Introduction to my Encephalopathy and Finding Hope in Recovery

I had never heard of encephalopathy until after my diagnosis and the start of my recovery. Once I saw a definition of encephalopathy, it became a frightening word, signifying a range of brain disorders and diseases that can dramatically affect a person's life. It may lead to mild changes in cognition and memory or, in some cases, devastating consequences. Along with the cognitive challenges comes a range of physical challenges. At its worst, encephalopathy can contribute to death.

This post is not just an introduction to encephalopathy; it's a testament to resilience, recovery, and the enduring hope that drives us forward. It's a story that will resonate with anyone facing similar struggles, offering a beacon of encouragement as they navigate their challenges. It's a reminder that even in the face of such a daunting condition, the human spirit can prevail.

Understanding Encephalopathy

Encephalopathy can result from various causes, including malnutrition, infections, hypoxia, metabolic imbalances, and severe traumas. For example, the root cause of Wernicke encephalopathy, my diagnosis, is a lack of vitamin B. I discuss different types of encephalopathy in my upcoming book, Leaving La-La Land: Escape to Reality, and will have a blog sharing some of the types of encephalopathy.

Recognizing the underlying causes early is not only vital but also empowering. It can lead to quicker intervention and potentially better recovery outcomes. This knowledge empowers us to be proactive in our health, to seek help at the first sign of trouble, and not to give up until we have answers. Unfortunately, the complexity of encephalopathy results in diagnosis being a process of elimination. In my experience, Parkinson's, dementia, Huntington's, chronic infection, traumatic brain injury, epilepsy, multiple sclerosis, chronic microvascular ischemic disease, liver and kidney dysfunction and Alzheimer's were all considered at one time before the Wernicke encephalopathy diagnosis.

The First Signs

The first signs of my encephalopathy journey started with subtle challenges. Mental confusion, such as forgetting where I put my keys, missing meetings, or struggling to recall common words, suddenly became apparent. It felt like stumbling through a fog that clouded my thoughts. However, it is interesting that I only notice these signs in hindsight. The changes are subtle, often hidden, and attributed to just having a bad day or simple forgetfulness. Mental challenges are at the forefront. While I was renovating my condominium, I found that I was easily confused trying to keep the project on time and on budget.

Clumsiness is also an initial sign. A year before my diagnosis, I broke a leg by tripping down the stairs. Then months after that, I tripped walking between the living room and kitchen and broke the other leg. Before all this, I fell getting out of the shower and broke a few ribs.

Then there was the weakness; changing a light fixture became a monumental physical task; working with my hands above my head was extremely challenging. Walking to the mailbox became challenging. What was simple became complex.

Then there were the seizures, the sudden mental and physical decline. As the days passed, these issues grew deeper. I faced episodes of hallucinations, disorientation, and situations that were once normal felt alien. By this time, I had already surpassed the initial signs.

The Medical Maze

The path to diagnosis is uncertain. I found myself undergoing a series of medical tests—blood work, CTs, MRIs, and a multitude of consultations with different specialists (As recorded in my medical records, I have no memory of these events). As a patient suffering from encephalopathy, I was also part of the diagnostic issue. Firstly, I could not communicate with doctors regarding what I was thinking, feeling or experiencing, and secondly, I was unable to stay still for X-rays, CT and MRI imaging.

Eventually, when the diagnosis of Wernicke encephalopathy came, I was deep into the mess of encephalopathy, and I have no memory or feelings regarding the diagnosis. While it eventually became a relief to have clarity, it could only happen once I was aware of it. Immediately, I became concerned about what this meant for my future.

I have experienced that the diagnosis of encephalopathy is a process of elimination, ruling out many diseases first, then creating an accurate diagnosis. This process takes time; I was lucky it took just over two months, but some may go through many months of doctor or hospital visits before a diagnosis.

The Emotional Toll

Encephalopathy didn't just impact my mental clarity and physical ability; it also took a severe toll on my emotional health. In the process of writing my book, Leaving La-La Land, I have had my most significant disappointment on this journey thus far. I hoped that I could somehow put together the memories of my three months in the hospital, but I have concluded that I will never retrieve these memories. This means I have lost and will never get back over three months of my life.

The fear of losing my cognitive skills is a constant companion. I fear the loss of my mental ability more than the loss of physical skills. With that fear, I found myself grieving for the person I used to be and grappling with the painful realization that aspects of my former life would never return. The emotional toll is immense, leading to feelings of depression, frustration, anger, and a profound sense of loss.

During my journey, I was often identified as 'flat affect', with a lack of emotion. I am still experiencing these moments, although they are less frequent. However, even having irregular "flat affect' impacts my ability to relate to others. My empathy is significantly reduced.

Sharing these emotional struggles is not easy, but others need to understand the full impact of encephalopathy; therefore, I must share.

Small Steps Forward

The road to recovery from encephalopathy is rarely straightforward. Mine became a journey full of experimentation, seeking anything that would support my cognitive recovery. The road is full of twists and turns. For me, it was a lonely journey as I did not initially have a close or knowledgeable support network, nor did I grasp the new reality and my limitations. But with each small victory, like recalling a word or completing a puzzle without frustration, I felt a sense of accomplishment.

I began with simple memory exercises designed to enhance cognitive function, such as recalling a name, number, or license plate number, which required time and patience but ultimately proved effective. Over the course of a few months, I noticed steady improvements—my ability to remember small details began to return, highlighting the significance of persistence and perseverance in the recovery process. This brings me to share my most successful skill in recovery: stubbornness. Never give up; take it one step at a time.

A topic that I find particularly interesting is neuroplasticity, the brain's ability to repair and reorganize itself. Without this biological process, I would still be lost in the depths of La-la land. I look forward to discussing neuroplasticity in a future blog.

A serene park offering solace during the recovery journey.

The Journey Continues

As the cognitive fog began to clear, I developed a new appreciation for everyday moments: the warmth of sunlight after three months spent indoors, the simple act of swallowing, and the enjoyment of a good meal. There is so much to appreciate, and small things mean more to me now, whereas previous big worries have become less critical. I have a new perspective on life.

Though obstacles persisted, I learned to find joy through engagement in activities that sparked creativity, such as writing these blogs. This new chapter helps me accept my reality, acknowledging both its imperfections and its beauty.

I have come to accept that I will forever live with dizziness, seizures, confabulation, forgetfulness, inability to multitask, confusion, midline confusion, weakness, lack of emotion, and questionable gait. Accepting this new reality has been crucial for me, allowing me to move forward with my modified life.

My journey took a twist. Within weeks of the doctors confirming a Wernicke Encephalopathy, possibly Wernicke-Korsakoff syndrome, I received a second diagnosis. I have Multiple Myeloma, a rare blood cancer. I was lucky in a way, because I was in La-la land when I received this information. I have little control over the cancer; this is why I am focusing on sharing my journey as it relates to encephalopathy.

The Power of Sharing

While writing my book, "Leaving La-La Land, Escape to Reality," I searched for resources but had little success. It was only after I completed the book that I found some online resources that helped me connect with others who have encephalopathy. I often wonder why I didn't discover these resources earlier, and have concluded that I may have found them but simply forgot. Adapting to this new reality can be frustrating, but I try to find humour in my situation.

My journey has highlighted the importance of raising awareness about encephalopathy. While numerous medical publications exist, there are few resources specifically designed for patients and caregivers. Many people remain unaware of the complexities and implications of encephalopathy, and as a result, they often suffer in silence. By sharing my experiences, I aim to advocate not only for myself but also for many others who face similar challenges.

In today's digital world, using social media platforms can significantly raise awareness. Conversations about encephalopathy can foster the understanding and empathy necessary for better treatment and support, ultimately making a tangible difference in how this condition is perceived and addressed.

Please leave a comment or share this with a friend. Please help us spread the word!

A Beacon for Others

Hope emerges as a powerful ally in my recovery process. It drives me to strive for better days and inspires me to embrace healing. Through these blogs, I hope to instill the same in others. My experience is a testament to the fact that one can reclaim parts of oneself despite adversity.

While my story is personal, it resonates with a broader truth: even amidst the shadows of illness, a light can emerge. Through my challenge, I have learned the importance of stubbornness, resilience, patience, humour and the deep connections humans share when faced with life's trials.

A New Perspective

My journey through encephalopathy has taught me that while shadows may linger, they do not need to control my life. Even the hallucinations are seen through a new perspective, humour. With every small step in recovery, I have come to appreciate both the challenges and the victories.

Anyone or loved ones of individuals facing a similar journey, remember that hope is within reach. By sharing our stories, we create a network of support that fosters resilience against encephalopathy, affirming that recovery is a significant part of this journey.

A vibrant flower blooming with hope symbolizes the recovery process.