Finding Strength in Every Fall: Navigating Life with Ataxia

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Life is not about how many times you fall down. It’s about how many times you get back up.

Jaime Escalante

Life often presents us with challenges that test our resilience, but few experiences are as disorienting and difficult as facing Ataxia.  Falling from ataxia is both a physical and emotional journey.  Let’s talk about the impact of Ataxia and the resilience required to navigate life’s unsteady path.

From the National Ataxia Foundation

Ataxia is not a specific disease, but rather a symptom of many diverse conditions that affect the nervous system.  Damage to different parts of the nervous system can cause Ataxia but many cases are caused by damage to a part of the brain called the cerebellum, which serves as the balance and coordination center.

Understanding Ataxia

The cerebellum is the part of the brain responsible for coordinating movement.  Symptoms of Ataxia can result from various factors, including genetic mutations, head injuries, stroke, or conditions like multiple sclerosis.  Ataxia can be different from person to person, but the most common one is a lack of balance and coordination, leading to frequent falls.

Imagine, for a moment, what it would feel like to always be on a sheet of ice. 

That feeling of knowing that with every step, you could lose all control.  Or the other example I have used in the past is walking down a city block. 

Most people do not even think about walking a couple of blocks with obstacles, other people, and turns.  I almost feel like a pinball trying to get around an obstacle.  And one of my biggest pet peeves is when a person just stops in the middle of the walkway, for whatever reason.  Too many people are unaware of their surroundings or just don’t care. 

Having to make a turn in another direction is another issue.  When you must make a right or left turn onto a new street, do you think about it?  Or do you just make that switch and keep going?  Well, for me, it is much more complex.  Let me explain…….

I am always playing the game of looking down to keep my balance when I walk and peeking up to see my surroundings.  I must take mental note of where we are turning and how far that is from where I am.  If I have to make a right-hand turn, for example, I have to judge when I need to prepare for that turn.  Most of you will just walk and make that turn.  I am always anticipating and looking for areas that are wide enough for me to maintain my balance.    

The Physical Struggles

The physical struggles of ataxia are evident in day-to-day life.  Simple tasks that most take for granted, such as walking or picking up objects, become herculean feats for those of us with this condition.  The constant fear of falling can lead to reduced mobility and reliance on assistive devices like canes or wheelchairs.  Creating an overpowering sense of frustration and dependency.

I am 6’4” and have a long way to the ground.  When I fall, the results are usually not very good. 

The Emotional Impact

Beyond the physical challenges, ataxia takes a heavy emotional toll.  Feelings of helplessness, vulnerability, and isolation are common.  Many people experience difficulties in participating in social activities they once enjoyed.  The loss of independence and the need for assistance can lead to a sense of burden on family and friends, further deepening emotional struggles.

As I get older and as the condition progresses, I find myself isolating more than ever from social events.  Going to big events with large groups of people is just too hard for me.  My heart and mind want to go but my body and movement fight me. 

Coping with Change

Receiving a diagnosis of ataxia is a life-changing event, and adjusting to a new reality can be scary.  However, we all have an incredible capacity to adapt and find strength in adversity.  But are you willing to make those efforts? 

Everyone always tells me they are impressed with how I handle this.  “I use your story as an example for my kids” or “I have always been amazed at how you handle what is happening to you.”  I truly appreciate all the kind words but really, I just don’t know any other way to be.  This is a life-changing progressive disease and I am going to do everything in my power to better my situation until I am out of options. 

Here are some ways for those of us with Ataxia can cope with the changes.  And remember, you must find out what works for you.  This is a process, and it is always changing!

  1. Physical Therapy:  Help develop strategies to improve mobility, enhance balance and manage daily activities more effectively. 
  2. Acupuncture:  For some patients with movement disorders, the effect of scalp acupuncture can cause sudden significant change, whereas others may need many treatments before they feel even a small improvement.
  3. Meditation and Mindfulness: Meditation is a powerful tool that comes with several health benefits. It’s the practice of thinking deeply or focusing one’s mind for a period of time with the goal of obtaining feelings of relaxation and inner peace.
  4. Assistive Devices: Accepting the use of canes, walkers, or wheelchairs can enhance independence and reduce the fear of falling.  I have a couple of walking sticks that I use when I will be in certain situations.
  5. Focusing on Abilities: While ataxia may limit certain activities, focusing on what can still be done instead of dwelling on limitations can promote a positive outlook.
  6. Seeking Support: Connecting with support groups and others who understand the challenges of ataxia can provide a much-needed sense of community. Sharing experiences and learning from others can be empowering.  That is why I set up Community Voices.  So that everyone can share and learn.
  7. Mental Health Support: It’s crucial to prioritize mental well-being. Professional counseling or therapy can help address the emotional impact of the condition.

Finding Resilience

The ability to overcome the obstacles presented by Ataxia is crucial.  It is the ability to bounce back, adapt, and find meaning in the face of adversity.  Not dismissing the challenges, but rather admitting them and embracing the resolve to keep going forward, is the definition of resilience.

Individuals with Ataxia can be true examples of resilience, but it’s up to you to push through.  We must confront every day with the determination and a will to defy the odds.  Make this journey an inspiration for all of us.  And enjoy life’s simple pleasures!

Share your thoughts and/or comments 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 for inspiring positive change.


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