A friend in the DMD world makes a difference in my self-care

In my recent columns, I’ve shared several challenges we’ve faced in the past months of my family’s journey with Duchenne muscular dystrophy (DMD).

My accessible van will be in the shop for the foreseeable future. I’ve returned to work after over a decade at home as a mom to several children and a caregiver to three of my sons: Max, 18, Rowen, 15, and Charlie, 13, all of whom have DMD. They’re participating in a clinical trial that’s been more demanding than we’d bargained for.

We’ve had our good moments, too. Our oldest daughter, Lexi, was married in August, just a week before Max moved across town into a college dorm.

But good or bad, it’s taken an emotional toll on me. I’m still optimistic and find reasons to laugh each day. I celebrate our victories, big and small. But I’m tired. I sleep for three to four hours a night before I wake up and toss and turn until my alarm goes off.

I’ve lost a few pounds, but not because of diet and exercise. As a mom of seven and a full-time educator, I almost never sit down — and feel guilty when I do.

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How am I dealing with my current stress level? Well, I’m not doing great, hence the lack of sleep and weight loss. But I’m making an effort to deal with all the changes in my life with the support of a close friend.

Several years ago, when my boys were in their first clinical trial, I traveled to Dallas to meet with a small gathering of parents, which was organized by a pharmaceutical company. All there were involved in the same double-blind trial and had self-disclosed their participation. The purpose was to begin navigating the path toward the drug’s approval by the U.S. Food and Drug Administration.

During that meeting, I was among the first to introduce myself, explaining that I was from Nebraska, had been involved in the trial for several years, and had three sons with DMD. I don’t remember much about the actual day of the meeting, but I remember the people I met, especially one of the other moms.

A friendship begins

Joanna approached me at dinner after our first day of meetings. My story was so much like hers; she had two sons with DMD, and they were nearly the same age as mine. We clicked. Although we’d never met before that small conference, we left close friends, excited for our families to meet each other.

A few months later, we had an opportunity. Both of our families had flown to Washington, D.C. to advocate for drug approval on behalf of the pharmaceutical company. Our husbands clicked! Our children bonded so well that for months after the D.C. trip, they’d call and FaceTime each other. In fact, one of my happiest memories from that time period is seeing her two boys and my three racing and zooming through the hotel lobbies in their mobility scooters, all with smiles a mile wide!

Joanna and I have reconnected the past couple of summers at the Parent Project Muscular Dystrophy conference. It felt as if no time had passed. We’re planning a vacation together with our kids for next summer. This winter, we hope to meet for a weekend. Then our husbands can perhaps do the same on a separate weekend.

The healing power of time with someone who completely understands what we’re going through and shares many of the same experiences is unbelievable. When we’re together, we cry, laugh, and talk until the wee hours of the morning.

I’ve had a stressful year. Joanna has, too, as both of her sons had surgery this year and then moved onto two different college campuses. None of those things is easy.

Since my friend and I landed in a stressful land simultaneously, we’ve decided to talk on the phone once a month, or more as needed. We talk on Sunday afternoons; the calls take as long as they take. We’ve been texting often.

It’s the best kind of self-care I could imagine at this point in my life — and honestly, it’s about the only kind I want to take time for.

Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.