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.

124 (2)

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.

IMG_1561

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.

5K train7

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

5K train8

 

April 2017 Newsletter

PuzzleI’ve gathered pieces of information on this month’s support groups and therapy services offered in the Salt Lake Valley. In case you missed last month’s meeting, I’ve attached notes along with upcoming events you’ll want to put on your calendar. Also included are links to useful websites. If you have activity announcements or other information you’d like to share in this newsletter, please email Barbara@UnitingCaregivers.com. By assisting others with their puzzle, we get a clearer view of our own.

Mark this

FREE SUPPORT GROUPS AVAILABLE IN THE SALT LAKE VALLEY

April 11, 2017 – Brain Injury Alliance Support Group for Adults, 6-8 p.m. Meets every 2nd Tuesday monthly at Sanderson Community Deaf Center5709 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) 468-0027 or Beth (801) 585-5511


April 20, 2017: Caring For the Caregivers Group, 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

LauriThe presenter for this night is Lauri Schoenfeld. Her topic is Embracing Fear to Move Forward. Lauri is a wife, mother of three, writer, child abuse survivor, scoliosis survivor and has dealt with massive depression. She will address what holds us back and how to overcome it so we can be our best selves. She is positive, fun and energetic. You’ll be glad you came.


 

April 20, 2017 – Brain Injury and Stroke Survivor Group 7-8 p.m. Meets every 3rd Thursday monthly at Intermountain Medical Center (IMC) 5171 S, Cottonwood St., Bldg. 1 Floor 9 Murray, UT  84107

Dr. Reddy

The presenter for this night is Cara Camiolo Reddy, MD, MMM. Her topic is Managing Mood and Fatigue. She is a new Neuro Rehabilitation Specialist and her favorite thing to remedy is neuro fatigue.


 

 

April 25, 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


Please Note

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

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

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

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 @ (801) 455-6089 or Utah@efa.org

April 6, 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.

April 13, 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  84107

April 19, 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)

Sorry, cancelled this month – 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)

Coming Soon

Coming Soon  May 24, 2017Epilepsy Group for Teens 7 p.m.   Will meet the 4th Wednesday monthly West Jordan Library 

 

 


 Missed6

NOTES FROM MARCH MEETING’S

Deaf CenterBrain Injury Alliance Support Group for Adults  met Tuesday, March 14, 2017 at the Sanderson Community Deaf Center located 5709 South 1500 West

This social group enjoyed delicious meatball sandwiches together. Afterwards they played board games. All caregivers and survivors are welcome. 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.

  

Caring For the Caregivers Group plus the Brain Injury & Stroke Survivor Group Thursday, March 16, 2017  Speakers: Greg and Laura Nordfelt their topic was    Nurturing Relationships After Brain Injury

The Nordfelt’s spoke candidly about their personal experiences in Greg & Laura-tableregard to family and friend’s relationships.  The turned down meals, visits and other offers of help because they were overwhelmed with their new situations and were fiercely independent, resulting in friends and family giving them the space they thought they wanted or needed for healing. This left them feeling neglected, ignored, lonely, abandoned, isolated, disrespected, unsupported and misunderstood. They overcame those feelings by reaching out to others, making new friends and mending broken relationships.

For more detail on their presentation see articles:

 What Doesn’t Kill Us Makes Us Stronger, part 1

What Doesn’t Kill Us Makes Us Stronger, part 2

Nurturing Relationships 


Upcoming Events

BIAU 5K Run, Walk & Roll

Date: May 20, 2017

Time: 8 am

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


Bright Ideas

USEFUL WEBSITES:

www.caregiver.org (online webinars for caregivers)

www.tbicommunity.org (online educational programs)

www.braininjury.com (medical, legal, information resource)

www.abta.org (brain tumor education and information)

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

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

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

 www.epilepsy.com/utah and/or 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)

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

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


Thank you for reading

Thank you for reading. I hope you 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.

How to go From Surviving to Thriving

From Surving to Thriving

My daughter, Katie, serves on the conference committee and designed this brilliant image for it. I couldn’t be more please with all the service she gives to the BIAU.

This was the theme for the 2015 Brain Injury Alliance Conference and Alison Delgado’s, is a great example of someone going from surviving to thriving. She was the keynote speaker and her story was inspiring and her advice was excellent:

“For medical personnel:

  • Know your patient and their loved ones—it will keep you motivated as you work with them, even on the tough days
  • Know their ultimate goals so that you can look beyond your own
  • Get their loved ones involved—it will empower both them and the patient

For loved ones:

  • Remain positive, even on the tough days and don’t be ashamed to lean on other loved ones-Escalator
  • Remember to take care of yourself
  • Ask questions, stay involved

Patients:

  • Suddenly, everything has changed
  • Set goals, work toward them each day, ask for help
  • No therapy is beneath you
  • It may take days, months, years—but if you keep working, you can always achieve more than what was expected

For Everyone:

  • Hope
  • Pray
  • Love
  • Believe in miracles”
2015 conference picture

2015 BIAU Conference

I loved how straight forward Alison spoke. If you haven’t joined a support group or attended a conference relating to whatever condition you or your loved one is dealing with, I highly recommend it. I’m always trying to learn how to be a better advocate and caregiver. The support groups and conferences provide good information which supports and helps families and individuals. This conference is designed for people with brain injuries, their families, doctors, nurses, therapists, educators, case managers, social workers and other service providers. The icing on the cake which comes from attending the conferences is to have the opportunity to meet people dealing with similar issues and to mingle with people who have helped us with recovery from the past. Some of whom we only see now at the conference. It reminds me of how grateful I am for those health care professionals who not only helped Mark survive, but thrive.

The Book of Life

Life is like a book

The years come and go and each one leaves me a little older with a different perspective on life.  It’s a good time to reflect on where we’ve been, how far we’ve come and appreciate the people who have been by our side through it all.

Our 2014 chapter review:

We love and appreciate our home, which we have shared with Mom and Dad for eighteen years.  We enjoy helping each other and find comfort in having them close by. They will celebrate their 65th wedding anniversary in 2015. We’re grateful for their example and all we have learned from them.

Our son, Christopher, moved to Vancouver, WA in September. He is still working as an Air Conditioning and Heating Technician and found employment there. He is enjoying his adventure in a new city and state. He lives in the same town as his Grandma Wilson, Aunt Karen and Uncle Mark. We miss him, but we are grateful he is living close to family and the opportunity they have to spend more time together. We only wish we could be in two states at one time.

IMG_0333

Dad, Mom, Chris, Katie, Eldin, Barbara & Mark

Our daughter, Katie, and her husband, Eldin, live in West Valley, UT. Eldin works for American Express and Katie just celebrated five years with her own business, Graphic Forte, where she’s a successful graphic designer. They are very busy with Eldin being a bishop for the past 3 ½ years. It is so rewarding to watch both Eldin and Katie grow in this calling.

Katie had her cancerous thyroid and several surrounding lymph nodes removed in March 2014. She recovered well and is cancer free now. She looks great and is feeling better, which we are so grateful for.

Mark has spent his weekdays working at Ability Choice Services doing assembling work, but that contract will end this month. I’m still working as an account manager for Earthwork Property Management and appreciate the opportunity they allow for me to have a home office.

I started UnitingCaregivers.com in October 2013 and will have posted 190 articles by the end of this month. It’s time consuming, but rewarding and has far exceeded my expectations. Thoughts of what I’m going to write about are constantly dancing around in my head. I am also a part of two writing groups, American Night Writers Association and League of Utah Writers. I enjoy my association with these two groups and they’re part of the inspiration that keeps me writing.

138Another hobby is gardening. We had a great vegetable garden this year with lots of squash, corn, cantaloupe, tomatoes, peppers, onion, cucumbers and broccoli. Unfortunately, the brussel sprouts, cabbage and cauliflower didn’t do well. We also have twelve grapevines, lots of raspberry and blackberry bushes, along with two strawberry beds. Mark was a great help with canning lots of salsa, vegetable soup and grape jam. We also expanded the orchard to twelve fruit trees this year, but the trees are not producing enough fruit to bottle yet. Having one acre gives us a lot of work, but we enjoy being outdoors so it’s great.

Mark and I with Mark Fox, the award presenter.

Mark and I with Mark Fox, the award presenter.

Mark received the Survivor Award this year at the Annual Brain Injury Alliance of Utah Family and Professional Conference. It’s been twenty-three years since the car accident. He’s not only survives, but thrives and we are so proud of his perseverance, positive attitude and endurance. Mark’s mother flew in from Washington and was there for the ceremony along with my parents, siblings, Katie and Eldin. It was a day we will always remember, which extended into a wonderful weekend as Mark’s sister, Karen, and brother-in-law, Mark, flew in later that night to spend a few days with us in celebration. We loved spending time with them and enjoyed taking them to Sundance and Park City.

Mark's family celebration

Katie, Eldin, Barbara, Mark, Mark Ray, Karen & Mom W.  We’re missing Chris, Jerrie & Jon.

 

Our days have been full with work, gardening, exercise, plays, concerts and writing. No time for trips this year, but we are looking forward to going to Idaho and Washington next year to visit family.

With December coming to a screeching halt I look forward to a new chapter of happy and exciting times, but realize some sad and difficult times will be sprinkled in the mix. I’m anxious to turn the page and see what I’ll have to write about in the next chapter.

I hope 2015 brings you good health and much happiness.

The Benefits of Support Groups and Conferences

BIAU Conference

Photo from Brian Injury Alliance of Utah Newsletter BIAU 2013 Conference

I haven’t forgotten the first time I was encouraged to attend a class on understanding brain injury at the hospital. I thought, no way. I’m overwhelmed as it is and I don’t need one more thing to do. Besides I’m dealing with the effects of brain injury on a daily basis and this is not a class I want to sign up for.

I went to my first class kicking and screaming inside, I don’t want to be here! I don’t want to deal with this injury nor do I want my husband to have it. All the wishing it wasn’t so and disliking the situation didn’t change the fact that Mark had a traumatic brain injury and I had to learn to deal with it. I came to the conclusion I’d better learn all I could to help prepare me for the time he woke up from his coma. I wish I could say the things I learned in those classes made it less frightening, but I don’t think it did. However, I did find comfort in being in a room with others who were dealing with the same devastation I was and the information was helpful.

Over the past twenty-three years Mark and I have continued to go to support groups and the annual conferences. We haven’t gone every year, but when we do go we benefit from other peoples’ experiences and knowledge, as well as the resources that are shared. Now days it’s easy to look up information on the internet, but then you’re missing out on connecting with real people. Whatever health issue you or your loved one is dealing with, I hope there is a support group, classes and conferences that relate to the problem. The human experience plus the information and resources I’ve gained through these avenues has made the time invested worthwhile.

As an example, the Brain Injury Alliance of Utah had their annual family and professional conference on October 24, 2014. This year it was held at the Ogden Eccles Conference Center. The conference was full of information, with two sessions offering four classes to choose from. It began at 8 am with registration and a light breakfast. There was an hour to eat, look at exhibits from the sponsors and pick up information from the resource tables. Always a favorite is the silent auction. There were tables full of homemade items, books signed by the author and even airline tickets to bid on. The silent auction and resource tables last throughout the day and can be viewed and bid on between the sessions, with the final bidding after the second session.

This year’s conference theme was Life Will Go On. Every year the theme is different and after breakfast a keynote speaker bases their talk on the theme before breaking up into the first session of classes. After the first session there was a delicious lunch and recognition awards given to five individuals for their contribution to the brain injury community. The categories were: Survivor of Brain Injury, Family Member, Educator, Professional and Lifetime contribution.

After lunch and the awards, the second session begins. Afterwards, the final bids are collected for the silent auction. This is a favorite at the conference and all of the raised funds from the auction go to serving the Utah brain injured community.

Last, but not least, there is a panel discussion. Many people do not stay for this last hour, however, I have always found it to be very informative and I enjoy the interaction of the discussion. The panel usually consists of four to six people who sometimes are all professionals or family members to discuss the conference theme. I’m grateful for the knowledge shared by their experience and take away so much good information. I leave with renewed hope and support from the conference. On a daily basis I can be consumed with worry and overwhelmed with responsibility and my world can become inward and small. It’s helpful to get out and see others in a related situation and it always builds a desire within to reach out and help another. There is strength in numbers and encouragement that comes from being with others who are dealing with the same chronic illness or injury.

More Than a Survivor

MomDadRon

Mark and I with Ron Roskos, who received the Lifetime Achievement Award.

Over twenty years ago I was introduced to Ron Roskos, then president of the Brain Injury Alliance of Utah, a non-profit organization. The group helps community members affected by brain injury by providing resources and information to survivors and their families. They also educate the community on preventing brain injuries. They have an annual conference every fall which brings together healthcare providers, educators, families and survivors. We appreciate the information given at the conference and enjoy seeing therapist and nurses who have worked with Mark in the past. It also appears to give them pleasure to see the progress Mark has made over the years. DadsPlaqueDuring the conference lunch they award five individuals in the following categories: Survivor, Family Member, Healthcare Provider, Educator and Lifetime Achievement. Mark was nominated for the Survivor award and we were thrilled to see him receive it. A month ago I was informed Mark was the chosen nominee and they wanted it to be a surprise for him. It was hard to keep the secret as I prepared for the celebration. I believe Mark’s survivorship has been based on the support of family and invited them to join us at the luncheon. Since Mark’s mother and sisters live out of state, it took more planning and time on their part to attend. Mark’s mom flew in from Washington to be at the luncheon and his sister, Karen, and brother-in-law, Mark Ray, flew in later that evening to celebrate with us. It made for a wonderful and memorable day. Our daughter, Katie, and I wrote the following introduction, which the presenter read when announcing Mark’s award. Mark Wilson survived a Traumatic Brain Injury due to a car accident he was in with his wife, Barbara, in 1991. He was comatose for three months and hospitalized for eight months. He is wheelchair dependent and struggles with memory and epilepsy. What a great example he is, especially to his wife and two children, who were ages seven and eight at the time of the car accident. Mark demonstrates the value of perseverance as he pushes through strenuous therapy relearning to speak, write and regaining the ability to feed himself. His ultimate goal is to walk and after twenty-three years he remains hopeful. With the assistance of a walker, his wife at one side of him and a friend at the other, he practices walking at least twice a week with determination. He’ll often look at the two people assisting him and jokingly say, “This is really hard. Must I drag you both along?” He shows burdens can be lightened and joy can be spread with a sense of humor. He enjoys making others laugh with what we call “Markisms,” like telling others that the scar on his stomach from the feeding tube he had is really a second bellybutton, which makes him “twice the man.” Despite many obstacles, he chooses to be happy by looking for the positive in every situation. He is forgiving and thoughtful towards others. Mark is patient and never demanding. He enjoys being productive and looks for ways he can help. He expresses gratitude often for what he has and for the help he is given. Mark once said, “Adversity is the exercise that strengthens the muscle of character.” His muscle of character has Hercules’ strength. He’s more than a survivor – he’s a THRIVER!

Mark and I with Mark Fox, the award presenter.

Mark and I with Mark Fox, the award presenter.

I’m so proud of Mark and believe he deserves the award for the way he cheerfully handles his difficult, unexpected, unwanted and painful life. I’m blessed to be his wife and caregiver. I loved what the presenter, Mark Fox, said after handing Mark the plaque. “I have to put in a side note…I was relatively new in my career back at the time Mark had his accident and was working in rehabilitation at what is now called HealthSouth,but was then Western Rehabilitation. Mark was at the center for a long time. He had speech impairment and you really couldn’t understand anything he said. Being a young clinician and seeing how hard they work for a long time in rehabilitation with limited progress in speech intelligibility, I really didn’t believe he could ever be verbally understood. But he was always determined. Several years later I saw him at the community rec center. They were doing exercises in the pool and he said, ‘hi’ to me. I about fell over. He was so clear. So, if you get an opportunity, I strongly encourage you to have a conversation with Mark. He is a wonderful man with a wonderful family.” In looking back, I was naively optimistic about Mark regaining all his abilities, but the determination and hard work has paid off. I’m grateful for Mark Fox’s statement recognizing his continued improvement even after his rehabilitation. Gratefully, Mark has never given up and a professional healthcare provider acknowledged it. There are only a few people who have been with us from the beginning of Mark’s traumatic brain injury and they are the only ones who can fully realize and appreciate how far Mark has come. We love to surprise them and see their joy in what he has accomplished. Life can be challenging. We don’t expect it will get any easier as we age, but it’s rewarding to overcome hardships. I’m grateful for organizations like the Brain Injury Alliance of Utah which provides support, education and shows us we’re not alone in our journey.

Marks mom, Wanda with Katie

Marks mom, Wanda with Katie

Eldin with Steve in the background.

Eldin with Steve in the background.

Dianne, Mick and Mom

Dianne, Mick, and Mom

Dad,

Dad

Table setting at the award luncheon

Mom, Katie, Eldin, Rosanne, Dianne, and Mick

Missing picture of Ruth and Steve who were also there, but sitting at a different table. Don, Klint, Jerrie and Jon were unable to attend due to work. We also missed our son, Christopher, who wasn’t there due to new employment which has taken him to Washington to live:-( We love and appreciate our family and their support!

Four minute video of the Survivor Award

Mark's Family Celebration (2)

Enjoying treats and our visit  at Sundance

Weekend fun with Mom W, Karen & Mark Ray

Mark lovin his root beer

Mark lovin’ his root beer

Mark's family celebration

After a fall ride on the Alpine Loop we enjoyed a picnic at Sundance

Greg and Laura Nordfelt’s Story

Laura & Greg

Greg and Laura Nordfelt                The day before the accident.

On August 15, 2011, our friend Jimmy, my husband Greg and I were riding our Harley motorcycles along a scenic section of highway 95, about 60 miles south of Coeur d’Alene, Idaho. Greg was feeling sick, from food poisoning contracted at a diner the night before, but he insisted that we continue on with our planned trip. I was on my own Harley behind Greg and saw him pass out and crash into a bed of lava rocks at the side of the road. I anxiously ran to him and gave first aid until the Emergency Medical Technicians (EMT) came. I’ve had EMT training and my skills took over until the professionals arrived. Greg was transferred by life flight to the nearest hospital in Coeur d’Alene.

Even though Greg was wearing a helmet he suffered a severe brain injury, a crushed leg and had deep open wounds from the impact. We spent 11 days at the hospital in Coeur d’Alene until he was able to be flown to the Neuro Rehab at Intermountain Medical Center (IMC) in Murray, Utah, which was closer to home and family. He was there for a couple weeks before coming home. He worked extremely hard to get back to work as a banker full-time over the next 5 months (starting initially at only 2 hours a week).

The left side of Greg’s brain was damaged beyond repair and the right side had to learn to take over the tasks of reading, writing, talking, walking, banking etc. This was difficult for both of us because it effected his personality and how we related to each other. Greg read a book called “My Stroke of Insight” by Jill Taylor, which explains in detail a neurologist’s loss of her left side of the brain function during a stroke. She had to cope with a complete driven right brain for all her activities.  This book had a tremendous impact on both of us.

Laura & Greg kissingOur marriage has been very different since the accident and not what I was prepared for. I’ve had to cope with his strange changes and sometimes I say to him, “Who are you and what have you done with my husband?” I wouldn’t say I’m a patient person and our six children can probably attest to that, but I have been extremely fortunate to be able to take one day at a time.  After all, isn’t that what marriage is all about?

Greg and I were very “fly by the seat of our pants” kind of people . . . always ready for the next adventure, whether it was motorcycles, riding our bicycles down hills at 60 mph, hiking where we maybe shouldn’t be hiking, jumping off cliffs, extreme diving, etc.  NOT so much now.  We are discovering new adventures in less dangerous ways.

I was not prepared to be a caregiver for my husband. My EMT training seemed to help some, but as a mother, being a caregiver came naturally. However, the thought of taking care of an adult TBI survivor long term was extremely hard, especially when there was no one taking care of me.  Brain injury patients are constantly surrounded by doctors and therapists. They are initially monitored and recorded and any progress is celebrated.  As a caregiver, I was left completely on my own to figure out my new life and how to make it work. I felt like I was set up to fail! There were no guidelines, no manuals and no pats on my back.

I was also dealing with Post Traumatic Stress Disorder (PTSD) from the accident. I tried personal therapy a couple of times, but couldn’t seem to find the right therapist for me.  I looked for caregiver groups, but none were readily available.  Within a year after Greg’s accident I asked to join the board of directors at the Brain Injury Alliance of Utah (BIAU).  It was my attempt at giving back to the TBI community. I was motivated specifically to start a “Caregivers Support Group” that was not available to me during Greg’s recovery. It was extremely important to me to help other caregivers that were lost like me. I also felt it would help my own healing while supporting the daily living issues of other caregivers. I felt that working together in groups would be therapeutic and healing for all of us.

Now we have our very own Caregiver Group monthly, at Intermountain Medical Center in Murray, Utah. We meet in conjunction with the Survivor Group on the third Thursday, at 7:00pm. Together we can learn how to cope, and find helpful resources. A big shout out of thanks goes to Kim Kirkham at TOSH for all her help launching this group and for her continued support. Greg has also been supportive and has helped me find a way to support TBI caregivers.

Monthly updates concerning the caregiver support group can be found on our facebook page: https://www.facebook.com/pages/Caring-for-the-TBI-Caregiver/705869382781093  Please press the “Like” button to get updates.

You can listen to Greg and Laura recount their experience and tell their amazing story.