Navigating My Daily Life with Cerebral Palsy As An Adult
I am very independent but I require 24/7 care that meets my personal and compassionate needs. I am right-handed. I can easily hold objects with one hand. I can use my fully functional body to perform physical activities such as exercising, posing, dancing, and hugging. I can drink independently with a flexible straw. Sometimes I have difficulty coordinating my left arm due to poor motor skills but the arm is still strong as well as my right arm. That means my muscles are strong as long as I can.
I can rely on someone to assist me with my self-care needs. Self-care is essential for disabled people who can live independently with some support to take care of themselves daily through their wellbeing. My self-care is independent with some support I need. This is an adaptive approach for self-care. I can’t do shower, makeup or hair independently and physically. I will always rely on someone to assist me with these self-care tasks. Other than that, I can also do anything with the use of one hand except feeding myself. I used to feed myself during my school years. I cannot feed myself anymore because it is very difficult and my hands are too complicated. I am a digital productive person, and I constantly use digital technology (iPad and computer) for my self care, work and home environment. This is one of my absolute priorities that help me maintain my independence and remain safe and comfortable in every situation.
- Holding objects including hanging clothes with one hand
- Using a computer and iPad every day with one hand
- Creating my own stuff like outfit list, written notes, and files digitally
- Exercising and stretching with full body in a seated and laying position. I can use both hands to do that.
- Standing independently
- Relying on someone to assist me with hygiene, skin care, fashion, and beauty tasks.
- Practicing my mindfulness and visualization.
- Enjoying myself and relaxing.
I am sharing how I navigate a daily life with cerebral palsy as an adult. Daily life includes morning routine, daily tasks, activities, and night routine. I am an excellent time manager and planner. I am a night owl person (A night owl is a person who tends to stay up late and wake up a little bit late than usual). As of now, I am self-employed and I am also seeking a remote job. Being self-employed means I can do my own business/freelance work. My daily schedule consists of two different periods- one is “Weekdays” which occur Monday through Thursday and another one is “Weekends” which occur Friday through Sunday. “Weekdays” is a period refers to focus more on productivity/work and less on fun activities. “Weekends” is a period refers to focus less on productivity/work and more on fun activities. I can also do my own work sometimes on weekends. I occasionally do something fun on weekdays. Following my daily schedule is a top priority for me to keep track on my progress and maintain my independence. But sometimes it can be challenging or difficult to find a way to do that.
Let's see what my daily life is through my two worlds of Cincinnati and South Florida! I am dividing my life between these two amazing worlds. if you haven't read my blog post about Cincinnati and South Florida, you should read "Best of Both Worlds: Living Between Greater Cincinnati and South Florida" blog post.
Morning Routine
In Cincinnati, I wake up at 7:15am Monday through Friday so I attend an adult day program which operates from 9am to 3:30pm. I take a transportation to the adult day program. I wake up between 8am and 10am on Saturdays and Sundays. In South Florida, I wake up between 8am and 10am every day so I feel like I work from home/at home.
Shortly after I wake up, I go to the bathroom and get dressed while being seated on the toilet and with assistance. Then wash my face with assistance - I have a CeraVe facial cleanser. I eat a breakfast with assistance. I brush my teeth with assistance. Sometimes I do my makeup and hair with assistance. Currently, my dad helps me out with my morning routine every morning. (In fact, he is in his late 60s and has been working hard on taking care of me. Sometimes he has a back pain that makes it hard for him to help me get dressed.) Sometimes my mom helps me with doing my hair/makeup. When my parents are out of town, I have someone to assist me with my morning routine. My parents are the best morning caregivers! They always have treated me with unconditional love and respect every day.
Daily Tasks
- I check texts, emails, and social media
- I stretch/exercise
- I use my iPad to communicate with you
- I use a live captioning app that enables me to read people's voices through captions
- I create my own stuff like outfit lists and plans digitally
- I check weather and calendar
- I work on my iPad
- I create and edit my blog posts
- I rely on a caregiver to assist me with getting dressed, my personal care, meal prep, do laundry, light cleaning, getting out my clothes, and changing my bed.
- I look for new opportunities
- I take a shower with assistance at least two times per week- Monday and Thursday. A trained caregiver gives me a shower.
- During dinner time, I do DoorDash, dine out, or have someone prepare dinner. My mom occasionally cooks something delicious for dinner.
- I create graphic design projects via iPad and computer.
- I post recent events/situations on my social media.
- I track analytics.
- I stream any entertainment like Disney+, Hulu, Netflix, and Max.
- I do weekly physical therapy which helps me build and maintain my strength and balance.
- I schedule my salon and doctors appointments, and virtual meetings.
- Outside of my work, I love shopping, movies, traveling, social outings, and hanging out with friends. My favorite outings are beach, pool, movie theater, global restaurants, art museums, nature, and malls/shops.
- I attend fashion events.
I love reading about people’s routines! Thank you for sharing Marisa. It’s great to see how you navigate your day. I recently got into a routine for myself. I wake up at 5am most weekdays, eat breakfast, brush my teeth, and go to exercise class. After class I shower, get dressed, and drive to work. some days after work I stay to help with clubs. Otherwise, I usually come home and relax. Sometimes I get work done or do laundry. I like to cook dinner and watch Netflix or read. Before bed I pack my gym clothes and work clothes for the next day and I go to bed around 10pm. Weekends are more variable but I like going out, seeing my friends and family, and being outside. I’ve found a routine to be helpful and makes me less stressed!
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