Eyesight, Hearing, Speech: Potential for Rehabilitation Often Ignored When Treating AIDS

CMV retinitis damages the eyesight of about a quarter of the
people with advanced AIDS. Several studies have found that up to
half the people with AIDS experience at least slight hearing
loss. A wide range of conditions, many stemming from medical
treatments, also can interfere with the ability to speak. Yet
scant attention is paid to the personal consequences of losing
connection with the outside world.

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.