While dystonia is a separate condition from Parkinson's, it's sometimes seen as a symptom of the disease. What does dystonia look like in Parkinson's patients?
We all know that tremors and slow movement are part of Parkinson’s, but what about contracting muscles, intense pain, and even limited mobility? For many, this is their reality and it’s caused by a disorder that is called dystonia.
Dystonia is a neurological disorder that basically causes the muscles throughout the body to contract painfully for a long period of time. The contractions are so strong and the muscles are pulled so tightly, that some body parts are twisted into abnormal positions. Think of it this way - it’s like those painful Charlie Horses that wake someone up from a deep sleep, however, with dystonia, the pain and spasm don’t go away for hours - even days!
The condition makes some muscles t twist and contract over and over again. Sometimes the spasms come on quickly, and even violently, other times it develops gradually. Dystonia can lead to stunted movements and awkward postures for the patient. It might even leave them unable to talk or eat. Typically, the contractions start in one particular area of the body like the face, vocal cords, arms or legs. It can cause fingers and toes to curl under or back and other very painful muscle contractions.
Like many diseases and disorders, the severity of dystonia is different from patient to patient. Some people only suffer from mild contractions and lead a relatively normal life without the need for intervention, medical or otherwise. Others, those who are severely affected by it, need full-time assistance because they are unable to walk, talk or perform basic daily tasks.
The Dystonia-Parkinson’s Connection
Dystonia is considered to be a disease on its own. This means that someone can develop it without having Parkinson’s. However, it’s also a very unfortunate symptom of Parkinson’s. While it doesn’t affect everybody who has Parkinson’s, it does tend to turn up in those who are diagnosed with the disease at a younger age.
Both Parkinson’s and dystonia are closely related and both affect a person’s ability to move. The terms Parkinson’s is used to describe the symptoms of tremors, rigidity, and slowness of movement - the rigidity is caused by dystonia, which affects roughly 40% of patients.
More research is needed to fully understand what actually causes dystonia - particularly in Parkinson’s patients, but there are a few things that are known. There is a relation between disorders in the same part of the brain that seems to ‘malfunction’ for Parkinson’s patients. Ultimately, no one knows why the basal ganglion - which is found deep within the brain - is affected by dystonia and Parkinson’s.
The different types of dystonia
Within the context of Parkinson’s disease, there are two main forms of dystonia:
- Primary: When dystonia is the star of the show and doesn’t share its fame with other symptoms. This form of dystonia is thought to be driven by genetics and is the most common and debilitating form. Primary dystonia can lead to generalized dystonia, this is when the legs, body, arms and more can be affected by the painful contractions
- Secondary dystonia is typically triggered (rather than developed) by a number of things such as trauma, drugs or exposure to toxins. It can also be triggered by neurological disorders like Parkinson’s or others.
Outside of Parkinson’s, there are a number of forms of dystonia as well:
- Paroxysmal dystonia: This is recognized by sudden episodes of involuntary movements
- Dope-responsive dystonia: A genetic condition that starts in childhood
- Myoclonus-dystonia: Another form that starts in childhood, but this one is known for rapid muscle movements and contractions.
- Rapid-onset dystonia Parkinson’s: As the name suggests, this is a rare form that causes a very fast development of dystonia and Parkinson's-like symptoms at the same time.
Aside from Parkinson’s and like many other neurological disorders, dystonia can show-up as a symptom of other conditions, as well as Wilson’s disease. Regardless of whether it’s tied to Parkinson’s, Wilson’s or appearing on its own, the symptoms and painful muscle contractions remain the same.
Treatments options for dystonia
Since often times, Parkinson’s and dystonia go hand in hand, so do many of the different forms of treatments. Medication such as anticholinergic drugs - they basically block the brain from messaging the muscles - can improve the tremors, muscle contractions, and weaknesses, all the things that pop up with both conditions. Unfortunately, over time, some of the medications lose their potency and the relief that some patients may experience at the beginning may wear off.
Other times, medications like muscle relaxants can help, as can botulinum toxin injections. In everyday language, those are Botox injections. In this case, they are not being used as a beauty tool - rather they are being used to temporarily paralyze the muscle and prevent contractions.
A much more invasive form of treatment - and one that is sometimes used by those with Parkinson - is deep brain stimulation. This is when brain surgery is done and doctors ‘re-wire’ the part of the brain that is causing issues.
Finally, some patients find relief from a combination of treatments paired with different forms of physical therapy including yoga, tai-chi, meditation, and specialized exercises. At the moment, there is no known research to back-up the theory that this may be beneficial to dystonia patients. Anecdotally, the results are glowing and all forms of physical therapies receive great reviews.
What’s next for patients with dystonia?
For those who have Parkinson’s and dystonia, there is still hope that they will not have to live a life filled with pain and limited movement. Researchers are working on a number of projects including improving the delivery of some medications. The goal is to find ways to make the treatment options more efficient, reliable and long-lasting. They also want to find ways to avoid medications and treatment options losing their potency for patients who might have found temporary relief. As if with many disease and disorders, the ultimate goal is to find a way to cure or prevent disorders like dystonia and Parkinson’s from developing.