Finding My Voice: Struggling to Speak with Ataxia

Communication2

The human voice is the organ of the soul.

Henry Wadsworth Longfellow

Communication is an essential part of our human connection. It enables us to express our thoughts, emotions, and desires. However, for those of us in the Ataxia community, speaking can present a unique set of challenges. Some days, I wake up and my tongue feels 10 miles wide.

Understanding Ataxia:

Ataxia is a neurological disorder described by the loss of coordination, resulting in unsteady movements and difficulties with balance. Various parts of the body can be affected.  Including the limbs, head, and muscles involved in speech and swallowing. The impact on speech can vary depending on the type and severity of ataxia. 

Dysarthria

A motor speech disorder that affects the clarity and intelligibility of speech. Think of it this way, when I am talking, everything sounds normal to me. Normal might not be the best description, but it’s what I am used to. 

But it is far from normal and there is so much work involved in holding a conversation, for me. Whether it is my tongue feeling out of place, my jaw muscles not working together or the power behind the words, it is difficult. Depending on the day, I might have one or all of these issues to deal with. 

I always must watch and listen for cues from the other person or people. Ha-ha, you know how a dog will tilt their head when you are talking to them? Often, if you look closely, people will do the same thing.  It’s frustrating at times but I completely understand it!

The Frustration of Ineffective Communication:

For those of us living with ataxia, the struggle to communicate effectively can be emotionally and mentally taxing.  The frustration of being unable to express yourself clearly can lead to isolation, anxiety, and low self-esteem.  Simple everyday tasks like making a phone call, ordering food at a restaurant, or engaging in a conversation can become demoralizing.

But we cannot give up that easily.  We all have to find ways to make it work.

Adapting and Overcoming:

Despite the difficulties, those of us with ataxia are resilient and find ways to adapt and overcome their communication challenges. Here are some strategies that can help:

1. Speech Therapy: Working with a speech-language pathologist (SLP) who specializes in motor speech disorders can be invaluable. SLPs can provide exercises and techniques to improve articulation, breath control, and overall speech clarity.

2. Practice and Patience: For improved voice control, practice on a regular basis.  Remember, patience is essential.  Vocal exercises, repetition of speech sounds, and the use of slow and careful speech are all approaches that can assist people with ataxia improve their communication abilities over time.

3. Supportive Environment: Creating a supportive environment is crucial for someone struggling with ataxia.  It can make a big difference to be surrounded by understanding friends, family, and coworkers who offer support and patience.  Joining support groups or online communities, such as this website (Community Voices) can also offer emotional support and valuable insights.

4. Assistive Technology: With advancements in technology, various tools and apps have been developed to aid individuals with speech difficulties.  This assistive technology, like voice amplifiers, speech generators, and smartphone apps, can improve communication skills and streamline interactions.

5. Education and Awareness: Raising awareness about ataxia and its impact on speech can help promote understanding and empathy.  By educating the public, we can create a more inclusive society that accommodates the Ataxia community. 

Conclusion:

Living with Ataxia and struggling to speak is a challenging journey. But it is important to remember that there are ways to work with these obstacles. As dysarthria progresses, we all need to have patience as we work to communicate. With continued research and support, we can work towards a world where everyone’s voice is heard!

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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