Our Diagnosis Chase

This journey of ours began on July 16, 2014, precisely one month before our wedding day. 

On this day, we found ourselves starting a ten-day hospitalization, which was filled with lots of doctors, tests, prayers, and support from family and friends. 

We spent our days waiting impatiently for an answers, but also lucky to have calls, texts, and visits from family and friends to keep us going.  After a few days of continued struggles and no apparent cause, we transferred to a larger hospital in the city for additional monitoring and testing.  But still, no answers were found, other than us finding inspiration behind our choice for our first dance at the wedding.

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Don't worry about a thing

cause every little thing is gonna be alright. 

"Three Little Birds" by Bob Marley. 

We were discharged home about twenty days before our wedding day, accompanied home by my husband's parents and love from family and friends across the country. 

On August 16, 2014, we celebrated our wedding surrounded by so much love from our family and friends.  We were all hopeful that his health struggles and all of our worries were behind us.  Unfortunately, years later, we know now that this was only the beginning of our "diagnosis chase" and the start of my husband's declining health.

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For years since, we turned to doctors to help us find answers for my husband’s increasing symptoms and declining health. Instead, we felt continually dismissed as we were passed along amongst different specialties, many recognizing our concerns with others overlooking his symptoms.  At times, we had to suffer more from disheartening comments from medical professionals over the years, such as:

“He’s probably stressed about the wedding and new job.”

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"It's probably anxiety and depression."

“Your MRI looks better than mine.”

“He’s too young to have dementia.”

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My husband endured dozens of tests over the years, with results providing only a few explanations for his symptoms.  In a way these tests ruled out many other diseases, but still left us questioning the cause behind his cognitive decline and increasing symptoms.

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We saw multiple neurologists, psychiatrists and therapists, and other specialists throughout the city of Chicago as well as at Cleveland Clinic, but instead of answers we were given rule-outs including Multiple Sclerosis and Parkinson's. 

To tell you the truth, we were very hopeful that our trip to Cleveland would bring about the diagnosis that we had been chasing for years.  We heard terms like “Mild Cognitive Impairment” and “Parkinsonism” but left feeling hopeless after the neurologist told us, "You can come back in a year for another evaluation."

Another year?  Seriously?!!!  I truly couldn't imagine what he would be like a year later after all of the changes and struggles that has already surfaced.  But as we sat there hearing what seemed to be another doctor giving up on us, we felt like we were given no other choice.

I think we would have given up on doctors completely, but were lucky to be referred to a neuropsychologist who spent hours listening to our concerns and reviewing the history of his symptom progression.  She encouraged him to voice his worries and share how he was feeling-  physically, cognitively, and emotionally- validating his concerns instead of dismissing them as so many other medical professionals had seemed to do years before.  She read through his medical records as well as the pages I provided with my own documentation of changes in his personality and behavior and cognitive decline.

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We left the first appointment feeling emotionally exhausted, but more importantly we felt understood. 

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A week or two later, we met with her again.  I believe we held hands as she shared her evaluation, saying with confidence that my husband has Behavioral-variant Frontotemporal Degeneration (FTD), but did give a secondary consideration to Lewy Body Dementia, which is even more difficult to diagnose and understand.

FTD is a neurodegenerative disease that I had only just heard about in our search for answers, but soon one that would become an unforgettable part of our lives.

It's been nearly nine years of watching my husband fade away and lose himself to a disease that we struggled to identify for a long time. 

Watching his progression and learning more about FTD and other diseases over the years, I don’t believe he has that particular neurodegenerative disease. 

Rather, I strongly believe that his true diagnosis is Dementia with Lewy Bodies, which is even more difficult to diagnose and typically occurs at older ages. 

In my heart, I’ve always believe this to be the disease that started to take my husband away from me back in 2014, especially after reading about Robin Willliams’ own unknown battle with the disease, which wasn’t diagnosed til his death through a brain autopsy.  

Pathologists have stated that Robin Williams has one of the worse cases of Lewy Body Dementia that they’ve ever seen through an autopsy, yet he maintained functionality and lacked an accurate diagnosis until the day he died.

Robin Williams story is so much like my husbands that it’s as scary as it is comforting, the latter because I found an answer as to why my husband has changed so much over the years. 

It’s hard knowing that he still maintains some awareness of his struggles with cognitive decline, Parkinsonism-like motor issues, physical pain, and many changes within the brain and body. 

His illness has impacted his relationships with his family and friends, as well as taking him from being the teacher and coach that he loved so much.  He was everyone’s favorite teacher and coach, as well as loyal best friend, known for his infamous toast, "To Health, Happiness,  Good Times, and the Best of Friends." 

My heart has broken many times over as I have watched him suffer and lose the light in his eyes that once shined so blue with dreams of the future and sparkled when he told stories or made up silly songs for the kids to laugh at along with him.  

This blog is a way to share my story as a spouse and caregiver, and mother to a young child, along this journey. 

I also hope to raise awareness for Frontotemporal Degeneration, Lewy Body Dementia, and other Neurocognitive Diseases that impact families like ours.