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For most of us, the body’s automatic systems quietly do their job — keeping blood pressure steady, regulating temperature, managing digestion, and keeping our hearts beating in rhythm. But what happens when that automatic balance begins to fail?

That’s the reality for people living with Pure Autonomic Failure (PAF) — a rare neurological disorder that disrupts the body’s autonomic nervous system, the network that controls these involuntary functions.


⚙️ What Is Pure Autonomic Failure?

PAF occurs when the nerves that control blood pressure, heart rate, and other automatic functions gradually degenerate. The result is a body that struggles to adapt to even simple changes — like standing up.

Common symptoms include:

  • Severe drops in blood pressure (orthostatic hypotension) when standing
  • Lightheadedness, fainting, or fatigue
  • Impaired sweating and temperature regulation
  • Digestive and urinary challenges
  • Cold extremities and poor circulation

These symptoms don’t arise from the heart itself but from faulty nerve signaling that fails to keep the circulatory system balanced.


🧩 How PAF Fits Into the Bigger Picture

PAF is part of a family of disorders called synucleinopathies, conditions linked by the abnormal accumulation of a protein called alpha-synuclein.

This same protein is involved in Parkinson’s disease (PD) and Multiple System Atrophy (MSA).

  • In PAF, alpha-synuclein primarily affects the peripheral autonomic nerves.
  • In MSA, it extends into the brain and spinal cord, adding movement and coordination problems.
  • In Parkinson’s, it mostly targets dopamine-producing neurons in the brain, leading to tremors and slowness.

While PAF may remain stable for many years, in some individuals it can evolve into MSA or Parkinson’s disease — underscoring how interconnected these disorders are.


📉 A Personal Reflection

“I’ve been working hard to keep my blood pressure up — yet even after taking Midodrine 2.5 mg, my readings hover around 74/42, occasionally reaching 85/54. The best I’ve seen lately is 98/73.

After reading research from major health institutions one finding keeps surfacing: checking norepinephrine levels may be key in understanding autonomic dysfunction.

Descriptions of MSA — autonomic failure combined with movement and coordination issues — resonate uncomfortably close to my own experience. It’s not easy to admit how much this affects daily life, especially when pride and persistence can mask the depth of what’s going on.”

These words capture what many people with autonomic disorders experience — the quiet battle between determination and the body’s limits.


💡 The Road Ahead

There is currently no cure for PAF, but management is possible. Treatments focus on improving blood pressure and reducing symptoms through:

  • Medications like Midodrine, Droxidopa, or Fludrocortisone
  • Increased fluids and salt intake ( optioned as per recommended by my Neurogist for BUOY)
  • Compression garments and sleeping with the head of the bed elevated
  • Careful activity pacing and monitoring

Ongoing research continues to explore biomarkers, such as norepinephrine and alpha-synuclein patterns, to better diagnose and predict the course of these conditions.


❤️ Living with PAF

For me living with Pure Autonomic Failure means constantly balancing between caution and courage. It challenges both body and spirit — but knowledge, awareness, and compassionate care can make a real difference.

Raising understanding of autonomic disorders like PAF and MSA isn’t just about medicine; it’s about restoring dignity, stability, and hope to those navigating life when even standing upright becomes a challenge.

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“Anchored in the storm, standing tall against a swept horizon.”

Every day, I navigate a silent current.

Dysautonomia—an invisible disorder—disrupts the very basics of life: heart rate, blood pressure, digestion, breathing. It doesn’t show on the outside, but it’s always there. Quiet. Relentless.

And yet—I stand.

I show up, not because it’s easy, but because I refuse to let this condition define me. Each sunrise reminds me: as long as I keep standing tall, I am still sailing forward.

This is what Embracable Mind is about.
Finding strength in the unseen.
Grace in the struggle.
And resilience in the storm.

Whether you live with a chronic illness, support someone who does, or are simply navigating life’s unpredictable waves—you are not alone.

Let’s embrace the mind, the journey, and the fight together.

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“Studies indicate that conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope are significantly more prevalent in women. Estimates suggest that approximately 80% of individuals diagnosed with dysautonomia are female”.

Even though I am a male living with a rare form of Dysautonomia was never the path I expected life to take me down. Yet for the past four years, it has been my daily reality—a quiet, relentless battle with a condition that most people have never heard of and even fewer truly understand. I live with severe neurogenic orthostatic hypotension, a condition where standing up can cause my blood pressure to plummet, leaving me dizzy, weak, or faint. It is a disabling condition made even harder by its invisibility.

Despite a regimen of treatments—midodrinefludrocortisone, and droxidopa—relief remains elusive. In fact, droxidopa, though rare and promising for some, caused me dangerous side effects: sudden spikes in blood pressure as high as 220, alarming weakness on the right side of my body, and other complications that forced me to stop the medication altogether. These experiences aren’t just clinical—they’re frightening, isolating, and exhausting.

Even those closest to me sometimes struggle to understand the invisible toll this takes. When every movement is calculated, when standing feels risky, when even sitting upright for too long becomes a challenge—it is hard to explain that to a world that sees you as “looking fine.”

This foreword is not just about my journey. It’s for everyone living with misunderstood, invisible illnesses. Stabilizing blood pressure is more than a medical goal—it’s a fight for autonomy, dignity, and the ability to simply move through the day. If you’re living in that space too, I hope the strategies in this guide offer more than information—I hope they offer solidarity, strength, and a reminder: you are not alone.

Studies indicate that conditions like Postural Orthostatic Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope are significantly more prevalent in women. Estimates suggest that approximately 80% of individuals diagnosed with dysautonomia are female.

Understanding the Gravity–Blood Pressure Connection

Gravity naturally pulls blood downward when a person stands, reducing blood return to the heart and brain. In healthy individuals, the baroreceptor reflex detects this drop and compensates by increasing heart rate and constricting blood vessels. But in those with autonomic impairment, this response is delayed or insufficient, causing symptoms such as dizziness or fainting. Common culprits include:

  • Orthostatic Hypotension (OH): A significant drop in blood pressure upon standing due to autonomic failure or medication side effects.
  • Postural Orthostatic Tachycardia Syndrome (POTS): Characterized by rapid heart rate increases upon standing, often with blood pressure instability.
  • Hypertension with Positional Variability: High blood pressure complicated by sudden drops when standing.
  • Dysautonomia: A broader term for autonomic nervous system dysfunction affecting blood pressure regulation.

Proven Strategies to Stabilize Blood Pressure

1. Change Positions Gradually

Sit up slowly before standing. Pause between movements to allow your body to adjust and reduce risk of sudden drops.

2. Use Compression Garments

Waist-high compression stockings or abdominal binders help prevent blood pooling in the lower body, supporting stable circulation.

3. Maintain Hydration

Aim for 2–2.5 liters of fluids per day. Use electrolyte-rich drinks when necessary, especially after exercise or in warm climates.

4. Engage in Physical Activity

Moderate, regular exercise improves vascular tone and autonomic response but with the low BP it’s a challenge. Focus on low-impact activities like walking I chose to do this in large shopping malls or city environment where easy access to SEATING AREA‘s, Or controlled exercises that do not cause orthostatic stress, such as reclined exercises like stretches, yoga and gentle weight lifting done from a seated or laying down position, recumbent biking, rowing, and swimming.

6. Consider Medications

Prescription that work for me options include:

  • Fludrocortisone to increase fluid retention
  • Midodrine to constrict blood vessels

7. Avoid Large Meals

Large meals redirect blood flow to digestion, which can lower overall blood pressure. Choose smaller, more frequent meals.

8. Use Caffeine Strategically

In small amounts, caffeine may temporarily raise blood pressure. Monitor your body’s response and avoid overuse.

9. Manage Stress and Mental Health

Stress and anxiety are powerful disruptors of cardiovascular balance. Practices like deep breathing, mindfulness, meditation, yoga, and tai chi calm the nervous system and boost overall cardiovascular resilience. Prioritizing emotional wellness is key to managing the physiological stress of blood pressure fluctuations.

Monitoring and Long-Term Management

Regular tracking empowers better management:

  • Check blood pressure lying down, then again after 1 and 3 minutes standing.
  • Keep a log of readings and symptoms to identify trends.
  • Share results regularly with your healthcare provider for more precise treatment planning.

Conclusion

Gravity is an unavoidable force that influences blood pressure regulation, especially during position changes. For individuals with conditions such as orthostatic hypotension, POTS, or autonomic dysfunction, this natural force can trigger daily challenges like dizziness, fatigue, and fainting. But gravity is not the only factor—mental and emotional stress often compound the problem, creating a cycle of tension and instability that undermines the body’s ability to self-regulate.

When the body is under chronic mental strain, it produces hormonal responses that can destabilize blood pressure, particularly in vulnerable individuals. That’s why emotional well-being is not optional—it’s essential. With a commitment to self-care, education, and consistent medical support, it’s possible to reclaim stability, one step at a time.

In essence, while gravity may test your body, unchecked stress tests your resilience. But both can be met with knowledge, preparation, and compassion. With the right tools and mindset, you can take back control, steady your blood pressure, and move through life with greater confidence and stability.

If you’re living in that space too, I hope the strategies in this guide offer more than information—I hope they offer solidarity, strength, and a reminder: you are not alone. just leave a message!!!

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In a world that often feels divided, let today be a reminder that love is more than just romance—it is kindness, empathy, and connection. Love is the thread that binds us together, helping us see beyond differences and appreciate the true value of friendship, family, and understanding.  

This day is not just about grand gestures but about the simple moments of care we show one another. It is a chance to teach and inspire the next generation to build meaningful relationships, cherish family bonds, and nurture emotional intelligence in a way that makes the world a little brighter.  

May we all take a moment today to celebrate love in all its forms and let it guide us toward a future filled with more compassion and unity.  

With love and appreciation,

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Both roses and human life at getting older remind us that every phase has its own beauty and worth. While roses eventually fade, the seeds and memories they leave behind continue their legacy — a metaphor for the ongoing impact of one’s life and actions, even as we age.

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As we prepare to celebrate this holiday season with family and friends, we customarily take stock of those things in our lives for which we are grateful. As we count our blessings, we must also take note of what is happening beyond our borders.

Today, more refugees than at any other time in history have fled unimaginable violence and persecution in search of safety and a more promising future for their children. Refugees need support now more than ever. Come join us to make power, communication, and access to knowledge a reality for those that need it most. And let’s consider what we could do more for those who have nothing.

It serves us well to remember that we are a country of refugees and a nation of immigrants. There is no better time to honor the legacy of welcoming the stranger than during this time of sharing and giving. Wishing our Friends and Family a Joyous Holiday filled with Peace, Love, and Prosperity. Best Wishes for a Healthy New Year!

Mike Freni

Kumbaya

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Today is International Women’s Day and as such I would like to honor all the (professional) woman in my life, past and present, who have fueled, organized, and grown the businesses I have teamed up with over the course of my career. These women have enabled my personal and professional growth and have also allowed me to see the world through another’s eyes. For this, and the countless other ways these women enhance our businesses, our industries, our communities, and our lives, I thank them, today, and every day.

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Every year I look back on the biggest challenges that life brings us but also looking at the greatest opportunities what came to us with thanks. Life never hands out things that you can’t handle. How you approach it will determine how you come through the other side. You can assume the victim role and feel sorry for yourself, or you can reach into the essence of who you are and find your inner strength. Then demand the self-worth and ability to rise up and meet your challenges heart on. You need to believe you can do this — you are powerful, you are amazing and you are inspirational!

Today we are giving thanks to all who have been supportive and kept us going from darkness to the ultimate light. From unconnected to be connected. This is just another year I praise to be surrounded by my beloved ones, my advisors and supporters, my team of smart developers and engineers and all those appreciated connections from around the world. Happy Thanksgiving. Thanks for your continued support @Kumbaya

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We all have to recognise that we all have weaknesses. I know I do. But I’m never willing to let them defeat me, or get me down. I have always sought to turn my disadvantages into advantages. For example, my dyslexia taught me to think differently, and solve problems in a unique way.

Richard Branson A to Z of business: W is for Weakness

I became a really good delegator early in life, and learned to find and work with people whose strengths balance my weaknesses.

By surrounding myself with fantastic people, who are brilliant in the areas where I struggle, we’ve managed to grow Virgin into the global group of businesses that it is today.

So instead of covering up your weaknesses and trying to sweep them under the rug, acknowledge them and start thinking about ways that you can use them to really benefit you.

What are you weaknesses?

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Invest with Us.jpg

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