I am Kaitlin Wilcox

a family member of someone we've lost to ALS

South Carolina

Throughout my father's entire journey- struggle with diagnosis, denial, anger- my Mom's health took a significant decline.

We have no family history of ALS.

In 2018 my father started experiencing a strange set of symptoms such as shortness of breath and foot drop. He was diagnosed with ALS in November 2018 with limb onset ALS. He survived until April 4th 2022 and passed away from respiratory failure.

Throughout my father’s entire journey- struggle with diagnosis, denial, anger- my Mom’s health took a significant decline. She was diagnosed with severe depression, on multiple antidepressants and antipsychotics, was attending therapy sessions- nothing helped. Her cognitive decline was so severe that we became alarmed and began to seek a second opinion. Every physician we talked with said her symptoms psychological.

In 2020 she started to neglect their finances, she became unable to care for my father, her speech became weaker, she had episodes of choking, and her upper extremity muscles would fasciculate. It was bizarre. In February 2022 her primary neurologist (she had Multiple Sclerosis) referred her to a palliative neuromuscular doctor. She was diagnosed with fronto-temporal dementia and bulbar ALS. They gave her a year to live. She passed away October 4th 2022.

So both of my parents passed away from ALS this year. Neither one had ANY family history of ALS and my mother had genetic testing which was negative. That’s our story so far. I looked up cases of conjugal ALS and there were only 20 cases in the entire world. It’s hard to believe. It’s hard to explain to others. I feel like it’s significant but any of the physicians we talk to just say wow that’s unfortunate. I want to get involved with and just spread their story out there. I feel like it could help with research somehow.

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