What It Means to Stay Healthy While Living With SMA

Health is a unique and multifaceted experience, columnist Halsey Blocher says

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by Halsey Blocher |

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One glance at my medical records will very clearly tell you that I’m not exactly healthy.

The information contained within my chart includes a primary diagnosis of spinal muscular atrophy type 1 and a list of medications prescribed to treat that disease and manage its symptoms. It also gives details about the caregivers and the plethora of medical equipment — such as a ventilator, feeding tube, and power wheelchair, to name a few — that I rely on to perform all essential daily functions.

Yet I still consider myself to be fairly healthy. Why? Because I’m looking at the concept of health through a lens that is relative to my specific circumstances. Yes, my body requires high levels of assistance and medical intervention, but for someone living with SMA, I’m actually doing quite well.

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Building a Healthy Relationship With Your Body

What does ‘healthy’ look like?

According to an article on Happy Healthy You, “Being healthy means that you experience vitality and feel strong, fit, and confident daily. It means being realistic when it comes to food choices, exercise, sleep and work-life balance.”

I won’t go so far as to say that I’m physically strong or fit. My muscles are weak and easily fatigued. But considering that it was once predicted that my body wouldn’t sustain me beyond the first three years of life, the fact that it still possesses any amount of strength or energy is nothing short of miraculous.

As far as making realistic health decisions goes, teamwork and good communication with my mom (who is my primary caregiver), home care nurses, and physicians cultivate informed choices and aid in the implementation of a care plan that supports my individual needs and desires. This, in turn, helps to ensure my highest possible quality of life.

Addressing unique needs

Each person, regardless of whether or not they’re disabled, will need to manage their health in different ways. Our bodies are as unique as our personalities and preferences, and we must all tailor our care to accommodate that uniqueness in a way that allows us to experience good health to the best of our various abilities.

In a column titled “Being My Own Health Advocate Kindles Multidimensional Healing,” my friend and fellow SMA News Today columnist Katie Napiwocki shares her holistic approach to caring for herself, which she feels contributes to her overall well-being.

In her stunningly beautiful words, Katie also acknowledges how every person’s journey through healthcare will be different. She writes, “We approach our SMA care in a multitude of ways. We each hold a palette to paint from. Our sunsets will swirl in different colors.”

Taking a multifaceted approach

While much of health maintenance and treatment focuses on physical health, it’s also integral to attend to our mental, emotional, and spiritual health. For those in rare disease communities, our days can easily be consumed by appointments, medications, treatments, therapies, nutrition, exercise, and more.

This is all necessary. But sometimes we can be tempted to become so caught up in our physical health that we forget to also make time for these other equally critical aspects of our care.

This kind of care could include prayer, meditation, counseling, self-care, or a number of other practices. When we take care of our minds and souls in addition to our bodies, our health and happiness are enhanced.

In her work as a pastoral counselor, which she does in addition to caring for me, my mom uses these practices daily and witnesses the positive impacts they have. Working in a career that brings her additional fulfillment also allows her to better aid and encourage others in their own multifaceted journeys with health and growth.

Spiritual health is also something that my good friend and Cystic Fibrosis News Today columnist Brad Dell has benefited from. In a column titled “Don’t Discourage Your Hurting Friend’s Faith,” he says, “I was a noncompliant patient until my pastor’s wife reminded me that my body is a temple, and should be treated with that dignity. Suddenly, my treatment adherence and diet were about something bigger than myself.”

By incorporating more spiritual care in his life, Brad experienced greater health in multiple areas.

Health is precious

Achieving and maintaining good health is something that’s on many people’s minds this time of year. January is even National Staying Healthy Month. But for those of us with SMA or other rare diseases, being healthy is more than a yearly resolution.

We know just how fragile health can be, and with the help of our care teams, we spend extensive time and effort chasing or maintaining it. It will remain at the forefront of our minds all year long. It’s a cherished blessing that we can’t afford to let slip.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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