When this blog started in June 2025, we had already been living with Uncle Lewy for several years. Each month has had its unique set of challenges, successes, heartbreak, you name the emotion……this summarization by month reflects where we have been, where we are in this marathon of a thing. I hope it helps you our family, our friend, navigate our story.
June 2026 – Hydration and Travel Challenges
One of the biggest lessons of June has been a renewed appreciation for something deceptively simple: staying hydrated. We’ve been reminded that adequate fluid intake can have a significant impact on daily functioning. What seems like a small issue can quickly become a large one when hydration slips, especially for someone with Lewy Body.
In June, we traveled with Uncle Lewy. Leaving familiar surroundings can introduce new challenges. Changes in routine, unfamiliar environments and the logistics of getting from place to place often require extra planning and flexibility. Some things went smoothly, while other times we had to remain flexible, adjust to the circumstances.
Despite the challenges, the month included meaningful experiences, time together, and a few reminders that some adventures are still worth taking.
As we settled back home after our trip east, we were reminded how blessed we are as we reflected on memories of the past, of being close to family at this time of life. While today may present hardships, our memories provide respite.
May 2026 – Adjusting, Adapting and Moving Forward
May was a month of experimentation, adjustment, and learning. Much of our attention was focused on the transition from a pill version of one of Matt’s medications to a patch. The process was not as simple as we hoped. There were setbacks, concerns, and more than a few anxious moments as we tried to determine whether the change would ultimately help improve consistency through out the day. As with so many aspects of LBD, there are no easy answers, only observations, patience, and a willingness to keep trying.
For me, May included a few opportunities to reconnect with activities that have long brought joy and a sense of freedom. Those breaks were not just enjoyable; they were necessary. Caregiving requires endurance, and maintaining some connection to the things that recharge us is part of sustaining in the journey.
As this month came to a close, or attention shifted towards preparing for a cross-country trip to Virginia. There was excitement, planning, uncertainty, and more than a little apprehension about how Matt would handle the travel. By month’s end, we had safely arrived, grateful for a smooth start to an adventure that only weeks earlier felt daunting.
May reminded us that living with LBD is often about adapting rather than controlling, adjusting expectations rather than forcing outcomes, and celebrating progress wherever it appears.
April 2026 – Lessons in the Basics
April reminded us that some of the most important things are also the simplest. Hydration became a major focus after a frightening medical episode that led to a trip to the hospital. We learned firsthand how quickly dehydration can affect someone living with LBD and how much difference proper hydration can make. It felt like a lesson we would never forget. As it turns out, some of the most important lessons are also the easiest to overlook, and hydration would return as a challenge in the months ahead.
The month also included our first attempt to transition from a pill version of a medication to a patch. While the change seemed straightforward on paper, the reality was more complicated. The experience reminded us that even small adjustments can have unexpected effects and that patience is often required when navigating treatment decisions.
As the month progressed, we spent time observing new patterns. Matt seemed to be sleeping more, requiring more rest and recovery time after activity, and continuing to interact with the world in ways that reflected his changing relationship with his environment. Some days were challenging, while others felt surprisingly normal.
Amid the uncertainty, there were still victories worth celebrating. Matt continued to help around the house in his own way, family and friends remained an important source of support, and we found moments of laughter in situations that might otherwise have felt overwhelming. April was a reminder that progress is not always measured by improvement. Sometimes it is measured by understanding, adapting and learning how to meet each day as it comes.
March 2026 – Abalone, Sheba and Unexpected Joy
March was a month filled with surprises, some amusing and some more serious.
One of the month’s most memorable storylines involved an abalone shell that mysteriously disappeared. What began as a simple search turned into a 23-day mystery before the missing shell finally resurfaced. Like so many things in life with LBD, the experience required patience, flexibility, and definitely a sense of humor. Sometimes the best response is simply to enjoy the story when it finally reaches its conclusion.
March also brough concerns about Sheba’s health. Fortunately, with veterinary support, the situation is something that can be managed. The experience reminded us how much our pets are a part of the family and how deeply we care about their well being.
Despite the challenges, this month also included moments of genuine joy. One highlight was when Matt was dancing with family as other family members played and sang with a band. It was a reminder that connection, music, and shared experiences still have the power to bring smiles and create lasting memories. Moments like this help us focus not only on what has changed, but also what remains.
March was a month I got to get away, hand out with life long girlfriends who were going through their own challenges. Being with them, being there for them in their moments is a salve, a distraction, a way of giving which feels good to my soul.
Looking back, March was not defined by a single medical milestone or dramatic event. Instead it was a month of everyday life–solving mysteries, caring for loved ones, sharing laughter, dancing with family and finding reasons to smile along the way.
February 2026–Trying New Things
February was a month of trying new things and learning, once again, that plans do not always work out as expected.
One of the month’s adventures involved exploring a day club program for Matt. On paper, it seemed like a promising opportunity for social interaction and engagement. In reality, it quickly became apparent that the fit was not quite right. While disappointing at first, the experience reinforced an important lesson: what works for one person with LBD doesn’t work necessarily the same way for another person with LBD. Sometimes the only way to find out is to give it a try.
The arrival of Daylight Savings Time also provided a reminder of how even small changes can have an outsized impact. An hour on the clock may not seem significant, but changes in routine and schedule can affect everyone differently.
The highlight of the month was undoubtedly a family birthday celebration. Surrounded by family, laughter, and crabs, the focus shifted away from LBD and back to what matters most–being together.
January 2026–A Change in Perspective
January was a month of change, not so much in Matt’s condition, but in my own mindset.
For a long time, I found my self focusing on what LBD was taking away. While those losses are real, January brought a big shift in my perspective, a very hard shift, a very sad shift, but a very important one I needed to make.
The month also included a frightening reminder that LBD brings real safety concerns. Matt fell out of bed during the night, an incident that left us shaken and prompted new conversations about how to keep him safe while preserving as much independence as possible.
Another important development was the arrival of caregiving help. Accepting assistance was easier said than done, but it quickly became clear that having additional support could benefit both of us. Caregiving is not a journey that should be traveled alone, and January reminded us of the value of allowing others to help carry the load.
January was a turning point, in my mindset, in receiving help, in finding humor where frustration might shown up been before.
December 2025–Finding Balance
December was a month of recognizing that caregiving is not only about caring for someone else, but also about caring for yourself.
Over time, so much of my attention had become focused on Matt’s needs that many of my own priorities had been pushed aside. During December, I had to make a conscious effort to address some of my own neglected areas of life. It wasn’t about caring less for Matt. It was about recognizing that sustaining this journey would require paying attention to my own needs as well.
Not every day was easy. There were moments of exhaustion when the demands of caregiving felt overwhelming and the simple wish for the day to end became all too strong. Those feelings were not a reflection of lack of love or commitment. Rather, they were a reminder that caregiving can be both deeply meaningful and deeply tiring at the same time.
Looking back, December was a month of honesty. It was a month of acknowledging limitations, seeking support through making prayer requests of others, and beginning to understand that caring for Matt and caring for myself were not completing priorities. Both were necessary for the journey ahead.
November 2025 — Learning to Ride the Waves
November was a month of learning that LBD rarely follows a predictable path. Some days Matt seemed remarkably engaged and capable, while other days simple tasks became more difficult. The fluctuations could be confusing and, at times, frustrating. We began to understand that progress and decline were not always measured in a straight line. Instead, life with Lewy often felt more like riding waves–adjusting to changing conditions and appreciating the good days when they arrived.
As we learned more about the disease, we also discovered the importance of humor. Not every confusing moment needed to be viewed as a problem to solve. Sometimes the unexpected comments, unusual observations, and everyday misunderstandings were simply part of the journey. Finding reasons to laugh did not diminish the seriousness of the disease; it helped us cope with it. Humor became an important tool for maintaining perspective and preserving joy in the midst of uncertainty.
November was also a month I discovered paddling as an outlet. Time on the water provided a chance to recharge, reflect, and reconnect with a part of myself that had been pushed aside as caregiving responsibilities increased. The physical activity, quiet surroundings, sense of community, the following not leading, offered a much needed balance to the emotional demands of caregiving.
Looking back, November was a month of learning and adjustment. We gained a better understanding of the unpredictable nature of LBD, discovered the value of laughter, and began recognizing that maintaining my own well being was not separate from caregiving–it was an important part of being able to continue to journey. Those lessons would continue to shape many of the months that followed.
October 2025–Celebrating What Matters
October was a month of celebration, reflection, and making memories together, reliving memories together.
The month included my birthday which did not unfold the way I had hoped. Plans I had been looking forward to fell apart, leaving me disappointed and frustrated. Yet, as is often the case, life had a surprise in store. A BFF unexpectedly showed up to celebrate with me, transforming what had started as a disappointing day into a memorable weekend. The experience is a reminder that while we cannot always control how events unfold, friendship, kindness and unexpected moments of connection can sometimes create something even beteer than the plans we originally designed ourselves.
Another highlight was our anniversary trip to Sea Ranch. The dramatic coastline, peaceful surroundings, and slower pace provided a welcome seascape from everyday routines. More importantly, it gave us the opportunity to spend quality time together and relive the memories of getting married on the beach.
October also reinforced an important lesson that would continue throughout the year: while LBD is part of our story, it does not have to be the entire story. There are places to visit, celebrations to enjoy, and experiences worth pursuing. The disease may influence how we approach those moments, but it does not eliminate their value.
Looking back, October was a reminder to celebrate what remains rather than dwell exclusively on what has changed. Birthdays, anniversaries, beautiful places, and time together all served as reminders that life continues to offer meaningful moments, even as the journey becomes more complicated.
September 2025–Memories, Milestones, and Letting Go
September was a month filled with mixed emotion.
One of the most meaningful moments was the rediscovery of a framed poem written years ago by Matt’s Aunt. Long forgotten and found again, the poem provided a window into how others saw Matt long before Uncle Lewy moved in. Its was a touching reminder that while the disease changes many things, it does not erase a lifetime of relationships, accomplishments, and the qualities that made Matt who he is.
September also brough an opportunity celebrate a dear friends retirement, in, shall we say, grand style. It was a joy to be part of such an important milestone and to share in the happiness of someone beginning a new chapter of life, honoring all the accomplishments of the life lived before this moment. In a season focused on caregiving responsibilities and medical concerns, the celebration was a welcome reminder of the importance of friendship, community, and taking time to honor life’s accomplishments.
The month was also marked by the sale of a house that once had been our home. Letting go of a place filled with memories brought a mix of emotions. There was excitement about moving forward and gratitude for the experiences the home had provided, but also a sense of loss as we closed the door on an important chapter of our lives. The experience served as a reminder that change often brings about sadness and opportunity at the same time.
Looking back, September was a month of reconnecting with the past while continuing to move towards the future. Through old poems, lifelong friendships, and the closing of chapters, we were reminded that memories travel with us, even when circumstances change.
August 2025–Finding Calm Amid Uncertainty
August was a month of navigating uncertainty, managing anxiety, and learning where to find calm when life felt unsettled.
One of the more frustrating experiences of the month was falling victim to a scam. While the scam was unsuccessful, it was horribly stressful, adding more to an already stressful month when we were trying to sell our Virginia house. Selling a home isn’t just a financial transaction. It involves memories, hopes, uncertainty about the future, and countless decisions along the way. There were moments when the weight of those decisions felt overwhelming, particularly while balancing the ongoing demands of caregiving some three thousand miles away.
One tool that proved especially valuable during the month was meditation. Taking even a few moments to slow down, breathe, and focus on the present provided a welcome counterbalance to the uncertainty surrounding us. While meditation did not solve the challenges we faced, it helped make them feel more manageable.
Fortunately, August was not all stress and worry, Some of the month’s best memories came from watching Gus swim and enjoying the laughter and entertainment he brought into our lives. In a month filled with serious decisions and unexpected setbacks, those moments of humor served as an important reminder that joy often appears when we need it most.
Looking back, August was a month of contrasts. There was anxiety and reassurance, frustration and laughter, uncertainty and moments of peace. Through it all, we were reminded that while we cannot always control what happens around us, we can choose how we respond–and somtimes the best response is to pause, take a breath, and appreciate the things that still make us smile.
July 2025–Searching for the Right Path
July was a month of questions. Not the kind that can be answered with a medical textbook, a Google search or a conversation with an expert, but the deeper questions that come from the heart.
As we continued navigating life with Uncle Lewy, I found myself repeatedly facing choices between what was easier and what felt right. More than once, the harder path seemed to be the better path. It wasn’t always the most convenient option, nor the least stressful, but it was the one that aligned most closely with the kind of wife, caregiver and person I wanted to be.
Throughout the month, I found myself reflecting on the meaning of words and definitions. Sometimes a clearer understanding of a term, a concept, or an idea provided unexpected guidance. Definitions may seem simple on the surface, but they can help bring clarity when emotions and circumstances feel anything but simple.
Yest many of the questions I was wrestling with could not be solved through logic alone. Some answers can only be discovered through experience, reflection, faith and time. July was a month of recognizing that not every important question has an immediate answer and that some of life’s most meaningful lessons come from continuing to seek understanding even when certainty remains out of reach.
Looking back, July was less about finding solutions and more about learning how to live with uncertainty. It was a month of reflection, growth, and the realization that the journey ahead would require not only practical decisions, but also attention to the deeper matters of the heart.
June 2025–Finding My Voice
June was the month I found my voice, started this blog.
For months, years, I had been living the experience of supporting Matt through LBD, but much of what I was thinking and feeling remained internal. Starting the Uncle Lewy blog gave me an outlet to process the journey, share out experiences with family and friends, and connect the day-to-day realities of caregiving with the motions that often accompany it. What began as an experiement quickly became something more meaningful–a place to tell our story honestly, vulnerably, one post at a time.
The month also included its share of emotional gut punches. LBD has a way of delivering moments that stop you in your tracks. Often, it was a word spoken, derived from the disease, said by the person you love the deepest. Those moments were difficult, really difficult, making the good moments all the more sweet when they appeared.
Amid it all, I found a source of peace in our outdoor shower. There is something calming about stepping outside, feeling the fresh air, and taking a few moments away from the demands of the day. It became a place to think, reflect, and occasionally regroup before returning to whatever challenge awaited next.
Looking back, June felt like a roller coaster ride. There were highs and lows, hopes and worry, clarity and confusion, sometimes all within the same day. Yet it was also the month when I began putting those experiences into words. In many ways, Uncle Lewy was born from the realization that while I could not control the ride, I could choose how I responded to it–and perhaps help others understand the journey, our journey, along the way.
Uncle Lewy 