Overcoming Post-Stroke Myths

Overcoming Post-Stroke Myths

Introduction

This week, the goal is to share and dispel some of the most common myths about stroke recovery, drawing from my own experiences. After suffering a stroke at 37 and being diagnosed with MS, my journey has been both challenging and enlightening, revealing the truth behind these widespread misconceptions. In fact, below is a picture of me running from last year on my way to over 5000 miles of running last year, and that's after my stroke and subsequent Multiple Sclerosis diagnosis! (MS 🧡)

Myth 1: Recovery Only Happens in the First Few Months

Significant progress can occur well beyond the early months. My experience of starting to run in the third and fourth years post-stroke, covering thousands of miles, highlights the potential for continued improvement. There is no doubt it is difficult and challenging each and every day, but believe me, if you put your mind to it, there are lots of ways to continue to get better long-term if that's a goal of yours. Stroke and other neurological events aren't really that different from everyday life; it just presents us as survivors with different hurdles to go around.

Myth 2: Complete Recovery is Always Possible

"Complete recovery" varies significantly among individuals. Accepting a new normal and celebrating incremental progress has been crucial in my journey towards an 80-85% recovery level. To be honest, I have been saying that since the end of my first year and will continue to say it each and every year going into year five this year. I don't know if it's helpful or if I continuously move the goal post on myself, but it does keep me motivated to keep going and working on all the things! I don't know if I'll ever feel 100% like before, and that's ok with me as long as I keep growing and going in the right direction. It's taken a little over four years to come to terms with that mindset, but again, I've proven to myself that over time I've been able to get back to or better in certain areas, but most importantly, I've gotten a better handle on what's most important to me going forward.

Myth 3: Physical Therapy is the Only Key to Recovery

My recovery has been multifaceted, incorporating not just physical but also speech and occupational therapy, along with non-physical practices like meditation, underscoring the importance of a holistic approach. The reality is that there are a number of things you may benefit from, depending on your situation. One of the most surprising things I've found to be a recurring theme in my recovery? The things I brushed off, ignored, or otherwise thought were BS for the majority of my life are now often things that are most prevalent in my life and, if not a daily practice, certainly a somewhat regular part of my ongoing days. Two of the biggest things for me have been breathwork and meditation. Both were things that I mostly misunderstood and thought were just not for someone like me. It turns out I was way wrong about the what and how of both until I changed my mindset and dug in to try and understand each better.

Myth 4: Younger Patients Always Recover Faster

Recovery depends on various factors beyond age, including overall health and the presence of a robust support system. Setting small, achievable goals has been fundamental to my steady progress.

This is such a myth that I can tell you I was so frustrated in the beginning hearing this one over and over. I used to bitch and complain as if it were doing me or anyone else any good because I would see people much older than me up and walking and talking with ease. It made me mad and frustrated, and looking back wasn't helpful, but I did use it to motivate me.

I think age can play a part to varying degrees, especially in the long run of recovery, but it certainly doesn’t guarantee you anything and definitely doesn’t guarantee we can recover faster. The one true thing about age is that it may give you more time to figure it out and relearn to live life, but as we know, the only true guarantee in life is that there is no guarantee.

Myth 5: Strokes Only Affect Physical Abilities

The impact of a stroke extends beyond physical abilities, affecting cognitive, emotional, and social aspects. Acknowledging and managing these changes has been a pivotal part of my journey.

The impact of a stroke extends beyond physical abilities, affecting cognitive, emotional, and social aspects. Acknowledging and managing these changes has been a pivotal part of my journey. It continues to be and likely will always be a daily part of my journey in some way, shape, or form. For me, I started to love the work in that regard. It’s not always easy and definitely something that requires work, discipline, and focus. For me, this isn’t easy to grasp or something I understood until later on. In the beginning, I was pretty solidly focused on only the physical, and I don’t think I am or was alone with it. Why? Because it’s obvious and important in terms of all-around health and safety. It’s hard to work on all the other parts of recovery if you can't walk, talk, and do the things you need and want to be able to do day in and day out and to be able to do safely before you can get to the next level.

That being said, it's something to be aware of if you are going through this personally or with a loved one, because although it isn’t obvious or perhaps your main focus is the early days, it can sneak up on you if you aren’t at least aware of it and catch you off guard as you continue your recovery journey. It's something to be aware of and understand where you might be with your emotions and feelings, so take the time to take stock and begin to figure out some of your needs and wants so that when you need to start digging into that work, you’ll be ready and not caught off guard. It’s likely going to be harder work than even physical work. Do yourself and be prepared for the mental and emotional work to come along because it’s just as critical as the rest to your overall health and success.

Myth 6: Once Discharged, Intensive Recovery is Over

Recovery continues well beyond hospital discharge. The ongoing nature of rehabilitation, especially in the conducive environment of home during lockdowns, highlights the persistence required in the recovery journey.

I think it's obvious if you’ve read anything else at Survivor Science. The work never stops going forward, especially after intensive recovery. The path isn’t easy, and the pace may slow, but the work won’t ever stop, because once you are a survivor, you are a survivor for life. There is no magic pill that will likely ever change that, and even if they ever develop such a thing, I assure you, work discipline and grit will always benefit you in your journey, just as this hard road and path will help you.

Continuing with Myth 7: Isolation is Inevitable Post-Stroke

Isolation can be a significant challenge, yet it's not inevitable. The support from family and developing new friendships with other survivors and healthcare professionals underscore the importance of community.

Isolation is inevitable. This is probably the best way to not be a myth without significant work. Stroke recovery can be very isolating for a number of reasons, so there are some things to pay attention to and be mindful of because the truth is, if you don’t check in with yourself or others regularly, you can find yourself isolated at times. In my particular case, it had quite a bit to do with the timing of my stroke and coming out of inpatient treatment right as the world was dealing with COVID and going into lockdown for COVID. What helped me in particular was that I was very accustomed to working from home for over a decade to that point. Getting back to work, albeit way before I was ready, was helpful in limiting my isolation. Having my family at home as well was actually very helpful.

So I did have some things in place; however, due to COVID, it was hard to find others to connect with, at least in the traditional sense. Having some connections in place was great, but no one I knew really understood what I was going through, and sadly, that remains the same today, outside of my local stroke group and the survivors I know personally. Making a few good connections locally and online has been a tremendous help. For me, it helps me understand my thoughts, feelings, and emotions because those that I speak with regularly have a similar experience or at least an understanding that truly only other survivors can understand.

It’s not that others aren’t empathetic or understand, but to experience and truly understand, I think one has truly had to go through it to understand, which is not something I recommend or suggest for those that haven’t. Most of life’s lessons we have to go through and experience on our own. This is one I have gone through, and it will always be part of my life going forward. I wouldn’t want anyone to experience it. It is so hard to do. Put into words that really explain reality. I’m definitely speaking from experience.

Myth 8: Life Will Never Be Fulfilling Again

Rediscovering old hobbies and finding new interests have brought unexpected joy and fulfillment to my post-stroke life, proving that happiness and engagement can flourish anew.

Although I realize that life is likely to always be different for the majority of people, I am increasingly coming to the realization that my experience is no exception. In many ways, be more satisfying and fruitful. Nowadays, I'm better at saying "yes" to the things that make me happy and "no" to the ones that make me sad. Even though I'm better at keeping track of my decisions and am more equipped to make quick modifications when necessary, I still make mistakes and answer yes or no too hastily from time to time. Things that. They were previously not something I was to do or like; they were more time-consuming, but I came to value and delight in them in new ways that broadened my perspective. Again, when I feel upset or frustrated, it makes me stop, think, and figure out what works for me right now. Discovering a fresh approach to old challenges or enjoying one's favorite pastimes—be it woodworking, sports, or anything else—can also bring immense satisfaction. It can be a great way to relax and unwind, helping to release stress and tension in a healthy way.

Myth 9: All Strokes Are the Same

Each survivor's journey is distinct, with personal challenges and milestones. Embracing this diversity enriches our collective understanding and support for one another.

As a stroke survivor or caregiver, you have likely heard the phrase that not all strokes are the same, and that is certainly true. Each survivor's journey is distinct, with personal challenges and milestones. Embracing this diversity enriches our collective understanding and support for one another.

Although not all strokes are the same, there are certainly a number of similar experiences we likely all go through, and that's why creating connections with others in the stroke community and other areas outside is important. Like most things in life, a healthy balance is the best approach. It's good to experience both so that we don’t get one-sided and are able to reconnect with others, as well as having a group to lean on when we need understanding but also a group to lean on to help push us further outside of our comfort zones, which is important to long-term recovery and making sure we don’t withdraw completely from the real world, as can happen after a major life event like a stroke. Isolation can be a real trap if we’re not careful, and it can be hard to get ourselves out of, speaking from personal experience.

For me, debunking these myths has been a great motivator to keep working and growing to get stronger each and every day. It is hard and takes effort, but each day I’m thankful to get a chance again to do the work. Most importantly, it allows me to continue to grow, learn, and be a better husband and father to my wife, but I also want to show the ones I love that all their love and support have been important, and I want to always show that and pay it forward. that I am supporting their time and effort, and that nothing lacks at all.

Conclusion

Debunking these myths has been an integral part of my recovery, helping me to embrace my journey and inspire others. This process has taught me the value of determination, support, and the willingness to adapt. My story is a testament to the fact that, despite the challenges, a fulfilling and enriched life post-stroke is possible.

That was a terrible way to articulate what I meant, but thankfully, I can work on editing once I have everything in place. The truth is, these are just myths; however, they require doing the work, sticking with it, and showing each and every day to keep them from possibly becoming a reality in some cases. If you’re struggling to reach your goals and need help, you can always reach out to me directly, schedule time to chat, email, or even join our community. Whichever way will best work for you? Just know that if you need help, that's the ultimate goal because it's hard, sometimes isolating, and lonely. You don’t have to go it alone!