Stroke Issue Extended

Welcome!

Welcome to our extended articles and resources. Here we continue the dialog from our stroke issue, published in 2008-2009, with more information from people who know the most about this medical condition: patients, health care providers and professional associations. We will continue to update these pages and we encourage your input. Please give us your feedback: rehab_reader@med.unc.edu

Prevention and Awareness of Stroke

According to faculty at UNC Physical Medicine & Rehabilitation, modifiable risk factors for stroke include the following:

High Blood Pressure
High blood pressure is probably the most important risk factor. Good blood pressure control helps prevent stroke in general.

Diabetes
Controlling blood sugar is important for diabetics who have had a stroke, to help prevent a recurrent stroke. Many people with diabetes also have high blood pressure, high cholesterol, and are overweight.

Cigarette Smoking
Smoking significantly increases the risk of stroke, not to mention heart disease, cancer, and peripheral vascular disease. Just quit if you can.

Alcohol Abuse
Alcohol abuse can lead to many medical complications. Doctors usually recommend no more than two drinks per day for men and one drink per day for non-pregnant women.

Drug Abuse
Drugs that are abused, including amphetamines and heroin are associated with increased risk of stroke.

Heart Disease
People with valvular heart disease and atrial fibrillation (a specific type of irregular heart rhythm) have an increased risk of embolic stroke (a type of stroke usually caused by clotting).

Carotid Artery Disease
This disease is blockage of the artery in the neck that sends blood to the brain. Sometimes this blockage can be detected in a physical exam, and can be treated surgically in select, symptomatic patients.

High Blood Cholesterol
Control of high cholesterol can prevent stroke.

Sleep Apnea
Sleep apnea is caused by pauses in breathing while you sleep. This disrupts your sleep pattern and causes daytime sleepiness. If untreated it can increase the risk of stroke. Appropriate treatment can help.

Lack of Exercise, Inactivity and Obesity
Being inactive, obese or both can increase your risk of stroke. Try to get a total of at least 30 minutes of activity on most or all days.

Sickle Cell Disease
Sickle cell disease or anemia is a genetic disorder that affects many African American and Hispanic children. Sickle-shaped red blood cells stick to blood vessel walls, which can block arteries to the brain and cause a stroke.

Poor Diet
Diets high in fat can raise cholesterol levels. Diets high in salt (sodium) can increase blood pressure. Diets high in calories contribute to obesity. Strive to eat a diet that has five or more servings of fruits and vegetables per day to lower your risk of stroke.

Always call 911 if you or someone else experiences warning signs of stroke, including the following:

• Sudden numbness or weakness of face, arm or leg (especially on one side of the body)
• Sudden confusion, altered mental status, trouble speaking or understanding
• Sudden trouble seeing in one or both eyes
• Sudden trouble walking or completing tasks, dizziness, loss of balance or coordination
• Sudden, severe headache with no known cause
• Difficulty swallowing
• Also see the American Stroke Association web site.

For prevention and awareness of the common symptoms of stroke, we also recommend the other wealth of information on the Amercian Stroke Association web site. In addition, you will find a call to action: the power to end stroke, from which you may request additional resources, including healthy recipes and more.

Learning from Marilyn Lewis

Marilyn Lewis, the patient on the cover of our stroke issue, not only learned from specialists on the floor of the UNC Rehabilitation Center about how to overcome her stroke; she also had much to teach and to give back. From the perspective of her rehabilitation nurse and her speech therapist, she continues to inspire:

From Misty Townsend, RN, UNC Rehabilitation Center Nurse

Marilyn was the first patient I met with locked-in syndrome: a patient is there cognitively, but can only blink the eyes. I began to help Marilyn with her speech and other carry-over from her therapies, talking to her through the therapy steps.

What surprised me about Marilyn was that every day I came in to work during those eight weeks of her rehab, Marilyn was doing something different, making more progress. I saw this total miracle.

She recognized that I respected her, the dignity part. That’s why we got along so well and had a good time together. She and I had such a bond that we were both in tears when she left.

Before her discharge from the Rehabilitation Center, I made sure she got bathed and dressed to go down to the butterfly garden that morning, to get some sunshine for a few minutes and to say goodbye. She stood up and gave me the biggest hug.

Because of Marilyn, I realized that I wanted to stay in nursing. Marilyn had taught me not to draw conclusions based on what I saw, to never count anybody out, because anyone can get better. Now I actually prefer to take care of patients who are really hard-off and have a long road to recovery.

From Antje Thiessen, MS, UNC Rehabilitation Center Speech Therapist

Motivation is a huge factor in recovery. Marilyn had some moments in which she was frustrated, discouraged, and emotional, but she was always up for working hard and believed in all of her therapists. Patience is key. Having functional short- and long-term goals also is important (such as eating turkey by Thanksgiving). However, you can never predict how someone is going to recover. Marilyn was in pretty bad shape when she first got here, and yet she made an absolutely incredible recovery.

I remember at one point, after yet another difficult modified barium swallow study, she was so discouraged and thought she would never be able to eat normally again. She called me about a month after she left here to tell me she had had her first slice of pizza!

With respect to her communication she literally started out from zero. Her first day at UNC, in the stroke unit, was close to locked in. She could move her eyes but had fairly poor control over them. When I brought in the eye gaze letter board she immediately picked up on how to use it. She spelled “Can you fix me?” and “I love you” as her first sentences and then just took off. We started working on prolonging her vocalizations into short words (ma, hi, no). After about 7-10 days here she was watching a show on TV, in which one of the characters was getting speech therapy and the therapist had him saying “mooooo.” The next day I walked in to hear Marilyn mooing! She had me and her sisters in stitches. It just showed how motivated she was that she was working on her speech even when she was watching TV.

She taught me to be even more careful in answering patients’ and families’ questions about prognosis. And she reminded me on a daily basis how important humor is. She was always cracking up about something, including herself.

Stroke Mentors: In Their Own Words

Our stroke mentors are a special part of recovery in the UNC Rehabilitation Center. Members of this volunteer team have inspired many patients with stories about their own recovery. We offer their words of wisdom here for the benefit of others on the rehabilitation journey.

Joy Phillips Murphy, Stroke Peer Mentor

When you’re rearing through life full steam ahead and things come to a screeching halt: you open your eyes in a hospital bed and wonder, what in the world happened? A thing called STROKE had happened to me. At the age of 26, trauma and fate dropped this terrifying challenge in my life. First stage for me was critical condition. Fortunately, I was under excellent medical care. Where do you think? Twenty-five years ago the name was N.C. Memorial. Sound familiar?

Slowly, methodically, painstakingly and carefully, I gradually joined the ranks of disabled. This was a definite improvement! Paralyzed left side, blurred vision, and speech that had a ways to go. Hard work, determination, loving and supportive friends and family, and an abundance of prayers – all these were on my side. What could one do but improve?

Frustration and small gains, slowly and steadily my condition progressed over the next many years. One step forward, two steps backwards. Putting on my blinders to focus, I would try again. Graduation to being only handicapped was a triumph. This part of my stroke journey was an ongoing and exciting transition.

Years and years of never giving up, trying one more time, continuing to have hope and faith didn’t leave me hanging. As a twenty-five-year stroke veteran it is a privilege for me to say to all of you, NEVER GIVE UP! You must continue to trust and believe. My dark and uncertain path has turned into a very full and even more challenging life. By no means was it simple or easy. But, it was doable. If I could journey into physically challenged so can you! PLEASE, believe you can and try one more time.

Sherman Riggsbee, Stroke Peer Mentor

On the day I had my stroke, I was setting up for a county commissioners’ meeting. I was active, athletic: an involved member of the community and working for Orange County Public Works. Suddenly my right side went numb. I also had a headache and felt dizzy. My right foot started to get out of control. I remembered what happened when my mother had a stroke, so I immediately told my boss. He said, “I don’t think you should drive.”

With his help, I got to UNC within three hours, the critical window to prevent further damage from a stroke. The doctors found a clot in the CAT scan and busted the clot. Also on the scan was evidence of a previous minor stroke, the kind you get when you land on the couch wrong, and you get numbness in your arm. Your arm goes to sleep – that could be a mini stroke that goes unnoticed.

It was as if my stroke split me right down the middle – fine on one side, numbness and tightness on the other.

I tried to think back to the reasons for my stroke: smoking, diabetes, high cholesterol, job stress, and stress at home dealing with being a single parent to two daughters and a son after my wife’s passing.

My parents, uncles, aunts and siblings had been deceased well before my stroke, so I was living with one of my daughters as I was recovering. Then it hit me: depression. I didn’t even open the drapes during that time. Eventually, I began to see a professional at UNC for my depression and joined a support group. The group members constantly praised me on my efforts; I felt myself drifting into depression less and less.

I began to speak to other stroke survivors, became a mentor, and now serve on a community advisory board. I have read every brochure on stroke we have in the library on the 7th floor (in the Rehabilitation Center). Some of the information was news to me. For example, 40 percent of stroke patients, who can go home, still need help from another person. I continue to educate others about stroke, as well as tell my own story.

I believe I’m a better person today than I have ever been in my life. My stroke enabled me to take a step backward, to see the whole picture. I don’t let stuff bother me; I eat better, exercise, and want to give back. I don’t feel lucky; I don’t believe in luck. I feel blessed. When I walk out of here and know I’ve uplifted someone, I feel as though I’m walking above the floor. I’m uplifted too. I hope that the people I have touched will touch someone else.

Philip, Stroke Peer Mentor

Before my stroke, I was a busy husband and parent. I was also a workaholic with two full-time jobs, averaging 72-80 hours per week. If that wasn’t bad enough, I was a smoker, at times up to 3 packs a day, and a diagnosed diabetic with glucose levels reaching 777 (enough to put me in a diabetic coma).

With proper medication, however, my glucose level averaged at 250. I thought I was average: a 39-year-old who smoked but tried to keep fit. Then one early morning around 5:00 AM I was at my second job restocking the refrigerators with tubes of sausage. I remember transferring a roll from my right hand to my left hand and immediately dropping it. I tried three times and had trouble getting up from my knees. I realized something was wrong! I tried to take a break and smoke a cigarette, but it would not stay in my mouth.

There was no headache, no pain, no explanation. I drove home thinking that I just needed sleep. However, I soon felt trapped within my body, seeing my limitations. I could not communicate to my wife what had happened. My speech slurred, and my left hand, arm, and leg did could not move.

When I woke up – two days later in the hospital – my rehabilitation began, three times a day, up to 6 days a week in occupational, speech, and physical therapy. I worked on my arm and hand for approximately eight months as an out-patient, and for nine more months worked on my therapy at home.

I recently learned the part of my brain that controls addiction was positively affected due to the stroke. That explains why, when I was offered a cigarette about two months after my stroke, I gave it back. I twirled it around for fifteen minutes, saw the opportunity to truly quit, and haven’t touched a cigarette since.

Coming to the UNC Brain Injury Support Group, and working as a stroke mentor, has helped me be more outgoing, and raised my confidence. I am more involved, not just sitting back and saying I think I can. In addition to volunteering as a stroke mentor and participating in two UNC support groups, I have become more active in my church and enjoy my part-time job. I believe I have become a better father to my teenage son and daughter. Here is an excerpt from a note my daughter wrote me, that I’d like to share:

“My paper definitely [would] not have turned out as good as it did if it was not for your help. Thanks again Dadio, love you, Christina.”

If you try, I think you’ll be very pleasantly surprised at the outcome.

WCHL Radio bestowed Philip with a 2008 Hometown Heroes Award. The award honors “very special people in our community who work to make our area the wonderful place it is,” and goes to both well known recipients and folks making a difference behind the scenes. Philip, who works tirelessly as a volunteer in our rehabilitation inpatient and outpatient clinics, as well as at Ba Da Wings (remembering each customer’s name), may have thought he was “flying under the radar” in his good deeds. However, he now joins other public figures who have received this award, such as Moses Carey, Tyler Hansbrough and Representative David Price. Congratulations, Philip!

Bruce Schwentker, Stroke Peer Mentor

I was asleep when it happened. I woke up about 2:00 in the morning and couldn’t move my right hand. I thought my hand was just wrapped in the sheets. I felt different. I thought: Something’s not right here. But I went back to sleep.

I should have gotten up then and gone to the emergency room.

By 6:30 in the morning my wife noticed my right face was not right. I had trouble walking. She called the rescue squad, and I was rushed to UNC.
My wife was grateful that I was home when it happened. I had come home for a lecture our church was giving. I had suffered a thrombotic stroke – a clot on the left side of my brain.

I had known that I might be at risk for a stroke. Sometimes my blood pressure had been above 200. As a Christian Scientist and practicing Christian Science Nurse, however, I had advocated the power of prayer rather than medication.

Now I’m on twelve different medications, some for blood pressure and cholesterol. I’m not happy about it, but I take them for my wife and family’s sake. I have two grown children and have been married to my wife since 1974. My wife has been very loving and kind through this recovery process.

I’m happy about what I can still do, and what I’m learning to do with one hand. It feels great to have my license back and to get into my old car. I needed a left pedal extension, a ball on the steering wheel, and extra mirrors, but I have that freedom back.

There are some things I used to do before my stroke which I can’t do now, like playing the guitar and singing. The stroke affected my voice, and it’s still not as strong as it used to be. But I can listen to music and I’m amazed at what my left hand can do just by itself, such as clipping several papers together with a clip. That’s important in my job at Orange Enterprises.

As a stroke mentor I tell people: You don’t have to give into it.

For me, it’s wonderful to see how people in the Rehabilitation Center change from being confused, to joking, to making goals, and having more control over their lives. I feel I’m making a difference.

More Articles

More articles, including an interview with Marilyn Lewis, appear in our stroke issue of the Rehabilitation Reader. You may also read other issues of the Rehabilitation Reader.