AIDS TREATMENT NEWS Issue #171, March 19, 1993
Dave Gilden

Physicians tend to focus on treating their AIDS clients' diseases and know little about teaching them to cope when disabilities nevertheless occur. A large network of organizations serving disabled individuals has tremendous expertise on the subject of rehabilitation, but it has had little contact with the AIDS community.

A one-day conference on HIV-related speech, hearing, and vision loss last month at the University of California San Francisco sought to bridge this gap by bringing together the specialists who could restore quality of life and dignity to those surviving advanced AIDS.

People confronting loss of vision, hearing or speech without help or preparation can sink into deep depression and lose their interest in living. Fortunately, a systematic approach to such problems can alleviate them. The attack is three- sided, involving treatment, education, and mechanical assistance when necessary. Rehabilitative approaches have to take into account not just specific diseases, but a patient's overall health, personality and past history.

Sight

CMV retinitis is the most common source of AIDS-associated sight loss. Brain tumors arising from lymphoma and KS lesions on the eye or eyelid also impair vision in people with AIDS.

At the conference, San Francisco ophthalmologist Robert Neger, M.D., noted that due to medical advances, "the average life expectancy for someone with CMV used to be three months. Now people frequently live for two years and sometimes longer."

The introduction of ganciclovir and foscarnet has considerably improved the treatment of CMV, but the two drugs only halt the advance of the disease. Recurrence is possible as survival time grows. In addition the drugs' side affects are severe, and their daily infusion through a permanently implanted catheter is onerous.

According to Tom Gaughan of the Rose Resnick Center for the Blind and Visually Impaired, treatment issues are one important reason to join a peer support group for those with AIDS-associated sight loss. Treatment difficulties are just the first set of issues, though. Visual deprivation creates dependencies that can severely strain personal relationships. People have to develop new social as well as practical skills to ensure that their needs are met. At the same time, visually impaired individuals with AIDS generally have reduced mental and physical stamina. They may not have the strength by themselves to both cope with their loss and develop the skills needed to use the wide variety of devices available to assist those with low vision. Such devices range from specialized eyeglasses and large screen computers to canes and guide dogs.

David Custead, who completely lost his sight almost three years ago as a result of CMV said, " I've been through five life-threatening diseases. Eyesight is now a minor part of my life, but it would have been good to get help ahead of time."

It takes a particular sensitivity and knowledge to assist people with AIDS who are losing vision. Tom Gaughan has offered to assist people in finding such help. His telephone number is 415/441-1980.

Hearing

Most of the hearing loss arising from AIDS-associated ear infections is reversible, especially if treated promptly. (Note that if not treated promptly, microbes like pseudomonas and aspergillus can spread to the skull base, damaging cranial nerves with possibly fatal results). In contrast, hearing loss may also be an irreversible consequence of some antibiotics, such as amikacin and clarithromycin (both used for treating MAC). Other sources of permanent hearing loss include neurosyphilis, HIV-associated damage to the auditory nerve, and brain tumors.

Our visually oriented society tends to belittle the importance of hearing, and frequently ascribes hearing complaints to psychological origins. The problems are serious, though. "Losing your hearing as an adult is like losing a close friend. You go through a grieving period," commented Robert Arden, a person with AIDS who became deaf two and a half years ago.

Arden lost his hearing in one ear two years before his second ear abruptly stopped functioning. Yet he had no preparation for deafness because his doctor told him complete hearing deprivation was unlikely.

Obviously, it is strongly desirable to start communication training ahead of time. Hearing aids are available for those with only limited difficulty, and there are speech reading and sign language classes at local centers for the deaf for those with the health and energy to participate in them. Once again, support groups can make a major contribution to resolving psychosocial issues.

The location of resources for those with AIDS-related hearing loss may be obtained from Karen Rachel at the San Francisco Hearing Society (415/863-4710, TDD: 863-2550, fax: 863-2715) or Florrie Burke at the University of California Center on Deafness (415/476-4980, TDD: 476-7600, fax: 476-7113).

Speech Impairment

Speech is such a complicated physical/mental process that many conditions can obstruct it. These include strokes, oral and esophageal lesions, respiratory weakness, and lack of muscle coordination caused by thorazine and related tranquilizers. Also, feeding tubes and respirators will block speech.

There are many speech therapists who can advise clients of long term and temporary measures that at least ameliorate speaking disturbances. Exercises are helpful for certain problems, especially those involving swallowing disorders. Mechanical devices, such as electronic larynxes and hand-held printers, can benefit even patients requiring respirators or tracheotomies to breath. These devices are rather crude and fatiguing, though. A pen and pad of paper often is still the cutting-edge technology.

Training caregivers to assume more of the burden of communication is a necessity when people have speech difficulties. Bridging the communications gap is vital for discovering people's needs when they are sick.

As people with AIDS live longer due to improved medical management, more will enter that confusing and frightening world of communications and sensory impairment. The conference at the University of California, the first of its kind in the nation, was an initial step in preparing care providers (and payers) for the steps needed to maintain patients' capabilities.

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