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Survivor Stories

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H andicapped senior patient in a wheelchair talking with a doctor in the hospital

As a new platform, RebuildAfterStroke is eager to grow with your stories. We believe that every experience shared is a step forward in building a supportive network for stroke survivors and caregivers alike. If you have a tale of struggle, perseverance, hope, or love, we are here to listen and share it with the world. Your story has the power not only to inspire and comfort but also to educate and connect. 

Survivor Stories: Chronicles of Resilience and Recovery

In the heart of our community are the stories of stroke survivors. Each narrative is a story of challenges, triumphs, and determination. As we begin to populate our website, we extend a warm invitation to survivors: share your journey with us. Whether it's about overcoming daily challenges, celebrating small victories, or navigating the complexities of recovery, your story is a beacon of hope for others embarking on similar journeys.

Caregiver Stories: Narratives of Compassion and Support

Equally vital to our community are the caregivers, whose dedication and love form the backbone of recovery. If you are a caregiver, your insights and experiences are invaluable. By sharing your story, you shed light on the often-unsung dedication involved in supporting a loved one through stroke recovery. Your journey provides comfort, understanding, and guidance to others in similar situations, emphasizing the power of support and empathy.

Dom, 35, Tucson, Arizona

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September 9th, 2023, was expected to be a normal day, make breakfast, get kids ready for Football and head out the door for a 45-minute drive to the game…. but this day was different. I woke up not feeling well, I had a headache, stomach problems and just did not feel like myself, so I listened to my body and stayed home to watch my oldest son Gustavo play live on YouTube.

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My 10-year-old son, Xavier, decided to stay home with me and thank God he did because he literally saved my life. When I collapsed, he was nervous, scared and crying. I was afraid my kids were watching me die. That was a scary moment for me, especially seeing my toddler, Benny, run around asking his brother what's wrong with Mom. Xavier was scared and didn’t remember my phone’s passcode. I had to reiterate my passcode to him. My kids don't have their own cell phones. We don't have a land-line phone. It could have been a disaster if I weren't able to communicate with Xavier when I collapsed.

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When the ambulance arrived the EMTs examined me. They said I was probably not having a stroke. I said I know I'm having a stroke, but they still didn't believe me. I had to advocate for myself and insist on being taken to the hospital of my choice. Since I have worked at Sarver Heart center and Banner University Medical Center, I was very familiar with stroke signs and symptoms. I remember my dad arriving at my home and saying to the paramedics. “Would you listen to her? She knows what she's talking about!” Maybe it was because I was 35. Younger people having a stroke was unusual for paramedics. When I arrived at the hospital the doctors performed a thrombectomy and administered medication needed to break up a blood clot they thought I had. I underwent multiple tests, but a cause for the stroke was still undetermined. Ultimately, it was categorized as a cryptogenic stroke, cause unknown. During that time, they did find that I also had two aneurysms unrelated to the stroke.

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I was in the ICU for two weeks and went to Encompass Health for inpatient rehabilitation for another four to six weeks. I was paralyzed, unable to move my left side and had neuropathy. I'm still numb on my left side, and especially my torso. I've lost the left side of my vision in both eyes and am now legally blind. I think that's been the worst deficit of this experience.

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While I was recovering in the hospital, I did a lot of my own research to find out what happened to me. I didn't realize a stroke could happen at my age. We are so used to TV ads and pamphlets that place an emphasis on stroke in older adults. Now I realize stroke doesn't discriminate. Anyone can have a stroke regardless of age, sex, race, ethnicity, or zip code.

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Entering rehab I wondered “Why am I here? I'm the youngest patient in rehab.” It was odd for the therapists to work with a younger person too. They said to me, “You're going to get through this.” I just didn't believe them. I felt defeated and broken. They didn’t know what I had gone through. Support from someone who had experienced a stroke was the most important to me and I was the youngest patient there at the time.

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So, I joined a Facebook group of young stroke survivors, people that have been through what I had. I needed mental health support too and relied on my faith and a virtual therapy program provided by AbleTo.

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Your mind changes from a traumatic event like a stroke. You need that kind of support. You must be pushed, it's uncomfortable. I learned to take a step back and accept help. People need to help you. They need to understand what you're going through and have patience. During this time, I realized I must do something too, I must heal so I can be an advocate and help someone like me, so I have Co-Founded RebulildAfterStroke.com geared to providing support and resources for those like me and their families.

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Maybe I had a stroke from stress. Maybe I wasn't taking care of myself. Your family, your health, come first at the end of the day. I've taken a step back from those little things that I thought were big things, and am not taking things so seriously. I’ve learned to be patient with myself. It does get better, but it takes a lot of time, prayers, and effort.

John, 71, Plymouth, United Kingdom​

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My stroke went unnoticed at first. It wasn’t until four months later—after a dizzy spell led to unconsciousness and a hospital admission due to a vasovagal episode—that a scan revealed I had suffered a historical stroke. The news was unexpected, but it helped me make sense of the strange symptoms I had previously experienced.

Looking back, I realized the signs were there: moments when my speech didn’t quite match what I thought I was saying, occasional difficulty controlling my hands, and an odd inability to release objects I believed I had let go of. These small but unsettling episodes finally had an explanation.

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I consider myself fortunate. While my lifestyle needed some adjustments—especially my eating habits—this discovery became the turning point for a more active and health-conscious life. I committed to regular physical activity, both at home and in group settings. Yoga, water and chair aerobics, breathing exercises, balance routines, and daily walks all became essential parts of my recovery. Over time, I noticed a profound difference—not only in my energy levels but also in my outlook on life.

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One other significant experience, gained from my scan post experience was to question the medication prescribed to try to prevent a repeat in the future. My initial medication, caused me frequent dizzy spells, and nausea, (which I thought was post stroke symptoms). After talking to my pharmacy, it was suggested to change one medication, and the other to take half in the morning and half at night. The transformation in a few days was amazing, and so it sometimes may be that medication prescribed to help you, does not always achieve the desired result, so worth talking to your doctor or chemist to mention symptoms and if there are alternatives. Not just assume there is no alternative!

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