Peer support results in lasting friendship for stroke patients

Jeff Schmidt and Tom Johnson are close in age with unique personalities combining wit and optimism. Their other common denominator is being stroke survivors who bonded during their recovery at Madonna Rehabilitation Hospital.

Tom is 57 years old and enjoys a rewarding, but physically demanding job in maintenance for the National Resources District in York, Neb. On March 19, Tom experienced two intense dizzy spells during work.  He shook it off and disregarded the gradual weakening of his left hand and arm. By the day’s end, Tom’s left foot was dragging; identical to what his mother experienced during her stroke. “But, I was in total denial and never told my coworkers what was happening,” said Tom. The next morning, Tom was in the emergency room at Annie Jeffrey Health Center in his hometown of Osceola where doctors diagnosed his clot stroke.

During their stroke recovery, Jeff Schmidt (left) and Tom Johnson played a light-hearted prank on their therapists to add humor to their Body Weight Support Treadmill therapy.

During their stroke recovery, Jeff Schmidt (left) and Tom Johnson played a light-hearted prank on their therapists to add humor to their Body Weight Support Treadmill therapy.

Jeff, 55, a successful self-employed entrepreneur, lives a busy life with his wife, Anne and teenage son, Jerome, in Lincoln, Neb. Despite a recent Type 2 diabetic diagnosis, Jeff considered himself healthy. He’d never experienced an overnight hospital stay. “I thought I was invincible,” said Jeff, who ignored small stroke warning signs prior to his attack on March 25. Early that morning, Jeff didn’t feel right and within hours was slurring his speech. An MRI at Bergan Mercy Medical Center in Omaha revealed a stroke had paralyzed the left side of Jeff’s body.

Tom and Jeff transferred to Madonna just a few days apart. They struck up a conversation during dinner and realized their strokes were similar. The two men had adjoining rooms and became fast friends. “We kind of played off each other with humor,” said Tom. Their friendship evolved through exchanging laughs, feelings and gauging each other’s progress. “It helped so much to have a friend to bounce things off of,” said Tom.

Amy Goldman, stroke program manager, lists fostering peer support as a key component of Madonna’s Stroke Rehabilitation Program. “Stroke survivors and caregivers describe an overwhelming sense of hope and encouragement from sharing their stories and supporting each other,” said Amy. Experiencing a common circumstance or predicament can be a powerful component of healing. “He’s like a brother to me now,” said Jeff, referring to his relationship
with Tom.

Therapy sessions for Tom and Jeff included technology like the Proprio 4000, E-Stimulation, FES bike and the Body Weight Support Treadmill (BWST). Both men developed a love/hate relationship with the BWST. Their results were fantastic, but wearing the harness felt  uncomfortable. To liven things up, Tom and Jeff, and another stroke patient, Greg, played a prank on the therapy team. One evening, the trio wrapped the BWST with “wet paint” tape and adorned it with caution signs. It didn’t take the therapists long to figure out the culprits and everyone had a good laugh. “It was a stress reliever for us, but the staff needed it, too, as they deal with stressful situations every day,” said Jeff.

Having a stroke changed Tom’s outlook on life. “When your body starts giving you warning signs, pay attention and don’t take life for granted!”

Jeff’s priorities shifted too. “Mundane things don’t matter as much now.” Both men can walk independently with a cane. They’re making plans to keep in touch. “It’s amazing the camaraderie you form here,” said Tom.

___________________________________

Peer support and recovery

By: Amy Goldman, PT, DPT
Madonna Stroke Program Manager

Peer support and socialization can have an influential impact on recovery after a life-changing injury or illness. Patients benefit from understanding that they’re not alone during a devastating experience.

For patients and their families, peer support:

  • Provides opportunities to share concerns with someone who has experienced a similar injury or illness
  • Gives hope to those recovering that they can cope with life after injury or illness
  • Offers the opportunity to share current information and knowledge of available resources
  • Offers support and caring while listening to survivor and caregiver concerns

For healthcare professionals, peer support:

  • Adds a unique dimension to the traditional healthcare team
  • Provides a communication link with patients
  • Helps clarify the needs of patients and their caregivers

Each stroke survivor is faced with a unique set of disabilities and losses, and each copes with them in his or her own way. The acceptance and emotional support a peer visitor or stroke support group offers can often be the key to uncovering the hidden strengths in many stroke survivors and their caregivers. Peer support allows individuals to share similar stories while learning to live with the changes and accept their “new normal.” Visits with a stroke peer visitor or other survivors at a local stroke support group gives survivors and their caregivers a chance to share concerns and support one another. New goals and friendships are started, renewing hope and encouraging independence.

Choosing a stroke rehabilitation program that encourages peer support as an essential component in the rehabilitation process is important to the stroke survivor’s recovery. At Madonna, we offer weekly peer visits from former patients (stroke survivors) who listen, encourage and offer support and hope to current patients and their families affected by stroke. In addition to peer visitors, it is very common for current stroke patients and their family members to develop connections and offer support and encouragement to one another while developing long-lasting friendships.

For more information on peer support or stroke support resources:

Volunteering was his silver lining after MS diagnosis

Dan Kehler went into a deep funk after being diagnosed with Multiple Sclerosis (MS) in 2005. MS is a chronic, often disabling disease that attacks the central nervous system. Dan was only 49 years old when he was forced to quit the auto technician job he loved. Instead of working on cars, Dan began spending his days watching television. “After my MS diagnosis, I got very depressed,” said Dan.

Angel Dogs have been bringing a sense of being at home to patients at Madonna Rehabilitation Hospital for more than 10 years. Anxiety, fears, loneliness have been lessened by many individuals who have received visits or met an Angel Dog in the hall. Numerous patients and their families have been given a refreshing welcome change in routine and something different to look forward to during a day filled with therapies.

Angel Dogs have been bringing a sense of being at home to patients at Madonna Rehabilitation Hospital for more than 10 years. Anxiety, fears, loneliness have been lessened by many individuals who have received visits or met an Angel Dog in the hall. Numerous patients and their families have been given a refreshing welcome change in routine and something different to look forward to during a day filled with therapies.

His wife, Karen, was working as a nurse at Madonna and suggested that Dan check out the Angel Dog volunteer program. He had trained dogs before, but currently didn’t have a canine companion. During a visit to the local humane society, a beautiful golden retriever looked up at Dan. “Our eyes met and I knew he was the one,” said Dan, who named the three-month-old puppy Max. After months of training, Max and Dan applied and were accepted as an official Madonna Angel Dog team. The duo has become quite popular with patients, residents and staff. “Many of the folks on VAU/SN look forward to seeing Max and enjoy his tricks,” said Dan. Twice a week you can find Dan and Max making the rounds at the hospital. “Patients might not remember Dan’s name, but they sure know Max’s,” said Marla Buresh, volunteer resources coordinator.

Max is famous for his tricks – giving a high five, waving and playing dead – and isn’t shy about performing. “The pediatric unit is Max’s favorite; he loves the kids,” said Dan, who carries treats that people offer as a reward to Max.

“It’s been a silver lining after my MS diagnosis,” said Dan.

Volunteering at Madonna has greatly impacted Dan’s life. It’s rewarding for him to see the resolve of patients and watch their recovery progress. “After I started visiting Madonna, I realized I don’t have it too bad,” said Dan. “Many of these patients have been through so much.”

It’s the relationships they establish that fulfill this Angel Dog team. Dan shares several stories of Max — trotting in front of a little girl and motivating her to pedal a tricycle faster, a brain injury patient who responded for the first time in months when Max laid his head on her bed. And, he can’t forget the patient who initially resisted a visit from lovable Max, saying, “I don’t want to see no darn dog!” Dan gently encouraged the man to pet Max and by the end of their visit, the patient stated firmly, “Now, you bring him back.” The patient began requesting visits and saving scraps of food for Max. People enjoy interacting with Max and often say it alleviates the stress of missing their own pet.

It’s been equally therapeutic for Dan. “I love making people smile and shining some light into their life,” said Dan, as he tenderly stroked Max’s head. His four-legged friend wagged his tail in agreement.

_____________________________________________________________________________________

Do you think your pet might be a good fit for Madonna’s Angel Dog Program? It only takes a few steps to find out. 

Diaphragm Pacing System: A closer look

Mollee Hallet taps her finger at the photo on her cell phone – showing a beautiful salmon-colored strapless dress with tiers of organza billowing to the floor. She’s excited to wear the gown to her high school prom next month. “It’ll show off my neck,” said Mollee, smiling. It’s a bold move for the 18-year-old from Andover, Kan. For the first time in her life, Mollee won’t have a tracheostomy tube.

Mollee Hallett had a NeuRX DPS implanted to help her gain independence in her breathing. Mollee was born with Chronic Central Hypoventilation Syndrome and has relied on the trach and ventilator since she was four weeks old.

Mollee Hallett had a NeuRX DPS implanted to help her gain independence in her breathing. Mollee was born with Chronic Central Hypoventilation Syndrome and has relied on the trach and ventilator since she was four weeks old.

Mollee was born with Chronic Central Hypoventilation Syndrome (CCHS). Diagnosed at four weeks old, the high-risk newborn was hospitalized for four months. Early on, Mollee relied on a trach and ventilator to keep her alive.

By the time she was six years old, Mollee still had the trach, but was dependent only on the vent at night. Mollee has a mild form of CCHS where she breathes normally while awake, but hypoventilates during sleep. Her breathing becomes too slow or shallow to meet her body’s needs. “Mollee’s been hospitalized so much,” said her mother, Dusty. She’s nearly died a few times, too. But Mollee has a spunky attitude. “It’s what saved her,” said Dusty.

Throughout her childhood, Mollee wasn’t treated any differently. She actively participated in years of dance classes and loves playing softball. Mollee describes herself as strong, open-minded and independent. But the constant presence of the vent/trach duo has inhibited her lifestyle. “Some of my old vents weighed as much as 50 pounds,” said Mollee. Family vacations required bringing two vents – one for a backup. Sleepovers with friends had to be thought out well in advance. And, swimming was out of the question.

Frances Kleffner, a respiratory therapist and Mollee’s grandmother, researched the NeuRx DPS® and found Madonna. She felt it could make a dramatic difference in Mollee’s life. The device helps patients with CCHS breathe easier, live longer and in some cases, eliminate their dependence on a ventilator. “I thought Mollee would be a good candidate for it,” said Frances. Her granddaughter had to wait until she was 18 to be evaluated because the DPS implant is non-FDA approved for patients under 18.

Once approved for the pacer surgery, Mollee had mixed feelings. “I was like ‘Okay let’s do it!’” said Mollee, but admits she was apprehensive. Although it may sound strange, she said she is going to miss the trach. “I feel like I’m losing a part of me because I’ve had it most of my life,” said Mollee. “I’m often known as the girl with the thing in her neck.”

On March 6, Mollee elected to have the NeuRx DPS® implanted. The minimally invasive two-hour surgery was performed by Dr. Greg Fitzke with Surgical Associates at Saint Elizabeth Regional Medical Center in Lincoln, Neb. Mollee relied on tunes from country music artist Jason Aldean to calm her nerves. “You’ve just got to believe in yourself and remember the goal,” said Mollee.

Rebecca Wills, MA, BA, CRT-NPS, pulmonary program manager at Madonna Rehabilitation Hospital collaborated with colleagues at Saint Elizabeth’s and Dr. Fitzke to ensure a successful procedure for Mollee. “We’ve had the joy of helping to make a difference in Mollee’s life,” said Rebecca.

A few days after surgery, Mollee returned home to Kansas. Her body needs time to adjust to the implant before she returns to St. Elizabeth’s to participate in a sleep study. Once Mollee is safely sleeping all night, her trach will be removed.

Mollee can’t imagine going somewhere without carting a vent and has trouble visualizing herself without the trach.

It’s definitely going to be life-changing for me.

She’s diving back into school and social activities. First on the list – getting photographed in her beautiful dress at the Andover Central High School prom.

_________________________________________________________

NeuRX Diaphragm Pacing System

electrodesThe NeuRx DPS™ device, implanted during a minimally invasive surgery, helps individuals breathe easier by conditioning their diaphragm muscle through electrical stimulation. Madonna Rehabilitation Hospital is among a handful of institutions nationwide, and the only Nebraska rehabilitation hospital, that facilitates the DPS™ implantation and provides post-operative rehabilitation when indicated.

Candidates for the NeuRx DPS™ are patients with:

  • High level spinal cord injury resulting in dependence on ventilation
  • Bilateral intact phrenic nerves below the level of the spinal cord injury
  • Individuals with ALS who have phrenic nerve function and documented chronic hypoventilation.
  • Individuals with chronic central hypoventilation syndrome (CCHS)
  • General good health otherwise

For more information, contact Rebecca Wills at rwills@madonna.org.

Follow

Get every new post delivered to your Inbox.

%d bloggers like this: