Patient Story: Living with Dystonia

Recently, an article highlighted one man’s life journey after being diagnosed with rare cervical dystonia.

Dystonia

Dystonia is a chronic movement disorder, existing in the same family as the more well-known Parkinson’s disease. Symptoms of dystonia are defined by involuntary muscle contractions which may worsen with voluntary activity. Sometimes intermittent, sometimes painful, and sometimes sustained, these contractions may resemble tremors and cause the body to twist into unnatural, repetitive postures and/or movements.

Three common classifications include focal dystonia, generalized dystonia, and segmental dystonia:

  1. Focal dystonia means one localized part of the body is affected. For example, in cervical dystonia, contractions in the neck muscles pull the head forward or backward.
  2. Generalized dystonia impacts most or all of the body. DYTI dystonia is a rare form of generalized dystonia; it progresses from the limbs and can eventually lead to severe disability.
  3. Segmental dystonia affects two or more neighboring parts of the body. With cranio-facial dystonia (Meige syndrome), any areas above the neck (eyes, mouth, tongue, etc.) can show symptoms of dystonia.

While there are a number of additional classifications for dystonia, even within the above categories, symptoms of dystonia and onset vary person to person.

In the United States and Canada, alone, cases of dystonia number into the 300,000’s. Dystonia is not limited to one sex, age group, or background.

Cause:

It’s hard to specifically pin down one answer to “what causes dystonia.” Some people inherit dystonia (hereditary), while others develop contractions as a symptom of another disorder (acquired). What’s surprising is not the variance in what causes dystonia, but in the unknown quality of its origins. Though researchers believe dystonia begins with abnormalities in the brain’s ability to handle messages regarding movement, why some people develop these abnormalities has yet to be determined. When it is completely unclear as to what causes dystonia, the condition is referred to as idiopathic dystonia.

Symptoms:

Beyond the contractions, symptoms of dystonia run the gambit. They range in location, severity, and frequency, but some symptoms of dystonia include:

  • Foot cramps
  • Neck pulling
  • Eyelid spasms
  • Difficulties speaking
  • Worsening handwriting

Tom S. and His Journey with Dystonia

In 2001, busy master’s student Tom S. started experiencing muscle contractions in his neck. He chalked it up to being some sort of musculoskeletal issue and therefore underwent neck adjustments and extension tracking from a chiropractor. However, his symptoms only increased in severity, leading him to seek out further medical care.

Tom S. met with massage therapists, sports medicine doctors, physical therapists, and other medical professionals trying to find answers for why he was only getting worse. It had gotten to the point where his neck was moving involuntarily, causing severe pain.

As a result, he started doing his own research into his condition. After countless hours of researching, he found cervical dystonia. He discovered that nearly all of his symptoms matched the disease, thus convincing him this was his disease. Tom S. then reached out to a movement disorder neurologist, who gave him his official diagnosis.

Unfortunately for Tom, he was diagnosed late, which meant his symptoms were already extreme. Unable to care for himself any longer and in constant pain, he dropped out of school to move back home. This decision was a difficult one for him. Previously, he was in the prime of his life and working towards a certain future, competing in various sports, and even working as an entrepreneur. He struggled with having his independence stripped from him so suddenly and learning to live life with disabilities.

Readjusting

At home, Tom S. needed help doing simple tasks, including cooking, cleaning, and doing laundry. He only had one usable hand, as the other one was needed to support his head and neck. Most days were spent lying in bed, which then led to him developing scoliosis from the position he was forced to be in for such long periods of time. In addition to his physical health, his mental health started to decline as well. He found himself turning to unhealthy habits such as eating junk food, drinking excessively, and losing motivation to do nearly anything. At this point in his life, Tom felt completely alone and trapped not knowing what steps he could take to help himself.

A Shift in Perspective

A couple of years after diagnosed, Tom S. contracted a terrible stomach virus that left him ill for half a month. This illness ended up sparking him to reconsider his health, and actually helped motivate him to try to adjust his habits to be healthier and invest in himself again.

Tom S. started going on daily walks, committing to targeted stretching and an exercise program that was meant to target his dystonia symptoms. After only a little while of adjusting his routine, he found his neck pain was improving.

Inspiring Others

After Tom S. started regaining motivation and his sense of self, he decided to use his journey with dystonia to help others. He started by sharing strategies pertaining to the physical and mental health conditions that go along with dystonia, which then led him to provide advice in other areas.

Now, Tom S. is a certified professional life coach, motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteer support group leader for the Dystonia Medical Research Foundation (DMRF). In addition, he has written two books detailing his experiences living with dystonia and further writes for platforms such as the Chronic Illness Bloggers Network, The Mighty, The Wellness Universe, and Patient Worthy.

By sharing his own story and working with others on how to live with their diagnosis, Tom S. has taken his life back while also helping others through their journeys.

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