After the LBD Diagnosis

Feb 1

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5 Steps to Take Back Control

When I first met Grace, her husband had just been diagnosed with LBD. After some texting, we decided to meet at a local coffee shop. It was a beautiful fall day so we were able to sit outside and enjoy the sun. When I looked into her eyes, I saw the pain and confusion. She simply said, "I don't know what I should be doing."

Every family's journey with LBD is unique. There’s no “right” order. After reading this post, start with what's most important for your situation. If your loved one is having medication issues, begin with the symptom log. If you're feeling overwhelmed, start by finding support.

1. Start a Simple Symptom Log

Why It's Important: LBD symptoms fluctuate dramatically. Your symptom log helps you identify issues early and your doctors adjust treatments. It becomes invaluable when trying new medications and how your loved one might react to them. It also help explain changes you’ve seen to your healthcare team.

Grab any notebook or use your phone. Note good days, bad days, and what might have triggered changes. Include:

Sleep patterns (time and quality)
Medication reactions
What helps during difficult moments
Changes in behavior or abilities

You don't need fancy forms or complicated systems. Simple notes like "Good morning after 7 hours sleep" or "Agitated after evening visitors" help identify patterns your doctors need to know.

2. Collect Key Medical Information

Why It's Important: LBD often means coordinating multiple specialists. Having key information readily available reduces stress during appointments, prevents medication errors, and helps you advocate effectively for your loved one's care.

Create a folder (physical or digital) for:

Recent test results
Current medications and dosages
Doctor contact information
Insurance cards and numbers
Questions that come up between appointments

Keep this folder easily accessible. You'll reference it often. In an emergency, you’ll want to grab it an go because I don’t know about you, but if my brain is going to turn to mush, it’s in an emergency.

3. Create a Basic Calendar System

Why It's Important: Managing LBD requires tracking multiple medications, appointments, and daily activities. A reliable calendar system prevents missed doses and appointments while helping you maintain essential routines.

Whether using a wall calendar, phone app, or notebook:

Mark all upcoming appointments
Set medication time reminders
Note regular activities
Share access with key family members

Start simple - you can refine your system as your needs change. The goal is having one place to track everything.

4. Tell Your Inner Circle

Why It's Important: LBD caregiving is too big for one person. Your inner circle can provide practical help and emotional support, but only if they know what's happening. Early conversations help build your support system before crisis moments. This doesn’t mean telling the bookclub, but only those very few people you can trust and who will honor your privacy.

Choose a few key people to tell first:

Be direct but hopeful
Share basic LBD information
Ask for specific help
Let them know you're still learning

It's okay to say "We're just learning about this. I'll share more when we know more." They’ll have questions, and that’s alright. Share this website, they’ll understand and appreciate being able to process the information themselves. Let’s face it, it’s a lot to take in all at once.

5. Find a Local Support Group

Why It's Important: Experienced caregivers can share practical solutions and coping strategies. Having support reduces isolation and helps you navigate challenges more confidently. You'll gain insights that only come from others who've walked this path.

Start with:

Your neurologist's office
Local hospitals' support groups
Memory care organizations
Online LBD communities

Pick just one support resource to start. You can expand your network over time.

While you're exploring local resources, join our community of LBD caregivers. Sign up for "Caregiver's Companion," our monthly newsletter delivering practical tips, stories from other caregivers, and updates on LBD research right to your inbox (yes, it’s a plug).

My Thoughts

Take these steps at your own pace. Don’t let yourself get overwhelmed. Some families need immediate support groups, while others focus first on medical coordination. There's no wrong order - just what works for your situation.

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IMPORTANT: This website is informational only and does not provide medical advice, diagnosis, or treatment. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.