“Seth was an avid hunter prior to his ALS diagnosis. He played and excelled in sports in college, including football and baseball. He worked until summer 2019 as an independent contractor for oil and gas leasing. Seth’s [ALS] symptoms began in 2014. He saw a neurologist in 2015 that suspected ALS, but said that Seth didn’t meet the full criteria for diagnosis. Seth and I were in denial and did not want to accept that this could be a diagnosis in his future.
We went about building a life together – married in 2016, bought a home, and began trying for a family, all while trying to brush his symptoms off as ‘no big deal’. It was spring 2017 when we decided that his symptoms could no longer be ignored and received the official [ALS] diagnosis.
While we were greatly upset by his diagnosis – we did not let this stop our plan for building a life together. We refuse to let ALS define us — it is already taking away enough from our family and we try not to let it ruin everything — we enjoy our life and continue to life as “normal” as we possibly can. We welcomed our first son in April 2018 and our second son in June 2019.
[I work full-time as a nurse practitioner in rheumatology]. Getting home care for Seth has been a great challenge because it is not covered by insurance. It is frustrating in that I need to continue to work to provide for my family, but cannot get any help to care for my husband while I am at work. I have never felt pulled in so many directions and so helpless. Seth deserves to get the [assistance] he needs throughout the day, rather than having to wait for me to come home and [also] contend with our two babies.
Seth has always been a fun, caring, loving, and motivated individual. The most difficult part of watching a loved one with ALS, is seeing the things he always strived to do, be taken away from him.”