The World Day of Movement Disorders is celebrated on November 29th. Professor Dr. Joaquim Ferreira, Neurologist and Clinical Director of CNS – Campus Neurológico, emphasized the importance of information about these diseases and access to appropriate treatment. He discussed the challenges faced by people with movement disorders, as well as their families. He also addressed some symptoms, risk factors, and advances in treatment.
What are movement disorders, and how do they affect the lives of those who have them?
Joaquim Ferreira (JF) – Movement disorders are neurological diseases that affect normal movement. They can manifest as slowed movement, as is the case with Parkinson’s Disease, or with abnormal movements such as tremors. Changes in normal movement, involuntary abnormal movements, and movement incoordination can affect a person’s ability to perform daily activities that require greater movement coordination (e.g., using utensils, writing, walking, etc.) or cause discomfort due to other symptoms that tend to worsen over time (neurodegenerative).
What do you consider the importance of World Day of Movement Disorders to be for raising awareness of this medical condition?
JF – The existence of a day that raises awareness and provides information about movement disorders allows us to explain what these diseases are and thus facilitate patients’ access to healthcare professionals who can best help them and to the most beneficial treatments. We are aware that many people, including many healthcare professionals, do not know what movement disorders are, and that is why the International Parkinson’s Disease and Movement Disorders Society proposed the creation of this day. November 29th corresponds to the birth date of Jean-Martin Charcot, a French neurologist who played a very important role in the initial characterization of these diseases.
What are the main/most common movement disorders, and what are their symptoms?
JF – The most common movement disorders are Parkinson’s Disease, essential tremor, and restless leg syndrome. People with Parkinson’s Disease may have tremors, which are abnormal movements, and also a slowing of movements. What generally alerts people to see a doctor is tremor. However, there are other complaints that can also result from Parkinson’s Disease, such as reduced arm swing, smaller handwriting, dragging of one leg, diminished sense of smell, among other symptoms. Essential tremor is also a movement disorder. It is characterized by tremors, most often of the hands, and usually begins in youth and slightly worsens with age. Tremor mainly occurs when people perform tasks with their hands, such as writing, using utensils, bringing a cup to their mouth, etc. Restless leg syndrome is characterized by discomfort in the legs, often at night (when lying down) and when people are sitting in tight spaces, and patients tend to move their legs due to this discomfort. Unfortunately, many people affected by restless leg syndrome go undiagnosed and thus do not access the highly effective available treatments. In addition to common movement disorders, there are many other diseases that also belong to this group of diseases, such as Huntington’s Disease, multiple system atrophy, progressive supranuclear palsy, muscle dystonias (examples of which are blepharospasm and cervical dystonia), tics (notably Gilles de La Tourette’s Syndrome), and Wilson’s Disease. Many of the movement disorders, due to their rarity, end up attracting less attention, not only from the general population but also from the medical and scientific community.
What are the most effective/common treatments and therapies for movement disorders?
JF – Although many movement disorders are incurable, all should be correctly diagnosed, and all can benefit from appropriate treatment. The most commonly used therapies are oral medications or through the skin (patches). However, there are more complex therapies that include subcutaneous or intestinal administration of medications and brain surgeries (deep brain stimulation surgery and focused ultrasound). The importance of patients also being treated, in an integrated manner, by other healthcare professionals, namely physiotherapists, speech therapists, occupational therapists, psychologists, nutritionists, and nurses, is increasingly recognized.
Are you aware of recent advances that have contributed to improving the quality of life for people affected by these conditions?
JF – Among movement disorders, the one that has seen the most progress in available therapies is Parkinson’s Disease. In recent years, new medications have become available that have expanded the possibilities of pharmacological treatment. Likewise, there have also been advances in brain surgical interventions that allow treating patients with Parkinson’s Disease, tremor, and tics.
How are medical and health organizations working to improve early diagnosis and treatment of movement disorders?
JF – Scientific Societies, Patient Associations, and Health Professionals are motivated to educate the entire community about these diseases. It’s important to counter the idea that these movement alterations are “normal” and merely a result of aging. Due to the Portuguese population aging, it’s anticipated that the number of people with Parkinson’s will double in 30 years. Alongside this, and due to improved healthcare, people will live longer with the disease, reaching more advanced stages. Therefore, the burden of care, both in healthcare services and families, will increase. This fact should prompt us to rethink the healthcare model. I anticipate that the care model will have to change towards increasingly intervening in the community and at home, avoiding patients coming to hospital units. Everyone, governments, scientific societies, doctors, and patient associations, together, will need to start preparing as soon as possible for this need for a change in the care model.
What are the challenges faced by people living with these conditions and their families?
JF – The biggest challenge for patients and families is ensuring access to the best care. Today, it’s recognized that the best way to treat these diseases is by accessing the most suitable treatments, but also multidisciplinary teams made up of various healthcare professionals who should work and plan treatments integrally. These teams involve neurologists, psychiatrists, physiotherapists, speech therapists, nurses, nutritionists, psychologists, and other health professionals. Unfortunately, only a minority of patients can access this multidisciplinary care.
Are there preventive measures or lifestyles that can help reduce the risk of developing Movement Disorders?
JF – Generally speaking, the best way to avoid or delay the onset of many movement disorders is by controlling vascular risk factors (for example: high blood pressure, obesity, diabetes), maintaining regular physical activity, and keeping a stimulating social and intellectual activity.
How can society offer support? How can people get involved and support World Movement Disorders Day?
JF – Society can help by spreading information about what movement disorders are and by pressuring everyone to have access to the best care, from diagnosis to treatment. Often, diseases affecting older people generate less social pressure to improve care, and we must combat this trend.
What message would you like to convey to those living with movement disorders and their families?
JF – The message I would like to convey is that they should seek information and seek help. Even when we can’t make these diseases disappear, it’s always possible to help by improving symptoms and thus, the well-being of patients and those around them. And not to remain passive! We must all “fight” together so that no patient is denied access to the best care.