Parkinson’s disease , also known as PD, has a certain taboo associated with it. A large part of this is due to a lack of understanding of the disease. Parkinson’s is a neurodegenerative disorder that affects many facets of a person’s life.
Due to the secrecy that surrounds it and the fact that people are not willing to talk about this disease anymore, either for fear of ridicule or social isolation, there are many effects or aspects of Parkinson’s disease that are considered taboo, while, for On the other hand, they are just a result of the disease itself.
What is Parkinson’s disease (PD)?
Parkinson’s disease (PD) is part of a group of diseases that affect motor function or movement . It is a neurological condition that is caused by damage to a part of the brain called the basal ganglia. As more than 80% of dopaminergic neurons (related to dopamine activity) are damaged, dopaminergic neurotransmission in these basal ganglia is reduced. Parkinson’s disease is therefore the product of altered dopamine neurotransmission .
In other words, the person suffering from this disease slowly loses control of their movements . For this reason, they suffer from tremors (the most frequent symptom), muscular rigidity, slowness of movement and balance problems.
Although the causes are not clear , it is thought that there is probably a genetic predisposition.
eye! Parkinson’s is not parkinsonism
There are other diseases that affect the brain (dementia, Wilson’s disease, tumors, stroke, encephalitis, etc…) and certain drugs that can cause symptoms similar to PD as an adverse effect . That is, we are talking about similar symptoms, but with different causes. In that case, we speak of parkinsonism . The difference is important because, depending on the underlying cause, we may be talking about a curable condition or a series of different treatments.
Is there a taboo associated with Parkinson’s disease?
Out of fear and shame , many patients, especially the younger ones who work, make an effort to keep their illness hidden. They fear losing their job, not being able to support their family and live independently, and dying. The shame arises from the fact that the symptoms of PD are difficult to hide, especially in the early stages, and can even be socially inappropriate for people.
The lack of information among the general public aggravates the problem . The shame and embarrassment associated with Parkinson’s disease are rarely addressed in clinical settings or investigated in neuroscientific research. The incidence of shame and humiliation in people with Parkinson’s disease is unknown, and there is no precise method to detect and measure it.
What are the taboos associated with Parkinson’s disease?
Shame and humiliation are two self-conscious negative feelings linked to painful situations. In Parkinson’s disease, this can be due to a variety of reasons, such as the symptoms of the disease, particularly the overt motor symptoms, but also the non-motor ones; PD-induced increased physical dependence and need for assistance; and a degraded body image . The effects of shame related to Parkinson’s can have a significant effect on health and quality of life, but have not been thoroughly investigated. Therefore, in people with Parkinson’s disease, shame and humiliation should be studied and treated aggressively.
Here are some of the taboo topics and how you can talk about them:
- Urinary problems and infections
People diagnosed with Parkinson’s have to deal with serious urinary problems. Urinary urgency is one of the most common problems among patients with PD. It is the need to urinate frequently and urgently, even though the bladder is not full. Nocturia is the condition of regularly getting up in the middle of the night to urinate. If you experience these or other urinary changes, see your doctor to make sure the problem is not caused by PE, but may be caused by other problems, such as an infection in that region or a urinary tract infection (UTI), a swollen prostate or other medical condition.
- Difficulty in impulse control
Although dopamine agonists and monoamine oxidase (MAO) inhibitors have improved the lives of millions of people, scientists suggest that individuals with PD who take them may develop impulse control disorders , such as excessive gambling, food or sexual behavior. If you think you or a loved one has impulsive behavior disorder, try to spot a pattern of unhealthy behaviors and talk to your doctor about it. Medications are often effective in treating these disorders.
- thoughts of suicide
Study data tells us that up to 30% of people with Parkinson’s disease have considered suicide . The feeling of helplessness can appear at any time of the disease. If you feel stuck and your feelings have progressed to suicidal thoughts, there are resources available to help you. Suicidal thoughts can be triggered by PD symptoms such as depression and pain. Keep in mind, however, that not everyone who has suicidal thoughts is depressed . A good team health care strategy that includes a social worker, therapist, psychologist or counselor is very beneficial for people with Parkinson’s disease.
- loss of libido
Sexual dysfunction is common in both men and women with Parkinson’s disease. Patients, spouses, and health professionals may feel uncomfortable talking about sex , so the topic remains ignored. Due to the loss of dopamine, Parkinson’s disease can induce sexual dysfunction. In addition, some medications, such as antidepressants and other drugs, can also cause sexual dysfunction. It should be noted that most PD medications are not related to impotence or loss of libido . Sexual dysfunction is caused by Parkinson’s disease, and it all starts with a conversation with your doctor. So the next time you visit your doctor, maybe you can bring a written note explaining your problems.
- Caregiver problems and burnout
When caring for someone with a chronic condition like Parkinson’s disease, stress can be a part of many people’s lives. On the other hand, some caregivers may have a hard time accepting that they need help . Caregivers and their families should manage caregiver burnout as soon as warning signs emerge, such as anxiety, anger followed by guilt, resentment toward family members, and despair. Learning your limitations as a caregiver and finding a support network that works for you is a challenge in itself. You can often work with your loved one’s care team or a social worker to locate additional help and services that are right for you.
References:
‌Changkakati C (2020). Is there taboo associated with Parkinson’s Disease? Imphal Free Press. https://www.ifp.co.in/1132/is-there-taboo-associated-with-parkinsons-disease
Fleury, V., Catalano Chiuvé, S., Forjaz, M. J., Di Marco, M., Messe, M., Debove, I., Angulo, J., Hariz, G.-M., Burkhard, P. R., Martinez-Martin, P., Rodriguez-Blazquez, C., & Krack, P. (2020). Embarrassment and Shame in People With Parkinson’s Disease: A New Tool for Self-Assessment. Frontiers in Neurology, 11. https://doi.org/10.3389/fneur.2020.00779
‌Freepik(s.f.). Hand drawn flat design parkinson illustration [Free Vector]. Freepik. https://www.freepik.com/freepik
Taboos and information: Parkinson’s and preparing for end of life (2022). ‌European Parkinson’s Disease Association. https://www.epda.eu.com/latest/news/taboos-and-information-parkinsons-and-preparing-for-end-of-life/?utm_source=EPDA+News_News&utm_medium=Facebook&utm_campaign=Information+%26+Education
