My Parkinson's Life at Its Best
Surely, we all know how the conversation goes when looking at a glass that is half-filled. I think there is a comparison between seeing the glass as half-full or half-empty and a conversation that looks at what it is like to live with Parkinson’s disease (PD) before and after one’s diagnosis.
Imagine a glass filled with water to a level representing the age at which you were diagnosed. I was 62 so I would fill the glass approximately 6/10 full. Is the top part of the glass empty? Not at all.
The air-filled space between the water and the top of the glass represents possibilities. My life did not stop when I was diagnosed with Parkinson’s. The life I envisioned stopped, but I am learning how to see new opportunities and plan accordingly. The choices I make matter.
Choosing a care team
I think of 3 concentric circles with me in the middle, then family and friends, and finally medical personnel. Initially, I saw a primary care physician, then a neurologist, and finally a movement disorder specialist.
At some point I may need a cardiologist, dermatologist, psychiatrist, dietitian, physical therapist, occupational therapist, or speech language pathologist. I try to be my own best advocate and keep my care team informed.
Exercising daily (or almost)
Cardio exercise, also known as aerobics, helps keep the cardiorespiratory system healthy. Stretching, yoga, Pilates and tai chi are just a few of the activities that help with flexibility. Increased strength results from resistance training that may be body-based exercise like push-ups or will include the use of machine weights or free weights.
I choose walking, cycling, and swimming for cardio. My flexibility exercises are basic and occasionally include some yoga and stretch band work. I have seen great rewards using machine weights so now enjoy that more than I expected.
Taking medications according to the plan
Each physician seems to have their own plan for introducing medication 1, then 2, then 3, and so on. I learned about each drug as it was introduced. I paid attention to its potential side effects and drug interactions. I keep up to date on most of the PD drugs in case they are discussed during a doctor appointment.
Speaking of seeing a glass as half-full, living well depends on the ways I balance different types of wellness. I continually ask myself whether I am proactive, reactive, spending enough time with each type of wellness, and if the actions I take are helpful. There are more than 5 wellness dimensions, but I find myself focusing on creative, emotional, physical, social and spiritual wellness.
I found it interesting to learn that simply viewing art is good for me. Trying something like improv, picking up a paintbrush or preparing to sculpt a new vase are different in many respects but they are alike in one very important way. Creative endeavors challenge the human brain to seek new connections and bring satisfaction.
Emotional intelligence looks at how one’s self-awareness influences one’s interactions in the world. It helps us manage our emotions and relate well to others. It can help one see the positive side of living your best life with PD.
There is so much information available on exercise that it is easy to find. The difficult part may be choosing what will help us best. Having worked in the field of exercise and health all of my adult life, I am familiar with exercise. I highly recommend seeing a personal trainer or physical therapist to anyone who needs help getting started. They can teach you how to begin and how to continue. Look for PD-specific programs in your area or online.
Our foundational social connections are important throughout our life. Things like empathy, feeling socially connected, and understanding the needs of others are a part of social wellness. It is helpful to first "know thyself" as a person with Parkinson’s in order to know others and to strengthen relationships with them. At first I felt awkward within the local Parkinson’s support group but have grown to know and admire each member.
Spiritual well-being grows the more we know our purpose in life, connect to others, and find hope in living well with what is available to us. Some people feel like they improve their spiritual health by being in nature, meditating, or finding ways to serve others. The practice of spiritual wellness is very personal yet can also be built in community.
Living well with Parkinson's
It was my job to build my care team, choose to exercise, adhere to my medication plan, and pursue one or more wellness dimensions. Just a few of the benefits are feeling good about myself, connecting to others, increasing my physical and mental health, and leading a meaningful life. Working on these continues to help me see my "Parkinson’s glass" not only as half-full but also as ready to be filled with more of life at its best for as long as possible.
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