Living with Multiple System Atrophy: Tips and Tricks for Navigating Daily Life

Multiple System Atrophy (MSA) is a rare and progressive neurodegenerative disorder that affects movement, balance, and the body’s automatic functions—like blood pressure and bladder control. Often mistaken for Parkinson’s disease in its early stages, MSA comes in two main forms: MSA-P (parkinsonian type) and MSA-C (cerebellar type), each with its own challenges. While there’s no cure yet, there are ways to manage symptoms and maintain dignity and comfort.

Here are some practical tips and tricks for living with MSA or supporting someone who does.

1. Tackle Orthostatic Hypotension Head-On

One of MSA’s hallmark symptoms is a sudden drop in blood pressure when standing (orthostatic hypotension), leading to dizziness or fainting.
Tip: Rise slowly from sitting or lying down—pause at each stage (e.g., sit on the edge of the bed before standing).
Trick: Wear compression stockings or an abdominal binder to keep blood flowing upward. Boost salt and water intake (with a doctor’s okay) to maintain blood volume.

2. Stay Mobile with Smart Aids

Whether it’s MSA-P’s stiffness or MSA-C’s coordination issues, mobility can take a hit. Most people need a walking aid within a few years of diagnosis.
Tip: Work with a physical therapist to find the right tool—think canes, walkers, or even weighted walkers with laser guides for freezing episodes.
Trick: Try exercises like LSVT-BIG (originally for Parkinson’s) to keep muscles engaged. Short, daily sessions can delay stiffness.

3. Master Bladder Challenges

Bladder issues—urgency, incontinence, or retention—are common in MSA due to autonomic dysfunction.
Tip: Schedule bathroom trips every 2-3 hours to stay ahead of urgency.
Trick: Keep a portable urinal or absorbent pads handy for outings. For retention, ask your doctor about catheterization options—it’s less daunting than it sounds.

4. Boost Communication Clarity

Speech can slur or soften as MSA progresses, especially in MSA-C.
Tip: See a speech therapist early for exercises to strengthen your voice.
Trick: Use a text-to-speech app or a simple whiteboard for tough days—it’s a low-stress way to stay connected.

5. Ease Swallowing Struggles

Difficulty swallowing (dysphagia) can creep in, raising choking risks.
Tip: Work with a dietitian to adjust food textures—soft foods or thickened liquids can help.
Trick: Sit upright during meals and take small bites. A chin-tuck swallow (tucking your chin to your chest) can make a surprising difference—ask a therapist to demonstrate.

6. Manage Sleep Disruptions

MSA often brings sleep issues like REM sleep behavior disorder (acting out dreams) or apnea.
Tip: Elevate your bed’s head 20-30 degrees to ease breathing and reduce blood pressure swings at night.
Trick: For REM issues, pad the bed’s edges or sleep separately from a partner to avoid injury. A doctor might suggest melatonin or other meds.

7. Lean on Your Team

MSA is a team effort—neurologists, therapists, and support groups are your allies.
Tip: Find a movement disorder specialist familiar with MSA; general neurologists might miss the nuances.
Trick: Join a group like the MSA Coalition or MSA Trust (online or local). Hearing “me too” from others can lift your spirits.

8. Plan for the Long Haul

MSA progresses unpredictably, with an average lifespan of 6-10 years post-diagnosis. Planning ahead keeps you in control.
Tip: Update your home—grab bars, a shower chair, or a ramp can extend independence.
Trick: Talk to loved ones about care preferences now, not later. A simple checklist (e.g., “I’d prefer home care over a facility”) can guide future decisions.

Living with MSA isn’t easy—it’s a tough, relentless condition. But small adjustments can make big differences, whether it’s a practical fix like compression socks or an emotional boost from a support group. You’re not alone in this fight.

Have a tip that’s worked for you? Drop it in the comments—we’re all learning together.