The three point stance…

The utility company I worked for was very big on safety. When you get off the ground you maintain three points of contact at all times. While climbing or moving, without being strapped to a secure point, you must maintain three points of contact. Try star gazing or just stand in the dark and tilt your head back. Or looking through a viewfinder and taking action photos at the airshow. I’ve tried all of the above and yes - two points of contact (my feet) and a few near calamities - “just aren’t enough anymore.”

Spatial Coordination: your nerves are not sending the correct signal to your brain, pretty basic stuff.

Grab something, lean, or fall.

Have a good trip, but-

Traveling with CIDP isn't just about getting from point A to point B - it's about planning like a military operation while expecting the unexpected. Let me share some tips learned about hitting the road when your nerves have their own itinerary.

First, there's the treatment dance. IVIG treatments don't take vacations, so timing becomes everything. YOU MAY HAVE TO coordinate with doctors, insurance, and sometimes trying to find infusion centers in places you've never been, and YOU MAY TRAVEL FAR. It's like putting together a puzzle while the pieces keep changing shape.

Then there's the equipment saga. Every trip becomes a careful calculation: • Which mobility aids to bring • How many backup supplies • What adaptive tools you might need • Extra medications for "just in case"

The physical challenges are real:

• Long sits can trigger symptoms

• New environments test your balance

• Temperature changes affect your body

• Fatigue hits harder away from home

Here's a few tips:

1. Plan extensively, but stay flexible

2. Research accessibility beforehand

3. Build in rest days

4. Keep emergency contacts handy

5. Know your limits (and respect them)

6. Eating on the road The Basics of Anti-Inflammatory Eating: • Colorful fruits and vegetables • Omega-3 rich foods • Whole grains • Lean proteins • Healthy fats

   Foods That Help:

   1. Inflammation Fighters

   • Berries (especially blueberries)

   • Leafy greens

   • Fatty fish (salmon, mackerel)

   • Nuts and seeds

   • Olive oil

   2. Foods to Limit:

   • Processed foods

   • Excessive sugar

   • Red meat

   • Refined carbohydrates

   • Artificial additives

The hardest part? Sometimes having to say "I can't" to activities others take for granted. But you know what? We adapt. We find new ways to explore, to experience, to enjoy. Maybe we can't hike that trail, but we can find an accessible viewpoint that's just as beautiful.

Travel with CIDP means packing extra patience along with everything else. But with careful planning and the right mindset, we can still see the world - just at our own pace, in our own way.

This week’s HERO: You

Let's Talk About Your Mind: Living with CIDP

Folks, today I want to have a heart-to-heart about something we don't discuss enough - how CIDP affects us mentally. As someone living this journey, I know first hand that some days, your mind can feel as challenged as your body.

The Mind-Body Connection: Living with CIDP isn't just about managing symptoms and treatments. It's about dealing with all those thoughts and feelings that come along for the ride. Trust me, I've been there - those moments when frustration creeps in, when worry keeps you up at night, or when you just feel plain overwhelmed.

Here's what I've learned through my journey:

Your Feelings Are Valid • Feeling frustrated? That's normal • Worried about the future? We all are • Having a tough day? That's okay • Need to vent? You're allowed.

What's Really Happening: From my talks with my doctors, and my own research, I've learned that our mental health directly impacts how we and our bodies handle CIDP. When we're stressed, our symptoms can feel worse. When we're supported and positive, managing CIDP becomes a bit easier.

What's Working For Some:

1. Daily Check-ins

• Morning mood assessment

• Evening reflection

• Gratitude moments

• Small victories celebration

2. Building Support

• Regular chats with understanding friends

• CIDP support group connections

• Family time

• Professional help when needed

3. Finding Joy in Something - Practical Tips From Experience:

   • Start small - maybe just five minutes of quiet time

   • Keep a simple journal

   • Connect with others who understand

   • Find new ways to do what you love

   • Rest when you need to (no guilt!)

When to Reach Out: Listen, there's no shame in asking for help. Sometimes talking to a professional can make a world of difference. Your medical team, including most wonderful doctors , understand this is part of the journey.

Resources That Help:

• GBS/CIDP Foundation support groups

• Local CIDP meetups

• Online communities

• Professional counseling

Remember: You're not just dealing with CIDP - you're living life with CIDP. There's a difference. Your mental well-being matters just as much as your physical health.

Until then, be gentle with yourself. We're all in this together.

IT’S HARD!

"When Nobody Understands"

Bad times. You know the ones - when you're sitting there trying to button a shirt while your fingers feel like they're wrapped in invisible mittens, or when you're lying awake at 3 AM because your nerves are doing their own private fireworks show.

Get up, walk, lay down, repeat.

The truth is, CIDP can feel mighty lonely, even in a room full of people who love you. They see you struggling, but they can't feel that electric buzz running through your legs, or that cotton-wrapped sensation in your feet. They don't understand why some days you can manage just fine, and others... well, getting out of bed feels like climbing Mount Everest.

The frustration builds and builds. They can’t feel your pain but they can see it. The 24 HOUR buzz, the crawlies, the ice picks, the ants. I could go on. Doctors, friends and all have heard the description but nobody feels it like you. They try.

There's that moment in the grocery store when your hands suddenly decide they're done working, and you're trying to hold it together while fumbling with your wallet. Or that instant panic when you feel your balance going wonky in public, and you're searching for something - anything - to grab onto.

The fear is real too. That nagging worry about what tomorrow might bring, or whether that new symptom means things are getting worse. And let's be honest - sometimes you just want to scream, "This isn't fair!" Because it isn't.

But here's what you need to know - your feelings are valid (even men). Every single one of them. The frustration, the fear, the anger - it's all part of this journey we didn't ask to be on. You're not being weak, you're not being dramatic, and you're certainly not alone.

Sometimes, just knowing someone else gets it makes the load a little lighter to bear. So yes, this is hard. Really hard. And it's okay to say that out loud.

IT’S HARD! but somebody cares

Quick Bites

1. "Myelin Regrowth: The Facts" Recent studies from the Journal of Neuroscience show myelin regeneration occurs at measurable rates. In healthy conditions, peripheral nerves can regenerate at 1-2mm per day, with complete remyelination taking 6-12 weeks.

Source: National Institute of Neurological Disorders [URL: ninds.nih.gov/] Key findings: • Initial response: 48-72 hours • Active regeneration: 3-6 weeks • Full cycle: 6-12 weeks

2. "AI in CIDP Research" Artificial Intelligence is revolutionizing CIDP research through pattern recognition in treatment responses. Machine learning algorithms are helping identify optimal treatment timing and predicting patient outcomes.

Source: Nature Neurology [URL: nature.com/] Breakthroughs: • Treatment response prediction • Personalized therapy planning • Early intervention markers

3. "Facebook CIDP Communities" The largest CIDP support groups on Facebook offer valuable peer support and information sharing:

Source: GBS/CIDP Foundation International [URL: gbs-cidp.org/support/] Active Groups: • CIDP Support Group (30,000+ members) • Living with CIDP (15,000+ members) • CIDP Warriors

4. "Research Updates" Latest clinical trials show promising developments in targeted treatments for CIDP, focusing on precise immune system modulation.

Source: ClinicalTrials.gov [URL: clinicaltrials.gov/ct2/results?cond=CIDP] Current Focus: • New IVIG formulations • Targeted therapies • Biomarker identification

YOU GOTTA HAVE ONE

AI in Diagnosis: Revolutionizing CIDP Detection

Artificial Intelligence is transforming how we identify and diagnose CIDP through pattern recognition and data analysis. Machine learning algorithms can now detect subtle patterns in nerve conduction studies that human observers might miss.

Recent Breakthroughs: • Neural networks analyzing EMG results • Pattern recognition in symptom progression • Early detection markers • Predictive diagnosis models

Research from Johns Hopkins shows AI systems achieving 92% accuracy in distinguishing CIDP from similar conditions.

Source: Nature Medicine [URL: nature.com/articles/s41591-021-01456-w]

Key Applications:

1. Early Detection

• Symptom pattern analysis

• Biomarker identification

• Risk factor assessment

2. Diagnostic Accuracy

• Reduced misdiagnosis

• Faster identification

• More precise categorization

PERSONAL EXPERIENCE DISCLAIMER 📝

Let's get something important out in the open: I AM NOT A DOCTOR and I AM NOT GIVING ADVICE!

Everything I share comes from my personal journey living with CIDP. While I've walked this path for a number of years, please remember:

"This newsletter is based on personal experience and publicly available information. It is not intended to diagnose, treat, cure, or prevent any disease. Always consult qualified healthcare providers for medical advice."

Remember: This newsletter is like a friendly chat over the fence - informative and supportive, but not a replacement for professional medical care! 🏥