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The 5 senses — sight, sound, taste, smell, and touch — are taken for granted by the average person. Most people are fortunate enough to use them daily, in all aspects of their lives. While I am one of those lucky individuals, there are some complications for me. I live with Friedreich ataxia (FA), a neurological disease that makes it difficult for the brain to respond to sensory signals. 

My vision is better than 20/20, according to a member of my neurological team. When I went for my annual visit in January of this year, I completed the vision test quickly and without much hesitation. I wear glasses for distance, but so far, FA hasn’t affected my vision the way it does for some patients.

Smell and taste aren’t impaired for me either, but I think FA normally leaves them alone anyway.

The sense of touch happens all over the body. While we have receptors on and in our skin that relay messages to the brain, in FA, the brain sometimes doesn’t know what’s what. For example, if I want to push an elevator button, my brain doesn’t tell me I can’t — it just doesn’t always know which direction I’m going. If someone or something touches my shin, I won’t know unless I’m looking.

Read more about the diagnosis of FA

Proprioception is the term for a sense of your body in space. With FA, it’s difficult to know where I am if I’m not looking. That might sound silly, but it’s true. Keeping an eye on my feet when I’m standing during physical therapy sessions helps identify when and if my legs will buckle and I have to sit down.

My neurologist once described proprioception to me during a visit when FA was still pretty new to me. I remember thinking, “That sounds ridiculous. How can my body not know where I am?” Flash forward about 13 years, and I finally get it. Often I’ll transition from my scooter to a chair, or I’ll be standing and not looking down and find myself saying, “I don’t know where I am.” That’s when I call for help. I’m always looking down when I stand up, even though my physical therapist tells me not to, but seeing my legs in action helps me feel what I’m doing whenever I’m in motion. Proprioception is a common vocabulary word in the FA community.

One of the most annoying symptoms of FA, in my opinion, is hearing loss. Background noises prevent me from relaxing in public and private environments. Noise levels, whether they’re too soft or too loud, inhibit conversations. For years I’ve been struggling with my hearing, and it continues to progress to the point where it’s just embarrassing when I have to keep asking someone to repeat themselves.

Many patients with FA visit an audiologist, but I haven’t gotten there yet. I know I should, but mentally I’m not there yet. I don’t want to rely on hearing aids at this point in my life. A doctor telling me I failed a hearing test won’t do anything to fix the damaged nerves in my ears.

Read more about the complications of FA

As frustrating as it is to have an auditory processing disorder, I try to make my peace with it as best as I can. I just prefer quiet spaces; a busy bar or restaurant is just anxiety-inducing and more trouble than it’s worth. 

Speech isn’t considered one of the main senses, but I associate it with hearing. FA causes speech problems in almost all patients; the symptoms can range from mild slowness to extreme slurred speech. I’ve been very lucky so far. My speech is only mildly affected. I am self-conscious about how I talk, but my doctor has assured me that my speech pattern is quite good compared to some other patients at the same stage in their FA journey.

However, I often struggle with volume and pitch, as well as enunciation. Nothing is more frustrating than saying something and thinking it came out clearly (because it did to me), but then the person I’m talking to says, “What?” I constantly have to repeat myself, which is beyond annoying. Although my speech itself isn’t as slurred as it could be, the daily issues I face revolve mostly around loudness. 

The 5 senses are everyday necessities to most of us that usually come naturally. FA creates so many roadblocks along the way, but the senses still manage to work to some capacity.