PNIBLOG

Stroke Patient Support Group Leader

Pacific Stroke & Aneurysm Center’s patient support group leader Dana Rivera, tells her story from devastation to success.

In the summer of 2009 at the age of 44, Dana’s life changed forever. An active, full time mother and wife, Dana Rivera suddenly experienced startling symptoms. “As I was getting out of the car one day, I dropped my keys and my arm felt like it was flung out of its socket. It was a weird sensation, but I thought nothing of it and continued to walk into the store. Once inside, I started looking around, and all of a sudden, I just collapsed. The salesperson came over and asked if I was OK, and while I could understand what she was saying, I was feeling incoherent and slurring my words. In addition, I couldn’t get my body to move and stand up.”

Dana was taken to a hospital, where she was released after her symptoms subsided. Doctors diagnosed her with a menopausal migraine and sent her home, “I had not yet experienced any paralysis, but was still feeling incoherent and had a headache. In the car, the symptoms worsened, and by the time I got home, I was completely incoherent and vomiting.” Dana was rushed back to the hospital, and when she arrived for the second time, she was totally paralyzed on her left side. It was obvious she was having a full-blown acute ischemic stroke.

At the hospital, scans showed that Dana had suffered a stroke caused by a patent foramen ovale (PFO)— a hole in the atrial wall of the heart that affects 1 in 4 people. Although everyone is born with such an opening, it generally closes within a few months. “Many people live with it and don’t know they have it until they get a clot, which can travel to the brain and cause a stroke. That’s what happened to me. I had never had an MRI before, so I never knew I had the PFO. Being fit my whole life, no one would have ever guessed that I would have a stroke.”

You may not control all the events that happen to you, but you can decide not to be reduced by them. – Maya Angelou

Dana spent a week in the ICU and was then transferred to the acute rehabilitation unit where she spent three and a half weeks learning to walk and use her left hand and arm again. “It was a very dark time. As the mother of four teenagers between the ages of 13 and 18, I had always been super mom, multitasking and doing everything for my family. I didn’t know what my future held for me anymore, especially since I was now paralyzed. It was very scary.”

“The acute setting was just the starting point of my recovery. It was the opportunity to begin working hard on getting my deficit back.” After Dana left the acute center, she went home and received outpatient therapy. In addition to this, she incorporated daily walks with her husband, beginning with half a block and progressing until by the three-month mark, she was able to walk about two miles. As time went on, she was able to finally get rid of the brace, walker and cane. “It was like peeling away each apparatus. This was so freeing, because in my mind that equaled independence again and I began to feel more positive and optimistic. I was getting better.”

Recovery was very slow but Dana kept at it. She incorporated yoga into her regimen to help her regain balance and mobility as well as develop arm, wrist and hand strength. “The fear factor is very high in the beginning after stroke, because you’re scared you are going to suffer another one. I was very fearful, so I eased this feeling with yoga breathing and meditating.”

It took about four and a half months for Dana to physically recover, something she attributes not only to her hard work and determination, but also to the motivation and support of family and loved ones. “My family, friends and community were all amazing. They helped me in so many ways like bringing home cooked meals and taking me to physical therapy sessions. “

Dana Rivera, 2016“Stroke survivors are focused on the timeframe for recovery. It will and does happen, it’s just very slow. So it’s important to make small goals for yourself to keep motivated, because big goals can be too difficult and too daunting.” One of Dana’s goals was to walk in her wedge heels again. “As a woman, wearing heels is a big part of my femininity. I was determined to reach my goal and five months after my stroke I was able to walk in my heels on my husband’s birthday.” After six months, Dana decided to have a procedure to close the hole in her heart so that she would no longer have to be on blood thinners. She now takes a daily low dose aspirin instead.

It took Dana a full year to feel like herself again, “But this time I was a better version of myself because of everything I had gone through.” With the hope of inspiring others, she wanted to share her story and experience. “Being so young when I had my stroke, I thought my life could have been over in so many different ways. Dealing with the physical, emotional and mental challenges of recovery are not easy, and I wanted to help others young or old.” She approached UCLA’s Neurological Rehabilitation and Research Unit (NRRU) where she had been a patient and has spent the last 6 years volunteering by leading and co-leading support groups. In addition, she has created her own community support groups in the Pacific Palisades and Brentwood areas.

Support GroupDana began leading the stroke patient support group at the Pacific Stroke and Aneurysm Center located at Providence Saint John’s Health Center in 2015. She facilitates the free monthly group along with the hospital chaplain, inspiring survivors to stay motivated and focused on their recovery. Guest speakers include physician specialists, nutrition experts and the rehab team at Providence Saint John’s. When it comes to leading the support group she says, “I come to our participants in my authentic self. Being raw and vulnerable is a very important ingredient when working with survivors. I have the empathy and sympathy to understand what they went through and are going through. The most common deep concern is about when they are going to get better. I share with them that it is an ongoing recovery and every day counts…what they put into it physically and mentally yields results.”

Various topics are discussed including useful resources, new technology and clinical trials. Dana always checks in with each person to see how they are doing. “Apart from physical therapy, occupational therapy and speech therapy, a big part of stroke recovery that cannot be underestimated is attending a survivor support group. Depression is a major factor after having a stroke. Not many loved ones understand the fine line we walk every day. A group can offer a shoulder to cry on or simply provide a space where you can just listen. It becomes a family of sorts and as everything is confidential, it is a safe haven.”

An advocate for the American Heart Association, Dana has participated in the Rose Parade, charity fashion show events and radio talk shows. She encourages survivors by letting them know that with determination and motivation, they can get better. “Their recovery may not look the same as mine as every stroke is different, but having a strong support system is a main ingredient in each survivor’s successful recovery.”

 

For more information about the Stroke Support Group, please contact Renee Ovando, stroke program manager, at 310-582-7383, or email stroke.center@providence.org.

The groups provide free education and support for patients and families and are held on the first Friday of each month, 2pm-3pm.

Providence Saint John’s Health Center
3rd floor, Flora Thornton Conference Room
2121 Santa Monica Blvd., Santa Monica, CA 90404