A Caregiver’s Button Box

Do you need ideas on how to replenish, recharge and renew as a caregiver? This month at our caregiver’s support group, Kerrie Neu  gave us lots of ideas. She agreed to let me share them here. With her 19 years of caregiving experience she discussed how to find joy among the challenges. Recognizing that every situation is different, these are some of the points she talked about.

noone@graniteschools.orgWritten by Kerrie Neu

“Just like my grandmother’s button box, we have to find the right button that fits the situation.  What may fit with one person may not fit another. Don’t feel guilty if you try something that other people like to do, but it just doesn’t bring you joy.  It’s okay.  I once attended a quilting class that many of my friends love.  I see their excitement and love their quilts.  However, the first month I went I stressed so much about trying to get my block ready for the next month, that I finally realized this was causing me more stress than joy.  For me, it was not the right button. Instead of acting like Cinderella’s wicked stepsisters who tried to make the glass slipper fit, we can simply find another shoe. We don’t have to fit the shoe in order to find joy and a happy ending, we can find the shoe that fits us and our situations.

escape​Let’s talk about some buttons then. First of all, Brenet Brown talks about buttons we have to be careful of. These are the easy buttons or escape buttons that we use to numb and not think about stress. Often they are self-destructive and don’t replenish us. We may think they momentarily help us forget or be happy, but in the end they usually don’t. For me, one of those escape buttons is TV binge watching. I find when I binge watch I ended up becoming cranky with my family. The TV shows themselves aren’t bad, but what I do with them does not nourish me. So I have to be careful of how often I use those easy buttons.

Neu CarsOn the flip side, Brenet Brown talks about reset buttons, or what I called recharge buttons. These are things that we can do to recharge and replenish ourselves. As caregivers these are critical in order to help us be able to continue to give to our loved ones. We talked about the lesson learned from Lightning McQueen in the movie Cars. When he chose to skip his pit stop in the race at the beginning of the movie, he suffered the consequence in the last lap when he blew two tires and ended up at the finish line with his tongue hanging out and his car in sad shape. He had to learn the lesson of working with others and taking time for maintenance. As caregivers, we must regularly take time to find joy and renew ourselves.

There are many ways to recharge. Sometimes we can do little things that only take moments like drinking a glass of water, breathing, watching wildlife, enjoying nature, watching a child, or reading a poem or inspiring quote. Other times we carve out a little more time to connect with a friend, take a walk, play a game, read a book, or create something. Periodically, it’s also good to plan for some extended time to get away and visit with family, attend a conference, or take a vacation. It’s important to find a balance in our life because we cannot give from an empty cup.  ​

Nue Bike TourOver the last 19 years, we have explored many things to see what brings us joy.  Some of our explorations were quite successful, like our bike trip to the Hiawatha Trail in Montana. Others were not so successful, like our bike tour of London.

Nue Bike Tour 1In each case, though, we learned something important and kept exploring. Never give up. Just this year we discovered that Laurent loves to listen to audio books and to do puzzles. Sometimes it takes a little thought, creativity, and extra planning to be able to do something with the one you’re giving care to, but in the end it is so worth it.

Neu Joy​Wes Stafford, former president and CEO of Compassion International said, ‘Joy is a decision, a really brave one, about how you are going to respond to life.’ Life’s hard. Choose joy anyway.”

My take away from this presentation is to be mindful of the escape, easy or numbing buttons which take me nowhere. Instead, look for the creative buttons that replenish, recharge and renew me as a caregiver. The buttons which work for me may be different from the buttons that work for you. What activities bring you joy? Writing is one of mine.

On Thursday, I will post more ideas Kerrie shared with us. You are bound to find some new buttons to try. 

To see the full presentation slides, click here.

To read more from Kerrie Neu see neusounds.com

 

 

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Daddy’s Girl

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Me at age two

As a child I heard Mom say, a time or two, I had Dad wrapped around my little finger. I was the only child out of their five that he witnessed the birth because way back then fathers were not allowed in the delivery rooms at the hospital. I suspect I didn’t want him left out, so my delivery was at home.

It all started after my grandparents came to take my sister, Rosanne, home with them for an overnight stay. They did this often, taking turns with each grandchild. After they left, Mom started having strong contractions so Dad called the doctor and told him they were on their way to the hospital. Because of the pain, Mom struggled to walk to the back door towards the garage. Dad rushed ahead to drive the car out of the unattached garage closer to the back door. When he got back in the house to help her to the car he realized her water broke and the impatient and determined baby was already on its way. He ran to the phone to call the doctor again and heard the television. Realizing there was only a stairway between where they were upstairs in the kitchen and where my two brothers were downstairs in the T.V. room added concern to this already stressful situation. Dad hollered down the stairs, “No matter what, you boys do not come up these stairs!”

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Rosanne, Mick, Me & Dad

Mickey, age seven and a half and Donny nearly four, paid little attention to the hustle and bustle at the top of the stairs. Fortunately, they were more interested in the show than the arrival of a new baby, so it was easy to obey their father’s order.

By the time the doctor got to our home I had already arrived. What an entrance for a nine pound baby! I wish I could remember it… What I do remember is being referred to as their “kitchen baby”. Depending on the day, or the mood, I was amused at the thought of coming into the world in this unusual way, or completely embarrassed.

04-FamilyMurrayHomeI’ve been told Dad often teased Mom during their four pregnancies that he had delivered lots of calves on the farm, so there was no need for a doctor. I guess I was listening.

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Don, Me & Dad

I’ve always had faith in Dad’s abilities. He can usually fix anything I break and is willing to help me build whatever my mind dreams of.  I enjoy discussing ideas with him because he doesn’t tell me I can’t accomplish it, but rather points out the difficulties and then helps me find solutions to make it work out. He’s taught me to work hard for what I wanted and not to be afraid of failure. If the intended outcome didn’t occur on the first, second or third attempt, you just keep on trying and learn from your mistakes. His wisdom, experience, encouragement and optimistic attitude greatly benefit’s my life.

Dad & I Snowmobiling

1980, Dad & I

Dad and Mark

1980, Dad & Mark

Dad showed me how to have fun by providing many outdoor adventures. Horseback riding, waterskiing, snowmobiling, four-wheeling are just a few of my favorite things to do with him. He instilled in me a love for the outdoors.

Dad playing horse

Enter a caption

In addition to being adventurous and hard-working, he is generous with his time and shares everything he has. He cares about people, especially family. He loves my children and husband just as deeply as I feel he loves me.

Dad’s endured much heartbreak, but you’d never know it by his cheery nature. His mother died just a couple of weeks before his twelfth birthday and his father’s death was ten years later. Years passed and a sister was sadly murdered and he was the one who had to identify her body. He’s borne family and business disappointments without bitter feelings. He’s dealt with many health issues with no complaints. His life demonstrates how to accept the things you can’t change with calmness, while having courage to change the things he can. Without calling attention to his hardships, I recognize them and have learned a lot from the way he quietly handles his trials.

Many years have passed since my rare entrance into this world and I’m grateful for the bond it made between us. I appreciate the model he’s given me to pattern my own life and thankful for the love and support he gives me. Dad, I love you!

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2008, Mark & Dad on his 80th birthday party

Happy Father’s Day to two of my favorite men!

 

June 2017 Newsletter

The effects of brain injury vary and can be complex. Putting the puzzle together is easier with the help of others. For this reason I’ve gathered pieces of information on this month’s support groups and therapy services offered in the Salt Lake Valley. I also included notes from last months meeting’s in case you missed it. Check out the upcoming events and mark your calendar for the BIAU Annual Conference. Also included are links to useful websites. If you have an activity, announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com.


reminder

FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

June 7, 2017 – Aphasia Support Group at 7:00 p.m. Meets the 1st Tuesday monthly at Brookdale, 76 South 500 East, SLC, UT. (Parking in the rear of the building.  Enter from 100 South.)

Topic: Vision Disorders and Treatment after a Stroke by Jennifer Thomas, OTR/L Occupational Therapist. For more information, please contact Christina Nessler (801) 582-1565, Extension 5379 or Kiera Berggren (801) 585-9717.

June 13, 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. All caregivers and survivors are welcome. For more information call: Jennifer (801) 386-2195 or Beth (801) 585-5511.

June 15, 2017 – Caregivers and Survivors Education Group will meet separetly this month, 7-8 p.m. Meets every 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S., Cottonwood St., Bldg. 1 Murray, UT 84107.

noone@graniteschools.orgCaregivers Meet in the conference room on the 7th Floor. Topic: A Caregiver’s Button Box, Finding Ways to Recharge, Replenish and Refresh. Start thinking of the little things that bring you joy to be able to share with each other.

Our presenter, Kerrie Neu’s husband, Laurent, is a brain injury survivor from a motorcycle accident in 1998. Kerrie will share ideas on ways to recharge and nourish ourselves. Helpful insights come from nineteen years of experience as a caregiver and a mother of two children, who were small at the time of the accident. She works for Granite School District as the Dual Immersion Specialist, coordinating and coaching teachers in Spanish Immersion, and is working on her Master’s degree in Spanish Language Pedagogy (teaching methods).

fun in sun

Survivors Meet in the conference room on the 9th Floor.  Topic: Fun in the Sun, presented by National Ability Center. Come learn what adaptive sports are available.

June 27, 2017 – University of Utah Brain Injury Support Group 7 p.m. Meets every 4th Tuesday monthly at Sugarhouse Health Center, 1138 E. Wilmington Avenue, SLC, UT 84106. Call Ryan Pello for questions at (801) 581-2221


Please Note
june-clipartFREE 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


Epilepsy

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

June 1, 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.

June 8, 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.

June 21, 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).

June 22, 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)

newJune 28, 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.


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THE BRAIN INJURY ALLIANCE SUPPORT GROUP for ADULTS MEETING NOTES

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

Tuesday, May 9, 2017, we had a great time at the horse races with paper money. 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.


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

SURVIVORS AND CAREGIVERS EDUCATION MEETING NOTES

Matt-Head-Shot

Thursday, May 18, 2017, Matt Townsend gave an entertaining and poinent presentation on relationships.

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.

For a full synopsis of what I learned from Matt and a YouTube video, see my article, The Starved Relationship, or https://unitingcaregivers.wordpress.com/2017/05/25/the-starved-relationship

Dr. Matt Townsend has many podcast, YouTube videos and sponsors The Matt Townsend show on BYUradio. Entertaining insights on improving relationships for free. He’s also founder the the Townsend Relationship Center. For more information see Matt’s Website: http://matttownsend.com/


MassageUniversity of Utah Brain Injury Support Group located at Sugarhouse Health Center 1138 E. Wilmington Avenue, SLC, UT 84106.

Wednesday, May 23, 2017 topic was on the Benefits of Massage given by Molly Sullivan, LMT. Ryan Pello organizes this meeting. If you have questions by call (801) 581-2221.


Upcoming Events

BIAU Family & Professionals Annual Conference

Date: Friday, October 13, 2017

Time: 8am – 5pm

Place: Davis Conference Center, 1651 No. 700 W. Layton, UT 84041


Bright Ideas

                              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.

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 Laptopsstories, tips and thoughts)

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


Thank you for reading

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, please email Barbara@UnitingCaregivers.com. I will add you to the newsletter email list and send you the link monthly.

If you wish to discontinue send a statement, “Unsubscribe to Newsletter” and I will remove your email address.

In Remembrance

Memorial Day1Cemeteries 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

Peggy Dave 2014My 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.

Martin's last family picture

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.

Martin's KidsA 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.”

Martin GrandkidsIn 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 49th Wedding Anniversary! This is a memory I especially cherish since we didn’t make it to our 50th which would have been next month.

Dave & Peggy 1967As 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.

***************

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

Matt-Head-ShotLast 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.

Townsend Starved StuffWhen 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

GandhiWe 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

5K 5 years ago

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.

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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.

VNSMark 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.

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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.

5K train3We 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.

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

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