‘I’m getting my life back’

After a battle with Guillain-Barré syndrome, Heidi Roine is learning to move again. And live again.

The symptoms started so innocently.

Heidi Roine’s sense of smell seemed overstimulated by a wedding reception centerpiece.

Basically, a basil plant bowled her over.

“Somebody broke open a basil plant and the smell threw me back,” the East Grand Rapids, Michigan, resident said. “The next day, when I put my hand on my countertop, it felt 10 times colder than it should have. It was summer and I had the air-conditioning on, but it almost felt like I was putting my hand on an ice cube.”

Next came funny sensations in her feet. Inexplicable. But not imagined.

“There was a coldness in my fingertips and hands, they were tingly, like they fell asleep,” Roine said.

She had trouble getting off the couch. Then, she started falling down.

“I got up from the sofa and fell to the floor,” she said. “I had to crawl to the bathroom. I called my daughter and told her, ‘Something is wrong. I can’t walk.’ My son-in-law came over. I went to the door and fell again.”

And the pain. Almost unbearable pain.

“I had such terrible pain in my back, my shoulders, all the way down to my spine,” she said.

Muscle relaxants didn’t touch it. Nothing did. She lost all bowel control. She had no idea what could be happening. She exercised regularly, ate healthy. She’s social and active.

Unexpected diagnosis

Her daughter took her to the emergency room, but medical personnel couldn’t find anything wrong.

During a visit to her primary care physician, the doctor tested her reflexes. She had none.

“They sent me straight to Spectrum Health Blodgett Hospital for a spinal tap,” Roine said. “My fluids were yellow, which showed some protein there.”

In July 2015, with results of the spinal tap, doctors diagnosed something Roine had never heard of—Guillain-Barré syndrome, a life-threatening condition in which the body’s immune system attacks the nerves. The mysterious syndrome is often preceded by a bacterial or viral infection and occasionally occurs after a vaccination or surgery.

“They admitted me to the third floor,” she said. “I could barely walk and couldn’t get out of the bed. It attacks your peripheral nerves and muscles. It’s ascending, it moves from your feet, up. It stopped below my breast bone. I felt like I had this vice all the way around me.”

Doctors warned her she could end up on a respirator, or worse.

She went through plasmapheresis treatments through Michigan Blood.

“They put in this port and take your plasma out and put in new plasma,” she said. “I received five treatments, the first one three days after I was admitted.”

With the help of plasma treatments, Roine battled back. But to qualify for therapy in the inpatient rehabilitation center, she had to be off pain medications and able to endure three hours of therapy, five days per week. She qualified.

“I wanted to get up and move my muscles, otherwise you’re status quo,” Roine said.

During inpatient rehabilitation, she worked through every muscle in her body via physical therapy and occupational therapy.

“That whole rehab area did such a great job helping me in my recovery,” Roine said.

She even resumed one of her favorite hobbies—gardening.

“They have a garden down below,” she said. “I could barely stand, but I could lean over and do some gardening. I like art so we did art projects. They took me out with a walker, down ramps and around the hospital. They also taught me how to maneuver a wheelchair in case I had to go home in a wheelchair.”

Therapists talked with Roine about building a handicap ramp at her home. Her determination squelched the idea.

“I would crawl up the steps before I used a ramp,” she said.

Relearning life

She learned to bake cookies again and, perhaps sweetest of all, she built strength again.

A month later, she returned home and continued with Spectrum Health At Home physical and occupational therapy.

“I tired so easily,” she said. “You really have to conserve your energy. Just to get up from the living room couch and walk into the kitchen to make a sandwich was very tiring. I could barely stand. I came home in a wheelchair but I quickly graduated to a walker.”

She also graduated to outpatient therapy in September 2015.

Lisa McInally, a physical therapist at Spectrum Health Integrated Care Campus at East Beltline, said Roine progressed well during three months of Outpatient Rehabilitation.

“She had a positive attitude, which really helped her progress,” McInally said. “She was very determined to perform her exercises and work on things at home, which was also beneficial to her.”

Friends and neighbors ran errands for Roine. Family was ever near.

But she fiercely missed her independence. She set a new goal—driving again.

In June 2016, she got her doctor’s OK to move forward. Spectrum Health occupational therapist Angie Kamminga worked with Roine on a computerized driving simulation machine at the Drivers Assessment Program.

“She mentioned to me that although she had great family and friend support—people who could drive her to appointments or anywhere she needed—returning to driving would allow her to be truly independent again,” Kamminga said.

Roine successfully completed reaction-time testing and simulated driving scenarios. She also responded well to unpredictable vehicles and pedestrians entering the roadway.

In the driver’s seat again

Roine regained her wheels. And her freedom.

Sitting in her home on a recent weekday afternoon, surrounded by antiques, she reflected on her journey.

It was one foot in front of the other, always believing, never giving up, never giving in.

“I used to sit there and watch people walk and think about how we take even walking for granted,” she said. “I’m much improved over the last year. I can go grocery shopping and do things on my own. I walk to my appointments to see the rehab doctor or for blood work.”

The numbness continues.

“It goes way up to here,” she said, pointing to an area on her shin. “The tingling in my hands and feet may never go away.”

Climbing the stairs to her bedroom can sometimes feel like Mt. Everest. But she can live with that. Life has resumed, and she can play with her 7-year-old granddaughter again.

“I thought we’d never be able to do art again together, Grammy,” Aubrie recently told her.

Now they spend precious moments creating.

“I like to do art things with her, like sketching or making things out of reusable items,” Roine said.

Roine also enjoys time with her 4-year-old grandson, Toren.

“He called my cane ‘a candy cane,’ handing it to me as needed,” Roine said.

Walking with a neighbor and yoga classes at a nearby studio aided her progress. The yoga has helped build her muscle, strength and balance.

She writes every little milestone in a notebook that her daughter gave her when she was in the hospital.

Every moment is there, from being able to lift her left leg on Sept. 1, 2015, to doing her own laundry in January 2016.

The title of her health journal: “Life is a journey, not a destination.”

And she is traveling it well.

She wants to cross-country ski again soon, and hike and travel. Maybe even explore Paris someday.

“I went through such a journey,” she said. “I’m getting my life back.”

To learn more about Spectrum Health rehabilitation programs, visit spectrumhealth.org/rehab.

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Comments (28)

  • Wow, Heidi! I had no idea what you were going through. You have been determined to do things yourself, and that makes a difference. Glad to hear you’re still moving onward and upward.

  • Heidi my son,at age 21, had the same. We were fortunate that when he finally went to the Emergency room at St. Mary’s he had a doctor that had just seen another patient with it. I remember what it was like to watch them test his reflexes and he had none. I was scared. They did the spinal tap within an hour and it was positive. A month later he was back at college and has not had any problems. The doctors said he had an exceptional recovery. I credit the fact that he was in very good shape to start with, his doctors and nurses at the hospital and mostly GOD and the POWER of Prayer. So say strong and you will continue to move forward.

  • I am a GBS survivor as well! It was 1970 and I was 7 yrs old. It was diagnosed as “a virus that acts like polio” and was treated thusly.

    I am glad you are getting stronger! {{HUGS}}

  • Heidi, I am glad you never gave up. You are a strong woman and will continue to work hard to get back to normal.You have been inspirational to all of us. I think it is time for another lunch soon. Keep in touch.

  • Heidi, sending you positve healing vibes. I’m so glad to hear you are getting your life back and are so strong and positive. Good luck and thanks for being an inspiration.

  • Hi Heidi,
    You are doing so well. You certainly have shown how strong of a person you are to be able to over come the horrible side effects of GBS . Looking forward to spending some time with you once again when Spring arrives. Take care of yourself. You are one special lady.
    Sue Farrekk

  • You rock Mom!! You worked SO hard to get where you are and through it all you had a positive attitude and amazing spirit! xoxo

  • Great story of the human spirit and trained medical professionals. I can emphasize with you when you discussed the profound weakness. I was diagnosed by Dr. Raymond Gonzalez of Grand Rapids with a “sister disease” dermatomyositis, following skin cancer surgery. The wonderful physical rehabilitation staff at Spectrum- Kent Community Hospital & Spectrum South helped restore my health. I will be forever grateful to them and now have a profound daily appreciation for the gift of health.

  • The journey continues and you continue to work so hard. You have been so incredibly strong through all of this. You’re an inspiration, mom! Keep climbing! I love you- xo

  • I too, am a GBS survivor. I had a 22 month old daughter and a 1 month old son when I was diagnosed and found myself being admitted to Butterworth on Christmas Day, 1996. I had wonderful neighbors who came to our rescue, helping my husband with the kids, bringing meals, etc. My entire body (even my tongue and throat) ended up paralyzed except for my diaphragm. Thank God. I was that close to having to be on a ventilator, with a much much longer recovery time. I had been a long distance competitive runner, and I am happy to say I recovered just about 100% after a few months. The only repercussion I still have is some vertigo if I try to run too far too fast, so I no longer compete, but I am running. Interesting fact: only 1/100,000 are diagnosed with this disease. Pretty rare.

  • My beautiful Mother lost her life to this horrible disease at just 51 years old 😔
    She had empazena and COPD which weakened her immune system and triggered the Guillian Barre. It paralyzed her from her feet all the way up to her chest and had to be put on life support. The doctors at OSU did not really know that much about it and were using her as a teaching guide. They did the plasma treatments and she slowly began to be able to move her hands again. She was always in so much pain and could never get comfortable at all. She was diagnosed with it in September of 2010 and it took her life in January of 2011. I am really glad to hear success stories about people who overcame it.

  • So wonderful to hear, I had an episode that the doctors didn’t diagnose but had the same symptoms other than my pain was in the fronts of my legs, almost like “constant charlie horses” – a chiropractor actually diagnosed me after months of rehab. Thanks for sharing your story – you can get better so don’t give up!

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