Living with Dystonia

Living with dystonia

Recently, there has been a greater push to have disability visible in the media and represented across the board in politics, entertainment, and the workplace. This is fantastic and we applaud this, but the types of disability we see in these spaces are usually the more widely known ones, such as Down’s Syndrome, Autism Spectrum Disorder and Multiple Sclerosis.

There are many lesser-known or hidden conditions, however, that can have a massive impact on people’s lives but are rarely heard about. One such disorder is dystonia.

Primary dystonia affects around 70,000 Australians, but this statistic does not account for secondary dystonia that happens as a result of another neurological condition.

In this article, we’re going to shed some light on dystonia.

We’ll cover:

What is dystonia?

What types of dystonia are there?
What causes dystonia?
What are the symptoms of dystonia?
What treatments are available for dystonia?
What lifestyle changes can you make to help you live with dystonia?

Let’s dive in.

What is dystonia?

Dystonia is a neurological condition where damage to or malfunction of the basal ganglia or other areas of the brain that control movement result in involuntary muscle spasms or contractions and/or tremor.

These contractions can twist the body into uncomfortable positions and hold it there for a period of time, which can cause pain, or they can come and go intermittently.

Dystonia can come on at any age and can either stabilise or progress.

What types of dystonia are there?

There are five main types of dystonia: focal, segmental, generalised, multifocal and hemidystonia.

Focal dystonia affects one part of the body, such as the neck or vocal cords.

Segmental dystonia affects two or more parts of the body that are adjacent to each other.

Generalised dystonia can affect most or all of the body.

Multifocal dystonia affects two or more parts that are not related or adjacent.

Hemidystonia affects the arm and the leg on one side of the body.

What causes dystonia?

There is no one cause for dystonia. It can be genetic, a result of environmental factors, a result of other neurological conditions or trauma, or it can be considered idiopathic, meaning the cause is unknown.

Focal dystonia has been shown to be more common in people in their 40s and 50s and is three times more common in women than men.

Dystonia can be classified as primary and secondary, as well as idiopathic, acquired or genetic.

  • Primary dystonia is where the dystonia is the only symptom, and there is no secondary cause for the condition. It is usually idiopathic (meaning it has no known cause) but can be genetic if it comes on early in life.
  • Secondary (acquired) dystonia is where the condition is acquired from secondary causes, such as exposure to environmental toxins, certain medications, or other neurological conditions, such as Parkinson’s disease, brain tumours, stroke, multiple sclerosis, etc.

What are the symptoms of dystonia?

Symptoms can vary from person to person but usually include some sort of uncontrollable twisting, repetitive movements, or tremor. These can come on sporadically or stay for longer periods.

Symptoms commonly affect the neck (cervical dystonia), eyelids (blepharospasms), the tongue or jaw (oromandibular dystonia), the vocal cords or voice box (laryngeal dystonia) and the hand or leg.

Some forms, especially in the hands, come on after repetitive actions like writing or playing an instrument.

The condition can steadily worsen, or it can stabilise at an early stage and go no further. Each case is different.

Some signs include:

  • A twisting of the head to one side, sometimes with the shoulder pulling up too.
  • One foot either dragging or turning after walking.
  • Eye spasms causing rapid and repetitive blinking.
  • Slurred speech or trouble with chewing or swallowing.
  • A tight or whispery voice.
  • Handwriting becoming worse after a period of writing.
  • Tremor

What treatments are available for dystonia?

There is no cure for dystonia, but there are treatments to reduce the symptoms and help you to live alongside the condition.

Botulinum toxin (commonly known as Botox) injections are used to ease and decrease muscle spasms. The neurotransmitter acetylcholine is largely responsible for muscle contractions. Botox works by blocking its release so that the muscles can’t move as freely.

Certain pharmaceutical drugs can also help block acetylcholine and treat other symptoms of dystonia.

Deep Brain Stimulation (DBS) involves implanting electrodes into certain areas of the brain where movement is controlled. A pulse generator sends an electric pulse to this area to block the symptom-causing signals that the brain is sending out.

Surgery is sometimes an option to deactivate the area in the brain or muscle that sends or receives the impulses that cause the erratic muscle contractions.

What lifestyle changes can you make to help you live with dystonia?

Like any diagnosis that will ultimately be chronic, a dystonia diagnosis can be distressing. There are things you can do to help yourself and to better thrive alongside your condition.

Do your homework

The more informed you are about your condition, the better decisions you can make for your lifestyle and treatment.

This goes hand in hand with having the support of a strong medical team behind you, but do your own research first, so you have the power to ask the right questions and advocate for yourself.

Get exercise

Exercise not only stretches out tight muscles, builds strength and flexibility, and releases endorphins but it also relieves stress, which can worsen dystonia symptoms.

You can work with a physiotherapist if you struggle to exercise on your own.

Use heat or cold packs

Sometimes using one of these on stiff or tight muscles can relieve some pain caused by contractions.

Manage your stress levels

Stress or fatigue has been shown to bring on or worsen symptoms of dystonia, so developing ways to reduce your stress can do a lot of good.

Yoga, meditation, deep breathing, going for walks in nature, reading a book or having a bath can all help to take the edge off.

Keep a treatment journal

Sometimes treatment will be a case of trial and error. Keeping a journal of the

treatments that were effective and any triggers you notice can help your doctor best support you.

Writing down any emotions you’re feeling can also be cathartic and help you cope better with the condition.

Rely on your support system

If friends and family want to support you, let them. People often try to get through things on their own, either because they don’t want to burden others, are too proud to ask for help, or are scared to be vulnerable.

But letting those who love you help will not only make a difference to you but will allow them to feel useful and appreciated too.

Get mental health help if you need it

Dealing with any diagnosis is hard but a chronic one can be tougher and may lead to depression or anxiety.

If you feel yourself going down that road, be sure to consult with a mental health professional so you can work through the process and learn tools to cope.

Get comfortable with awkwardness

Inadvertent tics and twitches are sure to cause you some awkwardness in social situations.

Instead of trying to hide them, why not embrace them and be open about it? If you don’t treat it as the most important thing in your life, others will follow suit.

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