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NC as Stroke Belt – An ignominious distinction

by Tricia Couture

March 11, 2013

Did you know? In North Carolina, stroke occurance is nearly 20% higher than the nationwide average. 

Anthony Barnes, 43, was in the middle of a heated argument over the phone. Anne Toth, then 28, was doing some Saturday afternoon shopping at Target. Cecily Lomar, then 54, was talking with her husband.

All three suffered strokes during these activities.

According to Strokecenter.org, every year there are approximately 795,000 strokes - or brain attacks - in America.

The North Carolina Department of Health and Human Services reports that North Carolina is included in the “Stroke Belt,” an area in the southeastern United States that has a significantly higher incidence of stroke than the rest of the country.  The North Carolina Stroke Care Collaborative states that the age-adjusted stroke death rate in North Carolina in 2007 was approximately 19% higher than the U.S. rate.

The Centers for Disease Control (CDC) reports the age-adjusted (ages 35+) stroke death rates in Mecklenburg County, N.C. (including Charlotte) to be 116 in 100,000.

Many people do not realize that strokes can occur in younger patients as well. In fact, a CDC study found that Ischemic stroke hospitalization rates in adolescents and young adults (ages 15-44) increased up to 37% between 1995 and 2008.

Given the number of relatively younger people who have suffered strokes in the Charlotte area, Dr. Jodi Dodds, Director of Presbyterian Healthcare Stroke Centers, decided to start a support group for her younger patients. The age range of the group is 25-55 years.

“We started the support group because it was clear that there were a significant number of patients in Charlotte who were young, had sustained a stroke, and were feeling isolated in their psychological recovery. Some said in seeking out support groups, they felt they were not a good fit because most of the participants were older, and what my patients were seeking were connections with others who were raising children, trying to get back to work again because they weren’t ready to retire – problems unique to younger stroke patients,” Dr. Dodds said.

The group meets once a month to share their unique issues and to listen to guest speakers including an Olympic athlete who had suffered a stroke and a representative from the North Carolina Social Security Disability office.

Members of the group provide support to one another and give each other an outlet for sharing that they may not find elsewhere.

“I think I’d like to give as much as I get.  It’s so good to hear that I’m not alone in what I went through and/or am going through.  But I think I can help more recent survivors given that I’m now almost two years post stroke,” said Lohmar, 56. “Seems I’m one of the ‘older’ ones in the group, and I figure I might be able to help others go through the healing.  None of us are prepared for this, so it’s unchartered territory for us all.”

Dr. Dodds thinks that the group will help each other out as they navigate the unfamiliar terrain of stroke recovery at a young age.

“I am hoping participants will find the group to be a source of emotional support as they recover, and that members can rely on each other in order to cope with more lingering deficits,” she said.

Being a stroke victim at a younger age can be hard because the effects of a stroke may not be as obvious as it is in older victims. The signs and after-effects of suffering a stroke often can go unrecognized by co-workers, friends, and even one’s family.

Being able to share and talk about one’s problems in a safe setting can give people the chance to discuss issues they’re facing with others who may be experiencing the same problems, as well as their triumphs and victories. 

“The group sharing has helped me deal with my struggles and experiences. Also, it is therapeutic to be around others who relate to my experience. Additionally, the stroke support group members give me strength. I feed off their energy to get well under difficult conditions,” Barnes said.

Friends and family members of those who have suffered strokes may find it hard to believe that anything has changed when the person they know looks “normal.”

“It is extremely difficult to explain to friends, co-workers and other outsiders that I am not my former-self,” Barnes said. “When they look at me and do not see a "typical" stroke patient they become confused. Even after explaining my conditions, they seem sympathetic, yet, skeptical.”

 He has found that even medical professionals who know his history do not seem to treat him as they would an average stroke patient.

“Medical appointments surprise me the most. The doctors, nurses and staff have the same reactions as non-medical professionals. I find it unsettling because I question if they will treat me as a healthy patient or a stroke victim. A healthy-looking person will not get the same level of attention as a "typical-looking" stroke victim.”

On the day of her stroke Toth felt that she wasn’t taken seriously by the ER staff while waiting to be seen by a doctor. In fact, she suffered two to four smaller strokes while she was kept waiting. She joined the group in part to help draw attention the plight of young stroke sufferers to the medical community.

“I had a rough experience in the ER when I first showed up with the stroke symptoms. They let me just sit there for hours and hours because my vitals were alright when I first came in. Now that I know what was happening to me, looking back - I know I had multiple strokes while I was sitting in the waiting room.  I hope to tell my story so that medical professionals realize what may be happening. I think they looked at me, saw a young healthy woman, and never suspected stroke. I don't want anyone to deal with that ever again.”

Many stroke patients do not return to work for various reasons or take the opportunity to retire. A number of them file to receive disability benefits through Social Security.

Lomar decided to return to work after her stroke - perhaps too soon, she feels.

“I started back way too soon, despite the advice not to.  I was in a lot of denial about the more subtle, cognitive implications of the stroke.  Between the difficulties I had with the work, and the fatigue generated by trying so hard, I lasted about four-six months and then crashed.  I took another three months off for more psych rehab and rest before I was really ready.  I’ve been okay this second time around.”

Her co-workers have used her stroke as an excuse to catch her making mistakes.

“I have struggled with feeling like people look at me expecting me to fumble or some other sign of the stroke to show itself.  Or just wait for me to mess up so they can say ‘there’s the stroke.’ I’m finally getting over it I think, but it still comes up sometimes,” she said.

Toth on the other hand, has not received much of a reaction from her co-workers at the school where she works.

“Family/friends/coworkers don't treat me differently at all, except for the initial ‘whoa, you had a stroke?’ you're so young!’  They're curious at first, but after I tell them what happened and that it's more common than most people think, that's the end of it.” 

Barnes receives disability payments from Social Security.

 “I decided to go on disability under Dr. Jodi Dodds' advisement. I was resistant for some time, but eventually accepted my condition and realized Dr. Dodds was completely correct. I haven't questioned her advice or instructions again,” he said. (And as of November 2012 had not yet returned to work.)

Even if stroke patients look and feel “normal,” a stroke can leave a lasting effect in physical and mental abilities.

Lohmar said, “I can’t do as much as I once did in the course of the day.  I fatigue more easily and can’t process multiple irons in the fire at once that I used to.  I’m also looking more seriously at cutting back on work – I haven’t figured out how, but I’m taking it much more seriously than ever before.  The biggest change is we’ve decided to move to a place we had considered for retirement.”

Anthony has experienced more lasting physical changes, but is also appreciative of having survived his stroke

“...I experienced losses and depreciations in the following: speech, comprehension, mental capabilities, right hand functions, consistent fatigue and loss of strength. I have a constant awareness of how I am feeling, specifically in my chest area since I have an Implantable defibrillator due to cardio myopathy. My approach to life has completely changed - in a good way, but it has been a struggle. Every day is truly a gift and I handle life's situations with a different approach than I did in the past,” he said.

After finding out they had a stroke, patients may be likely to pay more attention to their own health and differences in their bodies.

“The big changes in my life have been mental/emotional/psychological.  I'm much more aware of my body now.  I listen to my body and take note when things are "out of whack” such as when I'm feeling dizzy or get an unexplained headache,” Toth said. “I would say I have no lasting deficiencies, however I am a bit more forgetful and scatterbrained than I used to be, but that may be attributed to my job - I'm a high school teacher with four different classes that I teach - or to the fact that I am now a mom.

 It’s important for people to be aware of the signs and symptoms of strokes at any age.

“Signs of stroke [include] sudden weakness on one side of the body, sudden numbness affecting one side, sudden visual loss, sudden inability to speak – I think “sudden” is the key word here. A sudden neurological change should always be evaluated as soon as possible in the emergency department,” Dr. Dodds said. “For younger patients, sometimes severe neck pain or severe headaches can indicate that a stroke is taking place, as migraine is a more common phenomenon in the younger population and does raise the risk of stroke relatively. I mention neck pain because about one-quarter of strokes in patients under the age of 45 stem from vascular dissections (carotid or vertebral artery).”

If you are in the presence of someone having a stroke, you should get immediate help for them.

Dr. Dodds advises, “If you think you are having a stroke, or if someone near you is having a stroke, you should always call 911. Don’t drive to the hospital because delays may come up, and certainly don’t lie down and take a nap. This tends to be what younger patients do because they can’t imagine they may be experiencing a stroke.”

There are things people can do in their own lives to prevent strokes.

“Stroke prevention goes back to good lifestyle choices, regardless of a person’s age – refraining from cigarette smoking and illicit substance abuse, especially cocaine and methamphetamine use, which can cause arteries in the brain to spasm or constrict, which reduces blood flow, maintaining a healthy weight, exercising regularly, and if someone has hypertension or diabetes, controlling this with appropriate medications,” Dr. Dodds said.

The stroke support allows its members to bond over shared experiences, deal with a variety of issues, and reminds people how lucky they are to be alive.

“It is important that I know and remember that others are experiencing similar trials. Without the group meetings I probably would have thrown a pity party or woe, is me party for myself,” Barnes said. “The group sharing has helped me deal with my struggles and experiences. Also, it is therapeutic to be around others who relate to my experience. Additionally, the stroke support group members give me strength. I feed off their energy to get well under difficult conditions.”
 

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