Becoming an Advocate After Experiencing Stroke: Interview with Dana Rivera

In this interview, we speak with Dana Rivera about her experience surviving a stroke in June 2009. She is now a recovery coach for stroke survivors and leader of a Stroke Support Group at UCLA, sharing the struggles she faced when trying to regain her independence after her stroke. She also has created a Facebook group page, Stroke of Courage (www.facebook.com/groups/655485747807882/). Through speaking and advocacy, she is bringing attention to stroke awareness. 

Tell us about the day you experienced your stroke. 

It was seven years ago, and I had just returned on a trip to Spain. About two days after my flight home, I was waiting to pick up my son from school, and thought I’d go into a store to browse for a few minutes. As I was getting out of the car, I dropped my keys and my arm felt like it flung out of its socket — it was a very weird sensation, but I proceeded to continue to walk into the store. Once inside the store, I started looking around, and all of a sudden, I just collapsed. The salesperson came over and asked if I was alright, and while I could understand what they were asking me, I couldn’t physically get my body to stand up. I believe I was also slurring my words at the time, and overall felt very incoherent. So the salesperson called 911, and I was brought to UCLA Medical Center in Santa Monica. At the time, I had not yet experienced any paralysis, but was still incoherent and had a headache. The doctor there later released me, thinking it was a menopausal migraine. With my husband being out of town with my eldest son, my mother came and got me and took me back to my home. However, on the way home, the stroke intensified, and by the time I got home into my bedroom, I was completely incoherent and vomiting. My dad took me back to the hospital, and when I arrived the second time, I was totally paralyzed on my left side, and it was obvious I was having a stroke. The doctor who had released me said he had made a big mistake. 

What had caused your stroke?

They did a CAT scan and MRI, which found that I did indeed have a stroke caused by a patent foramen ovale (PFO), a hole in the atrium walls that affects 1 in 4 people. Many people live with it their entire lives and don’t know they have it until they get a clot, which can travel to the brain and cause a stroke. I had never had an MRI before, so I never knew I had the PFO; there are no symptoms except for migraine headaches, which I have suffered from my whole life. However, people have migraines for so many different reasons. Being fit my whole life, no one would have ever guessed that I would have a stroke. 

What was your recovery like? What were some of the key elements in your recovery? 

I spent a week in the ICU and then was transferred to UCLA’s Neurological Rehabilitation and Research Unit (NRRU) at 1 West, where I spent three and a half weeks learning to walk and use my 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 anymore what my future held for me, especially since I was now paralyzed, so it was a very scary time. 

However, if you are blessed to be able to go into an acute setting, that is just the starting point of your recovery and by no means an end result. It’s an opportunity to really start working hard on getting your deficit back. After about three and a half weeks, I left the acute center and went home to outpatient therapy. In addition to this, I incorporated daily walks with my husband every single day, beginning with half a block and progressing to one block, and so on. By the three-month mark, I was able to walk about two miles, and as the weeks went on, I was able to finally get rid of the brace, walker, and cane. It was like peeling away each apparatus, which was so freeing, because in my mind that equaled independence again. I began to feel more positive and optimistic that I was getting better; stroke survivors are often focused on the time frame of When am I going to get better? I’m not seeing results! It will and does happen, it’s just a very slow recovery. So it’s important to make small goals for yourself and not aim for big goals, because they are too difficult to achieve in this setting. 

In addition to walking, I incorporated yoga in my recovery to help me work on my arm, wrist, and hand strength. The fear factor is very high in the beginning after a stroke, because you’re scared you are going to suffer another one. I was very fearful, so I eased that voice in my head by learning how to breathe with yoga breaths and meditating. This helped me to center myself and have faith that my body wasn’t going to give out again, and that I was doing everything within my power to contribute to a successful recovery. 

I was on blood thinners for six months after my stroke, and finally decided to have the procedure to close the hole in my heart so that I would no longer have to be on blood thinners. I now take an aspirin (81 mg) every day, which is a big difference from being on blood thinners for the rest of your life! 

It took about four and a half months for me to physically get better. I attribute my successful recovery not only to my hard work and determination, but also to the motivation and support of my husband, who was my rock and by my side 24/7, and my children, who are my biggest cheerleaders as well. My family, friends, and community were all amazing in helping me, giving us home-cooked meals, and taking me to physical therapy sessions. I was determined to walk again in my wedge heels — as a woman, wearing heels is a big part of your femininity. I was able to reach my goal and walk in my heels on my husband’s birthday, five months after my stroke. It took me a full year to feel like the old me again; however, this time I was a better version because of everything that I had gone through. 

Why did you become a recovery coach and advocate? 

It’s important to remember that when someone has a stroke, it’s like an earthquake has gone off in their brain. It shakes up so much, that it takes time for the foundation to settle. My foundation settled within the year, around my one-year anniversary mark. However, I don’t use the word anniversary, which implies a happy occasion; I use the word remembrance. After a full year, I was finally ready to start sharing my story, in hopes of helping others. This led me to UCLA’s NRRU, where I had been a patient. I’ve spent the last six years volunteering there, leading and co-leading support groups, as well as creating my own support groups in my community in the Pacific Palisades and Brentwood, California. I am an advocate for the American Heart Association, have participated in the Rose Parade, some charity fashion show events, and radio talk shows. I feel very blessed to have the platform to tell my story in hopes of encouraging other survivors, letting them know that with determination and motivation, they can get better. Their recovery may not look the same as mine, but every stroke is different, and having support is such a main ingredient in that recovery process. 

Do you find that you get asked the same questions about recovery by other stroke patients?

Yes, including questions such as When am I going to get better and Why do the doctors tell me that I’m not going to walk again? I try to relay to them that doctors come from a scientific background, and while there are plenty of doctors who have a compassionate bedside manner, some do not. So when patients don’t get answers from their doctors, they can become very discouraged. This is why it’s important to seek out a support group, because that is where patients can hear the inspirational stories that they can build their own recovery on. 

Unfortunately, nobody thinks a stroke is going to happen to them, so they don’t pay attention to symptoms and prevention. That is why I feel so passionate about stroke awareness, because I had been a healthy 44-year-old woman, but I had a genetic disposition that I didn’t know about. I educate patients now about strokes and TIAs. It’s really important to be mindful and pay attention to the symptoms and what is going on in your body, to prevent a stroke from happening. 

My mission is to do the best I can in regards to stroke awareness. I love sharing my story and talking to people about stroke prevention. Even if a stroke doesn’t happen to them, it could still happen to their loved one or friend, so it’s important they be prepared. I take advantage of any of platform to bring out awareness and inspire. 

How is your life different now post stroke?

Post stroke, I feel I have created a new identity for myself — I’m not just a mother or a wife anymore, which are roles that I cherish. It’s ironic that having this stroke has led me to this new passion of being a stroke advocate. The volunteering is all from my heart, and it’s all on my own time. I don’t think you can put a price on that. I continue to seek out new opportunities on this path.