From Nurse to Caregiver to ALS Care Coordinator

Growing up, I was given the nickname of "machine gun" by my Dad. He felt that it was an appropriate name because he stated that "once the trigger on my mouth was released, one never knew when the action would stop." The comical part was that my mouth, which wasn't afraid to take anyone or anything on, was afraid of everything that was associated with the medical world. Illnesses, thermometers, medications, crutches, band-aids, etc. stopped me in my tracks and made me run the other way. Therefore, when I announced that I was going to be a nurse to my parents, they were in shock and wondered how someone with these two traits could ever make it in the healthcare profession. It took them a while to realize that as I grew up, healthcare no longer scared me and that their "machine gun" would not only care for patients but would advocate for them until all my ammunition was exhausted. I found my calling, loved helping, making a difference, and knowing that I had a part in their recovery.

I was a nurse for 4 years before my Dad was diagnosed with ALS. However, I had never encountered an ALS patient and really had only heard of the disease from my husband. His maternal grandmother passed away from the disease when he was just 8 years old, so he didn't know anything about the disease either. All I knew upon my dad's diagnosis was that it was terminal and that the gratifying feeling of taking care of him and nursing him to a full recovery was not going to happen. Therefore, I knew we would have to cling to hope and fight with all we had.

My 5'3" mom was a rockstar and was the main caregiver to my 6'0" Dad. To this day, I am still in awe of how she did this while running the entire house, completing daily tasks, and entertaining and feeding the non-stop family and friends that frequented the house on a daily basis. My sister and I were both married and living in two different states on opposite coasts. My sister was living in California and I was living in Virginia. However, we rotated flying out to Michigan at various times to help. There were obviously some sad times, but also times in which great, last memories were made. One of the memories that will forever be etched in my mind is the fact that I finally saw a twinkle in my Dad's eye when he realized that my mouth, which he frowned upon for years, was now his ally. I had no problems stepping in to tell a white lie, explaining that he was occupied when someone called to talk, was sleeping and couldn't have visitors right now, etc. Even though my Dad appreciated the daily love, support, and visits, he needed a break and didn't want to tell anyone and hurt their feelings. Therefore, I took this role on and gave him the break that he wanted and needed. I knew that I couldn't cure him, but nobody was going to stop me from advocating for him. I take comfort in knowing that I could help in this way and that he finally grew to appreciate my mouth.

My dad lost his battle to ALS on April 10, 2003. His diagnosis and death changed so many things. One of the biggest impacts was that it inspired me to change careers and start working with the ALS population. I took a break from nursing and ALS for a couple of years while raising my children. However, ALS was always a cause near and dear to my heart and I knew that it would be the area that I would go back to again. 

Through the various positions that I held after my Dad's death, the one thing that never changed was my mouth. However, I will be the first to admit that the last twinkle in my Dad's eyes did make it a bit louder. I am honored to be working at Synapticure every day and am motivated more than ever to not only fight for my dad, but for my husband's grandmother and every patient affected and impacted by an ALS diagnosis. Please know that you are not alone, there is hope, and that we're all in this together!

Warmly,
Eva