The Value of Occupational Therapy

Wanda OT1

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 OT

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.OT quote

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

BirthdayWithMomAndSisters

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.

ToyAirplane2

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.

IMG_1315 (2)

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.”

MothersDayImages1To all the wonderful women in the world who benefit lives in a positive way!

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.

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

I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience. They spoke last week at a combined Survivor and Caregivers Support Group sharing what they’ve learned.

Written by Laura Nordfelt

Greg & Laura-landing pad.pngThe medical helicopter which came to life-flight Greg was very old and small. In fact, half of his body was in the nose of the aircraft. The ventilator was broken and one of the paramedics was trying to bag Greg (it seemed sporadically) while trying to preform many other tasks. I mentioned to her I was an EMT and asked her if I could do the bagging for her. She agreed and I continued on every 4 seconds like I was trained to do in school. The flight seemed to take forever (I worried we were going to Canada!) and only looked out the window once or twice. When we started to land, all I saw was a “tough shed” structure on top of a roof.  Medical people ran out to get Greg and down an elevator we all went and into the Emergency Department. By the time I felt comfortable enough to leave his side, I asked, “Where are we?” When they told me Coeur d’Alene, ID, I told them I needed to take Greg to Salt Lake City, but the doctor told me he would not survive the flight. I slumped down against the wall and lost it.

I made mistakes. I am fiercely independent and a stubborn woman. In the beginning I turned family and friends away. I said “don’t fly up here, I’m fine”. Then, “we don’t need meals, I’ve got this covered.” Not only did I watch him crash, but I kept him alive for 45 minutes until the paramedics arrived. I was a mess! I had post-traumatic stress disorder (PTSD) and I was in a cocoon as much as Greg was in a coma.

An Executive Vice President from Greg’s work came to the hospital to visit and I cut her off down the hall and visited with her. There’s no way I was going to let her see the condition Greg was in. I was so worried that he was going to lose his job. I posted a sign “Family Only” on Greg’s door at the hospital. Visitors had to check with me or the nurse before entering his room. I took the phone off the wall and put it in a drawer and took his cell phone away from him. He wanted to call his office to “check on things” all the time. I was worried he’d say something inappropriate.

Greg & Laura-tableWhen Greg left the hospital, I sent out a message on Facebook telling our friends that Greg needed time to rehab and recover so if they could wait to visit, that would be much appreciated. I really only meant it for acquaintances, thinking our close friends wouldn’t take it to heart. A few months down the road some dear friends of ours called and asked if they could bring dinner and come for a visit. I was thrilled! Frankly I had wondered why they hadn’t called sooner.

While we were setting up dinner, she told me they would have come sooner, but wanted to respect my wishes of giving us our space. I said, “Oh, I didn’t mean you guys!” I realized then that I had alienated the very people Greg and I needed the most. Greg’s co-workers later expressed the same emotions. If only they’d known what to do. They wanted to help in any way, but we pushed them away.

I own a business and I needed someone to sit with Greg or run him to therapy appointments, but I said “NO, I’m fine”. I really wasn’t fine, but I wanted to be and I didn’t know how to let them help. Most of it was my fault, but some of it was not.  Caregivers leave the hospital with their tool bags pretty much empty. I had to earn my hammer, saw and screwdriver the hard way. I felt neglected, isolated, abandoned, ignored, lonely, unsupported, disrespected and misunderstood. When I needed family and friends the most, they were all gone.

Greg & Laura-walkIn order to heal, I had to get outside of myself. I started the first ever Caregiver Group in Utah as a survival mechanism. As much as I wanted to give back to the community, I needed other caregivers. As I spent time listening to their stories, I felt not so overcome by my own problems. I felt empathy and compassion. When “in the moment” of caring for caregivers and survivors, their hurdles felt more important than my own. When we get caught up in these “feel good” experiences, we don’t need anything in return. I also joined the Board of the Brain Injury Alliance of Utah. This is my passion now!

Another way I healed is a couple of years ago a friend asked me to join her book club. I love to read, but I was scared at first because I only knew her and no one else. I went one time and almost did not go back, but forced myself to hang in there. These women are now very near and dear to my heart. I’ve read many wonderful books which I never would have picked up on my own. The social setting has its benefits as well. We trade off hosting dinner so I’m learning new recipes. I work on my listening skills and forget my problems for a few hours. By the very nature of getting together with women, it forces me to get out of my pajamas. Therefore, I get semi-dressed up, put on my makeup and lipstick and wear my fun jewelry. All of this is very good for my soul!

Thank you, Laura, for sharing your experiences and what you’ve learned. Friedrich Nietzsche was right, “That which does not kill us makes us stronger.”  I see that in Greg and Laura’s life and hope you see that truth in your own life.

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

A German philosopher, Friedrich Nietzsche, actually said it more eloquently: “That which does not kill us, makes us stronger.” I thought this title was fitting for the couple I’m highlighting this week. I met Greg and Laura Nordfelt at the 2013 Brain Injury Conference, just two years after Greg’s motorcycle crash. I’ve enjoyed our friendship and watching this couple get stronger through their traumatic experience

Written by Greg Nordfelt

Greg headshotI am a three time Traumatic Brain Injury Survivor (TBI). By looking at my picture, you’ve already noticed I have a huge forehead. Many have told me I could rent space out on it as a billboard. Well it’s also a magnet to immovable objects. That’s why I’ve had three TBI’s. The first was in high school when I was skiing at Alta. I fell on a mogul run and hit the post of a sign that ironically said, “SLOW SKIING”. I hit it head on with the left side on my forehead. The second time I was racing heavy bicycles in England downhill on the wrong side of the road. I didn’t make the turn at the bottom and my front tire hit the guard rail. I hit a lamp post head first, again with the left side of my forehead. The third time I crashed my motorcycle into a bed of Lava Rocks and, again, I hit them, you guessed it, with the left side of my forehead. I am an adrenaline junky, but unfortunately my forehead had a crazy attraction to all of those immovable objects which eventually caught up to me.

Last August was our 5 year anniversary of my accident. We drove to Coeur d’Alene, this time in a car, to meet with Kootenai Health’s executives, two surgeons, and the critical care team that save my life. This was my first time to meet them consciously. I wanted to thank them individually, face to face, and hug them so they would know how grateful I am for what they did for me and my family!

Greg & Laura-Gala

2016 Greg & Laura, Festival of Trees

The press showed up and articles were written. We were on the cover of magazines. They asked us to be their “Spokespeople” for their Festival of Trees. It’s a black tie fund raising Gala.  They asked us and we agreed to help them set a donation record. They were expanding their Emergency Department and Operating Room, the two areas that saved my life. They called us the “talent”. Put us in wardrobe and makeup. They ran out of spray for my face and said I’m “Ruddy” and “Scaly”! I’ve crashed into too many immovable objects and my “talent” and “cover” days are over! We helped them set the record they asked for and raised over half a million dollars!

My primary focus after I got home from the hospital was keeping my marriage with Laura because the TBI divorce rate is huge at 70%. My second focus was keeping my family together. Everything else I had was intently driven into relearning how to speak, read, write and walk again in Neuro Rehab. I worked harder than they asked me to so I could get my job back!

Unfortunately, I lost most of my friends and communities. They became the casualties of brain injury. As a survivor, I ruminate, isolate, avoid loud noise, bright colors, confusion, strangers and crowds. I fatigue easily.

As a result, I was no longer the late night party animal I used to be. I wasn’t as apt to go on long road trips on a whim. I avoided situations where I would get over stimulated and fatigued – the exact opposite of my old self.

I woke up one day after fighting to recover and realized I was a newer version of my old self and I had lost the human connections I once had. The good news is our neuro rehab physicians and therapists not only helped me remap my brain, but gave me tools which helped me nurture my most valuable relationships. Now it was up to me to reach out to friends and family and hold fast to the human connections that were dear to me.
On my second outpatient speech therapy session I learned my biggest lesson after my accident and it had nothing to do with learning how to talk again.  It had everything to do with being taught how to nurture the most important relationship I had – my marriage! I showed up complaining about having my first disagreement with Laura since the accident.  Remember I didn’t have my wits about me yet and could barely speak, so disagreement was a huge stretch!  I sat down across the table from Kim with a huff.

Greg & Laura-landing pad.png

2016, Greg & Laura Coeur d’Alene Hospital Landing Pad

“What’s wrong?” Kim asked. I tried to explain what happened the night before with Laura. After a few minutes she said, “Greg I’ve heard enough. Where’s Laura?”

“In the car,” I said.

“You need to stand back up in your walker, walk to your car and ask her nicely to come and stand next to you.” Then say these words to Laura.  I’m sorry.  I love you.  Thank you for all you are doing every day to take care of me and then HUG her.

This was the most important thing I learned in all of my therapy, by far!  It was an awakening moment for me. I learned that day I was a traumatic brain injury survivor and others were working their butts off to take care of me.  And, I need to thank them – often.

Thank you Greg for sharing and to your therapist, Kim, who told you what caregivers need to hear often. You are an inspiration and definitely stronger by your experience!

Greg had a 35 year career with Zions Bank and was Senior Vice President before the accident. Now he is a motivational speaker and a professional member of the National Speakers Association. The year 2016 was a big year for Greg as he was the Utah Speech and Hearing Association’s (USHA) Ambassador was awarded Survivor of the Year by the Brain Injury Alliance of Utah (BAIU) in October. He is a mentor and volunteer with Neuro Rehab patients and caregivers at IMC and is writing a Memoir expected to be published in 2018.

 To see Greg’s website visit: www.gregnordfelt.com

On Wednesday, Laura’s will share her perspective.

Where to Find Support

Support gearsWhen Mark was in a coma twenty-six years ago, the hospital provided a class once a week to discuss the effects of traumatic brain injury. Hating the position I was in and the information I now needed, I continued to drag my overwhelmed self into class every week. I wasn’t ready for the information, but I continued to go to the class and read the material they provided because I knew I had to know what might be ahead of us. I felt like I was just going through the motions, but it helped prepare me. Being with others who were in a comparable frightened state brought solace. Through our similar feelings and circumstances, empathy was found.

Months later at the rehab center there was a monthly support group, which Mark and I attended together. I felt comfort associating with others who were experiencing like situations. There is consolation when you realize you’re not isolated from society.

In the past, I hadn’t heard of a support group especially for caregivers, nor did I feel I had the time to participate in one. I knew there was a need, but finding the time is difficult if not impossible for some caregivers. That’s why I started Uniting Caregivers, which includes stories, tips and thoughts for online support.

My good friend, Laura Nordfelt, had a different vision. She saw the need to actually meet and strengthen each other by sharing experiences. She started Caring for the Caregiver shortly after I started Uniting Caregivers in October 2013. They meet monthly at Intermountain Medical Center in Murray, Utah and she’s done a marvelous job picking topics for caregivers. Laura asked me several times during the past three years to join forces since we are both passionate about supporting caregivers. I’ve given a few presentations to the group, but really didn’t know how I could add another item on my overloaded plate, even though it looked delicious and tempting to so.

This group meets at the same time the survivors do so I didn’t have to worry about Mark while I was at another meeting. I also belong to two writing groups; I enjoy the encouragement and information shared amongst authors. Support groups enhance my life and meeting face-to-face deepens relationships.

I decided it was time to juggle my schedule and join forces with Laura last November. I’m excited about the New Year and the presenters we have lined up and will share more of that information in upcoming newsletters.

Support-Stronger TogetherI still realize how hard it is for some caregivers to make time for a support group meeting. Since my mission is to encourage and help others realize they are part of a special society, I’ve decided to write monthly newsletters. I’ll share information and notes from the support group meetings I attend and list others around the Salt Lake Valley. I will include this newsletter on Uniting Caregivers. If you’d like to follow the blog, enter your email address on the website and receive notifications of new posts by email.

If you prefer just a monthly newsletter, please email Barbara@UnitingCaregivers.com. Type “subscribe to newsletter” in the subject line and you will receive a monthly newsletter with upcoming events and information on support groups.

March 2017 Newsletter <<<Click for PDF

What has been your experience with support groups?

 

Seizure Insights

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

What is a seizure? 

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

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

What happens in the brain during a seizure?

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

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

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

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