LOTS Mental Health

The mental health aspect of LOTS fall into two categories: a person’s overall emotional well-being, and psychiatric problems that are specific to some people living with LOTS.

Emotional Health

Individual with LOTS experience a wide range of emotions, constantly learning to adjust to new developments and restrictions imposed by the disease. Affected people often express feelings of isolation, depression and frustration. An active work, social and family life is the best way to ensure emotional well-being. Just like people not struggling with a rare disease, individuals with LOTS want to engage in activities that reflect their needs, interests and functional level as well as enjoy activities that promote cognitive, physical, social and emotional well-being, and positive involvement in daily life.

Psychiatric Health

In about 30% of affected persons symptoms of manic-depression or psychotic episodes may be present. These symptoms can include hallucinations, paranoia, anxiety, manic-depression, severe depression, obsessive compulsive behavior, and disorientation. Medications used to treat depression and psychosis, such as haloperidol, thorazine, and the tricyclic antidepressants are thought to be potentially harmful to patients wtih LOTS, while others, including the benzodiazapines used for anxiety and psychosis, and tegretol which is used to treat mood disorders, are thought to be relatively safe. Patients should check with their psychiatrist and can contact the office for more information. Several cases of childbirth triggering a psychotic episode in women with LOTS have been reported. This should not deter affected women from having children, but simply requires close monitoring.

Subtle signs of cognitive problems

• Diminished memory, immediate and short-term
• Poor reasoning/judgment
• Reduced problem-solving ability
• Difficulty sequencing/organizing ideas
• Concentration problems/distractibility/short attention span
• New learning ability diminished
• Problems with numbers and mathematic computations

Seek assistance from a psychiatrist or other mental health professional when the areas of memory, thought processing and organization of thought become problematic.

Simple at home strategies to help cognitive problems:

Poor orientation to time and place

• Keep a large calendar visible
• Display a large, visible clock
• Post signs on walls stating location

Diminished memory

• Post a schedule of daily routine
• Establish routines for all activities, for example place glasses in same place daily
• Label cabinets and drawers
• Keep a memory log book, similar to a diary, in which the affected person can write down and refer back to what he/she has done with whom, and when
• Keep an appointment book for social events, doctor’s visits and other dates and occasions to be remembered

Reduced problem solving ability

• An affected person should discuss with family or caregiver possible problems that could occur at home. Solutions or steps to be followed should be anticipated, discussed, written down and kept in an obvious place
• Follow these set guidelines for problem solving.