S h a r i n g
Solutions
Fall 2004
A newsletter for
People with Impaired Vision and
Their Support Networks

Thanks for Your Input!
We listen. In every Sharing Solutions, we
ask for feedback on issues that matter to
you. We're interested in your thoughts
and experiences . your frustrations and
concerns, as well as your successes and
solutions for making daily life easier when
vision is a problem. You tell us your personal
stories, triumphs, tips and advice for living
better with vision loss. And in turn, we share
your responses in our "Coast to Coast"
column for the benefit of all our readers.
In this issue, we feature your suggestions
for continuing to enjoy favorite leisure
activities. In addition, we invite you to
participate in our next "Coast to Coast"
exchange on the subject of driving. The
decision to drive . or not to drive . is a
critical one for so many people with vision
loss. And we look forward to sharing your
feedback about this complex issue.
And we keep listening. In response to your
requests, we have included an article about
Charles Bonnet Syndrome. This common
side effect of vision impairment causes
people to see things that they know aren't
really there. If you share this experience,
there is nothing wrong with your mind.
Read on to learn about this oftenmisunderstood
condition.
Thanks for making Sharing Solutions
a relevant resource for everyone.
Enjoy the newsletter!
Carol J. Sussman-Skalka
Newsletter Editor

You Can Do It!
Whatever your game, whatever your hobby,
or whatever you do for fun or relaxation,
don't assume it can't be done because of a
vision problem. In our last issue, we asked
you to share tips for continuing to enjoy
favorite activities. Here's what you had to
say, along with some additional suggestions
and resources for staying active.

Sports
- Bicycle Riding: It takes two! Ride a tandem
bicycle with a sighted friend who steers
while both of you pedal. Ask your partner
to tell you about upcoming hills, turns
or the need to brake along the way, and
to describe the changing scenery. If you
prefer, ride a stationary bicycle to get
the same aerobic benefits.

- Bowling: A guide rail is the key: Slide
one hand along its smooth surface while
delivering the ball with the other. Or ask
a sighted friend to position you. Your
friend can also call out the numbered
locations of the pins left standing.

- Fishing: You can't go wrong with prerigged
lines . the hook and sinker are
already threaded and clip to the end of
your fishing line. Or use floss or wireneedle
threaders to thread line through
the lure, hook or sinker. Fluorescentcolored
fishing line may be easier to
see if you're partially sighted. And
organizing your tackle box using
containers with tactile or large-print
labels can help you find what you're
looking for quickly. Here's an important
safety tip: place hooks in corks to prevent
sticking yourself accidentally.

- Golf: Get a feel for the course: On the
green, walk from the ball to the flag and
back to get a sense of the distance, slope
and break. Some golfers find it helpful
for a partner to stand next to the hole to
provide a larger target and/or to make a
sound. Inquire about the availability of
an audio guide of the golf course. Or ask
partners to tell you about bunkers, flags,
direction and distance. The rules allow
players with vision loss to ground the club
in a bunker without a penalty. Fluorescentcolored
balls may be easier to see, and
painting the heads of clubs white will
help them contrast well with the grass.

- Yoga: Instructors are often accommodating
to people with vision loss by wearing
contrasting clothing to enhance visibility,
providing hands-on assistance to execute a
particular move or position, and allowing
you to follow their moves with your hands.

- Swimming: A pool with roped lanes can
help with orientation. And when you're
swimming laps, count how many strokes
it takes to swim the length of a pool so
you can know when to slow down as you
near the end.

- Snow Sports: "Snow skiing is exhilarating
and fun!" exclaims one enthusiast. Take
advantage of sighted guides for both
downhill and cross-country skiing. A ski
guide chooses the line to be taken during
the descent, describes slope conditions
and terrain changes, and indicates timing
and direction of turns. Special commands
are used for cross-country skiing to ensure
communication about bumps, dips, hills
and turns.
Bring a buddy: Go snowshoeing with a
friend. One woman describes how: "My
husband (or friend) walks in front holding
a long stick and I hold the other end. It's
great exercise and a fun walk."

Activities Around the House
- Gardening: There are as many tips as
there are plants! You can grow plants
with distinguishable scents (lavender
and geraniums, for example) or different
textures (African violets and amaryllis).
Use large-print tags or place plants into
containers of different sizes or shapes
to make them easier to identify. Paint or
tape the handles of garden tools to make
them easier to see. White paint on the
tines of a hoe provides excellent contrast
with the soil.

If you want to plant a garden, use a cane
as a guide for planting a straight row, or
lay down two fishing lines and plant seeds
between them. Place mulch or landscaping
felt between plants and seedlings to reduce
the need for weeding. Use contrast to help
with orientation: place a brightly colored
strip down the center of a pathway, or use
something textured like gravel or bark.
And a radio playing on your porch makes
it easier to find your way back.

- Handicrafts: Think twice before you
give up knitting, crocheting and sewing.
Getting organized is key: Separate thread
and yarn by color using large-print or
braille labels; separate skeins using plastic
ZiplocR bags or empty coffee cans with
plastic lids. Create a one-inch hole in
the center of the lid and thread the yarn
through to prevent tangles.
Use tape measures or rulers with tactile
or large-print markings. And there are
talking tape measures and those that
fold at one-inch intervals. Invest in
needle-threading devices, such as wireloop
threaders, chimney-style threaders,
spread-eye needles or self-threading
needles (also available for sewing
machines), or try needles with
larger eyes.

Enlarge patterns or instructions on a
copier machine or ask someone to record
instructions on a cassette. And finally,
experiment with flexible lighting, such as
gooseneck, swing-arm or adjustable lamps,
which can be positioned to focus light on
your task. Lamps with built-in magnifiers
or magnifier attachments are also helpful.

- Knitting and Crocheting: Large knitting
needles or crochet hooks make it easier to
feel the stitches. If you're partially sighted,
contrasting yarn color can further enhance
visibility. To avoid having to change yarn
frequently, use multi-colored yarn. A small
abacus can help you keep count of rows
and stitches. Or place a button or coin in
a container as each row is completed.
As you work, keep your fingers very close
to the needle points so you can feel the
stitches come off. If you've dropped a
stitch and can't find it by touch, lay the
piece on a contrasting surface to try to
locate it. Mark the stitch with a safety pin.
If the stitch is loose or large, try to pick it
up with your fingers or a crochet hook and
thread it back. If the dropped stitch is not
far from where you stopped, it's easier to
undo stitches back to that point and then
continue working from there.

- Sewing: Outline sewing patterns with
bold-tip pens, tactile markings, such as
Hi-Marks, or colored tape to help you see
or feel the cutting line. To make frequently
used patterns permanent, transfer them
onto heavy cloth or cardboard that is
edged with contrasting seam binding or
tape. The edge is a different texture from
the fabric and protects the pattern from
being cut.

Pull thread across beeswax to prevent
it from knotting or curling. A good rule
of thumb is to use strands about arm's
length. Use safety pins instead of straight
pins; consider iron-on hemming tape
instead of sewing a hem. Mark the settings
of your sewing machine with raised dots
and place a strip of contrasting or textured
tape on the bed of the machine as a guide
for sewing your preferred seam width.

For readers who enjoy quilting, use fabrics
with varied textures or contrasting colors.

- Board Games and Cards: Many games .
Scrabble,R RummikubR and playing
cards . are available in large print and/
or braille. Ask your partners to call out
the cards as they are being played. If you
prefer chess or checkers, some sets are
adapted so that one board color is raised
or textured, and each set of pieces has a
different-shaped top (flat or pointed).

- Playing Musical Instruments: Readers
continue to play music by ear or memory,
or with the help of enlarged musical
scores. Others take up new instruments
with the help of instructional audiotapes.

- Reading: In addition to enjoying largeprint
books, or using a magnifier or
CCTV to read, people use talking books
and books in braille. They are available
free of charge from The National Library
Service at (800) 424-8567. Periodicals
and newspapers are broadcast over special
radio channels operated by Radio Reading
Services. To locate one near you, call
(800) 829-0500. And NFB-NEWSLINER
provides free telephone access to a wide
range of national and local newspapers;
call (410) 659-9314 for information. continued on page 7
These are just some of the hobbies and
activities people who are blind or partially
sighted continue to enjoy. The list goes on
and on to include water aerobics, water
skiing, working out on exercise machines,
talking on ham radio, carpentry, crafts,
painting furniture, walking, hiking and so
much more. A reader who is an avid . and
safe . woodworker holds up his hands and
exclaims, "I still have ten!"
However, some people report giving up
activities like ping pong, tennis, fine
embroidery, photography and painting.
And not being able to drive has affected one
reader's ability to keep up ballroom dancing.

And don't forget that you can team up with
a "buddy" for help. If you attend a support
group, ask around to find others who share
your interests. If you have Internet access,
log onto www.visionconnection.org, and
visit the "Community & Lifestyle" and
"Recreation & Leisure" sections for
additional information and resources. Or
call the Lighthouse Information & Resource
Service toll free at (800) 829-0500 for free
recreation and reading options fact sheets.
Information for this article was also obtained
from the US Association of Blind Athletes,
US Blind Golf Association, SportsVision,
The Royal National Institute of the Blind,
Vision Australia Foundation, Royal Blind
Society, Blind Sport New Zealand, Ski for
Light Canada and Lighthouse International's
publication, Take Charge of Your Life with
Vision Rehabilitation. -
Special thanks to Nancy Paskin, MART, RTC,
CLVT, Lighthouse Director of Rehabilitation
Teaching, for her input.

Give It a Shot!
Discuss your favorite pastime with a low
vision specialist or other vision rehabilitation
professional to see what adaptations are
possible for your vision problem, including
the use of magnifiers and a CCTV. Learning
new ways to continue a life-long interest may
take time and patience, but may be well worth
the effort. "Always try and give it a shot. You
may surprise yourself," advises one of our
readers.

I See Purple Flowers Everywhere:The Many
Visions of Charles Bonnet Syndrome
by Lylas G.Mogk,MD, and Marja Mogk, PhD; with Carol J. Sussman-Skalka,CSW, MBA.

Do you ever see things you know are not
there but look real anyway? It's a common
side effect among people with vision
impairment. While we refer to it as "phantom
vision," the technical term is "Charles Bonnet
Syndrome." If you've experienced this, rest
easy. Your mind is fine. It's your eyes that
are playing tricks on you.

What Exactly Is Charles Bonnet
Syndrome?
Charles Bonnet, an 18th century Swiss
naturalist and philosopher, is credited as the
first person to describe the syndrome. Like
his grandfather, who had low vision and saw
men, women, birds and buildings he knew
were not there, Charles experienced similar
phantom visions when his own vision
deteriorated.

One explanation compares this condition
to phantom limb experiences. People who
have a limb amputated may still feel their
toes or fingers, or may experience itching
on an arm that is not there. This happens
because the limb's nerves are still active and
sending signals to the brain, which the brain
interprets as sensations from the missing
limb. Similarly, when retinal cells become
impaired and are no longer able to receive
and relay visual images to the brain, the
visual system begins firing off images
on its own.

Often, these images are not related at all
to a person's life. Sam, who has macular
degeneration, said, "I see little monkeys with
red hats and blue coats playing in the front
yard." Sam had no doubt that the monkeys he
saw were not real ones. As a result, he wasn't
concerned about his mind. However, he was
worried about what others would think, so
he kept it to himself.

Is the Syndrome Common?
Studies show that Charles Bonnet Syndrome
affects between 10 and 40 percent of people
with low vision. Our research suggests that
it is more likely to appear if you have visual
acuity between 20/120 and 20/400. If your
vision falls within these parameters, your
eyes still have a great deal of power, even
though they aren't receiving or sending as
many images as previously. As a result,
your eyes may be providing additional
images of their own.

We can't predict whether you will see images
and, if you do, how frequently they will occur
or how long they will last. You may never
experience Charles Bonnet Syndrome, you
may have it for only a few months, or you
may have it for years. You may see images
everyday, a few times a week or several
times a month.

Are You Sure This Is Not a Psychiatric
Problem?
Yes! Charles Bonnet Syndrome is no
more than a side effect of vision loss. The
six criteria for Charles Bonnet Syndrome
(outlined by Naville in 1873 . and still
applicable today) can help you determine
whether or not you are experiencing phantom
vision. Ask yourself whether the images you
see have the following six characteristics:
"1. They occur when you are fully conscious
and wide awake, often during broad
daylight.
2. They do not deceive you; you are aware
that they are not real.
3. They occur in combination with normal
perception. For example, you may see a
sidewalk clearly but find it covered with
dots, flowers, or faces.
4. They are exclusively visual and do not
appear in combination with any sounds
or bizarre sensations.
5. They appear and disappear without
obvious cause.
6. They are amusing or annoying but not
grotesque.

"Since ophthalmology has paid so little
attention to Charles Bonnet Syndrome, many
doctors don't realize how common it really is,
and some may not be familiar with it at all."

What Do People Actually See?
Patients "have reported seeing cartoon
characters, flowers in the bathroom sink,
hands rubbing each other, waterfalls and
mountains, tigers, maple trees in vibrant
autumn foliage, yellow polka dots, row
houses, a dinner party and brightly colored
balloons. Many people see faces or life-size
figures that they've never seen before. One
of the most remarkable qualities of these
figures is that they almost always wear
pleasant expressions and often make eye
contact with the viewer. Menacing behavior,
grotesque shapes and scenes of violent
conflict are not, to my knowledge, a part
of the syndrome.

"Usually the same image or set of images
reappears to each person, sometimes in the
same places or at the same time of day. Sam's
monkeys usually materialized around sunset,
cavorting across the lawn or around the big
blue easy chair by the fireplace. They stayed
for ten or 20 minutes several times a week
for two years and then began to appear less
frequently. ... Sometimes the images are
exactly to scale and sometimes larger or
smaller than life. ... Joe's horses looked
like children's toys at a distance of ten feet,
but as they galloped outside they became
Clydesdales and then stallions worthy
of Gulliver."

Rosa saw "flowering trees" with large, beautiful
pink flowers. She knew that they weren't real
because it was autumn. But when she told a
friend what she was seeing, her friend was
not convinced with Rosa's explanation. Rosa
stopped telling people about her visions. She
acknowledged, "You have to be careful what
you say."

"Sometimes Charles Bonnet Syndrome images
can become confused with dream images. For
example, several of my patients have reported
frightening moments when they thought they
saw a man standing in their bedroom or
hallway. These men, however, were often darkclad
or indistinct figures that appeared as the
patient was relaxing on a couch, dozing or
in bed waiting to fall asleep, or just awaking.
These figures were probably residual dream
images. ... They are not typical of Charles
Bonnet Syndrome."

Is Charles Bonnet Syndrome Treatable?
A majority of people do not find their phantom
vision disturbing, probably because the images
they see are amusing, pleasing or entertaining.
You may want to discuss your phantom vision
with your doctor, particularly if you feel
bothered or distressed by your experiences.
While there does not seem to be any specific
medications that work for everyone, many
people find that learning more about the
condition helps to reassure them.
Buddy's "purple flowers" appeared in
his bathroom and on his clothing. He
got a chuckle when he imagined what golf
pants with purple flowers would look like to
other people. He had a cousin with macular
degeneration who saw frogs in his bathtub and
a very attractive woman stationed on his back
porch. Buddy's purple flowers didn't compare
to the woman on Harry's porch; and Harry,
though disappointed that his "vision" was
not real, found that he enjoyed it quite a lot! -
This article is based on, and includes quotes
from, a chapter in Macular Degeneration:
The Complete Guide to Saving and
Maximizing Your Sight, written by Lylas G.
Mogk, MD, and Marja Mogk, PhD, published
by The Ballantine Publishing Group (2003).

One of the most devastating consequences
for people who become visually impaired is
the loss of the ability to drive. The decision to
stop driving is not easy. In fact, a Lighthouse
research study suggests a significant number
of older adults with vision impairment
continue to drive, although many also
change where and when they drive. Driving
is a means to accomplish daily tasks and to
maintain an active social life. It is also linked
to feelings of independence and self-worth.
The transition from driving to "giving up
the keys" can be emotionally trying and
have a significant effect on one's life.
The Lighthouse Arlene R. Gordon Research
Institute has initiated a five-year study funded
by the National Institute on Aging to better
understand driving transitions among people
with vision loss. The study will follow current
drivers who are visually impaired for a twoyear
period and identify what influences
them to change their driving behavior or
to stop driving, and the psychological
impact of these decisions.
Insights about what can make driving
transitions less distressing can assist
professionals, family members and friends
to help older adults make timely decisions
about driving.

We're interested in hearing from drivers and
ex-drivers alike. Let the following questions
be your guide. Discuss them at your next
Thanks for sharing

Kate Chamberlin, The Lemonade Society,
NY; Betty Cain, Low Vision Support
Group Max II, SC; Mary Rumman,
Turner Geriatric Clinic Low Vision
Support Group, MI; Marie G., NY;
Beverly Sorensen, Low Vision Support
Group, SD; Shena Robinson, ME; Arline
Hertz, Insight Support Group, FL; Linda
Scribner and Sylvia Adams, League for
the Blind and Disabled Support Groups
in Auburn, Decatur and Fort Wayne, IN.
To get in touch with people who shared
their experiences, call the Lighthouse
toll free at (800) 829-0500 or e-mail
info@lighthouse.org.

Take Part in the Next "Coast to Coast"
on Driving and Vision Loss
For people who still drive:
- What considerations would lead you
to discontinue driving?
- What practical and emotional
consequences do you anticipate?
For people who have stopped driving:
- What were the most important influences
on your decision to stop driving?
- What practical and emotional
consequences did you face, and how
have they changed over time?
- What has helped in your adjustment since
you stopped driving? What has made it
difficult?
Please respond by January 15, 2005, so
that we can include your responses in the
next issue. Call Carol Sussman-Skalka toll
free at (800) 829-0500, or e-mail her at
sharingsolutions@lighthouse.org. You
also can send letters or tapes to Carol at
Lighthouse International, 111 East 59th
Street, New York, NY, 10022-1202. -

111 East 59th Street
New York, NY 10022-1202
ADDRESS SERVICE REQUESTED
P380-F04/9M/9-04
Cynthia Stuen, DSW
Senior Vice President for Education
Carol J. Sussman-Skalka, CSW, MBA
Newsletter Editor
Sarah Lloyd
Director of Educational Publications
Laurie Silbersweig
Director of Editorial Services
Jaine M. Schmidt
Vice President of Creative Services
Photos by Robert A. Lisak, Judith Moderacki and PhotoDiscR
This newsletter is available in alternate formats and on our Web site:
www.lighthouse.org.To add your name to our mailing list,
call (800) 829-0500 or e-mail us at: info@lighthouse.org.
Lighthouse International
Barbara Silverstone, DSW
President and CEO
Lighthouse International is a leading resource worldwide on vision
impairment and vision rehabilitation.Through its pioneering work
in vision rehabilitation services, education, research, prevention and
advocacy, Lighthouse International enables people of all ages who
are blind or partially sighted to lead independent and productive
lives. Founded in 1905 and headquartered in New York, Lighthouse
International is a not-for-profit organization, and depends on the
support and generosity of individuals, foundations and corporations.
Lighthouse International
111 East 59th Street
New York, NY 10022-1202
Tel: (212) 821-9200
(800) 829-0500
Fax: (212) 821-9705
TTY: (212) 821-9713
www.lighthouse.org
¨Ï 2004 Lighthouse International
5 Printed on recycled paper
support group meeting or just tell us about
your own situation.