FIRST ISSUE

Issue #1 APRIL 2 2025

🔷 From our corner of Texas to yours - welcome to our weekly journey with CIDP. Each week, we'll explore, share and maybe help a bit. I walk this path daily so let's make each day a little better.

A front porch view…

Let’s start slow on this first issue, I hope to have more soon….

Commander under Fire

With almost 10 years of experience with this disease and having tried multiple treatments to slow or stop my CIDP spread, I learned to be aggressive. We must aggressively use every possible resource to stop this NO CAUSE NO CURE disease that is eating us.

I wish there was no need for this newsletter, but being a freelance digital designer with CIDP threatening to ruin my work capability….well, here we are.

In coming issues I hope to go in depth on things like our doctors, our caregivers, and more.

Comments and feedback will always be a part of our trek. I hope there will be no need for more than a few issues. WITH A CURE and I can quit writing.

📚 THIS WEEK'S FOCUS

  • "When CIDP Becomes Part of Your Marriage" - Your partner’s needs

  • “Meet the Experts” - My newsletter, so my HERO first

  • "Your Medical Team Works for YOU: Taking Charge of Your Treatment" - Don’t be a one man army

  • “Normalcy” - CIDP never goes away

  • “Personal Disclaimer” I am not your doctor!

 "DID YOU KNOW?" 

ADAPTIVE TECHNOLOGY 🔧 • Did you know there are smart utensils that stabilize themselves for easier eating? • Did you know that voice-activated home systems can now control everything from lights to thermostats? • Did you know there are shoes with GPS tracking for those with balance issues?

RESEARCH & STUDIES 🔬 • Did you know researchers are developing biomarkers to predict CIDP progression? • Did you know stem cell therapy trials for CIDP are currently underway? • Did you know artificial intelligence is being used to analyze nerve conduction studies?

💝 When CIDP Becomes Part of Your Marriage

Let's have an honest conversation about what happens when CIDP joins your relationship. Nobody hands you a manual for this, and the impact can be overwhelming for both partners.

The Early Days: When CIDP first hit, my partner and I faced challenges we never expected. Simple things like going out to dinner or planning a weekend suddenly became complicated. The stress? It was real, and it affected both of us in different ways.

Emotional Impact:

• Dealing with uncertainty

• Managing changing roles

• Handling frustration

• Processing grief

• Building new normals

Communication Changes:

• Learning to express needs clearly

• Discussing limitations openly

• Sharing fears and hopes

• Planning for bad days

• Celebrating good moments

What's Working For Us:

• Regular check-in talks

• Honest discussions about needs

• Planning ahead for challenges

• Maintaining individual interests

• Finding new ways to connect

Nobody talks much about romance when dealing with chronic illness, but it's an important part of life that deserves attention... 💕

Resources for Couples:

Marriage Counseling Directory

• Psychology Today Therapist Finder 🔗 https://www.psychologytoday.com/us/therapists/chronic-illness

• Well Spouse Association Directory https://wellspouse.org/find-support/

Support Groups for Partners

• CIDP Foundation Support Groups 🔗 https://www.gbs-cidp.org/support/support-groups/

• Chronic Illness Partner Support 🔗 https://www.chronicillnesspartners.com/

Relationship Workshops

HERO’S

🏥 DR. DIANA CASTRO - NEUROLOGY SPECIALIST 

🌟 A HERO IN OUR CIDP JOURNEY

It's not just her expertise that draws patients from across Texas and beyond – it's her heart.

Like a beacon of hope in the complex world of neuromuscular disorders, Dr. Castro has this incredible way of making complicated medical information feel less overwhelming.

In my own journey with CIDP, finding a doctor who understands that each case is as individual as a fingerprint makes all the difference.

What makes Dr. Castro unique is how she weaves together cutting-edge medicine with good old-fashioned care. She's not just treating symptoms, she's treating people. Her approach is straightforward, caring, and always with a focus on hope.

What matters most to her patients is her gift for making each person feel heard and understood. In the sometimes overwhelming world of CIDP, that's worth its weight in gold. Finding the right doctor is like finding a trusted trail guide – and in Dr. Castro, many of us have found just that.

I hope to have much more on our Hero’s.

Just a few links:

"Your Support Team: Helping Them Work with You"

Remember this: Everyone on your medical team works with YOU. From nurses to pharmacists to insurance coordinators, here's a few ideas to manage your support network.

Building Your Team:

• Identify key players

• Establish communication channels

• Set expectations

Show appreciation

• Stay organized

Working Together:

Regular check-ins Clear communication Respect boundaries Express needs clearly Follow through

Creating the perfect support system isn't just about finding good doctors - it's about building a network that understands CIDP and works together.

Essential Team Members:

• Primary neurologist

• Infusion nurses

• Physical therapists

• Insurance coordinator

• Pharmacy team

Achieving—”NORMALCY”

🌟 Finding Your New Normal with CIDP: A Texas-Sized Journey

Y'all, let me share something from the heart about this journey we're on together.

When CIDP first showed up at my door uninvited , I had some pretty fixed ideas about what "normal" looked like. But like any good Texan knows, sometimes you've got to adjust your stance to stay in the saddle. 🤠

Here's what I've learned along this winding road :

  1. Embracing Change

  • Like Texas weather, CIDP can change mighty quick

  • Some days are sunshine , others need an umbrella

  • It's all about rolling with those changes

  1. Celebrating Small Victories

  • Tying those boots 👢

  • Holding that coffee cup steady

  • Every victory counts, no matter the size

  1. Quality Over Quantity

  • It's not about how many miles you cover, it's about making each step count

  • Finding joy in the journey

  • Gratitude

  1. Building Resilience

  • Like a Texas oak tree bending in the wind, strong roots keep us grounded

  • Growing stronger through challenges

  • Staying in the moment

Words from the Heart ❤️: "This disease might change our path, but it sure doesn't change our destination. We just might take a more scenic route getting there"

Remember, normal is just a setting on the washing machine!

💡 RESOURCE PAGE

Online Communities

• Reddit Chronic Illness Partners 🔗 https://www.reddit.com/r/chronicillness/

• Facebook Groups:

• The Mighty - Partners Community 🔗 https://themighty.com/chronic-illness/

Local Texas Resources

• UT Southwestern Support Services 🔗 https://utswmed.org/conditions-treatments/support-services/

Please get educated on CIDP.

A back porch view……

Being positive is hard and being positive everyday has been way beyond me.

I have my “rock” and I hope you have yours.

A Caregiver’s Creed: The Three H's: Help, Heal, Hug 🤗

A Deep Dive into the Power of Human Connection

What Science Tells Us About Hugging: According to Psychology Today's research (https://www.psychologytoday.com/us/blog/keep-it-in-mind/202201/hugging):

The Magic Number: 20 Seconds ⏰ • Releases significant oxytocin (the "feel-good" hormone) • Reduces cortisol (stress hormone) • Lowers blood pressure • Creates deeper emotional bonds

Daily Hug Prescription: • Aim for 6-8 meaningful hugs • Each hug should last 20 seconds • Quality matters more than quantity

For CIDP Warriors: • Adapt hugging positions for comfort • Communicate your needs • Use support when needed • Remember: gentle hugs count too

Benefits Backed by Science: • Stress reduction • Improved emotional well being • Better sleep quality • Enhanced immune function • Decreased anxiety

Remember: Even with CIDP, the healing power of human touch remains important - just adapt it to your comfort level! 💝

  Change somebody's day.

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:

• Always consult your healthcare team

• Your experience may differ from mine

• Information shared is from personal research and experience

My Goal Is Simple:

• Share what I've learned

• Build community

• Offer hope and support

• Provide helpful resources

• Create connections

Medical Decisions? Always partner with your:

• Neurologist

• Primary care physician

• Healthcare team

• Treatment specialists

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

Till next week…

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