Oh yeah, I have a progressive condition

Progressive Condition4

Whatever you do you have to keep moving forward.

Martin Luther King

In my world, life is a continuous journey of change.  I get it.  Change can be scary, and most folks would do just about anything to avoid it.  However, I firmly believe that real personal growth and discovering who you truly are require embracing change.  Now, throw in a medical condition and things get a bit more complicated.  Well let’s be real, it’s a lot more complicated!

Whatever your perspective, those of us dealing with health challenges are on a constant quest for new experiences.  Why?  Well, because you never really know when your abilities might decide to take an unexpected detour, and those chances might slip away.

Understanding Progressive Condition

So, here’s the deal.  This may sound odd but sometimes I forget my condition is progressive. I work so hard doing everything I can to not let this get to me.  But, at the end of the day, this progressive condition is my new normal.

Here is a great example and I asked my PT therapist today about this issue.  Up until 2-3 weeks ago, I didn’t have much of a challenge with the shower process.  Yes, for the past few years I have had to always rely on shower bars, to keep me upright.  Other than that, not too much of a problem.  But lately, I cannot stand when drying off.  My body rocks forward and back and I am afraid I will fall.  It’s just one more thing that reminds me.

They’re these health issues that don’t just stay put; they evolve and throw new challenges at you over time.  It’s a continuous ride of unpredictability, and yeah, it can be a rollercoaster of emotions.

The Emotional Rollercoaster

Getting hit with a progressive condition diagnosis? Let me tell you, it’s a life-altering moment. Suddenly, you’re facing this uncertain path that’s both intimidating and confusing. Emotions like fear, grief, and frustration become your companions. But here’s the twist – within that whirlwind of feelings, a hidden strength starts to surface.

Adapting to a New Normal

Adapting to a “new normal” is inevitable while dealing with a degenerative illness.  I’m not really a fan of the term “new normal” as it reminds me of the Covid lockdowns.  But for the sake of this article, I’ll use it.

It’s a journey of tweaking lifestyles, altering daily routines, and reinventing how we pursue our passions. Sure, it’s not a walk in the park, but let me tell you, adapting becomes this unexpected source of strength. It’s about empowerment, and finding new ways to thrive despite the hurdles.

Don’t get me or my message wrong.  I get into periods, or ruts, where I am mentally struggling.  A few days this week have been especially hard, and I don’t have all the answers.  It takes every bit of inner strength to get through the day. 

Finding Meaning in the Journey

Yeah, it’s a tough journey, no doubt. But within the twists and turns, many of us discover profound meaning.  I think I have said this before, but I am a big believer in “everything happens for a reason.”  What that reason is, well, that is always the question, in that immediate moment.

It could be personal growth, new connections, or contributing to a greater cause.  This sense of purpose becomes my guiding light, helping me face the challenges with determination and hope.  It’s the reason I started this blog/website, and it helps me to stay strong. 

 What is your meaning?  What is your personal journey?

Coping Strategies and Wellness

Yes, the physical part is tough, but don’t sleep on the mental and emotional toll.  Our go-to coping mechanisms, whether they be mindfulness exercises, therapy, or simply appreciating small wins, end up becoming our secret weapons.  Making wellbeing a priority is an essential and crucial aspect of the journey, not a luxury.

Connecting Through Shared Experiences:  A group of people who are going through the same things and find strength in their shared experiences.

The ‘us’ isn’t just about dealing with our conditions individually; it’s about finding solidarity with others in the same boat.  The sharing of experiences, whether through online forums, virtual support groups, or local meetups, is incredibly consoling.   It’s like we’re this unspoken alliance, offering each other hope and understanding in the face of the unknown.

This is why I started this website.  I want this to be a community or hub, where everyone is welcome to share their stories and experiences.  A place where we can all learn and become advocates.

Building a Support Network

The ‘us’ is incomplete without the support crew.   Friends, family, and caregivers.  They play superhero roles, offering emotional support.  Also helping with daily tasks and creating that essential sense of belonging.  Building and nurturing these support networks.  It’s a lifeline in the maze of a progressive condition.

The Importance of Advocacy

Advocacy is a biggie for those of us dealing with progressive conditions.  Whether it’s advocating within the healthcare system or shouting from the rooftops to raise awareness, we become our own champions.  It might mean diving into research initiatives, sharing personal stories, or simply making some noise to shine a light on what we face every day.

Celebrating Victories, Big and Small

In our world, victories take on a whole new meaning.  They’re not just about overcoming major health hurdles; they’re about relishing the small wins.  Each achievement, no matter how small, adds up to this mountain of strength and resilience.  It’s about celebrating ourselves and our community, recognizing that every step forward is a victory worth cheering.


Living with a progressive condition isn’t a solo gig; it’s a collective experience.  The ‘us’ that emerges from these shared journeys is a force of strength, resilience, and connection.  As we strive for better treatments and, hopefully, cures, that collective spirit of ‘us’ remains a beacon of hope.  

Please share your thoughts and/or comments on this or any other article.  And if you would like to get involved and share your experience with Ataxia, please get in contact with us and join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story to inspire positive change.

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