Erin Perkes

I initially met Erin last fall when my Collage Rehabilitation Partners speech therapist had shared her contact information with me. We met for lunch and from the outside she appeared to be making 100% recovery from her stroke. As I'm now receiving therapy at Texas Heath Resources to regain Cognitive Skills/Executive Function I have a deeper understanding of how stroke recovery has several "hidden" layers from what most know to look for. Meet Erin.

Tell me about your background (job, community service, kiddos, family, where you're from, etc)

I am from Fort Worth, TX and a full-time mom to three kids: 7, 5, 3. At the time of my stroke they were 4, 2 and just under 1.

When was your stroke or brain injury?

I had my stroke on April 24, 2021 - just two days after my birthday. What a way to make me feel old!

What caused your stroke or brain injury?

It has been formally diagnosed as a “Cryptogenic stroke” meaning that the cause of the stroke is unknown. My neurologist likened it to a “blip” happening in my brain and it’s about as common as getting stuck from lighting. This was ruled after numerous other tests have been performed. Honestly, it was welcomed news in that it was good to know that I am healthy, but unwelcomed news in that I wish that there was a known cause so that I could do something to prevent another one. 

Where in your brain was your stroke or brain injury?

My ischemic stroke was in my Thalamus. I read somewhere that only 3% of all strokes occur there. Before my stroke, I had never heard of the Thalamus. It is a small bean shaped part of the brain that serves as “central station” where all sensory information (except for smell) in the brain goes to be processed.

What injuries did you have as a result of the stroke/brain injury?

It took more than four months before I was able to get into a neurologist that took the after effects of my stroke seriously. Immediately after the stroke, I could know longer balance on the right side of my body, I would experience sleep paralysis, I could not walk backwards, and even if I turned over while sleeping, I would wake up. I also experienced tingling and itching all over my body, light sensitivity, and severe brain fog. Also, I soon realized that I could no longer read with ease. Every time I would try to read, I would get dizzy, lose my spot on the page, sometimes see double and could not retain the words that I was reading. Additionally, I had severe Executive Function issues. Quite often I would be driving and forget where I was driving to, go to the wrong place, no longer had time management skills, could not understand how to connect space and timing of things, no longer recognize people or faces, decision-making issues, short term memory issues, some long-term memory issues, aphasia in both turn of phrases and being able to read numbers. Also, my brain no longer filtered out background noise, so I get overwhelmed and overstimulated by too many sounds and sights. I also experienced increased anxiety, PTSD and depression. I know there are a lot more issues, but this is all that I am able to recall at this time.

How are you working to get stronger?

Once I was able to have a doctor who took my deficits seriously, I was able to get to outpatient therapy for my vision. Upon there, I was able to get even further referrals for physical therapy and speech therapy for my executive function issues. In my vision therapy, I worked with a Brock String, light board, scanning cards on walls, numbers in door jambs, and bringing pictures together with my eyes. Additionally, I was diagnosed with Fourth Nerve Palsy, meaning that a nerve in my eye was no longer communicating to my brain and my eyes were no longer working together. In addition to the therapy, I have glasses with prisms and a tint to help with forcing my eyes to work together to properly communicate to my brain and to filter out some of the stimulation that occurs with lights. Now that I have completed therapy, I still do some practice with my Brock strong, wear my glasses and I practice reading books.

In physical therapy, I practiced walking backwards, turning my body over and over again, balancing on Bosu balls, and changing directions while walking. These were all small things, but they made a world of difference in the foundation of my balance and being able to do everyday tasks like reaching up for something or just picking up my children without getting dizzy.

Finally, I spent the majority of my time working on re–developing my executive function in Speech Therapy. I had to do a lot of worksheets to help me with my reading comprehension. We also printed a daily schedule to set alarms to help “cue” me to start or to leave to do whatever task is scheduled at any given time. I still use alarms to this day. I also worked with my speech therapist on developing detailed to-do lists. I also found an AI app that will help me in generating a more detailed task list. For example, I can tell the app that I need to clean a bathroom, and then it will break that larger task down to smaller tasks for me to complete. It’s super helpful, as I sometimes still struggle with simplifying the larger tasks down to manageable tasks. We also practiced reading menus, and the best part was learning to play games. This helped a lot with my strategic and critical thinking skills. We also focused on developing tactics of how to navigate normal social situations that I found that I still struggled with - especially being able to recognize faces.

This is something I still struggle with, but now I have learned to not have shame. I simply tell people I have memory issues and struggle with placing names with faces and make a joke to break the ice. I also have learned how to pace myself and recognize situations that may be too overstimulating for my brain. I wear ear plugs and hats when necessary. I have learned how to choose where I sit in public places to help minimize the sensory input happening. Additionally, I have a great partner who helps me and supports me in those situations and also sits and plans with me at home to be prepared. I try to minimize my visits to stores, and now do all my grocery ordering online. I have a color-coded daily planner I use to help with knowing what to anticipate. Honestly, this list could go on. Speech therapy helped me recognize how my brain was not fully functioning, as a lot of these issues are not seen on the outside, so it was easy to write off as silly issues, but in therapy I learned these are valid and real issues and they can be improved if you spend the time and work on how to rewire your brain.

Another area that I am still spending time on is working through my developed anxiety, depression and PTSD as a result of my stroke. I noticed that I had been avoiding every task that I had done on the morning of my stroke, or that an anxiety attack would start to develop when just driving by different parts of the city I visited on the day of my stroke. Just the thought of running or eating soup again would leave me in tears. Through exposure therapy for my PTSD and Cognitive Based Therapy for my anxiety, I was able to get back to a lot of those menial daily tasks or drive through town without tears. I am still in therapy to work through my depression. The reality is, I still notice and mourn the change in myself and my brain after the stroke. Or that I have limited to no memories of my children for the 6 months leading up to my stroke and for at least the entire year after my stroke.

What are your current interests? (are you still working?, what are current interests, etc)

I am so happy to say that I love reading. After losing my ability to read, I am reading large books again and getting to enjoy them. I also love playing board games and word games, and it’s a bonus that it’s super helpful to my cognitive development. I also love doing jigsaw puzzles, gardening, playing with my children and cooking. Things that I am waiting to come back to are my creativity. I used to love to craft and create things, but it comes in small spurts.

What about your stroke or brain injury has inspired you or others?

For me, it has been remarkable to see and experience and grow the neuroplasticity of my brain. I am constantly trying to figure out how to push my brain even further. It has also taught me through experience that not all disabilities are seen.

I also always share with everyone the importance of knowing and understanding the signs of a stroke, and why it is so important to get help as soon as possible. My life was saved by the tPA shot and that is because of my people who were able to quickly identify my symptoms and get me the medical attention needed. Another thing is that strokes in young people are not talked about nearly enough (nor is research being done for this age group, but that is for another day). It is very possible for a young person to have a stroke, and so to be aware of what the signs are no matter the age is important.

Finally, I try to be open and honest about my mental health issues I have been dealing with after my stroke. I want to destigmatize these things, as we shouldn't feel shame - whether a person has had a stroke or not.

I hope as I continue my recovery, that I find the capacity to eventually do more

Thank you, Erin, for sharing your story! I'm grateful for your willingness to tell your continued journey through stroke recovery!