3-2-1s of Duchenne Muscular Dystrophy

Duchenne Muscular Dystrophy (DMD) is a rare disorder that causes muscles to weaken over time. The muscle weakening usually starts with walking difficulties, followed by other motor functions, eventually affecting the ability to breathe as well as the function of the heart. A less severe form of DMD is called Becker Muscular Dystrophy.

I have had difficulties walking, running and standing up since I was born. However, I was only diagnosed with DMD at the age of eight. The discovery of my condition was made possible by a general practitioner when I visited him for a non-related flu illness. At that time, the condition was not as well-known in Singapore, so I'm grateful to have him pick up the symptoms of my condition and refer me to the hospital for further diagnosis. Early intervention and support played a significant role in helping my family and me live a more meaningful life with DMD.

I have come a long way living with DMD and being able to live beyond my 30s. As somebody with an advanced stage of DMD, I want to take this opportunity to share my candid views on the condition with you.

3 Hardest Challenges Living with DMD

Two months ago, a trainee doctor asked me, "What was the hardest part about having [the] condition?"

"The hardest part is having to rely on others for help for even the smallest thing," I answered almost instantly.

Yes, it's incredibly frustrating to need help for every single damn thing. Imagine having an unbearable itch on your face that you must wait for somebody to help you scratch. This was a real challenge I faced even when I was much stronger physically during my teenage years. (That's why I hate mosquito bites so much!) Then, as I got weaker, the list of things I needed assistance with got longer and longer – eating and drinking, checking my phone, turning in bed etc.

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For me, the most difficult part about asking for help is having to deal with another person – the one helping you. When doing things independently, it's up to you to decide if, when and how you want to do it. You only have to deal with your circumstances. But when it comes to getting help from others... well, you have to see the "mood" of others too. It's like an art of communication: you've got to know when and how to seek help without getting on the nerves of the person helping you.

This art of communication is also needed when it comes to bedtime. Now, you might be wondering what does it have to do with sleeping. To most of you, sleeping is pretty straightforward: wind down, wash up, set the alarm, head to bed, and that's it. However, it's a pretty complex matter for an individual with advanced DMD.

It's a challenge for me to sleep without much hassle as I need help to turn in bed. My caregiver is pretty much on 24/7 standby to assist me whenever needed. Without a doubt, it's physically exhausting and mentally draining for her. Try as I may, I can't help but still need to call her for help to turn me every night. And to make matters worse, the aches and pains get worse as my muscles weaken (and I get older), so the support I require increases. In the past, I only need help to turn my body. Now, I need help moving my limbs and placing them in a comfortable position (with cushions or pillows to support them) and not forgetting having to adjust my breathing aid's mask as well.

Sleeping can become a stressful experience for somebody with DMD (or other muscular dystrophy). In fact, there was a period when the stress got so bad for me that I felt anxious approaching bedtime, with my mind repeatedly telling me not to take too long to fall asleep. (Thank God it's over now!) Sleep is a time for rest and recharge, so it can be a real struggle to still rely on others for help (likewise for the caregiver providing assistance).

Last but not least, a significant struggle of having DMD, to me, has to be the "early ageing" aspect. My friends with DMD often joked that having muscular dystrophy is akin to "early ageing" – we feel much older physically than our actual chronological age. I personally feel that this ageing aspect isn't only physical but also cognitive and socio-emotional.

When I was 16, I encountered my first loss of a friend with the same condition. He was several years older than me, so we weren't close. However, because the muscular dystrophy community was small and closely knit back then, we were involved in various activities together. His dad sometimes gave me a lift in his van when we were going for activities together. It was a surreal moment for me when I attended his funeral.

For the first time, the words from the doctor and mainstream media about the shorter life expectancy of DMD seem so real to me. I started to have occasional thoughts about when it may be my turn, feeling despondent and a sense of unfairness whenever these thoughts came to me. As I continued to experience the passing of several friends, I felt as if I was an elderly man whose friends were getting old and dying one by one.

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Although these thoughts no longer bother me now, I don't deny that I still feel old regarding what I want to do but can't. As the Chinese proverb "心有余而力不足" goes, there are plenty of occasions when I felt severely constraint by my physical health and stamina. Take the recent hype of concerts held in Singapore, for example. I would have loved to attend the concerts of Coldplay, JJ Lin and Mayday if not for the heart discomfort I get from the thumping subwoofers. In fact, as an ardent fan of JJ Lin, I attended four of his concerts, and I had to excuse myself from the seating area because of the heavy bass for one to two songs in the last two concerts. I only stopped going to the concerts for fear of appearing in the headlines as a fan who collapsed during the concert. 🤣

There were also many events that I had to turn down or deliberate over whether to attend due to concerns about my stamina. Even for things I can do in the comfort of home, such as watching Formula 1 and attending video conferences, I might have to forgo if it's too late at night. I sometimes feel like I'm living a life vastly different from others my age. I felt disconnected and out of touch with the mainstream society. (On a positive note, this partly inspired me to come up with Living an Unordinary Life.)

2 Things That Made Living with DMD Easier

Living with DMD may not be easy, but it's not all doom and gloom. If I were to use the weather to describe my life now, it would be 15% thunderstorms, 25% showers, 25% cloudy, and 35% sunny! 60% without rain is a good amount of time for anyone to go out and enjoy activities or simply chill and relax. Every now and then, I have to remind myself not to take that 60% for granted and to be grateful for the many things (and people) that paved the way for a smoother life journey.

There are many things that made my life easier, but I want to keep this post an easy read. So, I will only talk about two of them in this post. (Perhaps I'll write a separate post about them 😂)

I always believed that I am where I am today because of the support I have received from the people around me. Since young, I've been fortunate to have a supportive family who didn't give up on me just because I have an incurable and life-threatening condition. My mum, especially, gave me the freedom to pursue what I wanted and supported me in whatever I did. When I could no longer do toileting independently, she would accompany me to school just to help me with it. Day in and day out, she patiently waited outside the classroom for me to call for help. When people asked about her hope for me, her reply was simple, “他开心就好” (as long as he's happy, in Mandarin). Although she's no longer around now, her words keep me going, especially when I am down.

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It takes a village to raise a child. Outside of my family, there are countless individuals and communities that played a role in nurturing me. When I was first diagnosed with DMD, the medical professionals (doctors, nurses, therapists, etc.) were the ones who guided my family and me to the resources we needed. AWWA was the first organisation that we touched base with. They were instrumental in getting me well-adjusted with my disability at school. From school talks to physiotherapies and activities outside of school, their engagement allowed me to integrate more easily with my able peers.

When I turned eleven, I was introduced to a newly formed organisation called the Muscular Dystrophy Association (Singapore). At MDAS, I felt I wasn't alone in this journey because there were many others who had the same or similar conditions. It was through MDAS that I got to step outside of my comfort zone and try out new things. From disability sports to public speaking, I learnt how to live beyond the limitations of muscular dystrophy.

Friends were there to help me live beyond my limitations too. In my initial years of using the wheelchair, my primary school friends made me feel that I was no different from them. They never left me and continued to play together with me. Some even went the extra mile to help carry me and my wheelchair up and down the stairs in school. I was fortunate to also meet such caring friends in polytechnic who didn't mind staying on campus instead of going out during free time. These people made a difference in bringing sunshine into my life.

Aside from the "heartware", the hardware is what makes a difference in my life too. Most recently, I was given a new lease of life when a friend inspired me to use the breathing aid during the daytime. I had been feeling down for some time as I wasn't able to do things or go out as much as I wanted to due to my lack of energy. I couldn't speak continuously for more than five minutes, so I thought that was it for my motivational speaking aspiration... Until I noticed how a friend of the same age with DMD had so much energy to go out regularly and engage in lengthy conversations. He joked that he became very talkative after he started using the BiPap (breathing aid) during the day. His testament motivated me to try using more of the breathing aid, especially when I need to interact a lot with people. Today, thanks to this equipment, I'm going out more and accepting more speaking engagements.

This change reminded me of the time when I first used a motorised wheelchair. I felt a sense of newfound freedom. I didn't have to wait for somebody to wheel me. I didn't have to frustrate myself with giving directions to the "driver". I am free to go where I want that's wheelchair accessible. However, when my hands got a lot weaker a few years ago, I began to struggle with driving my wheelchair. I got worried about my ability to go out, especially using public transport to travel. My worries were quelled when my physiotherapist introduced me to a mini joystick drive control requiring significantly less force. After a long time of sorting out admin matters and logistics (and lots of fine-tuning of the joystick), I can now continue to drive worry-free (except during cold conditions 😅).

When there's a will, there's a way. Living with DMD has taught me there's always a way to work around an obstacle or limitation. Whenever I thought that was the end of something I could do, someone or something would show up to open my eyes to new possibilities.

1 Hope for the Future of DMD

There are now an increasing number of treatments for DMD, thanks to advances in medical research and gene therapies. These treatments bring new hope to those with DMD and their families. However, many of these novel treatments currently come at an exorbitant cost. Not many people can afford to pay such a hefty price tag, and I don't think it's sustainable for public healthcare to fund them in the long run. I definitely hope these treatments will become more affordable and accessible in the near future.

Before I end this post, I'd like to put up a small disclaimer that what I've written may not be fully representative of the lives of all persons with DMD and their families. I always encourage my audience to get to know the person as a friend instead of somebody with a disability. Don't assume you know a person with a disability just because you know the disability or the condition. I'm happy to hear your thoughts about what I've written, your experience with DMD, or anything related!