Unsteady Ground

UN STE A DY GR O UND

Unsteady Ground

Designer & Editor: Maria Camila Lugo

NOTE TO THE READER

My dad was diagnosed with Cerebellar Ataxia on October 2014. His first symptoms were subtle, almost imperceptible. I remember how he would occasionally stumble or lose his balance, brushing it off as mere clumsiness. But as time went on, those occasional slips became more frequent, more pronounced.

Imagine trying to walk a straight line, but your body betrays you, swaying and stumbling as if the ground beneath you has turned to quicksand. That’s ataxia. It’s the loss of coordination, the unsteady gait, the constant battle against gravity that no one else sees but you feel with every step.

Doctors describe ataxia as a neurological condition characterized by a deficiency in voluntary movement coordination. It arises from damage or malfunction of the cerebellum, the brain region responsible for coordinates movement and balance. What makes ataxia particularly challenging is its progressive nature and the absence of a cure.

In my father’s case, he battled this condition for a decade. Despite its relentless progression, he remained resilient and courageous. Until his final day, he persevered with physical and language therapy, striving to keep his quality of life.

Witnessing his journey was like watching a mighty tree gradually lose its leaves, as ataxia slowly stripped away pieces of my dad’s independence. Mundane tasks became monumental challenges and eventually, they became unattainable.

I remember the frustration in his eyes as he struggled to perform simple tasks that were once second nature to him like buttoning his shirt, tying his shoelaces or lifting a cup to his lips. I still remember his silent cry battling with the fear of losing himself, his sorrow realizing that he would no longer be the same, and that the future he once imagined was filled with uncertainty.

After three years of not hearing his voice, I realized I had forgotten how he sounded. We lost the depth of our conversations, his insights on serious matters, and his guidance for the future. Yet, we discovered alternative means of connection. Our conversation transcended words alone. I discovered the tone of his eyes, the comfort of his touch, and the guidance of his gentle hand. Crafting this new mode of communication demanded patience, effort, and occasional frustration, but the bond it forged went beyond words. Verbal communication seemed overrated as we embraced the power of nonverbal cues. Nothing matched the impact of witnessing my dad’s eyes widen with happiness and certainty.

This publication is an attempt to record the experience of my dad living with ataxia. Through gathering memories and reflections from those close to him, my aim is to guide the reader through a transition from verbal to non-verbal communication.

04.12.2013

WOBBLING STUMBLING AND

UNDERS TANDING THE EARLY SIGNS

REFLECTIONS WITH AMPARO RIVEROS,

SOFIA LUGO, GINA FORERO, MABEL MARTÍNEZ, JAQUELINE, ARAEL GUZMAN AND EMILSE.

BY CAMILA LUGO

(Daughter)

(Daughter)

Can you describe the symptoms and initial signs of Nestor's condition?

Nestor started feeling dizzy, like the floor was moving. He also had headaches and back pain. So, we started looking into it. First, he saw a neurologist who treated him for a spine surgery at levels E3, L4, and L5. At first, the doctors in Colombia didn't find anything wrong. They thought it might be vertigo. Later, Nestor talked to his niece who is a physical therapist. She thought it might be a muscle problem. So, he went to see an orthopedist who ruled out muscle or bone issues. Finally, they thought it might be something with his brain, and after going to a neurologist, they found out there was something wrong with his cerebellum.

I can’t really remember when my dad’s symptoms started. But what I do remember is that he had really bad pain in his back from a surgery he had years ago. He had a herniated disc in his spine from an accident when he was young. Along with constant headaches, he started having really, really bad ones that nothing could ease—not pills, treatments, or even ice on his head. So, he went through a lot of medical procedures, even going to the Mayo Clinic because no one in Colombia could figure out what was wrong. Then he started losing his balance, stuttering, and his legs got weak, making him walk tipsy.

My dad started having really bad headaches that wouldn't go away and made him feel clumsy. He couldn't walk straight and felt off balance, like he was clumsy. He had a lot of falls and bumps, and sometimes it seemed like he was drunk.

AMPARO RIVEROS (Wife)

SOFIA LUGO

CAMILA LUGO

How did you feel when you saw the disease progress? Do you remember how he felt?

When Nestor was diagnosed, it was devastating to learn that there was no cure for his illness. He had hoped that medicine and technology could help. It was tough for me to accept, but I felt I needed to be strong for him. However, as he lost his ability to move, I often felt frustrated and pained to see him becoming so limited.

I went through long stretches without seeing my dad. For instance, during the first year when he started losing his balance and needed a cane, and when he began stuttering, I was away because he lived in Canada. When I saw him again, his deterioration shocked me. Before I left, he was independent, but a year later, he couldn't do things on his own anymore, which alarmed me. The next three years, while I finished high school in Colombia, were tough. Our dynamic changed drastically. He used to be very independent, but now he needed our help. It was hard to adjust because sometimes we thought he was just being lazy. As a family, it was challenging to adapt to constantly looking out for him. We had to assist him with basic tasks like going downstairs, putting on his shoes, or tying his tie. We had many arguments at home because of this.

When I moved to London and saw him again, he had completely lost his independence, and his communication was getting worse. Each time I saw him, he seemed more restricted, depressed, and reliant on others.

Initially, I remained optimistic because his symptoms were subtle, and I couldn't imagine a future where he'd lose all mobility. It felt like watching a movie with a known ending, but it was unfolding slowly. It didn't seem real to me at first, but the decline was slow but relentless. I accompanied him to therapies, drove his car, and helped him get out of bed. I became like a walking cane for him, always walking ahead with his hand on my shoulder. He cried a lot, just like a child, and it scared me. He had many bouts of depression. But despite all that, he never lost hope that he could slow down the deterioration of his condition. He stayed strong and resilient through every stage.

Nestor learned to be brave and flexible.

He focused on what he was good at, used his talents, and became more open-minded and empathetic.

This made things less stressful and frustrating for him.

(NEUROLOGIST)

You have to adapt; there is no other way. Embracing life is essential; otherwise, you'll encounter numerous challenges. Ataxia doesn't improve, but it's not the end of life. You simply need to adjust and find ways to live with it. Building confidence is crucial for maintaining good mental health, which in turn influences your body's responses—both strengths and weaknesses.

OLGA LUCIA

How did ataxia change Nestor's life and daily routines? What were the biggest challenges?

Losing his balance and mobility was really frustrating for Nestor, especially since he used to be so active at work. It was hard for him to adapt, but we learned to ask for help and seek out resources like walkers and wheelchairs. One of the things that upset him the most was not being able to write anymore. Even though therapists said he could relearn, he felt defeated and didn't want to try. Eventually, he couldn't move his arms, and the last thing he stopped doing was eating. At each stage, we had to adjust and find ways to cope emotionally and physically.

As his wife, my faith helped me look for possibilities beyond his limitations. It allowed us to do things we never thought possible, like traveling with a wheelchair, learning to feed him, and developing a non-verbal way to communicate using eye movements, head nods, and gestures. Tough situations taught us skills beyond frustration, and it's important to have empathy and humility to accept and understand each other's needs.

At first, simple tasks like walking, going downstairs, getting in the car, or sitting down became hard for him. Then it got more challenging—he needed help going to the bathroom, getting dressed, and bathing. As time went on, he became completely dependent on someone else. He lost the freedom to decide when and how to do things, which was really tough for him. He always needed someone to watch over him to make sure he stayed safe.

When I moved to London and saw him again, he had completely lost his independence, and his communication was getting worse. Each time I saw him, he seemed more restricted, depressed, and reliant on others.

Communication was the hardest part because there came a point where we couldn't understand what my dad needed. His voice faded, and eventually, he stopped talking altogether. It took time and effort to anticipate his needs and understand his discomforts. We developed a new way to communicate using his eyes, fingers, and touch to tell us what he needed.condition. He stayed strong and resilient through every stage.

ARAEL (PHYSICAL THERAPHIST)

What were some of the goals you set for therapy sessions, and how did you track progress towards those goals?

The goal of physical therapy was to help him become more independent by boosting his muscle strength and dexterity. We aimed for him to rely less on others and do more on his own.

Every day, we closely tracked his progress. I checked how he was doing compared to yesterday. If he showed a bit more strength today, I stepped up the exercises and added new ones. Each small victory led to creating tougher routines for the next day, gradually making his muscles stronger and stronger.

The therapies aimed to make his body stronger every day so he could do things on his own. We wanted him to get back to doing all the things he loved, like reading, working, being with friends, and traveling. But even though we stayed positive, the therapies didn't show results quickly. Sometimes he was really into the therapies and worked hard, but other times he felt like they weren't helping and got discouraged.

The physical therapies were the ones we did most often. They included things like using the elliptical machine, walking on grass without shoes, and doing exercises with a big ball. We worked closely with him, changing the routines when he didn't feel like doing them, to make sure he felt comfortable and supported all along.

MABEL (SPEECH THERAPIST)

The therapy sessions with Don Nestor aimed to enhance his speech skills, improve overall communication, and, crucially, maintain his ability to eat orally without the need for a feeding tube. Additionally, focus was placed on enhancing executive functions and learning processes to facilitate communication and information retention.

Progress towards these objectives was assessed daily based on Nestor's achievements in therapy. We monitored his ability to eat, articulate words, the quality of his voice, and his overall articulation. These advancements became evident over time, allowing us to gauge his progress effectively. Informal meetings with Luz Amparo provided an opportunity to review and adjust our approach as needed, especially if Nestor experienced health issues impacting his communication abilities. Despite challenges such as health setbacks, Nestor consistently worked towards achieving effective communication and functional feeding during his therapy sessions.

GINA FORERO (CARE GIVER/NURSE)

How you communicated and how it changed as time passed. Did you have a way to communicate when he couldn't speak anymore?

At first, we tried to communicate verbally, but it got harder as time went on. So, we used our hands, fingers, eyes, eyebrows, and head movements. The last thing he learned was to raise his eyebrows to show understanding. We also used a device called DynaBox, which helped him learn to speak using his eyes. That was really helpful at the time.

When my dad started losing his ability to speak, he learned to use his body to communicate. He would open his eyes, point, and when he had a bit more movement, he used his hands. He was really expressive with his eyes, so that became our main way of understanding him. We could tell what he wanted by the expressions on his face. If he didn't want to do something, he'd just close his eyes and look tired. But if he was interested in something, he'd open his eyes wide and try to say things like "I want this," "I like it," or "it makes me happy." We got better at understanding him over time. Then we found a screen where he could write with his eyes, and the computer would read out what he wrote. That was a big step because we could communicate with more structured words and sentences.

We adapted and developed a new way to communicate. He used the parts of his body that he could move easily to convey his desires. For instance, he would point with his finger to indicate what he wanted, or respond to questions by opening and closing his eyes and moving his eyebrows. Additionally, he would raise his thumb to signal approval or disapproval.

Initially, it was challenging because his communication was limited to simple gestures. However, over the years, we learned to establish deeper forms of communication, even without words. My mom became adept at understanding my dad's needs without him having to speak. As time passed, the nurses, therapists, my sister, and I also became proficient in this non-verbal communication.

I set up a communication board with some magnetic letters and we could communicate there but also with specific yes and no answers. Other times I could guess some aspects of him, at the end he could tell me words and I could interpret some actions about it and the way to communicate was with gestures, with his eyes in response if not with his head.

MABEL

Eyes talk.

(GF)

I had great communication with Don Nestor, even though he couldn't speak anymore. Sometimes, when I asked him questions, he would respond with a few words or gestures, and I understood him perfectly. For instance, if I asked, "Don Nestor, what music do you want to listen to?" he would raise his eyebrow. Then, I'd tell him, "Close your eyes if you want a different song," and if he wanted the same, he'd keep them open.

We learned to listen with our eyes, as well as our ears.

We used gestures to communicate. He would raise his hand with his finger up to say "Yes, that's fine," and lower it to say "No," or he would move his eyes. I would ask him, "Okay, Nestor, blink your eyes for yes, or don't blink for no," or he would smile. For instance, I'd ask, "Nestor, do you want red wine?" and he'd respond according to his preference. Of course, he always said yes to cheese with a sandwich; it was his favorite treat. Sometimes, just by looking at him, you could tell what he wanted or needed. When he was happy, he would widen his eyes, and when he was upset, he would furrow his brow. Communication became easier each day, allowing us to focus on him.

Can you share any success stories or memorable moments from your work with Nestor?

As a speech therapist, witnessing his effective chewing and swallowing brought me immense satisfaction. His newfound ability to request specific foods, particularly his love for lollipops and fruits, was endearing. During therapy sessions, he expressed his desires loudly and clearly. Whether speaking or singing traditional Santander songs like "bamcucos" and "torbellinos," or reminiscing about his hometown, San Vicente de Chucurí, his communication was filled with meaning and emotion, especially when discussing topics like football. Also, ensuring his ability to eat regularly was a significant milestone for me. Subsequently, when the Dynabox communication aid was introduced, it opened up new avenues for communication. We shared many laughs as we experimented with the device, using it to create word lists, organize thoughts, and ask questions. Despite the challenges, therapy sessions became incredibly enjoyable, filled with laughter and friendship.

How you adapt to his way of communication?

I created a communication board using magnetic letters, allowing us to interact using both written messages and simple yes or no responses. Sometimes, I could understand certain aspects of his thoughts without words. Eventually, he began to share words with me, and I learned to interpret his actions and responses, often communicated through gestures, eye movements, or nods of his head.

MABEL (SPEECH THERAPIST)

U RE

SSS C P

ADAP

TING TO CHAN GE

When dad's speech started to slur, it began as a slighty difficulty in pronouncing certain syllables. There were long silences between words, and sometimes they would blur together.

This marked the beginning of a new, challenging chapter. His whole life, he was known for his firm speech, clear words, and independence. However, he began to struggle to articulate his thoughts.

Adapting to this new way of communication required patience, compassion, and intense therapy. After that long journey, he was remembered for his silent courage and resilient strength.

On many occasions I listened to him practice pronouncing his name, trying to train his mouth to speak without stammering and with clarity.

(CL)

lluuuuu ggg o o

ne st ooor nestor nnn ee st oor lu go lugo go lu ne st or nestor lu goo lugo ooo neeest

Adapting to change was a long journey with ups and downs and many moments of hoplessness.

There was a time when my dad constantly cried.

Feeling betrayed by his body and fearing he was losing the man that he was.

(CL)

Allowing oneself cry is not a sign of weakness; rather, it is an important step towards. emotional healing.

Through tears, individuals can confront the reality of their situation, acknowledge their feelings, and begin to process the profound changes that ataxia brings to their lives. This act of vulnerability helps to dismantle the barriers of denial and resistance, paving the way for acceptance and adaptation.

Moreover, crying fosters emotional resilience. It allows individuals to express their grief and sorrow, which are essential components of coping with loss. The loss may not only pertain to physical abilities but also to the life they once envisioned for themselves. By embracing their emotions, individuals can gradually rebuild their sense of self and find new ways to navigate their lives.

I CRIED THAT I DIDN´T WANT TO NOT BE THE MAN I WAS, I CRIED THAT I DIDN´T WANT TO NOT BE THE MAN I WAS,

I CRI D THAT I DIDN WANT TO NOT BE THE MAN I WAS,

I CR ED THAT I DIDN´T WAN TO NOT BE THE MA I WAS,

I C IED THAT I DIDN´T WANT TO N T BE THE MAN I W

I CRIED THAT I D ´T WANT TO NO BE TH MAN I

CRIED THAT

I C ED HAT I DI N´T WANT TO BE TH MAN I WAS,

I CRI D T AT I DID ´T W NT NOT BE T E MA I WAS, I CRI THAT I DI N´T WAN TO NOT BE THE MA WAS, I CR D THAT I D DN´T WA T

CRIED

WAS, AND NOT BE ABLE TO DO EVERYTHING I USED TO WAS, AND NOT BE ABLE TO DO EVERYTHING I USED TO WAS, AND NOT B ABLE TO DO EVERYTHING I USED TO WAS, AND NOT BE ABLE TO DO E RYTHING I US D T W S, AND NO BE AB E TO DO VE YTH NG I USED TO I WAS A NOT BE ABLE TO DO EVERYTHING I U ED TO AS, AND NO B ABLE DO EV RYT I USED TO

WAS, AND BE ABLE TO DO EVERY HING I USED TO WAS, AND NOT ABLE TO EV RYTHING I USED O WAS, A D N T BE ABLE TO DO E ERYT ING I US D T WAS, AND NO BE ABLE TO DO EVE YTHING I US D S, AND NOT BE T D EVERYTH NG I USED TO WAS, AND O B AB TO DO V RYT I USED TO AS, AND NOT B ABLE TO DO EV RYTHING I USED TO

For us as a family and care givers, witnessing and supporting my dad's moments of vulnerability was incredibly important.

Providing a safe space for him to express his emotions strengthened our bond and reinforced our sense of community and support.

It reminded him that he was not alone in the journey, fostering a shared strength that was crucial for facing the challenges ahead.

It helped our entire family move forward with resilience and hope.

(CL)

(NL)

THROUGH PERSEVERANCE AND A STRONG SUPPORT NETWORK, I HAVE DEVELOPED

RESILIENCE TO FOCUS ON,

MY ABILITIES

RATHER THAN LIMITATIONS, AND CULTIVATE

PATIENCE WITH MYSELF

WHILE I

ADAPT TO MY NEW REALITY.

(SL) Are you okay?

(SL) Do you need something? (SL) Dad?

(SL) Take a deep breath and speak loud.

(SL) What do you need?

(SL)I don't understand!

(SL) I'm sorry! I'm trying to undestand what you're trying to say.

(SL) Do you want water?

(SL) Do you want to go to the bathroom?

(SL) Do you want to change the movie?

(SL) Let's not despair. I need you to speak clearly to me.

ii mm i'm hungry yy r gn fo oo od !!! ii wa nnn tt f ood ea tt ssoo mm th ii ng to eat 12.08.2018

(SL) We got there eventually!

(SL) Oh ok! You want food!

(AR) Good morning love, how are you feeling today?

(AR) Sorry to hear that, do you want to rest a bit? or should we try some of our excercises?

´ d

(AR) It's okay.

(AR) Listen to your body and give yourself the time and space you need to recharge.

(AR) Resting doesn’t mean giving up or being weak; it means taking care of yourself in a different way.

i want to get better i want to keep trying k e p t rying r y i n g w n t g b r want to

B

D D D S S S O O O O O O N N N N W W W W R R R E E E E Y Y Y

Words became harder to use, and nonverbal cues grew even more important.

His eyes, were powerful communicators. A twinkle of joy, a tear of frustration, or a gaze of determination could express complex emotions and thoughts.

Even the slightest movement of his hands or fingers provided important cues about his needs and desires.

A gentle squeeze of his hand, a reassuring pat on the shoulder, or a comforting hug could communicate support and empathy.

As his family, we learned to interpret these signals to understand and respond to his needs.

e o o e e e e e e h h h h a a o s s v v v 21.04.2020 a a a a a a a s h h h h i i i i i i i i i i i i i i i i i i i i i i i i i i i i i i i i i i h a v e h a v e h a v e h a h a v e h a v e h a v e i i i i i i ii so s o so so so o s o s s e e e e e e e e e v v v v v v v v v o o o o o o o a a a a a u u u u u u u u u u a a a a a a a e e e

(SL)

One of my most treasured memories is from January 2024 when we took my dad to the beach. We wheeled him to the shore, and with the help of my mom and boyfriend, we lowered him into the water. It had been a while since he'd seen the sea.

As he felt the sand and waves, his eyes lit up with happiness. He smiled and we knew he was happy to feel the sun and feel the ocean again. We didn't know if it would be his last time there, but I'll always cherish that moment of joy we shared.

Dad,

are you enjoying the ocean?

Human touch helped fill the gap caused by impaired speech and movement.

It acts as a strong form of nonverbal communication, providing comfort and connection when words are hard to find. A simple touch can show empathy, lessen feelings of loneliness, and remind the person of their worth during their struggle.

Physical touch releases oxytocin, the "love hormone," which helps create feelings of calm and connection. The warmth of another’s touch can be a source of hope and love, making the tough journey a bit easier.

You have fought so bravely. I am so proud of you. This journey has been hard, but you have faced it with such strength and grace.

08.04.2024.

ACKNOWLEDGEMENTS

Special thanks the contributors: Amparo Riveros, Sofia Lugo, Gina Forero, Jaqueline, Arael Guzman, Emilse and Mabel.

Shivani, Pia and Matthew. Thank you for all the support.

TE LLEVARÉ

CONMIGO

SIEMPRE.

Y HONRARÉ,

TU LEGADO

REFLEJANDO, TU BUEN

EJEMPLO.