In our 2012-2013 Report to the Community, we introduced readers to David and Christine Detweiler. Following a series of strokes and a diagnosis of central nervous system vasculitis, David has been a patient with Mercy Regional Rehabilitation Center since 2009. This post is a more expanded version of their story.
Central nervous system (CNS) vasculitis is a rare disease that involves inflammation of blood vessel walls in the brain or spine. Those affected by CNS vasculitis may experience severe and long-lasting headaches, strokes, seizures, swelling of the brain and other symptoms. The cause is currently unclear, and treatment can last a lifetime.
David and Christine Detweiler knew nothing of CNS vasculitis in August of 2009. For more than five years, the Northeast Ohio natives had served as missionaries in Ukraine and were looking forward to a vacation in Poland to visit friends. Three days before departure, David suddenly became ill. Christine remembers his pallor, excessive tiredness and off-balance gait.
“With no previous health issues, David did not want to cancel the trip,” says Christine. “When we arrived, however, our friend, who is a physician, took one look at him and knew something wasn’t right. She took him to a neurologist immediately.”
After two CT scans revealed a possible brain tumor, specialists in Poland told the Detweilers to return home right away where he was directly admitted to Mercy Medical Center. Testing revealed not tumors, but a series of strokes. The couple was shocked.
Christine says, “I remember thinking, ‘What? He’s not 80! How could it be stroke?’ Initially, it appeared that he had recovered, so he was discharged. But we quickly discovered that he had issues with sequencing. He would get into the shower with his clothes on or put on shoes before socks. And then he had another major stroke, which led to the CNS vasculitis diagnosis.”
First Moment of Hope in Stroke Recovery
The stroke left David extremely weak and unable to walk, feed himself or even sit in a chair for longer than a few minutes. He could barely talk and would stare into space for prolonged periods of time. Beyond getting the CNS vasculitis under control, David needed intense, long-term rehabilitation.
Even though she had not previously received care at the medical center, Christine chose Mercy Regional Rehabilitation Center. She says it was the best decision she could have made.
“I can’t imagine going through what we went through without coming to Mercy,” Christine adds. “David’s sudden, dramatic, life-altering situation put me in a tailspin. Every day, I was learning new words, new medications and more. Was he going to live? Was he going to die? Was there any hope for recovery? It was totally overwhelming.”
Christine can still picture the first day of David’s therapy, which was essentially hers, too. She had to learn how to be a caregiver. She says,
David had been taken into the main therapy room, and this tiny woman wheeled him over to the walk bar. It was therapist Buffy Smith. She said to David, ‘We’re going to stand up and walk today,’ and I thought, Oh my goodness! Doesn’t she know he’s paralyzed?
She was a quarter of his size, and I watched her scoop him up. She did all the work. She helped him move his foot. It was phenomenal! And it was the first moment I felt there was hope. To be able to taste hope for the first time was overwhelming in a very tangible way. It was like a glass of water when you’re completely parched.
Learning to Deal with Stroke from Others
From that point on, David progressed. He regained strength and relearned how to walk, eat and focus his attention on the world around him. Christine notes that everyone was encouraging, from housekeeping to therapy. On days when she describes herself as a wreck, she appreciated how therapists would help her see little bits of progress.
After about five weeks of in-patient therapy, David was released to a nursing facility for a month and then to outpatient rehabilitation at Mercy for another month.
Rehab staff members encouraged Christine to join the medical center’s Lucky Stroke support group, which – as Christine describes – helps caregivers find peace by talking with individuals who are further down the road of stroke recovery. Although each situation is different, Christine says there is much to gain from peer support.
“Sharing stories, resources and more, we are constantly learning something in Lucky Stroke,” she says. “It’s relationship based, not a lecture. We talk about the more than just the physical aspect of stroke. There’s depression, confusion and so much more. Stroke impacts your life deeply.”
Overcoming Obstacles Inspires Advocacy
Because of mounting healthcare bills, the couple moved in with David’s mother in Hartville, where they currently live. Christine says the situation has been devastating to their finances. Thanks to the kindness of others, they were able to survive the first year. However, given the long-term nature of her husband’s condition, they applied for Medicaid. She says:
It’s easy to talk about the pitfalls of Medicaid when you have an alternative. But, given the right circumstances, a lot of that gets challenged – on every level. When most people think about assistance, they say, ‘I would never do that.’ In December 2009, we received a huge bill from the hospital where David was diagnosed with CNS vasculitis, and I laughed. How can someone with no assets pay for this? Thank God for Medicaid. It has covered a lot things, including rehab and 13 different medications. Our average monthly prescription bill is $1,500.
More than three years later, the recovery for both David and Christine continues. Although David is medically stable and walks with a cane, he remains unable to work. In addition, the CNS vasculitis led to a recent toe amputation, and he is again undergoing outpatient rehab at Mercy to adjust his gait.
Christine currently attends Stark State College in North Canton. Inspired by her experience with David’s stroke, she is working toward an associate’s degree in healthcare communication. Professionals in this emerging field promote the health of individuals, communities and populations through a variety of communication methods, including interpersonal, group, public relations and digital media.
“What attracted me to this career is that I now have a passion for advocacy,” Christine says. “I can advocate for people who don’t understand what they are facing when they receive a diagnosis. I can advocate for people who don’t know to deal with the financial aspects of healthcare. I want to be able to make changes at the source and educate people. There is no greater help in the healthcare arena than education.”
Even now, Christine is making an impact locally by speaking publicly about vasculitis and stroke. She has also been invited to participate on Mercy’s rehab board. One of her key messages to people who care for stroke survivors is the importance of asking for help.
She says, “I had caregiver burnout at one point. David was so weak and vulnerable, and I felt I had to protect him. In the process, I spent myself. That didn’t help him or me. So, seek out community resources. People know people, and they are willing to share. But you have to ask.”
Creating Meaning from a Difficult Stroke Recovery
When asked about her hope for David’s recovery, Christine says the sky is the limit! She believes limitations can be crippling. Although his progress isn’t as dramatic as it was during his inpatient rehabilitation, she sees it in small ways.
The strokes caused by CNS vasculitis happened in an instant and changed David and Christine individually and as a couple. However, it has not taken the best of them. Through this situation, she and David have learned to reevaluate life and readjust goals. She says:
God has a plan for each of us. With that hope, we plan for the future but always focus on today. Through this journey, I’ve learned how our culture often equates a person’s job with their worth. But I believe we automatically have worth simply because we are.
I don’t know anyone who couldn’t use a hug or a smile. Even when I feel I have nothing to give or feel insignificant, I still have so much to offer. David does, too – as a man, as a stroke victim, as a recovering person. He consistently encourages others and reaches out to those who are hurting. As a couple, we are willing to help anyone who may be going through a similar experience. For us, that means this situation has not been in vain.
Stroke is the number four cause of death in the United States and leading cause of disability in adults. It is a medical emergency. If you or someone you love develops stroke symptoms, seek help immediately.
The effects of a stroke can vary, and recovery may require rehabilitation. If you live in Canton, Massillon or elsewhere in Stark, Carroll, Wayne, Holmes or Tuscarawas Counties, Mercy Medical Center is here for you. Learn more about our regional rehabilitation center and the services we provide. For more information or speak with an admission coordinator, call 330-580-4716 or 330-580-4717.