Living with NLSD-M

What is it like doing every day tasks with Neutral Lipid Storage Disease with Myopathy (NLSD-M)?
Tasks most people complete without a second thought like brushing hair, climbing stairs, or even lifting a glass of water can become physically exhausting. Muscles may feel heavy or weak, as if they're working against gravity more than they should. Fatigue doesn't just follow exertion, it sometimes precedes it, and unpredictably so. Yet amidst the frustration, there's often a resilience built through adaptation: pacing oneself, using creative strategies, and leaning on support tools or people not out of defeat, but with defiant grace. Every day becomes an act of quiet bravery... where doing “simple” is anything but.

How Gabby does her hair having NLSD-M

I’ve become the master of compensation living with NLSD-M. A simple task such as brushing your hair, blow drying and putting your hair in a pony tail is no simple feat. I have taught myself how to get the job done independently. It may take me twice as long but in the end the hair gets done.

Putting a shirt on

A look into what it’s like for Gabby to put a shirt on.

A simple easy task like putting on a shirt goes a lot further for me.
Putting on a shirt with Neutral Lipid Storage Disease with Myopathy (NLSD-M) can be a physically demanding and often a frustrating task due to the muscle weakness and fatigue. The effort involved in such a simple task highlights the daily challenges of living with NLSD-M and the need for creative adaptations to preserve independence like using my dresser. Even though some days harder than others, the job always gets done. 💪🏻

How I drink with NLSD-M

Lifting a glass to drink — something that seems effortless for most — becomes a coordinated challenge when you’re living with NLSD-M.

First, you must engage your shoulder muscles. But with NLSD-M, these muscles often are weak and unresponsive. Even initiating the movement may require a deep mental push.

Your biceps and triceps must work together to bend your elbow and control the angle of your arm. But those muscles, too, feel heavy — as if you’re lifting a small weight after already running a marathon.

Next, the intrinsic muscles of the hand and fingers are needed to grasp the glass — they must flex just enough to hold it securely, without dropping it. But the fine motor control is dulled. My grip sometimes feels weak, and I have to concentrate, telling my body exactly how much pressure to apply.

Even my core muscles engage to stabilize my torso as I try to reach and lift.

Finally, bringing the glass to my lips requires coordination between all my muscle groups, and by the time it reaches my mouth, I sometimes already feel exhausted — not from the task itself, but from how every compromised muscle had to work really hard to do what should be a simple task.

Going up and down stairs with NLSD-M

Walking up a flight of stairs with NLSD-M can be significantly more challenging than for someone without the condition. Here is what my experience is like.

Sometimes depending on the day, the first few steps might trigger some muscle fatigue. My muscles especially my glutes feel unresponsive. I have to have two handrails to assist in both getting up and down stairs. Once I get to the top sometimes I need a few seconds to make sure my feet are properly underneath before taking my steps.

Depending on the amount of stairs I sometimes feel like I am climbing Mt. Everest especially after a long day. In the end, I’m still doing it on my own and never giving up!

Join our mailing list