’t push your way through it. You’ll have to decide overtime what things are worth paying the price for and what aren’t. But, you will pay the price later. Sometimes it will take several days or weeks to recover.”

 Fatigue is the feeling of exhaustion, tiredness, weariness or lack of energy. The most important routine in getting a good nights rest is picking a consistent time to wake up in the morning. She indicated being consistent in waking up and choosing a relaxing hour routine before bedtime will enhance sleep. Sleeping soundly will fight the fatigue battle. Dr. Reddy said she sleeps 9 hours a night to build up energy stores.

Don’t use TV, cell phones, iPads and other electronics 1 hour before going to bed. Melatonin is the natural chemical the brain uses to detect when its time to go to sleep and wake up. When we use electronics, the brain detects that its not time to go to sleep.

Dr. Reddy indicated, “I’m not a fan of sleep medication.” She reiterated sleep drugs should not be used unless they are absolutely necessary. She is okay with melatonin supplements occasionally until you get into a pattern when you don’t need them anymore. If it takes more than a half hour to fall asleep, get out of bed. Bed should be a place for sleeping.

Use mindfulness and meditation if you are having problems sleeping. Train yourself to sleep. Its okay to read before sleeping if its relaxing and not stimulating. If you need naps during the day, take them 30-40 minutes at a time.

She shared two handouts, Fatigue and Traumatic Brain Injury plus Traumatic Brain Injury and Sleep, by BrianGreenwald, MD and Kathleen Bell, MD and Model Systems Knowledge Translation Center. See http://depts.washington.edu/tbicomic

Thank you, Greg, for sharing your notes!

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BIAU 5K Run, Walk & Roll

Date: May 20, 2017

Time: 8 am

Place: Liberty Park – 650 E. 1300 S., Salt Lake City

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                              USEFUL WEBSITES:

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

http://www.tbicommunity.org (online educational programs)

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.

 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)

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

http://www.unitingcaregivers.wordpress.com (caregivers sharing stories, tips and thoughts)

http://www.facebook.com/UTteensupportgroup (social interaction and the exchange useful resources)

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Embrace Your Fears

A good friend, Lauri Schoenfeld, spoke at our caregivers group on April 20, 2017 at the Intermountain Medical Center (IMC) in Murray.  She gave an excellent presentation on embracing fear to move forward. She addressed what holds us back and how to overcome it so we can be our best selves. She is positive, fun and energetic.

Lauri is a wife, mother of three, child abuse survivor, scoliosis survivor and has dealt with massive depression. She revealed four tips to help us overcome our fears to enable progression. 

Written By: Lauri Schoenfeld

1. Recognize your fear and call out to it. Get clear what you’re afraid of. It can be anything. A lot of times our fears are like an onion that has multiple layers. Is it spiders, clowns, natural disasters, death, being betrayed, getting too close to someone, loss, or rejection.

• What happened to create this fear?
• How is it holding you back?

If you’re going to let go of fear you have to recognize it first. It’s called gaining consciousness. When you start to feel yourself getting a little anxious or fearful, stop and take notice. Think to yourself, “Oh, here it is. I’m starting to get freaked out.” Then instead of reacting on your instant emotion, breathe and see what’s going on around you that could be creating this element for you. Watch how your body reacts to the situation for future understanding. By doing this you start to disengage from the fear as the ultimate reality. It helps you to realize that you are NOT your fear.

Fear is like a fire alarm alerting you to check something out. It propels us into action. This is good, not bad. We need this. Julia Cameron says, “Fear is not something to meditate and medicate away. It is something to accept and explore.”

Elizabeth Gilbert, author of Eat, Pray, Love and Big Magic, says that when she’s writing and feels fear sit on her shoulder, she acknowledges it and says, “Thank you for worrying about me today, but I don’t need you” and then she continues working. She doesn’t allow fear to control her choices or future because she is aware that she needs fear at times, but at other times she does not.

The ego is the part of your mind that stays focused on the past. It feeds you all the time with messages like “Watch out. It’s going to happen again.” It’s a sly trick which uses our fear that we will indeed hurt again. Instead of being open to different experiences and outcomes, we halt. Most of us are afraid of fear because so many of our experiences with fear have been negative. In reality, it is a very positive and useful tool.

2. Face your fears. You have to surrender to them and become willing to create a different reality. Your life will not turn out differently unless you do something different.

• What are your truths? (Example: Mine are being a child abuse survivor, scoliosis survivor, a writer, speaker, and a mom.)
• Write down your truths and start peeling back the layers of the onion one step at a time. Don’t try to take it all at once as your truths are going to be deep, hard and emotional. Be gentle with yourself as you unfold each layer.

• If you’re afraid of speaking, go speak. If you’re afraid of snakes, pet one, read a book about one or go to an aquarium and stand in front of the tank.
• Encourage yourself to do one scary thing each day. It doesn’t need to be large. Every step forward is something to be proud of.
• Courage, confidence and even fearlessness are the result of facing, embracing and dancing with fear, looking it straight in the eye and having a partnership with it.

3. Learn to love yourself and appreciate all that you are. Once I began nourishing myself, the fears I felt didn’t seem to control my life anymore. I began to have clarity on how to handle tough situations and challenges with more grace, patience and positivity. I began taking charge of what I wanted in my life.

Ideas that work for me:

• Motivational videos – Brene Brown, Elizabeth Gilbert, and Tony Robbins are a few of my favorite speakers. Check out TEDTalks.
• Gratitude journal – No matter how tough things feel, there’s ALWAYS something to be grateful for. Looking for those things gives us the opportunity to see that we can indeed find beauty even in the darkest moments.
• Positive Affirmations – Write five things that you want to start shifting in your mind in a positive fashion. One positive thing per card. If you have negative internal dialogue that you don’t think you’re very smart, write on your card “I’m Smart.” Use reverse psychology and say these five affirmations EVERY SINGLE DAY. It’s important to say those five things like you mean it.
• Take time out to breathe – I call these moments “Lauri Time.” Depending on the week, sometimes I can do an hour or sometimes its fifteen minutes, but do something that calms your spirits, is enjoyable, fun or creative. Whatever you need in that moment, give it to yourself. You deserve to be treated with gentle loving care too. Write a list of twenty things that you really like and once a week, treat yourself to one of those things.
• Read uplifting books – There are so many to check out. Chicken Soup for the Soul books are some of my favorite. Form a book club with a group and read a different inspirational book each week.
• Get an accountability/support buddy – It’s important to find someone you can share your progress with. Every step, whether it’s big or small, is important to acknowledge.
• Surround yourself with people who can relate to you and the things you’re going through – Having this support system and team will help to keep you grounded, supported and appreciated.

4. Be present and realize that this is your life.

If you were told that you had six months to live, would you live in the present or the past?

What kind of things would you do? Travel to a dream destination, swim with dolphins, spend more time with family, start taking a class you never allowed yourself to do?

Why are you waiting?

Why not start now?

Put on your shield and cross the monkey bars. If you fall, get up and try again until you’re on the other side. You are NOT your fear! You’ve got this.

Lauri and I connect through writing groups and conferences. For more articles by Lauri check out, https://thinkingthroughourfingers.com/. Type Lauri Schoenfeld in the search bar. She’s written many articles for that website.

Thank you Lauri for sharing your tips on how to embrace fear to move forward.

Related Articles:

https://unitingcaregivers.wordpress.com/2015/08/27/overcoming-fear-of-failure/

https://unitingcaregivers.wordpress.com/2015/07/12/feel-the-fear-and-do-it-anyway/

https://unitingcaregivers.wordpress.com/2015/01/21/five-ways-to-overcome-fear/

https://unitingcaregivers.wordpress.com/2014/07/08/overcoming-fear/