Living Beyond the Diagnosis

When you’re fighting MSA, sleep—something that should be restful and restorative—often becomes another battleground. I used to think that exhaustion would bring sleep easily, that my body would at least grant me that. But I’ve learned the hard way that MSA has other plans. Sleep disturbances are common for people like me, and they don’t just affect us—they impact our caregivers, our families, and our ability to face each day with strength.

The Reality of Restless Nights
Before my diagnosis, I struggled with restless nights, waking up multiple times without knowing why. I chalked it up to stress, aging, or bad sleep habits. But after learning more about MSA, I realized these sleep issues were part of the disease itself.
People with MSA often experience:
• Fragmented sleep – Constant waking through the night without a clear reason.
• Excessive daytime sleepiness – Feeling drained during the day, no matter how much or little I slept the night before.
• REM Sleep Behavior Disorder (RBD) – Acting out dreams, sometimes violently, without realizing it.
• Sleep-disordered breathing – Issues like sleep apnea or trouble regulating breathing while asleep.

REM Sleep Behavior Disorder (RBD): A Warning Sign
If there’s one thing to highlight here, it’s RBD. Almost every person with MSA experiences it at some point. Looking back, it was one of my first symptoms before I even knew something was wrong. I would kick, punch, or shout in my sleep—sometimes waking up my partner, sometimes waking up on the floor. It felt like my dreams had broken through into real life.
Doctors say that RBD is a red flag for MSA, sometimes appearing years before other symptoms. If you or a loved one are experiencing this, take it seriously. It may be an early warning sign to push for a closer look at what’s happening neurologically.

How This Affects Caregivers
MSA doesn’t just rob the person diagnosed—it takes a toll on those who care for us. My restless nights mean my partner often sleeps lightly, listening for signs of trouble. My unpredictable movements can be startling or even dangerous. And when I wake up exhausted, they’re the ones helping me navigate another difficult day.
To caregivers reading this: You are seen. Your patience and support don’t go unnoticed. Just as we need help managing this disease, you need rest, too.

What Helps?
There’s no perfect fix, but here are a few things that have made a difference for me:
• Melatonin or prescribed medications – Some people find relief with melatonin or medications to regulate sleep. I chose CBD.
• A safe sleeping environment – I’ve removed sharp objects near my bed, added pillows for cushioning, and can even sleep in a separate space to keep your partner safe.
• CPAP or BiPAP machines – If breathing issues are present, a sleep study and these machines can help regulate airflow.
• A bedtime routine – Keeping a consistent schedule, reducing caffeine, and limiting screens before bed can help, even if just a little.
Final Thoughts

MSA takes enough from us. Losing sleep to this disease feels like one more cruel twist. But knowledge is power. If you’re experiencing sleep issues, know that you’re not alone. Talk to your doctor, make adjustments where you can, and most importantly—don’t give up. Every moment of rest we can reclaim is a small victory in this fight.

To my fellow MSA warriors and their caregivers: Keep going. Keep fighting. Even through the nights are restless, we are still here.

~Coach~