ALS can alter people’s mental and emotional health, and if not checked, it will render the person struggling from it a hollow shell of their former self. This condition can make a once soulful person into an incoherent mess if it is left untreated. Half the time, people with ALS may notice changes in cognitive behavior or ability, ranging from a simple forgetting of keys to full-time dementia.
What Are The Symptoms?
Physical manifestations of ALS can vary from one person to the next, and so does changes to their mental and behavioral capacities. As to the physical symptoms of ALS, Dr. Timothy Miller, MD, Ph.D. and co-author, examined that “onset typically is gradual, occurring over a period of months, and is characterized by speech, breathing, or swallowing difficulty and weakness or loss of dexterity in one limb. Symptoms inevitably progress to involve other regions.” However, the range of potential symptoms can be:
- Behavior uncharacteristic of the person: it can range from inappropriate, embarrassing, or childish, which can be destructive in a social scenario.
- An unhealthy fixation on sweets, abandoning a balanced diet.
- Inability to conduct themselves at the table.
- Negligence to basic hygiene like bathing, grooming, wearing suitable & clean clothes.
- Rash decision making, which heavily deviates from their usual personality.
- No concern for self or others.
- Concentration loss or they cannot shift focus to another activity from the previous.
- A fixation on a single idea or activity, and tends to repeat it over and over.
- A rise in aggression.
- Fumbles while speaking and writing words in the wrong order, which end up being incoherent.
- Spelling ability declines.
- Forgets what words mean.
- Forgets what they’ll say, despite the thought beforehand.
- Cannot follow instructions
- Hard time remembering what they’ll do.
These symptoms will vary from one person to the other. For some, it may be only two on the list, while others may have most or all of the above. Mental and behavioral changes, however, can also be caused by indirect sources which may or may not relate to ALS. In a research conducted by Christopher Crockford, PhD, he and his team found that “ALS-specific cognitive functioning and behavior are significantly and negatively related to advancing disease stage. This relationship is driven most strongly by letter fluency performance, with executive dysfunction possibly also playing a role and global behavioral changes across all types of behavior that characterize behavioral variant frontotemporal dementia.”
Who Are At Risk?
People with certain factors would have a higher risk of having their mental or behavioral capacities altered. Such factors involve:
- Old age.
- Bulbar onset ALS, which is defined as ALS symptoms first appearing in facial muscles and the throat.
- Dementia running in the family.
- A history of neurological injury.
- C9orf72 gene abnormalities. (A genetic mutation that has also been linked to ALS passing on to other members of the family)
Cigarettes may also be a risk factor in becoming afflicted with ALS. Specifically, “the risk of ALS was higher for cigarette smokers compared with never smokers. Among smokers, the risk of ALS increased with decreasing age at smoking initiation, but was unrelated to smoking duration or intensity,” as concluded by Dr. Hao Wang, MD, Ph.D. and collaborators.
Note, however, that people ALS sometimes still manifest thinking or behavioral changes despite having none of the listed risk factors.
How Do You Know?
A neuropsychologist will be needed to accurately discern if the mental and behavioral symptoms shown by a person are indeed related to ALS or something else. Cognitive evaluation involves written and verbal tests, which seeks to know whether such changes are from ALS. Results then are cross-referenced with people of similar age and educational background, their prior history, to know whether the person is suffering from it and with the type of situation.
How Do You Deal With It?
Inevitably, cognitive and behavioral alterations worsen over time. As such, awareness is a big part of the battle, enabling you to plan how to cope with the condition. As with all conditions affecting mental health, matters involving life and death may need to be dealt with, such as will and testaments. Planning for the worst may be required.
When dealing with a person who has ALS, it is best to make words simpler, refraining from using longer words. Slow down your speaking pace, break an otherwise longer sentence into shorter ones, and ask questions that can be answered with a yes or no.
Lastly, if it is too much, you also can seek help. After all, you do also need to be in in the most optimal of mental states to better care for the person with ALS. To that end, there are support groups present to help you cope with him and the condition. Always remember, nobody can do anything alone.