Coping With the Fear of Blindness
Chat Highlights
November 10, 2004
Norma Devine, Editor
On Wednesday, November 10, 2004, Dr.
Rick Wilson, a glaucoma specialist at Wills, and the glaucoma
chat group discussed "Coping With the Fear of Blindness."
Moderator: Tonight's topic is "Coping With the Fear of
Blindness." Dr. Wilson, that fear seems to take
two forms. One is the result of relentless progression that begins to
affect functioning. The other is a more generalized fear that comes
from the lack of information or
understanding common among newly diagnosed patients.
Dr. Rick Wilson: Yes, I think that is a good
distinction. The first kind of fear you mention,
that resulting from having a relentless,
progressive glaucoma that even the best doctors
cannot stop, is very rare. Other eyes are lost to hemorrhages or
infections secondary to surgery, which is a more frequent
problem.
The more generalized fear is, as you said, due to a
lack of understanding of the disease. I have made the point many times
that most glaucoma visual loss in America
happens before the patient comes under care.
P: Do you find that educating patients is
always a good way to conquer their fear?
Dr. Rick Wilson: That's not always successful,
due to an inherently negative attitude, distrust, etc. However,
educating the patient is always the first step.
Moderator: Can too much education increase a
patient's fear?
Dr. Rick Wilson: I don't think too much
knowledge will unnecessarily increase fear. Sometimes it leads to
patients making decisions on their own, instead of making making joint
decisions with their doctors, which might be the more prudent course.
P: I don't really fear eventually becoming
legally blind (20/200 or worse), but what worries me the most is loss of
function as an independent individual -- the ability to drive, read, care
for my (future) children. Those things are more scary than just the
thought of vision worsening.
Dr. Rick Wilson: I agree. Losing
independence is the aspect that most individuals fear most.
Fortunately, with glaucoma, central vision is
lost near the end. Reading vision and the ability to take care
of one's self are rarely lost, unless the glaucoma was discovered very
late, or the patient did not take a compulsive part in his or her care, or
the doctor did a poor job.
P: My 85-year-old Mom went from sight to only
light perception in a matter of days. There's no more real hope of her
getting sight back. She doesn't want to go anywhere. She's
ashamed, but it was the doctor's fault. What to do? I've put my
life on hold. She won't do anything to help herself. Any
advice?
Dr. Rick Wilson: I'm sorry. That's a
terrible situation. When patients go from sight to no sight in a few
days, the IOP is either terribly high (for example, over 70 mm Hg), there is
a vein occlusion (stroke) in the eye, or most likely, all the vision
except a small amount of central vision was already lost, and then the last
bit of central vision was lost. Since glaucoma vision loss is so slow, it is
like watching hair grow. People are not aware of their progressive
visual loss.
P: How can I help her?
Dr. Rick Wilson: The emotions
associated with loss of vision are probably like
the five stages associated with dying that Elizabeth
Kubler-Ross described: denial, anger, bargaining, depression, and, finally,
acceptance --- if I remember correctly. I would see a psychiatrist for
antidepressants, which can work
wonders in some patients, and for talk therapy to help her through the
depression to acceptance. I would also seek the help of the local
agency for the blind and partially sighted. They have radios on which
readers read the daily paper and magazines to blind patients. They also offer instructions in Activities of Daily
Living. That might help your Mom have hope of some independence.
Unfortunately, it is hard to teach an 85-year-old person new things, but
it's possible.
P: What is the best way to talk with a
teenager who has uveitis and glaucoma?
Dr. Rick Wilson: Usually, the biggest problem
with getting people to take responsibility for their disease treatment is
anxiety. Anxiety leads to denial. For example, "I can see my hand to
the side and I see people a block a way, so I can't have glaucoma." Denial
allows people to be indifferent to their disease and neglect the
treatment. I would not try to scare the teenager into using the
medications. Here, education about the slowly progressive nature of
glaucoma and the lack of symptoms is crucial, along with the reassurance
that treatment is usually effective in stopping the disease.
P: If you're educated about your glaucoma, but
you're still afraid of the possibility of going blind, what is the best way
to cope with that fear or have a more positive attitude about it?
Dr. Rick Wilson: Good question. If you
have complete trust in your doctor, you can ask her or him about the extent
of your glaucoma, how you have been doing, the risks of progression to
functional vision loss, etc. It is usually possible to extrapolate the
rate of progression if four or five years of care can be looked back on,
with documentation of the visual fields and the appearance of the optic
nerve.
P: Most people think that if glaucoma is caught
early and they take drops and follow the doctor's advice, there shouldn't be
any worries about losing sight. But that isn't always the case, is
it?
Dr. Rick Wilson: It is the case most of the
time. If the disease isn't stopped, it is usually slowed down so much
that the vision lasts for many, many years. Glaucoma, however, is a
progressive disease in most people. As the disease -- the blockage in
the drain in the eye -- gets worse, the treatment must become more
intensive in order
to counteract the worsening of the outflow problem. The pressure must
be controlled without allowing the optic nerve to become more damaged,
resulting in loss of vision.
P: Is progression of glaucoma usually roughly
linear? Or in stages, with the stages being roughly linear?
Dr. Rick Wilson: It is linear early, but the slope
seems to increase with increasing disease and may be more step-like in
far-advanced disease in some people. That would be an interesting question
for a glaucoma doctors' chat.
P: Do you think patients' past experiences are
a factor in the level of anxiety they feel?
Dr. Rick Wilson: Always. If we have
had a bad experience, that always influences how we regard the
future.
P: Dr. Wilson, sometimes we patients try
glaucoma medicines, laser surgery, filtering surgery, and more
medications. Nothing seems to work. That is disappointing, and we see
successive visual field tests always looking worse. Then we become
desperate, sad, and lose hope. Don't you think that's
so?
Dr. Rick Wilson: Yes. The progression you
mention is unusual, but does happen. If the visual field is getting
worse, then more
major surgery is warranted. There is always something
that can be done to lower the IOP. The problem is that the bigger the
surgery, the bigger the risk. The risk of the intervention must always
be weighed against the rate of worsening of the
glaucoma. If the rate of
the glaucomatous vision loss is slow, vision will outlast the body. If
not, surgery,
with its risks, is indicated.
P: When I get too worried about my 20/84.5
vision, my personal coping mechanism is usually sarcastic (and at times, bitter) humor. I
just tell myself, "Well, at least I'm not blind yet!"
Dr. Rick Wilson: As Reader's Digest says, "Humor is the Best Medicine." Many studies
have shown the ameliorative effects of a positive attitude.
P: I am concerned that no treatment will work
for me since the initial two drops quit working after about one or two
months. Fortunately, my recent diagnosis is pre-glaucoma or glaucoma
suspect.
Dr. Rick Wilson: New medications and new
surgeries are on the
horizon, so I expect that cases we cannot control with medicine or surgery
today will be much more easily controlled in the future. The future also
holds other improvements in prognosis. One is the development of
medications that will increase the resistance of the optic nerve to elevated
IOP (intraocular pressure). These medications will be combined with better
medications to lower IOP to normal levels, so we will have two ways of
saving the nerve.
Also on the horizon is a gene treatment,
in which a normal gene that will counteract the gene causing the outflow
problem in the trabecular meshwork will be inserted into the trabecular
meshwork, using a benign virus to transfer the genetic material. That will
cure the cause, although retreatments may be necessary. The third
option (thank goodness for California) is using stem cells to repopulate the
damaged retina with healthy retinal ganglion cells, restoring vision to
badly injured eyes.
P: Dr.
Wilson, your positive attitude has made me feel better. I
needed to hear this. My doctor isn't very positive, which always
causes me to worry. Thanks.
Dr. Rick Wilson: Education about the disease
and the options is the first step. If you have any doubt about the
approach your doctor is taking or about the doctor, a second opinion may
help. If all that doesn't reduce the anxiety, then counseling may
well help.
P: The patient's level of anxiety increases
when the doctor is rushed and doesn't share much information about the
patient's progression. It can contribute to the patient fearing the
worst, when in fact things may be going along fine.
Dr. Rick Wilson: I'm afraid rushing doctors are
more and more a sign of the times, with decreasing reimbursement and rapidly
increasing malpractice premiums. Doctors have to see more and more
patients to keep up with increasing office salaries and overhead. It's hard on
patients who don't get all their
questions answered, and
it's hard on doctors who feel rushed and stressed.
P: In all the years I've been communicating
with glaucoma patients here and privately, lack of good communication with
their doctors has been one of patients' biggest complaints.
Dr. Rick Wilson: That's completely
understandable.
P: Will it be the doctor who determines the
patient's ability to work and drive? My husband has severe optic nerve
damage in the right eye, and poor vision in the left eye. The IOP in
the left eye is now under control with medication.
Dr. Rick Wilson: Usually the doctor furnishes
the vision and visual field tests, and perhaps an opinion to the
disability carrier who makes the decision about insurance. Employers
generally accept the opinion of the doctor.
P: Sometimes I am afraid of losing vision
acutely, that is, if I have to have another surgery to revise my bleb
and something goes wrong. That possibility seems much more plausible
than going blind in 30 years from the disease itself.
Dr. Rick Wilson: Surgery is always a
risk. Usually a bleb revision is a low-risk surgery. Over the
last 25 years, I can only remember one patient losing central vision from a
bleb revision.
P: My husband recently gave me the latest
version of Dragon Naturally Speaking. If my vision fails, I will be
able to have my computer read Web pages, e-mail, and so on to me and I will
be able to dictate messages and articles. Using that or similar computer software could also save
doctors a lot of money spent on transcription
fees.
Dr. Rick Wilson: I often use Dragon Naturally
Speaking for these chat rooms. It improves the speed of what I get
down, but I have to reread and correct, which causes me to lose much of the
advantage.
Moderator: Thanks again for your time, Dr.
Wilson. I think this topic has been an important one for
patients. It allowed us to talk about our fears.
Dr. Rick Wilson: Have a good week, all.
Let the webmaster and me know if this more psychosocial chat was really
helpful. If so, I would try to get a psychologist to be a guest for
such a chat.
P: Thanks. I found this very
helpful.
End of highlights for November 10, 2004.
On November 17, 2004 a medical emergency prevented Dr. Wilson
from attending chat. We used the hour for a moderated patients'
chat. Click here for highlights of that
meeting.
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