The Mental Health Of A Person With ALS – Coping And Living Through It


ALS or Amyotrophic Lateral Sclerosis is a kind of illness that falls under the category of progressive neurodegenerative disorder. In layman’s term, the said disorder takes place when the death of the cells in the human brain as well as in the spinal cord will slowly take place. The immediate result is the muscle weakening from the brain down to the whole body. The extent of this disorder will vary on a case to case basis, but the worse effect of the said disorder can be very extreme or even devastating not just to the physical body, but also for one’s mental health.

Though this disease has to do with the human motor neurons, still, there was a study which claims that it is linked with psychiatric disorders. That is why ALS is also categorized as a condition that has to do with the spectrum. And one of which is dementia and this leads to the thinking that such a state has to do with genetics.

Because of this, when ALS takes place, the symptoms have to do with the body movement of the person. Some would have Frontotemporal Dementia that affects the person’s emotional expressions. Other than this, people with ALS have higher chances of suffering from mental health issues like anxiety and depression.


Frontotemporal Dementia

“Frontotemporal dementia (FTD) is a clinical term that encompasses the neurodegenerative diseases that selectively affect the frontal and anterior temporal lobes of the brain. FTD, which is underdiagnosed in clinical settings, presents with behavioral changes or deficits in language,” say Nigel Cairns, PhD and co-author.

People with Frontotemporal Dementia experience drastic changes in the way they communicate, think and behave. This doesn’t damage the person’s memory, but they will have difficulty in focusing and in learning. They will display short-term memory dilemma. Various indicators of this disorder include not able to do a task successfully, difficulty in making decisions, being aggressive and social skill problems.

Behavioral Variant Frontotemporal Dementia (bvFTD) is a kind of Frontotemporal Dementia that directly involves behavioral changes. It has to do with a person’s impulse control, social behavior, inappropriate actions, crudeness, and disinhibition.  Patients become impulsive and lose their social inhibitions (eg, they may shoplift); they neglect personal hygiene. Some have Klüver-Bucy syndrome, which involves emotional blunting, hypersexual activity, hyperorality (eg, bulimia, sucking and smacking of lips), and visual agnosias. Impersistence (impaired concentration), inertia, and mental rigidity appear,” adds Dr. Juebin Huang, MD, Ph.D.

People with bvFTD have higher chances of acquiring ALS. And for those people who suffer from bvFTD and eventually ALS, they will experience problems with social skills and on focusing.

Patients with ALS will be asked to fill out a questionnaire that has to do with neuropsychiatric and neurological conditions. And will be questioning the family history as well (if some members of the family have experienced the said condition as well).

Pseudobulbar Affect

Pseudobulbar Affect “PBA refers to inappropriate, involuntary, or uncontrollable laughing or crying caused by the residual effects of a nervous system disorder,” Dr. Maude McGil, Ph.D. and collaborator, explains. This is commonly experienced by people with ALS. This condition does not affect a person’s emotion, but it affects the way a person channels his feelings. There are times wherein people with such disease displays inappropriate episodes that can be extreme and difficult to handle.

Social skills of the person are affected. Thus it needs other people’s understanding as well. This condition can be controlled by medication and with firm support from their families.


Emotional Wellbeing

According to studies, people with ALS including the family members as well are at risk in developing mental health disorders like schizophrenia, autism, psychotic illnesses, suicidal tendencies, personality disorders, and obsessive-compulsive disorders. Several studies have already supported this theory. It may be alarming, but with proper education and frequent visit to the mental health professional, the condition would be managed and treated.

People with ALS, upon diagnosis, will know about their condition and would be depressed about it. They may withdraw from the public since they feel inadequate and less of a person because of their illness. So aside from their condition, they will also feel down and low.

Because of this, strong emotional support should be given to the affected person by his family and friends. Educating about the disorder is essential, as well. The patient needs the understanding and consideration of his loved ones without damaging his emotional well-being.

ALS manifests both psychiatric and neurological symptoms that can confuse people. This goes to follow that the said condition will display dysfunctions in terms of behavior, emotions, cognitive and even motivational.

ALS can not only change the affected person’s life but the people around him as well. Significant adjustments should be made to keep the person comfortable while living with this disease. Talking about ALS may be difficult, but society must be aware of this health issue. They have to understand people with this illness. Maybe they can help in easing the difficulties of a person with ALS.

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