The brain is a very important organ. It controls every function in our body allowing us to think, see, feel, touch, hear, smell, and move. The brain and the spinal cord make up the central nervous system (CNS).

While we do not know exactly how it happens, scientists believe that HIV enters the CNS within the first few weeks or months after a person is infected. Afterwards, the virus can lie hidden and inactive in the brain for a long time.

Sometimes HIV can cause damage to important parts of the CNS. Damage to cells in certain sections of the brain can lead to mild cognitive (mental function) problems including difficulty concentrating, confusion, and memory loss. In some cases more severe HIV-associated dementia can occur.

Minor cognitive problems are not uncommon in HIV+ people. Usually called mild cognitive/movement disorder (MCMD), symptoms can include a slightly diminished capacity for clear thinking, trouble remembering, slowness of coordination and dexterity, and small changes in behavior or mood. This disorder is mild and can be mistaken as part of the aging process. Approximately one in every three people will experience symptoms of MCMD.

A more serious condition called HIV-associated dementia (HAD) is much rarer, especially since effective HIV drugs have become available. HAD typically occurs in less than 2% of HIV+ people and generally when the immune system is failing. HAD is not really a disease, but a mental and physical state where a person cannot function. HAD can show up suddenly as a dramatic change in behavior, thinking, and movement or MCMD can progress to HAD as the immune system declines.

People who have a CD4 cell count below 200 are at risk of developing HAD – generally the lower theCD4 count, the greater the risk. Also, having a high viral load in the blood or in the spinal fluid can be a risk factor.

The initial signs of MCMD or HAD can be very difficult to notice. If you are experiencing memory problems or your family and friends comment about your behavior or coordination, start keeping a log. Note any problems you are having with:

• Balance
• Vision
• Memory
• Concentration
• Completing tasks
• Getting lost in familiar places
• Forgetting telephone numbers
• Simple math

Bring this log to discuss with your doctor as soon as possible. Even if you feel there is an explanation for the problems, it is important to tell your doctor.

If your doctor believes you may have memory loss, he or she should refer you to a specialist such as a neurologist (a doctor that specializes in the brain), a psychiatrist, or a neuropsychologist (a doctor who specializes in testing how the mind functions) for a complete exam. This will include "neurocognitive" testing (tests of your memory and concentration, reasoning, coordination, and problem solving). These tests can detect subtle changes in your memory and provide important information.

You may also need to have a blood test called a lumbar puncture (also known as a spinal tap) to obtain a sample of spinal fluid. A needle is inserted between the bones of the spine and a small amount of fluid is removed. Lumbar punctures are done with local pain medication so there isn’t a great deal of pain. Many HIV+ patients avoid getting this procedure because it sounds frightening, but the information gained can be very helpful in making a diagnosis and selecting treatments.

Often diagnosing MCMD or HAD is a process of elimination. There are many factors other than HIV that can cause memory loss. Based on your test results, your specialist can diagnose certain conditions or problems that may be causing memory loss, such as depression, growths, fluid buildup, or an injury. HIV+ people with a weak immune system may also be at risk for opportunistic infections of the CNS such as:

• Neurosyhpilis
• Cyrptococcal Meningitis
• Toxoplasmosis (Toxo)
• Cytomegalovirus (CMV)
• Primary CNS lymphoma
• Progressive Multifocal Leucoencephalopathy (PML)

Some of these conditions may be treatable with drugs, therapy, or other medical interventions. If these conditions are ruled out, your doctor may determine that you are experiencing MCMD or HAD.

The best way to treat MCMD and HAD is to control HIV by using HIV drugs. It is important to have an open discussion with your doctor about your ability to take HIV drugs on a regular schedule. If you miss doses, your HIV may become resistant to the drugs you are taking and they will not work as well or at all.

Another factor to consider is which HIV drugs will be able to cross into the CNS and the brain. There is a natural protective barrier, known at the Blood Brain Barrier (BBB), which makes it difficult for many HIV drugs to enter the CNS. Some HIV drugs penetrate the BBB better than others. Your doctor will choose the best HIV drugs for your overall treatment.

You can also consider taking drugs to treat the individual symptoms of HAD and MCMD such as memory, behavior, and movement problems. There are medications that can help each specific area:

• Concentration problems – stimulants such as Ritalin and Adderall
• Social withdrawal – antidepressant agents such as Prozac or Zoloft
• Behavior that is abrasive or antagonizing – antipsychotic agents such as Haldol and Risperdal
• Agitation and anxiety – CNS depressants such as Valium

Research studies are ongoing to find new and better ways of treating cognitive problems. Valproic acid was shown in a small study to be beneficial in improving cognitive ability and potentially protecting brain cells. There are other studies with minocycline, coenzyme Q10, and creatinine in development.

Whether you have memory problems due to MCMD, HAD, another condition, or the normal aging process, you know how frustrating it can be to have trouble remembering. There are things that can be done without drugs that may help. The following tips can be very useful:

• Take time to learn new information – try not to remember things when you are under pressure, distracted or tired
• Use pocket-sized, voice-activated recorders or small note pads
• Put up post it notes in critical locations
• Find a system of organizing new information so that it has a connection with an idea, image, or another memory. For example, try associating someone’s name with the shape of their face or a letter of the alphabet
• Try new activities during the day when you are at your best
• Remembering involves all of the five senses. Seeing a phone number, saying it aloud and writing it down (at least seven times) increases the chance of remembering the information
• Break large tasks into smaller sections

Experiencing the symptoms of MCMD or HAD can be a puzzling and challenging time. One of the most important things you can do is ask for help. Don’t be afraid to start a conversation with your doctor, family, or close friends about any symptoms you may be experiencing that involve your thinking, behavior, or coordination. Seeking early medical help to find out what is causing the problem and starting treatment, if needed, is very important.

Taking effective HIV treatments to keep the virus under control is also necessary. However, people with CNS problems may need extra help remembering to take their medications. This is where support from family and friends may come in. Also ask your doctor and local AIDS service agencies for help. Being consistent about taking your HIV drugs may be the best way to treat, and even prevent, this challenging disorder.

Additional Reading:

Lapp, D. C. (2004). Don’t forget!: easy exercises for a better memory at any age. US: Barnes and Noble Books. ( Buy it online.)

Lapp, D. C. (1998). Maximizing your memory power: memory in the workplace. Hauppauge, NY: Barron’s Educational Series, Inc. ( Buy it online.)