BENEFITING: Amyotrophic Lateral Sclerosis Association
I am running the Philadelphia Half Marathon with the ALS association of Greater Philadelphia. The ALS Association makes sure the lives of those fighting ALS and their families are provided with the information and materials they need to make sure the patient is comfortable. If you have time, please read below on how ALS has affected my life.
In August 2013, my mom was told she was free of breast cancer. I went to visit her soon after and on my first day there, my mom was having trouble breathing. We rushed to the hospital where the staff spent endless hours running tests trying to find a reason to why this was happening. We left without any answers. Later in the week, she booked another appointment. Different doctor, still no answers. After my visit in mid-August 2013, my mom made a trip to the Mayo Clinic. She called me after her visit and said, "I have ALS." She couldn't get another word out and my step dad, Jim, had to take the phone. I had so many questions. I never heard of ALS but based on her reaction, what I would find out would not be good. I found out it causes the death of neurons which control voluntary muscles. It was terminal. Many people don't know that there are different kinds of ALS – my mom’s diagnosis was bulbar type ALS. Bulbar accounts for the majority of the worst kind of symptoms an ALS patient can face – that is because it affects the upper respiratory system first. I moved down soon after my mom was diagnosed to help Jim care for her.
In the beginning, the tough symptoms were delayed with the help of a drug called Rilutek. Only a month into diagnosis she was gifted a feeding tube, the worst gift of all but we made sure she always had her cup of coffee in the morning (her special request). A couple months into her diagnosis it became hard to understand what she was saying but we became professionals at understanding her which allowed us to make sure she was comfortable at all times. After four months, her voice started to disappear, she began to write on notepads to tell us what she was thinking, what she needed or to tell us we were being silly. As the disease progressed, she started losing the feeling in her hands. We got her a machine, an amazing machine – the kind that Stephen Hawking uses. It allowed her to have a voice again using only her eyes. The downside was my mom didn’t want to give in to the disease and she was too tired to use it.
To further the story along, I will always remember the night of April 20th, 2014 – three days before my mother passed away. I was assisting her to sit up as I always would but this time was different. It was just me holding her weight, she was not able to help. She lost almost all of the feeling in her body. I called for Jim and he saw me on the floor. We started to cry and although she could not verbally communicate with us – we all made eye contact and we knew. I sat there on the floor squeezing her legs while she tried to rub my head with her last bit of strength just like how she would comfort me when I was sick as a child. We picked her up and brought her back to bed. That next day she did not wake up. She did not ask for her cup of coffee in her feeding tube. She did not ask us to pick her up. It was as if she was in a coma but different because she could hear us, she just could not communicate. She was trapped in her own body.
We called my sister in law who got in touch with the American Red Cross to contact my brother to get him to us ASAP (he is an Army Ranger). That next morning, my brother walked in the door. We spent the day sitting next to her, talking to her about everything and anything. My brother told her stories about her four grandchildren and Jim talked to her about his love for her and their life together.
The morning of April 23, 2014, I woke up next to my mom in bed, my brother woke up in the chair next to her bed and my step dad sat at the end of the bed. My step dad asked me to take my mom’s pulse. I did and it was declining. Jim called for Father Tony (he married my mom and Jim that January; seen picture) and our close friend Ann Marie. After he said a prayer, my mom opened her beautiful brown eyes, looking at all of us while she took her last breath. Heartbreak, sadness and tears filled the room. ALS took my mother away from me on April 23, 2014, only 8 months from the time of diagnosis.
I didn't understand why this had to happen, I still don't. Why her? She was a beautiful person, inside and out. She didn't smoke or drink - she was a health fanatic. She didn't deserve this; no one did and no one does. Through the anger and sadness, I was relieved for her because she no longer had to suffer another day living with ALS.
I could sit here and tell you that I planned to share all of that with you but I didn't. I sat down and I began to write and I couldn't stop. I know how hard it is to talk about this ugly disease but if we do not share our stories, how will we spread awareness?
Running in memory of my mom and step dad
Cheryl Bucci: May 11, 1958 - April 23, 2014
James Mooney: December 1, 1941 - February 11, 2016 (caregiver/husband to Cheryl Bucci)