Chasing My Husband's Diagnosis

This journey of mine 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 answer, but also felt comforted to have calls, texts, and visits from family and friends that kept 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, yet were inspired to choose “our wedding song” as my daughter calls it.

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Don't worry about a thing

cause every little thing is gonna be alright. 

"Three Little Birds" by Bob Marley. 

My husband were discharged from the hospital 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 hopeful to 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 both 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.”

(FYI: The latter isn't true, it's just not as common compared to older ages.)

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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.  While terms like “Mild Cognitive Impairment” and “Parkinsonism” were given in the assessment, we left feeling hopeless on our drive home after the neurologist told us, "You can come back in a year for another evaluation."

Another year?  Seriously?!!!  I truly couldn't imagine what my husband would be like a year later.  I just couldn't imagine it, but 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.  Of all the doctors we’d seen since the very first day, she treated my husband like a person first, instead of a body with symptoms and struggles. 

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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 (Bv-FTD), but also gave consideration to another disease, Dementia with Lewy Bodies (DLB) due to the dozens of symptoms that had presented and greatly aligned with the latter.  She explained that FTD is more common at his age, so expressed her professional opinion it was that and not the other.

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Frontotemporal Degeneration and Lewy Body Dementia are two progressive neurocognitive diseases that I had only just heard about in our search for answers, but soon one that would become an unforgettable part of our lives.

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To be honest, for about a year before then, after reading an article about Robin William's battle with Lewy Body Dementia written by his wife, I felt confident that we finally found my husband's diagnosis.  What she shared about her husband's daily struggles and cognitive and behavioral decline was almost exactly what I had witnessed with mine. 

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. It’s hard knowing that he still maintains some awareness of his struggles with cognitive decline, Parkinsonism-like motor issues, physical pain, autoimmune systems, and many other 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." 

This blog is a way to share my story and the journey that I've been on since my world suddenly changed in 2014.

While at this time I cannot confidently speak of a concrete diagnosis for my husband, I do hope to raise awareness for Frontotemporal Degeneration, Lewy Body Dementia, and other neurocognitive diseases that I have learned so much about and have a great impact on families, sometimes younger like ours.

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