Sharing My Perspective About DMD With a Fellow Columnist
This week’s column will be slightly different than normal. I reached out to fellow Muscular Dystrophy News Today columnist Betty Vertin, who has three boys with Duchenne muscular dystrophy (DMD), ages 16, 13, and 11, to seek her collaboration.
I asked Betty five questions about life with Duchenne, and about being the parent of children with Duchenne. In return, she asked me questions. My responses to her questions follow, while Betty’s will be published in her own column on Friday.
BV: Has it always been easy for you to accept help from others in the form of caregivers, or is it something you had to grow accustomed to?
HM: Asking for help has never been easy for me. For a long time, I felt like a burden whenever I asked a friend or family member to carry me up the stairs, assist me in the bathroom, or stay back and walk with me when I couldn’t keep up with my peers.
As I’ve gotten older and weaker, I’ve had to rely on others to help me, because there simply was no other way. A combination of need and slowly getting over those feelings of being a burden have made it easier for me to ask for help.
As I wrote in my last column, I recently had a breakthrough. A keynote speaker at the CureDuchenne Futures Conference in Orlando, Florida, in late May, reminded us that we are giving people joy when we allow them to help us.
You are a successful person, with a college education, career, and your own apartment. These are things that parents like me want for our kids. What things did your parents do that helped you achieve these things?
The biggest lesson my parents taught me was to have discipline. They told me I needed to eat my vegetables to stay healthy and strong. I had to wear my night splints every night. I had to be stretched every day. While I usually accepted what they asked of me, I would be lying if I said there weren’t a few nights when I would be kicking and screaming about it.
Being healthy is a great foundation to find success. And I’ve translated that discipline into nonmedical activities.
Beyond those practical lessons, I always knew that I was loved, and I had people rooting for me at home. That made me want to succeed even more. And whenever I fail, I know I can lean on them.
As an adult living with Duchenne, what kind of support, if any, do you need to manage your care? For example, do you make your own appointments and attend them on your own, hire your own care providers, and manage prescriptions with the pharmacy? Do your parents or other caregivers help?
I have minimal support from my parents in that respect, but I always ask them for advice. I understand that they have more life experience and can answer questions like, “How do I call the doctor’s office to make an appointment?” Or, “What do I do if my prescription refill isn’t ready?” Or, “What are your thoughts about this potential caregiver?”
My oldest son with DMD is 16. If you were able to talk to your 16-year-old self, what are three pieces of advice you would give?
The first piece of advice for my 16-year-old self would be to avoid comparing yourself to others. It’s not fair to you to try to be someone you’re not. You have a different set of challenges. The best thing to do is to compare yourself to yourself.
Secondly, try not to worry about dating. I’m sure you already are seeing friends get into relationships with others. Don’t think there is something wrong with you, because there isn’t. Sometimes it just takes extra time to find the right person who will love you for who you are.
Finally, get out of your comfort zone. There are so many regrets I might not have had if I was willing to be a little uncomfortable. My dad always says “carpe diem,” which translates to “seize the day.”
Do you have older friends with Duchenne or Duchenne families that you have leaned on to learn from their experience, or have you and your family often had to figure it out as you went? For example, when you were preparing for college, did others have advice for you, or did you figure it out on your own as you went through the process?
For the most part, we’ve had to figure it out as we went. I am blessed to be part of a generation of boys whose quality of life has been improved by medical innovations. These innovations have allowed us to accomplish what once was thought to be impossible, such as graduating from college.
Did you find this column interesting and helpful? Please share your thoughts in the comments below.
Note: Muscular Dystrophy News 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.