In 2017, my mother, Patricia Marsella, was diagnosed with Amyotrophic lateral sclerosis (ALS). She is 63 years old. "ALS is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease." (NIH). While your body continues to shut down, and your mobility halts, your mind remains sharp and aware. The life expectancy is 3-5 years; if the patient opts for a feeding tube and ventilator.
It was a heart-breaking blow to our family. I cannot imagine my mother's pain, struggle and frustration each day, as she slowly loses the ability to do everyday tasks that were once so simple. My father is my mother’s primary caregiver. He does everything he can to ensure my mother is happy and comfortable. He is 67 years old.
The ALS Association assists us with a nurse aid for 10 hours per week. My mother currently needs full-coverage care, 24/7, as her symptoms continue to progress. Mom was a very active, fun woman. She is kind, smart, funny and beautiful. My mom attended college in Switzerland, modeled in New York, cheered for the Philadelphia Eagles, worked at Macy’s for over a decade and became a flight attendant for American Airlines, traveling the world for over 25 years. Today, she is confined to a chair and hospital bed. We use a Hoyer lift to transfer her from one place to another. She cannot sit up, stand or adjust her body. She cannot use a toilet and needs full-assistance when bathing. She is slowly losing the ability to feed herself, brush her teeth and use her cell phone. My mother and I talk or text (text-by-voice) every day through our phones. Her speech has begun to slow down.
My brothers and I all work full-time jobs, and we visit our parents’ home regularly and help as much as we can. My family pays out-of-pocket care for special-needs services, nursing, medication, and supplies. Many medications ($150-250 per month) are not covered by insurance. Insurance also does not cover nursing or home health-aide care for ALS patients. It does not cover supplies or equipment. We rely on Medicare - which does not cover enough - it's never enough when your loved one is dying and supplies are considered "non-essential". We pay a nurse aide to assist my mother 3 days a week, from 9am-noon ($200/week). We need to update our home to accommodate my mother’s electric wheelchair. We also hope to purchase a new wheelchair accessible van (Handicap [used] van = $12,000-18,000) to ensure my mother gets to her doctor appointments at UPenn safely, and to take her out for dinner or to browse the mall. She's still Patti, and she deserves to live her best life. With every passing week, more help is needed and more changes are necessary. The expenses continue to grow.
Our family lives each day without allowing ALS to dictate what we can and cannot do. We created this page to ask for help. We have never asked for help until now. If you are a close friend or relative, and cannot donate funds, my parents enjoy visitors. They love home-cooked meals, movie nights, music, being outside in the sunshine, and eating out at restaurants; cleaning, running errands, grocery shopping, hair and make-up (Mom always looks good!) - anything helps! Please, share our page. We appreciate everyone's kind words, support and encouragement.
And thank you. Thank you so much for taking the time to visit this page and read about my Mom. My family is forever grateful for your kindness.
If you would like to know more about my mother and our family, please visit my blog: A Fair and Freckled Life . The blog will be periodically updated with new stories, photos, and videos about Patti's past and present. My mother is a legend. Always.
Mom's Surprise 60th Wine Tasting Birthday Party! (2014)
My father is transferring my mother from her bed to her wheelchair. It was a beautiful day and she was excited to go outside and spend time in the sunshine :)
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