Greg Nordfelt’s Story

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

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!

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

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

There 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 can 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 appeared to bother me more than Mark, who is accepting and understanding of others curiosity. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried our children 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.

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.

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 dream of a genie to lighten the work load, but rather one who could help us find work for Mark. It would be nice if 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.

If Insurance Denies – Make an Appeal

After 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

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.