CLINTON — Alonna Dukeman was not one to sit.
“I always need something to do,” the 59-year-old rural Clinton resident said.
On the table in front of her were trays of cinnamon rolls and candies that she baked that morning. She spoke in a home that she and her fiance, Ron Deatrick, transformed from a farmhouse to a showpiece including doors with stained-glass windows suspended from the dining room ceiling.
“There was no stopping me,” she said. A co-worker called her “Indy 500.”
“Not any more.”
As Dukeman motioned with her right arm, her left arm hung at her side. As she walked slowly, she concentrated so her left leg wouldn’t drag behind her right leg.
“I’ve learned that if you’re going to do anything, it’s slow,” she said. “This was the hardest thing for me.”
Dukeman had a stroke on May 21, 2012. But she’s doing OK, she said last week, and not only because of post-stroke rehabilitation, her exercises and Deatrick’s support.
About a year ago, she and Deatrick began attending meetings of the Stroke/Brain Injury Support Group of the Bloomington-Normal Area. She learned she was not alone.
“I’ve learned that I can’t dwell on what I used to do,” she said. “I’ve learned to be proud of whatever I can do.”
Those lessons helped her to be less self-conscious, to get out in public again and to help other stroke survivors.
Her lesson illustrates a benefit of support groups, not only for stroke and brain injury survivors but for survivors of other illnesses and injuries.
“One survivor said, ‘When I’m with the group, I don’t feel ashamed of my disability. If I forget something, if I can’t get the words out, I still feel safe, accepted and understood,’” said Jackie Smith of Clinton, co-founder of the stroke support group.
Support groups add dimension to the lives of survivors and their caregivers, Smith said.
Candi Gray, social worker at the Community Cancer Center in Normal, agreed, because information and support comes from people who have faced similar challenges.
“The main reason most individuals are interested in support groups is the opportunity for mutual support and exchange of experiences,” Gray said. “When people seek and receive help from others, they often find it easier to cope. And when they help others, they feel good.”
Support groups create a safe venue for people to express feelings, share concerns, gain information about their condition and learn to adapt to their condition, Gray said.
“People who participate in support groups may experience less depression, more hopefulness and joy in life and a new attitude toward their illness,” Gray said.
But a support group was the farthest thing from Dukeman’s mind in May 2012.
Dukeman works for a contractor that provides payroll service to power stations in Pennsylvania, New Jersey and Illinois — including Clinton nuclear power plant — during maintenance outages. When she wasn’t working, she was doing house projects, wallpapering for other homeowners, crocheted rugs and afghans and blankets, sewed clothes and baked cookies and candies.
She also walked 5 miles a day.
“I like people. I like to stay busy,” Dukeman said.
On the day of her stroke, she walked as usual and felt energetic as usual until she collapsed during a house project. She was rushed to Advocate BroMenn Medical Center in Normal, where doctors concluded that she had a hemorrhagic stroke, meaning a stroke that resulted from a weakened vessel that ruptured and bled into the brain.
Dukeman was treated quickly and survived. But her left side was paralyzed.
“I couldn’t walk. I couldn’t sit up. I couldn’t stand up. I couldn’t go to the bathroom. I couldn’t do anything by myself. It was totally devastating.”
Dukeman worked hard at rehabilitation, both as a patient, then later as an outpatient. She exercised on her own, including walking on her treadmill, doing crunches and leg lifts on an exercise ball and exercising her arms and hands.
Even as she progressed, she remained embarrassed about her limited use of her left side and her use of a cane. She felt ugly and fearful. Her once-daily trips into Clinton became infrequent. She became lonely.
Late that year, she and Smith — acquaintances for several years — ran into each other at the Clinton Post Office. Dukeman told Smith about the stroke and Smith told her about the support group that she and Chris Donnan of Clinton organized in 2007 after their spouses had strokes.
“The medical community is wonderful (for treatment and rehabilitation), but after that, you feel alone and afraid,” Smith said. The idea behind the support group was to provide stroke survivors and caregivers with peers.
When the group organized, it formed a partnership with the Central Illinois Neuroscience Foundation in Bloomington, which provided a home for group meetings. Leslie Campbell, the foundation’s clinical research manager, became group facilitator.
Even though more can be done for stroke patients who get the hospital quickly compared with several years ago, some patients still need to relearn how to speak, walk and use their limbs.
“Stroke can be devastating,” said Dr. Ann Stroink, a neurosurgeon. “Even though the hospitals have done their job and patients are done with rehabilitation, there is an emptiness. That’s what the support group addresses. Survivors and caregivers discuss ‘Hey, what works for you? How did you handle this?’”
The face-to-face socialization helps survivors and caregivers to realize they aren’t alone. “People feel validated,” Stroink said.
The first half of meetings are education sessions about issues such as balance, nutrition and exercise, Campbell and Smith said. For the second half, survivors meet in one room and caregivers in another room to discuss mutual concerns.
“Alonna is an amazing gal but I could tell she was depressed and frustrated,” Smith recalled. “I thought the group could help her.”
“I was surprised when I first went,” Dukeman recalled. “I thought I was the only one like this. I realized I’m not the only one dealing with these deficiencies. I look forward to the meetings.”
Dukeman has returned to work, her exercises are strengthening her left side and she hopes to eventually make a full recovery. Even as she works on her left side, Dukeman — who is right-handed — has learned to type, bake, crochet and do other things using mostly her right hand.
She always used her right hand for her adding machine at work, so she hasn’t missed a step there, she said. Baking and crocheting take longer but she’s learned patience.
“I used to make 120 turtles (candies) in 20 minutes. Now, I take that much time just setting up. But I can’t dwell on that.”
The group has helped her regain her self-esteem and has given her the courage to go out more.
“I feel so good. I’ve learned to accept who I am.”
Plenty of help
In Central Illinois, there are a variety of support groups for disease and injury survivors and their family members. Here are a few of them:
Alcoholics Anonymous-District 10
309-834-0586, 309-829-0782, 217-935-9411 or 309-452-5413.
Bariatric Support Group
Advocate BroMenn Medical Center, Normal, 866-205-7915
Bereavement Support Group
Abraham Lincoln Memorial Hospital, Lincoln, 217-788-4663
Breastfeeding Support Group
Abraham Lincoln Memorial Hospital, 217-605-5231.
Cancer survivors and family members
Community Cancer Center, Normal, has several support groups, 309-451-2217
Caregiver Support Group
Co-facilitated by Advocate BroMenn Adult Day Services and PATH. Meetings in Normal and Clinton.
309-268-1710 or 309-827-4005
Central Illinois Mended Hearts
Chronic Fatigue and Immune Dysfunction/Fibromyalgia Syndrome Support Group
Depression and Bipolar Support Alliance
Dr. John Warner Hospital, Clinton, Melinda.firstname.lastname@example.org
Easter Seals Central Illinois
Eating Disorders Program
OSF Saint Francis Medical Center, Peoria, 309-655-2738.
Epilepsy Resource Center of Central Illinois
Fragile X Syndrome
Free Living with Diabetes
Gastric Bypass Support Group
OSF Saint James-John W. Albrecht Medical Center, Pontiac, 815-934-5429.
St. Mary’s Hospital, Streator, 815-673-2311, ext. 3479
Advocate BroMenn Medical Center, 309-268-5499.
OSF Homecare Services,
Hannah Group (infertility)
Dr. John Warner Hospital, Kathy.email@example.com.
Illinois Spina Bifida Association, Central Illinois group
Leukemia & Lymphoma Society-Illinois Chapter
Life After Loss Support Group
OSF Saint James-John W. Albrecht Medical Center, 815-842-4545
Lupus Foundation of America—Illinois Chapter
Multiple Sclerosis Support Group
NAMI of Livingston/McLean Counties
Neonatal/Newborn Loss Grief Support Group
Advocate BroMenn Medical Center, 800-323-8622.
Parkinson’s Disease Support Group
Pontiac Celiac Disease Support Group
OSF Saint James-John W. Albrecht Medical Center, 815-842-4536
Dr. John Warner Hospital, Charity.firstname.lastname@example.org.
Stroke/Brain Injury Support Group
217-935-5476 or 217-935-8789
TOUCH—The Organization for Understanding Children’s Hearts
United Ostomy Association, Bloomington-Normal Chapter
Hopedale Medical Complex, 309-449-4500