Updated: Nov 2
You Can Change the Disjointed Stroke Environment
Michael Erwin survived the odds. On Sunday, September 10, 2017, he lounged in bed with is wife, Jennifer, and tried to win an age-old argument—who would get up to shower first. He lost, as usual. When he finally moved to get out of bed, something was clearly wrong. He tried to get up, lost his balance, and fell backwards.
Seeing Michael struggle, Jennifer recognized the systems.* Michael slurred his words and his face drooped. She quickly called 911. Jennifer heard sirens coming down the street and didn’t realize they were headed to then Erwin house because she still had the 911 operator on the phone. In all, it took 20-30 minutes to get Michael from the start of the stroke to the hospital. Everything fell into place that morning.
Michael had no warning signs for his hemorrhagic stroke. While less common than ischemic strokes (hemorrhagic accounts for 17% of all strokes) they can be life threatening. The hospital did tests on Michael and discovered damage near the brain stem on the left side. It was so deep, the stroke was inoperable. They had to “wait and see” how things would turn out. Michael stayed in the hospital for 36 long, interminable days.
The Wait and See Attitude
The hospital was a certified stroke center. Hope—the impetus for recovery—was in short supply. When Michael asked his physicians, nurses, or therapists when he would walk again, the answer was, “We can’t guarantee you, sir, that you are ever going to walk again.” Michael had a different attitude. He said, “I’m in the wrong place then, because I’m going to walk again.”
The hospital and rehab hospital were governed by rules and policies. The “people” part of running an organization had no place in the way hospital staff managed. Constrained by time, they forgot to connect with the patient. When Michael or Jennifer asked about the future, the staff gave a gloomy response. There was no hope.
For Michael, going to speech therapy was excruciating. He just couldn’t think of antonyms. He KNEW the words. It felt as if they sat on then end of his tongue. Michael had the same problem with synonyms. Even though Michael couldn't work his body, his inability to communicate concerned him. After the first speech session, Michael went back to is room and wondered what was wrong with his brain. He understood the question. He couldn't reply.
Aphasia, Mobility, and Balance
In the beginning, Michael had moderate aphasia. He had a breakthrough in 3 or 4 months. Finally he could answer the synonyms and antonyms! It took about a year to get back to normal. In essence, Michael’s right side didn’t work, and he had to learn to walk and talk again. Today Michael still has trouble with mobility and balance--which affects his right hand even today.
Suddenly a Caretaker
In the beginning, Michael was 100% dependent on Jennifer. His family lived out of state, but her family lived nearby. Jennifer’s parents offered to let them live with them while Michael got better. Grateful to have a place without steps, (their townhouse had three floors) Jennifer gladly accepted the offer.
Jennifer felt lost, and lived moment-to-moment. In addition to giving them a safe place to stay, Jennifer’s parents gave them much needed support. A researcher by nature, Jennifer sought guidance through the Internet and reading books. She also took over all the finances, something that Michael had done in the past. He had just written all of the passwords, and that was a miracle to her.
In the process of paying bills early on Jennifer discovered Michael had written down the passwords to all their online accounts for her. It became a crying moment when she discovered this miracle.
“Small things like that. . . people don’t realize they have to share this kind of information.” ~Jennifer Erwin
“Neuroplasticity” (along with the aforementioned hope) are words that medical professionals need to understand. They also need to communicate with compassion. There was a time when that there wasn’t much hope for stroke survivors. We thought people were born with one hundred billion brain cells, or neurons. If you had a brain injury, and a massive amount of brain cells died, medical practitioners thought you were stuck.
Fortunately, science discovered a new way of thinking. In 1948, Polish neuroscientist Jerzy Konorski coined the word neuroplasticity to describe observed changes in neuronal structure. In the 1960s, the scientific field began to embrace neuroplasticity as reality. And yet, one can still find health care workers that seem to believe that people can only get better for six month to a year.
Don’t believe that message. Stroke survivors can get better throughout their lifetimes. Yes, it is generally much faster in the first six months to a year, but there are many instances of huge breakthroughs years later.
Scientists have also discovered that neurons generate from scratch. You get 1,400 to 1,500 new brain neurons every day. If you don’t do anything, they die. But if you try to learn new things, or in the case of stroke survivors, try to regain your ability to walk, talk, or do whatever you did in the past, you brain starts to connect new circuits.
It takes a lot of continued effort, patience, and time, but stroke survivors can create new networks and create a new life. For stroke survivors, it is a choice.
“You don’t know what you don’t know,” Jennifer told me. Those words ring true to anyone who has lived through a life altering event. When they arrived at the private rehab facility, the Erwin’s learned that Michael’s rehab could have been much better at the hospital and rehab hospital.
Going to a private facility gave them hope for a brighter future. The Erwin’s learned how broken the American health care system from their own experience. The health care system and insurance will pay only a limited amount. Care ends far before the stroke survivor is functional.
Upon entry to the private facility, the Erwin’s experienced a deep connection. The therapists gave positive feedback and hope. Michael received speech, occupational, and physical therapies.
Because stroke limits functions in the body, Michael heard that it would take a lot of time, effort, (and longer than he wanted) for a recovery. While the private facility would not guarantee full recovery, knowing that he would work on his recovery every day, neuroplasticity would be the key to getting better.
There, a physical therapist told Michael that he would walk around the facility, about 1/3 of a mile) by himself, (and without a cane) before he left. For someone who sat in a wheelchair, that seemed unbelievable. The therapist continued by saying, “If you listen to me and follow my instructions, you will walk again.” The physical therapist delivered on her promise, and got Michael back to a life that he could cherish.
Michael said this about his recovery. “The first time I drove alone, I went to eat by myself. I hung out at the restaurant and watched TV . . . I just had a glow that you just wouldn’t believe!” He was proud and excited. Every bit of emotion Michael had been working for he was suddenly experiencing. “There is nothing like having your independence back,” he concluded.
Like many people, the Erwin’s health insurance covered the hospital and all of the inpatient therapy, but outpatient therapy was different matter. Jennifer felt shock when she learned that the insurance company would cover:
30 speech therapy visits per calendar year
30 visits for occupational or physical therapy—combined
It was a rude awakening when the 30 visits were nearly over. She could see that he needed a tremendous amount of speech, physical, and occupational therapy the be functional. In fact, Michael still continues his physical and occupational therapy today.
Starting a Nonprofit after a Stroke
After 7 or 8 months, Micheal started questioning what he would do with his life. He and Jennifer talked about the next step. Michael knew that he didn’t want to sit around do nothing. Jennifer told him to pray about it.
Michael thought that perhaps the church would offer some possibilities and he could work there. After about a month of prayer, Michael had a dream about opening a nonprofit for stroke survivors. Based on what he had experienced, Michael knew that getting better cost a lot of money. The message seemed unclear, so he didn’t really think seriously about the nonprofit.
Then, Michael had a same dream a couple more times. He chose to bargain with God. “I’ll open this nonprofit if I can walk by January,” he thought. Michael walked, so he had to make good of his part of the promise.
BELIEVE is a nonprofit in North Carolina that provides stroke and brain injury survivors with financial assistance and resources to help them better control and manage their journey to recovery.**
He wants stroke survivors to know that they can enjoy life on their way to independence. They can be happy along the way and have the hope to dream.
The Erwin’s looked for a nonprofit that already helped stroke survivors because then Michael could join an existing organization. None existed. So Michael and Jennifer submitted the documentation for BELIEVE in September 2019.
Five people currently support BELIEVE, and all volunteer their time. Meant to launch in March of 2020, COVID hit and the launch was delayed until September of this year. Michael had more independence and connected with more people via Zoom, so some good things happened through COVID restrictions.
Fear often causes people to falter when starting a business. Not so for Michael. He felt no fear when it came to starting his own company. His previous experience fixing underperforming entities or divisions so they could make money made him feel confident.
Jennifer supports Michael 100%. The one thing that Michael needs is patience. Occasionally Michael gets ahead of himself and has to remember that he and Jennifer must grow BELIEVE one step at a time.
Recovery Comes with the Way One Thinks
“Ever since I was little I thought I could do anything. I have a very goal oriented brain. I thought that whatever I put my mind to, I could do. I was convinced that I would walk again. There wasn’t ever a doubt in my mind,” related Michael. “It was like when I had the stroke. I didn’t realize how close to death I was.”
What Does the Caregiver Need?
The caregiver experience had quite an impact on Jennifer who feels that caregivers don’t get a lot of support.
As a caregiver, Jennifer didn’t ask for help. When people asked what they could do for her and Michael, Jennifer didn’t know what to say. She was overwhelmed. Thinking about it in retrospect, Jennifer would give the following advice for people that may need to help.
Do the simple things. Drop off food. Hire a maid for a couple of hours. Do the lawn. Jennifer would have appreciated any one of those things. Helping the caregiver provides some relief, which trickles over to the stroke survivor.
Having someone take the stroke survivor to therapy. Jennifer would have liked a 1/2 hour or more to get some rest . . . or even be alone to think.
Contact. People needed to understand that it is okay to not know what to do or say. They experienced a life changing moment. Jennifer and Michael appreciated the card or note. They felt special, and they could open them and re-read the message, to know they were not alone.
Jennifer had to stay aware that she held the reins of where they went and how they felt as a pair. Always upbeat in front of Michael, she shed her tears while showering.
Disjointed Stroke Environment
The stroke environment is so fragmented. What Michael plans to do in the next four weeks is to begin uniting it . . . at least in North Carolina. He plans to get all if the stroke related nonprofits together and meet monthly to brainstorm ideas about what stroke survivors truly need.
“All of us believe that self independence is the major goal. Everybody’s going about it differently. There are 32,000 stroke survivors every year in North Carolina. There were very few stroke survivors when we were talking to all of the nonprofits and private institutions for rehab. Some of it, I know, is the cost of rehab. There are not that many stroke survivors out there finding their independence. They estimate that up to 40% of stroke survivors go home and never come out of their house again because of depression. That is a concern,” states Michael.
Michael and Jennifer want to change that statistic. Through BELIEVE, they will make a difference.
* Years before, Jennifer’s grandmother had experienced a stroke. In her mind, strokes occurred in older people. Just before Micheal had his stroke, Jennifer had CPR training in her work place, where they briefly went over stroke systems. September 9, 2017, she discussed the symptoms with her mother, so she thought of them when they occurred to Micheal.
** Note: BELIEVE is only able to support people in North Carolina, but Michael is happy to connect with anyone who wants to learn more about being a service for stroke survivors.