Chasing My Husband's Diagnosis

We have been blessed to have the support of our family, friends, colleagues, and community ever since my husband's health struggles began nearly eight years ago.  After receiving the diagnosis of "Behavioral-variant Frontotemporal Degeneration (FTD), with a secondary consideration for Dementia with Lewy Bodies", we felt blessed to have so much love and support from our family, friends, colleagues, former students and their families and others in our community.  

Due to the difficulty of that diagnosis and respect for my husband, we held back from a more public platform to share updates and more details of our family's story. It's been nearly four years now since we received the diagnosis and a Covid pandemic beginning shortly after we received this life-changing diagnosis, but also nine years since this journey first began for our family. 

I have decided to be open about the struggles that I've faced and how his illness has greatly impacted our lives and my well-being.

So many people in our lives have asked how they can support us and I hope that by sharing our story that they have a better understanding of our needs and what our family is going through. The biggest struggles are physical (for him), emotional (me), and financial (both of us). We appreciate any way you can help us.

I also welcome your emails of support, as well as stories and memories to share with our young daughter as she grows up. Emails can be sent to [email redacted]

If you are interested, I have created a blog to share more about my journey: https://chasingdiagnosis.wixsite.com/blog

Thank you for your love and support.  

Kristen

Updated August 2023

Our Family's Journey & Diagnosis Chase

Our story began on July 16, 2014, precisely one month before our wedding. On this day, we found ourselves starting a ten-day hospitalization filled with lots of doctors, tests and prayers. Unfortunately, the only answer we received was deciding on the song for our first dance, "Three Little Birds" by Bob Marley, as we felt connected to the lyrics- Dont' worry about a thing / cause everything little thing is gonna be alright. 

 

We celebrated our wedding day on August 16, 2014, feeling so much love from our family and friends, hoping that all of our worries were behind us.  

Although we know now that this was only the beginning of our "diagnosis chase" and the start of my husband's declining health.

 

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.

 

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 really was every's favorite teacher and coach, as well as a loyal best friend, known for his infamous toast, "To Health, Happiness, Good Times, and the Best of Friends." 

As his family, our hearts have broken as we've 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. 

For nine years now, we have turned to many doctors to help us diagnose and treat my husband's continued health issues.  For most of the time, his symptoms were dismissed, saying, "He's too young to have dementia" while we were also passed along to different specialties for more tests and lack of answers.

We now know that younger people can suffer from dementia and neurocognitive diseases too. They can be very hard to diagnose and even the medical professionals that we turn to for help do not always have the knowledge or understanding to help families like ours.  

 

Thankfully, we worked with a neuropsychologist who listened attentively to our concerns and reviewed his symptom progression and chart notes and told us with confidence that my husband has Behavioral-variant Frontotemporal Degeneration, which is a neurodegenerative disease also known as FTD. She also formally gave "secondary consideration to Dementia with Lewy Bodies", which is a difficult-to-diagnose disease that also

 

Every day has become a struggle for us. Sometimes it's physical for him, but always emotional for us. At this time, he maintains functionality and awareness as well as cognitive fluctuations, Parkinsonism-like motor issues, physical pain, and many changes within the brain and body. 

 

 

How To Support Our Family

 

Many people continue to ask us how to help our family and I will always say "prayers".  

We also welcome other forms of support from our family, friends, and community, feeling very grateful for all that you've already done for us.  

 

We are greatly appreciative of your support and welcome you to follow our continued journey through the Chasing My Husband's Diagnosis blog and social media pages.

Kristen 

Blog- https://chasingdiagnosis.wixsite.com/blog

Instagram- chasing_my_husbands_diagnosis