Building a Support Network: Navigating the Journey as a Young Stroke Survivor

Building a Support Network: Navigating the Journey as a Young Stroke Survivor
Photo by NEOM / Unsplash


Life can take unexpected turns, and mine did just that at 37 when a stroke radically altered my world. As a young father and husband, I faced the daunting task of reimagining my identity and roles. This journey, rife with challenges, also led me to discover the immense value of a supportive community.

hands formed together with red heart paint
Photo by Tim Marshall / Unsplash

Prior to my stroke at the end of 2019 I was nearing the peak of the proverbial mountaintop. A year prior I tragically lost my parents to a very weird and tragic, hiking accident, but was coming through that difficult time with my wife and family transitioning from a life. We had built in Virginia to a new life back in Florida where we had originally started.

Professionally I was taking on more work as a seasoned veteran of the team, and really working with and leading teams beyond just writing code each and every day, and I was really excited to get a fresh start in Jacksonville Florida prior to the stroke. Things were in a good place for me at that point personally and professionally I was proud of where I had come from and what I had overcome however that all changed when I had the unexpected stroke in December 2019!

The Shock and Reality of a Young Stroke

The realization that I had suffered a stroke at a relatively young age was a jarring shock. It brought forth a myriad of questions and fears. How would this affect my physical abilities? Could I still be the father and husband I wanted to be? This section of the journey was filled with uncertainty and a deep need for understanding and support.

If you've listened to an episode of the podcast, you probably heard me mention the story of how once I realized what had happened and that I actually had a stroke. It's such a young age you've heard me say I told the doctors I'd be better and two or three days and that couldn't be further from the truth. Looking back now!

However, I think it is important to point out that, although not realistic at all, the mindset and determination and tenacity is something that is super important because it kept me focused and disciplined once I got into the facilities and care of other people and working with physical therapist, occupational therapist speech therapist I knew I wasn't going to give up but I definitely didn't know how long it would take nor did I realize how much work and effort over sustained period of time it would continue to be and continues to be to this day.

Understanding the Need for Support

In the weeks and months following my stroke, my life became a blur of medical appointments, rehabilitation sessions, and a constant struggle with my own body and mind. The impact was not just physical; it was emotional and social. Adapting to this new life was a unique challenge, one that many people my age couldn't relate to.

a couple holding hands while standing next to each other
Photo by Priscilla Du Preez 🇨🇦 / Unsplash

To help put it in perspective for those not going through it I've often said at least in my case because I was diagnosed two months after my stroke with multiple sclerosis or MS, which also took another toll on my body is that it's like being hit with a baseball bat getting up and then being hit again and knocked down again.

The physical mental and emotional deficits that I found myself with, was both shocking and humbling. Because I am right handed, and my right side is my dominant side it took a significant amount of time due to paralysis from the stroke and the MS to really regain relatively normal function, and even at that four years out it's still a bit of a grind.

Sometimes it feels like a bad movie or perhaps a horror movie but it's like playing a board game and going back to the beginning, except for it's real life. The first year I was in a wheelchair for the majority of the year, so I had to regain and rebuild my body physically, in terms of strength, in terms of walking in terms of talking, and everything was back at square one typing handwriting I mean literally everything.

At the time my daughter was in high school, but my two younger boys were just starting preschool in kindergarten and honestly, so was I in terms of at least typing and handwriting, both of which I like the fake. We're pretty good being that I was a developer who could type to 100 words a minute, and as a former architecture, student and arch student handwriting and drawing were something I excelled at prior to my stroke, so to say that was humbling would be an understatement!

Finding the Right Support Groups

It quickly became apparent that finding the right support group was crucial. Many groups catered to older stroke survivors, but I needed a community that understood the challenges of being a young parent and professional. These groups offered not just emotional support, but practical advice and understanding relevant to my life stage.

For me, finding support groups that resonate with me has been rather difficult. My stroke and subsequent MS diagnosis 2 month after were right before the world was shut down due to Covid. I came out of inpatient rehab March 17,2020. I had just done two separate 30 day inpatient physical therapy intensive rehab months with a 2 1/2 week hospital stay in between right as Covid took over the world.

In some ways for me, it was a blessing because I was still fully paralyzed on the right side of my body at that time, partially paralyzed on the left side from VMS exacerbation, which brought me back to inpatient rehab February & March. I know it was a difficult time for many people around the world and believe me it was for me too, so I was somewhat grateful that the whole world kind of shut down for a little bit so I could get my bearings on the reality of what I was facing, going forward, being at home, getting back into the routine of daily life, while basically almost fully paralyzed, legs arms, both sides to say it was a lot would be an understatement.

All that to say, it certainly had pluses and minuses. I think the biggest minus for me was that a lot of rehab and support groups were immediately shut down, and I really had nowhere to turn initially at all, besides family, and figuring it out on my own. Luckily, I did do outpatient rehab minimally, but because of Covid in the beginning, it was really bare bones minimum, but it was better than nothing.

I should mention Brooks rehab here in North Florida is an amazing facility one of the best in the country and I've been really lucky to be a part of their system and they do have some groups but it's kind of limited and there are not a lot of people like me in the groups which isn't necessarily good or bad, but it certainly is. An interesting twist for me at age 41 now. Thankfully, I had my family I'm an introvert and I like to do things a lot of the times on my own by trial and error, so not the worst case for somebody like me but also why I am so adamant about building the survivor science community online because I think I'm not alone in this case, and there are people around the world that could benefit from another outlet to share and learn, especially people like myself that are typically considered younger strokes or is it no less difficult but it is certainly different being under 50 versus perhaps older and retired because the typical age of a stroke survivor is 65.

The Emotional Rollercoaster

Post-stroke, I experienced a gamut of emotions. There were days filled with frustration and anger, and others with immense gratitude for the progress I made. Learning to navigate these emotions was a critical part of my journey, teaching me resilience and patience.

black and yellow bicycle on gray metal bar during daytime
Photo by Itai Aarons / Unsplash

It's hard to explain they're really for me isn't a day or moment that I specifically remember as tough. It's just been a series of adjustments and hurdles that I can either choose to overcome or keep moving forward in a different direction if the time isn't right for me.

That being said, there is a fine line and dealing with all of the emotions and changes isn't easy. Just be aware that it does take time to get through, and your experience will probably different greatly from other strokes survivors. We always hear the phrase it takes time and the reality is that is true if it takes less time great if it takes more time just know if you keep working it'll get there my favorite in time.

There will be good days and bad days and days in between try to stay positive. That doesn't mean there won't be difficult days or bad moments but holistically staying positive overall is a mindset and a lot of hard work. For some that might sound easy for others it may be a time and period of adjustments. Just remember rarely do good things come from a bad attitude and a negative mindset!

Physical Rehabilitation and Parenting Challenges

Rehabilitation was a slow and arduous process. Simple tasks that I took for granted became monumental challenges. I discovered innovative rehabilitation techniques and learned the importance of celebrating small victories. Balancing recovery with parenting brought additional challenges. My children had to adapt to a father who couldn't always play or engage with them as before. It was a learning curve for all of us.

children playing near fountain
Photo by Robert Tudor / Unsplash

Fast forward a few years and with hard work I've been able to rewire mentality and work hard to get my physical abilities to a place where those moments with my kids are easier and more enjoyable than they were in the beginning fo sure. It isn't always easy, but it helps me stay on my toes and motivates me each day today to continue to get better each and every day!

Mental Health and Coping

The stroke significantly impacted my mental health. Anxiety and frustration were frequent visitors. I explored various coping mechanisms, such as mindfulness, meditation, and physical activity. These practices didn't just aid in my physical recovery; they were pivotal in maintaining my mental well-being.

don't give up. You are not alone, you matter signage on metal fence
Photo by Dan Meyers / Unsplash

For me getting to a safe stable place with my physical abilities was really important to me so that I could get back into working out and into the gym. After my stroke healthy eating and exercise have been top priorities. The gym for me is the best way to feel great both mentally and physically.

The Power of a Supportive Community

Finding a community of young stroke survivors was a game-changer. The shared experiences, the understanding, and the empathy within these groups provided a sense of belonging and reassurance. It was comforting to know I wasn't alone in this journey.

wake up kick ass. be kind. repeat printed glass wall
Photo by Chris Curry / Unsplash

I have met a number of survivors over the years, and the couple things that always stand out to me are the attitudes, mindsets, determination and drive of the majority of survivors. The graciousness to accept what has happened and often new outlook on life is amazing to see and experience. The majority are very appreciative off their second chance because they realize just how lucky they are and that some don't get another chance or they unfortunately give up because they don't realize the opportunity they've been given sadly.

It's unfortunate but it's a fact of life and we've all encountered people with different experiences and different circumstances. However, the majority are grateful and appreciative and super supportive! It's really amazing to see whether you're a stroke survivor or a family or loved one powerful transformation of many survivors!

Adjustments in Professional Life

Returning to professional life post-stroke presented its own set of challenges. I had to learn to communicate my limitations and needs more effectively. Adapting to a new pace and accepting that some tasks were no longer feasible was a tough but necessary part of my journey.

gray concrete road between green trees during sunset
Photo by Gary Meulemans / Unsplash

I definitely tried to go back to work to quickly, but there was a lot going on in the world at the time is right when the pandemic started in spring of 2020. From people I've talked to they've also tried to go back to work probably too quickly which is something I realize now however, I really wanted to try to get back to it. I did take it slow at first and things changed for me in my situation so eventually up going out on my own, and leaving the career and company I had worked for for the previous decade. I values changed. My priorities, changed, a lot changed and it was just no longer the right fit for me personally or professionally. In fact, the career itself is no longer an industry. I really wanted to be in so that might be similar to other experiences, but mine was somewhat unique given my age in general situation at that time.

It was also the beginning of the great resignation, so I don't know if that really played part or if it was just really coincidental but I did try to go back for another year and a half before I realized I personally just needed a break, and a career shift to focus on the matter, the most in the world to me, which was unfortunately at that time, no longer pixels on a screen or writing code any longer. I knew for me I had different interests and really just wanted something bigger and different for me so you might have a similar experience it's not uncommon to change careers or shift or take a break after a stroke but again, that was my experience might be different for any number of reasons. I will say, though, as a Survivor is good to take the time to really reflect on your purpose and your passion. What you want to do achieve going forward is important if you make the most of your second chance in life!

Building Survivor Science and Community

Creating a community through Survivor Science became a passion. It's about providing a space for young survivors to share, learn, and grow together. It’s a testament to the fact that while our strokes may have changed us, they haven’t defined us.

Personal Touch Prompt: Elaborate on what inspired you to start Survivor Science and a memorable milestone or achievement for the community.

Advocacy and Raising Awareness

Advocacy for stroke awareness, especially for young survivors, is more important than ever. It’s about educating people that strokes can happen at any age and highlighting the unique challenges young survivors face.

man climbing on tower near buildings at daytime
Photo by Jack Sloop / Unsplash

Personal Touch Prompt: Share a moment when you felt your advocacy efforts truly made an impact, whether it was changing someone's perception or influencing policy.

The Role of Family and Friends

My family's role in my recovery cannot be overstated. Their support, patience, and love were my anchors. Friends, too, played a significant part. Some friendships grew stronger, while others faded, underscoring the true value of supportive relationships.

four person looking at the city
Photo by Devin Avery / Unsplash

While some relationships changed I think I owe everything to my immediate family especially my wife who without their love and support, I would not have been able to make the progress I have made the last couple years. I should also mention my sisters played an absolutely critical role in the early days as well, and without them, everything certainly would've been more difficult from the jump! Really and truly, everyone in my life has helped me continue to grow reflect and rebuild stronger than I was before and without that I don't think it would've been possible to make the progress I have made the last couple of years for sure!

Post-stroke, my lifestyle underwent significant changes. Adjusting to a healthier diet, incorporating regular exercise, and managing stress became priorities. These changes were not just about recovery but about embracing a healthier way of living.

Photo by Andrew Moca / Unsplash

It's hard to describe, and put the words to the transformation that really do it justice, but I will say now looking back the stroke actually saved my life and has given me a second chance that perhaps I might not otherwise have had. Although it has been quite a journey to say the least, every day, I am grateful for the opportunity to have that second chance make improvements and get a little bit better each every day in all with my mind, body, life, and family!

I certainly wouldn't necessarily choose this path, but because it is now the path that's why I share the things I do, and I am truly eternally grateful for the second chance and the opportunity to make the most of it!

Reflections and Looking Forward

Reflecting on this journey, I realize how much I've grown and learned. It's been a path of discovery, resilience, and adaptation. As I continue to navigate this new life, my focus is on being the best version of myself, for my family and for the community I've come to cherish. Remember to push yourself to take that first step because thats how you regain control of the life you want going forward!


This journey has taught me about the strength of the human spirit and the power of community. While the stroke changed the course of my life, it also opened new doors to growth, understanding, and advocacy. It's a path I never expected, but one I now embrace with determination and hope! I never realized in 1993 watching the ESPN'S ESPY's just how important Jimmy V's speech would be and play a part in my life, and in particular my stroke, recovery journey!

Don't Give Up, Don't Ever Give Up!-Jimmy Vilvano

About the author
Will Schmierer

Will Schmierer

👋 Hey I'm Will, Stroke Survivor since December 2019 at the age of 37! February 2020 I was diagnosed with MS🧡 If you have questions or need support, feel free to reach out

Survivor Science

Leading the Way to Recovery and Embracing Your Second Chance!

Survivor Science

Great! You’ve successfully signed up.

Welcome back! You've successfully signed in.

You've successfully subscribed to Survivor Science.

Success! Check your email for magic link to sign-in.

Success! Your billing info has been updated.

Your billing was not updated.