Greg Nordfelt’s Story

Laura & Greg

Image credit: Greg & Laura 2011

One of the benefits of my caregiving journey is the people I meet and have the privilege to rub shoulders with. I met Greg and Laura Nordfelt at the 2013 Annual Brain Injury Conference. Immediately, our hearts connected when they shared their story with me. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the fight to return to a familiar way of life are very similar. They agreed to let me share their story on Uniting Caregivers in March of 2014, Greg and Laura Nordfelt’s Story. We have kept in touch over the past two years and I’ve enjoyed my friendship with them. Watching this couple grow and seeing the amazing outreach they both give to others inspires me. Thursday, September 17, 2015, Greg shared more of his story with Channel 4 News. With their permission, I share what Laura writes and the Channel 4 News interview.

“I am so proud of Greg Nordfelt and this interview on Thursday with Channel 4 news. Most of the recording ended up on the cutting room floor, but what showed was a glimpse of what he has been through in the last 4 years with his recovery process. More than all of this is the amazing job he has done volunteering with the TBI patients since then at TOSH, who meet twice a week working through their aphasia issues. On top of all this, three weeks ago he started volunteering at Intermountain Medical Center (IMC) on the very floor where he learned to get his life back with Physical, Occupational and Speech Therapy, giving hope to TBI patients and their caregivers. This is my sweet, giving and incredibly loving husband. xoxoxo .”

http://www.good4utah.com/news/local-news/new-study-provides-better-treatment-for-traumatic-brain-injury-patients

Greg & Laura

Image Credit: Greg & Laura 2011

I appreciate the inspiration Greg and Laura give to everyone who knows them. I am grateful for the awareness of TBI they spread by sharing their story. Together they are a powerhouse and are making a positive difference in our community. I can’t wait to see what they accomplish next. They are wonderful and I’m blessed by their friendship. Ride on Greg and Laura!

New Hope

neuroworxWe’ve looked forward to the completion of Neuroworx for nearly a year. Today I toured this new facility for outpatient therapy and wellness program. I’m so excited! It was everything I’d hoped for. I had the pleasure of  meeting with Dr. Dale B. Hull, who currently serves as the executive director of Neuroworx. “He graduated from the University of Utah School of Medicine in 1985. Following graduation, he completed a residency in obstetrics and gynecology at the University of Utah Medical Center. He practiced general obstetrics and gynecology for ten years in the south portion of the Salt Lake metropolitan area.

dalehullIn 1999, he suffered a spinal-cord injury that resulted in paralysis from the neck down. This life-altering event, which prevented him from returning to active practice, required Dr. Hull to devote approximately three-and-a-half years to his rehabilitation. His physical therapist during this time was Jan Black.
 
He was fortunate to have an early return of neurological function. With hard work and Jan’s expert guidance, he was able to take advantage of that return to make significant progress.
 
janblackDale and Jan realized there was an unmet need to provide others with access to the extraordinary rehabilitation he had experienced. He joined his therapist in forming a non-profit organization and opening Neuroworx in 2004.
 
During 2002, Dale had the opportunity to be an Olympic torch bearer for the Salt Lake Winter Olympics. In 2009, he completed an underwater marathon in the Neuroworx pool to commemorate the ten-year mark of his injury. Dr. Hull is married and has four sons.”

Source: https://neuroworx.org/drupal/content/executive-director-dale-hull-md-mpa

“What is Neuroworx?

Neuroworx is a nonprofit, community-based, outpatient physical therapy clinic focusing on neurological rehabilitation for individuals experiencing paralysis from spinal cord injuries, brain injuries, and stroke.

We also offer a limited pediatric therapy program for children with neurological conditions requiring specialized care and equipment.

Mission

Our mission is to promote the rehabilitation of spinal cord injuries and other neurological conditions and to create and support the finest comprehensive neurological rehabilitation facility in the region.

We will:

  • Develop a comprehensive plan for restorative and functional rehabilitation
  • Provide superior equipment & expertise for as long as necessary
  • Focus on the individual by providing customized care
  • Generate the greatest level of independence & recovery possible
  • Extend our reach to all who need access to care–regardless of resources

Source: https://neuroworx.org/drupal/mission-and-objective

Check out the amazing KSL documentation on 08/27/15. It is definitely worth the watch.

https://www.ksl.com/?sid=36206608

Another KSL documentation recorded on 09/26/13.

Guess where Mark will be doing outpatient therapy?

Essential Members of a Rehabilitation Team

On our first day at Western Rehab, I was introduced to a team of therapists and their schedule. It didn’t always flow as perfectly as it looked on the white board, but having a written schedule put order back into my life. It also brought hope for improvement and was reassuring. Even though Mark was still comatose, I felt a consistent routine would be helpful for him as well.

I had been familiar with physical therapy for the past seven weeks, but occupational, speech and respiratory were new for Mark. How important is therapy while a patient is in a coma?

image from dreamstime.com

image from dreamstime.com

Physical Therapy

Mark’s first therapy after the accident was with a physical therapist.  Right from the start they oversaw positioning in the bed and later got him up in a chair. The PT stretched his legs and arms to keep them flexible, doing range of motion exercises. Sometimes splints were used to help prevent foot drop, clenched fist or flexion of the wrist and elbow. They worked to keep the joints moving and the muscles from getting tight and stiff. As the patient progresses they work on strengthening, coordination and transferring. The ultimate goal is becoming as mobile and independent as safely possible.

Occupational Therapy

In the beginning, the therapist provides sensory and basic motor training therapy to keep the patient engaged in routine activities, even while in a coma. The repetitive motions help with the relearning process.  As the patient improves, the OT coaches the activities of daily living such as dressing, brushing teeth, combing hair and eating. A brain injury may cause these skills to be lost or compromised. They work to improve coordination, endurance and fine motor skills. They provide adaptive equipment needed such as specialized utensils for eating, bathroom equipment and wheelchairs.  The OT overlaps and supports both PT and speech therapists.

image from paraplegiker-zentrum.ch

Speech Therapy

At the first stage of treatment, the therapist focuses on simply getting a general response to sensory stimulation. This may include touching the patient’s hand, talking loudly into the ear or even letting the patient smell an object or food. As the individual processes they may also use a flavored sponge swab in the mouth to stimulate the tongue with something to taste.

The therapist also teaches the members of the patient’s family how to interact with their loved one by asking “yes” and “no” questions and reminding them to blink once for “yes” or twice for “no”.  Another method used was to raise one finger or two. Once the patient becomes more aware and responds to stimuli, the treatment focus is keeping the individual’s attention and informing them of the day of the week, date, where they are and why they are there. In time the therapist ask the patient those questions building their cognitive development. They not only work on speech, but writing, reading and expression skills aimed at both comprehension and communication.  For a person with a traumatic brain injury it may be difficult to pay attention. Organization, planning and sequencing skills may need to be relearned.  They specialize in teaching memory strategies for treating the classic problem.

Respiratory Therapy

A respiratory therapist evaluates the patient’s respiratory care, status  and treatment progress. They manage the ventilator, oxygen levels, aerosol medication treatments and  breathing exercises.

All therapists work closely with the family, doctor and nurses in a rehabilitation hospital, so they are informed of any changes and can help and encourage progress outside of the therapy session. The therapists also help educate the family on what their loved one might be going through and what to expect.

I greatly appreciate the professionals that are skilled in helping others regain abilities lost due to injury or illness. Mark has had many wonderful, hardworking and innovative therapists who have made a positive difference in his life and abilities. Social workers, neuropsychologists, dieticians, family and friends are also important contributors to a rehab team.

Did I miss anyone on your rehab team? How has therapy benefitted you or your loved one? Who made the greatest difference?

A Blessing in Disguise

i_dream_of_jeannie-showThere is always plenty of work to do and the holiday season is no exception. Thanksgiving dinner was wonderful, but a lot of work. After hours of preparation, there’s the cleanup. What about Christmas? There’s more preparation for parties, dinners, decorations, shopping for gifts and all of this is done after employment hours. Sometimes I wonder why we do so much. Work Bewitched1can be stressful, strenuous and difficult. During those times I’ve dreamed of a genie (pun intended) granting my wish for less work and more play. In my youth, I also loved to watch the fantasy comedy sitcom, Bewitched. I’ve thought how awesome it would be to have the magical ability to accomplish anything with a twitch of my nose, clap of my hands, or a snap of my finger and thumb, eliminating all the hard work.

Have you ever thought of work as a blessing? Usually I think of it as the means to provide for the necessities of life. Without work, how do you pay for, prepare for, or participate in recreational activities and vacation time? Everything takes work, including the fun times.

I didn’t realize the worth of work until after our car accident, which made it impossible for Mark to continue in the electrical career he was schooled and trained in. He dedicated twelve years to the trade and was successful, reaching the highest level as a master electrician. After eighteen months of rehab, he was anxious to get back to work. Realizing he wouldn’t be able to work as an electrician while in a wheelchair, he asked every day what he should do with his life. He said he needed to be productive to have self-worth and wanted a purpose for life. Work provides purpose.

It was hard to imagine what he could do or that any other kind of work could bring him the fulfilment the electrical field did. I tried to convince him that rehab was his job. His focus should be regaining his physical and speech abilities so that he could go back to work as an electrician. Two years passed and he continued with his rehab, having eye surgery to fix his double vision and two surgeries on his feet to correct the foot drop, which made it difficult for him to stand. He continued to ask often when he could go back to work. I hadn’t realized before how important work is for making life worthwhile. Sometimes we don’t appreciate what we have or what we can do until it’s no longer available.

We volunteered at our children’s elementary school twice a week, reading with the kids or helping with math and spelling. Mark enjoyed the kids, but sometimes they couldn’t understand him because of his speech impairment. Children are so honest and they would ask him often what happened to him or why he couldn’t walk or talk. These comments were probably harder on me than they were on Mark. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried they might become discouraged or uncomfortable with our circumstances so I thought it would be best if we volunteer elsewhere.

After checking into options with our church, Mark was able to do some volunteer work at the Bishop’s Storehouse posting food orders in the computer twice a week. He also went to my brother-in-law’s family music store to stamp their logo on their sheet music at Day Murray Music. He enjoyed and appreciated the opportunity to go to these places and volunteering his time, but he wanted to financially contribute to our family needs.

The next year brought two more surgeries to fix Mark’s hip joints, which were filled with calcium, making it impossible for him to bend at 90 degrees. With his sight still set on getting back to work, I heard Mark often rehearsing electrical codes or terms so he wouldn’t forget them. He wanted me to pay the fee to keep his Master’s License current, but he was willing and wanting to do any kind of work until he got back on his feet. I had a hard time envisioning him finding any kind of employment because he was dependent on me for most tasks of daily living such as dressing, transferring in/out of the wheelchair and transportation, but wanting to support his goals, we pursued Vocational Rehab.

Scan0101

Mark at work desk at Discover Card

The male crew in the mail room

He went through an intense week of testing. His I.Q. score was higher than normal, but his physical skills were low. The program helped place him in a part-time job at Discover Card. He did computer work recording P.I.N.’s (personal identification numbers) and enjoyed that job for eight years until they closed down the mail center. This was the appointed area for all the eight employees with special needs. They worked together with one supervisor who was trained to oversee and help each individual accomplish their job. Most of the special needs employees sorted the mail to the various departments and delivered them there. Mark worked on the computer, but because he needed help getting to and from the Paratransit bus to his desk, the restroom, lunchroom plus make sure he was stocked with the paperwork needed for his computer entries, his work desk was located in the mail room. He couldn’t do this job without the help of the supervisor. The group of special needs employees were devastated when they were replaced by equipment which sorted and delivered the mail to the various departments in 2004.

Discover Card mail room crew

2004 Discover Card mail room crew

What do we do now? I knew it would be hard to find a job where Mark would be safe and get the help he needed to accomplish work tasks. I also knew he wouldn’t be satisfied being at home every day without work. I learned the importance of work and realize its worth is so much more than the monetary value. Work brings happiness.

Work is a blessing in disguise. We may curse it and wish we had less of it to do. I no longer dreamed of a genie to lighten the work load, but rather one who could help us find work for Mark. I wished I could twitch my nose, clap my hands, or snap my finger and thumb and make a job appear.

On Tuesday I’ll share with you tips on how we found work for Mark.

Cindy’s Story of Faith and Hope

Written by, Glenn Oliver

Cindy was diagnosed with lupus in 1983 at the age of sixteen. She had many flare-ups during her high school years, which meant she spent a lot of time in the hospital recovering. At age twenty she met me (Glenn) and eleven months later we were married. I knew of Cindy’s medical condition before we were married and knew I could handle it. My mother had severe MS (multiple sclerosis) while I was growing up. My siblings and I did most of the cooking and cleaning, so I grew up quickly and understood about health problems.

Six months after marriage Cindy had a grand mal seizure and the lupus had shut down her kidneys. She was on dialysis for eight months.The kidney doctors were very negative about the kidneys ever working again on their own. Our faith helped us feel positive and Cindy’s rheumatologist, Dr. Daniel Clegg, told us when the lupus shuts down the kidneys many times the kidneys will start functioning again. We felt strongly this would happen. After seven long months we saw signs through Cindy’s improved blood work that the kidneys were returning, but the kidney doctors told us this meant nothing. They told us to get used to dialysis because she was going to be on it for a long time. About a month later Cindy was off dialysis. Even then the doctors warned she’d be right back on it. We understood they didn’t see this happen too often so it was hard for them to realize Cindy was an exception to the rule.  We knew she was coming off dialysis for good.

Oliver FamilyWe also learned that when the lupus shuts down the kidneys the lupus goes dormant. During this time we talked about having children. Because pregnancy would be hard on Cindy’s kidneys and they would have a good chance of failing again, we decided to adopt. We have been blessed with three beautiful children. Zach is seventeen, Kade is fifteen and Olivia is nine years old now.

After sixteen years of the kidneys working at partial function, the doctors determined Cindy needed a kidney transplant.The blood work indicated the kidney function was deteriorating and the medicine to help the kidney function may hurt her health. Cindy’s brother Troy volunteered to donate his kidney and was a match. April 25, 2006, Cindy had the transplant and the operation was a success. Both Cindy’s and Troy’s kidneys are doing great after eight years. We are so grateful for Troy’s willingness to give his kidney to Cindy.

On September 3, 2006, about four months after the kidney transplant, Cindy became very ill. She was having headaches for a few days and started to be confused so we took her to Emergency. The doctors thought that Cindy had Meningitis, but the test came back negative. They tested for West Nile Virus and it came back negative. She couldn’t recognize certain things, so they admitted her into the hospital. She had a fever they couldn’t reduce. Cindy had another seizure and went into a coma. They began giving Cindy antibiotics first, but since she wasn’t improving they gave her high doses of steroids. The doctors weren’t sure she was going to make it. After a priesthood blessing by Cindy’s Bishop, she took a turn for the better.

Cindy woke up from her coma after a week of steroids. She communicated with her eyebrows. She could lift them when we asked her yes and no questions. A month later they tested her again for West Nile Virus, and this time it came back positive. The doctors realized the immune suppressant drugs prescribed for her kidney were masking the prior test result, a learning experience for the doctors.

During the time Cindy was in ICU, I was still trying to work. It became very difficult so I decided to take a leave of absence for a few months while we determined what was going to happen to Cindy. Her family and I were constantly with her at the hospital. We also had 3 children at home that needed care. Olivia was only 1 ½ years old. The family split up the time and made sure everything and everyone was taken care of. We made a schedule of who was at the hospital and who was taking care of the children. Cindy’s sister, Michelle, helped a lot, as well as my sister, Colleen, and several friends helped as well. We truly appreciated our family during this time of need.

We thought at the beginning Cindy would take only a few weeks to get better. But when she woke up from the coma and the tubes were finally taken out, we realized she couldn’t speak or walk.  The West Nile Virus went to her brain and affected all of her motor skills.  She had to relearn to speak, walk, write and eat. Cindy was in the University of Utah Hospital for two months and went to Physical Therapy Rehab there for another few weeks. She couldn’t do the rehab they wanted because she was too weak. She was then transferred to South Davis Community Hospital, where she got strong enough to begin her therapy. Cindy met Louise Jarvis, her PT (physical therapist), who was a life saver. She also had Jen Bangs for OT (occupational therapy) and they became good friends. Jen moved out of state, but they still stay in touch through Facebook.

Cindy was at South Davis Community Hospital for six weeks making her total hospital stay over four months. She continued her therapy as an outpatient until Louise retired, and now Louise comes to our home to help Cindy. We feel very blessed to have wonderful therapist who have helped Cindy progress.

When Cindy came home from the hospital she was in a wheelchair, couldn’t walk or talk well and we helped her with her meals. We noticed friends that were not used to medical problems stayed away. This was hard on Cindy because she lost a few of her good friends.

Louise is still working with Cindy to this day, after eight years of therapy. Cindy’s speech, writing, eating and all the things you do daily have slowly come back. She went from a wheelchair to a walker and then to a cane. Now she can walk without a cane around the house, but has a problem with her balance. She uses the walls and railing to steady herself. She does fall once in a while, but she gets up and brushes it off.  When we go out she holds on to me. She is amazing. Even the doctors are impressed with her abilities. The kidney has been working great through all of this and we feel the transplant saved her life.

This has been a life changing experience for both of us. I quit my job and work at home so that I can be with Cindy and the children now. Cindy cannot drive and needs help with things that have to do with balance—like trying to carry things as she walks. She still has hope she will walk one day completely on her own. She can do most everything else.

I love Cindy so much. I would never leave her. My father stayed with my mother when she was ill. He was a great example of sticking through hard times. I have seen men leave their spouses because of their health problems. I know that some men could not handle everything we have gone through which is sad. Those men missed out on something that needs to be learned in life. It’s not all about yourself—it’s about serving others. Cindy has gone through a lot in her lifetime. She is strong even though sometimes she feels she is not. She is a fighter and that is why she has done so well with all that has happened to her. I feel blessed I am healthy enough to be a helpmate for Cindy in all we need to do as a family. Life is good now.

Thank you Glenn for sharing your story. What a great example you are to me! I appreciate how positive and strong you and Cindy are.

If Insurance Denies – Make an Appeal

Dr. 1992After I brought Mark home from Western Rehab, the insurance company agreed to pay “day-patient” therapy for three months, which meant I took him Monday through Friday for all day therapy. After three months, they denied the request for continued therapy, stating, “If he is well enough to be home he didn’t need that intense level of therapy.”

I appealed, by calculating and stating the large amount of money saved in nursing care by having him home. I also requested that they send a representative to come to Western Rehab and observe him in therapy. I was sure if they witnessed his level of care and need for therapy they would approve it.

Blue Cross Insurance did send a representative, and after the observation they did extend his therapy for another three months at “day-patient” level.

In June 1992, I had to make another appeal for therapy to continue. “Half-day” therapy was granted, allowing Mark to have speech, physical and occupational therapy once daily.

In August 1992, a third appeal for continued therapy was made. “Out-patient” therapy was granted through the end of the year, allowing therapy three days per week.

It was a fight to keep the therapy going after Mark returned home — but the fight was well worth it. I did make a forth appeal for therapy because we still hoped for more improvement. The forth appeal was denied.

1992 - Mark with his Therapist at Western Rehab

1992 – Mark with his Therapist at Western Rehab

I was grateful for the year of intense therapy. He learned to drink and feed himself; speak more clearly and work his facial muscles into a smile. His cognitive skills improved. He gained enough strength to propel his wheelchair. All big steps in the right direction.

Even though Mark’s rehabilitation was not at the level we had hoped for when it ended, we appreciated the insurance company for extending the therapy benefit three times.

We are so grateful for the knowledge of doctors and therapist’s who helped Mark achieve a better quality of life.