Sharing Solutions
Fall 2005
A newsletter for
People with Impaired Vision and
Their Support Networks


Help Us Spread the Word!
As the Lighthouse celebrates its Centennial, championing the benefits of vision 
rehabilitation for people with vision loss continues to be a top priority. Today, there are 
16.5 million Americans age 45 and older who report some form of vision impairment. 
This number will rise dramatically to 20 million in just five years.

Join us to help ensure that people with impaired vision seek vision rehabilitation services 
in their home communities by ordering our free publication, "Vision Loss Is Not a 
Normal Part of Aging," which has been reprinted thanks to a special grant from 
Novartis Ophthalmics. This booklet explains the difference between normal changes in 
vision, which we all experience as we get older, and changes that are caused by disease. 
You can help us raise awareness by sharing this booklet with your community. See page 3 
for ordering details.

In this issue, we explore overprotection and its impact on people adjusting to vision loss. 
And we invite you to share your experiences for our next "Coast to Coast" exchange. We 
also feature information on how people with vision loss can manage their diabetes. 
You're not alone. There are professionals you can turn to, and services and products that 
can help you achieve independence.

And we appreciate your telling us how spirituality and religion have influenced your 
adjustment to vision loss. People draw on their faith for hope, support, comfort and 
friendship. As always, thanks for sharing.

Carol J. Sussman-Skalka
Newsletter Editor


Announcing Our New President
During our milestone Centennial year, Lighthouse International is delighted to welcome 
Tara A. Cortes, RN, PhD, as President and CEO. Dr. Cortes has been a distinguished 
leader in health care for 38 years and joins the Lighthouse from Yale New Haven Health 
Care System, where she served as Senior Vice President and Chief Nursing Officer of 
Patient Care Operations at Bridgeport Hospital.

Dr. Cortes has extensive clinical, managerial, administrative and academic experience, 
having worked for several of New York's most prestigious health care institutions, 
including Columbia University and New York Presbyterian Medical Center, Rockefeller 
University and Hospital, Hunter College School of Nursing, The Mount Sinai Hospital 
and School of Medicine, and New York University Medical Center.  A graduate of 
Villanova University and New York University, where she received her PhD in Nursing 
Science and Research, Dr. Cortes was named a Fellow in the highly competitive Robert 
Wood Johnson Executive Nurse Fellow program. She is the recipient of numerous 
professional and academic honors. 

Overprotection: Support Gone Wrong?
By Verena R. Cimarolli, PhD

Family members and friends can play an important role in helping people close to them 
adjust to vision loss by providing much-needed emotional support as well as direct 
assistance with performing everyday tasks. However, there are aspects of support that can 
be detrimental. Overprotection is one of them. People may feel overprotected when they 
are helped unnecessarily, encouraged to be dependent, protected from stress or overly 
restricted by support providers.

Why Study Overprotection?
Overprotection in older adults with vision impairment was the focus of a recent 
Lighthouse study in our Arlene R. Gordon Research Institute. Vision loss is often 
associated with falls and injuries, and family members and friends may be overprotective 
in order to prevent these accidents. Overprotection may happen when support providers 
feel it's easier and faster to take over certain tasks rather than watch relatives struggle to 
accomplish them on their own. In fact, one research participant commented, "They 
[family members and friends] would rather do it themselves than wait. People aren't that 
patient towards a blind person." Family members may simply not realize the potentially 
negative impact of their actions.

Studies involving people with stroke, cancer and even healthy older adults have found 
that those who feel overprotected are also more likely to report symptoms of depression. 
Researchers of these studies believe that overprotection makes people feel helpless, 
which in turn, may lead to depression.

In the Lighthouse study, when asked, "If the people around them were overprotective," 
one individual stated, "I don't allow them to. I don't want that kind of help. I don't want 
to be helpless."

Other research has found that overprotective care can hinder successful rehabilitation 
outcomes. For instance, stroke patients who felt overprotected showed decreased 
motivation to work in physical therapy programs. The negative impact of overprotection 
on both psychological well-being and rehabilitation outcomes make this issue worth 
exploring.

The Questions We Posed
The Lighthouse study looked at how overprotection affects the ability of older adults to 
cope with age-related vision loss — and how overprotective attitudes and behaviors may 
develop. Specifically, the study aimed to answer two questions:

--Are older adults who receive help with tasks of daily living more likely to perceive their 
support as overprotective?

--How does feeling overprotected affect an older person's ability to adapt to age-related 
vision loss?

Study participants had recently become visually impaired and had not received any 
rehabilitation services. As part of a comprehensive research interview, they were asked to 
rate their degree of agreement with statements regarding overprotection, including: "The 
people around me don't let me do the things I could do myself." "Sometimes those 
around me treat me like a small child." And "People do not think that I can take care of 
myself."

Here are some responses:
--"Like if I'm cutting something, he'll take the knife away from me."

--"They want me to sell the house and move in with them. Can't do it! Kind of hard 
living independently to then go live with someone else."

--"They try [to overprotect me], but I don't like it; you feel very belittled and degraded."

What We Learned
The study findings showed that the more help people reported receiving, the more likely 
they felt that the help was overprotective. It appears that receiving a lot of support with 
tasks of daily living sets the stage for feelings of overprotection. In addition, the study 
showed that the more overprotected the participants felt, the less likely they were to adapt 
psychologically to their vision impairment.

Where We Go from Here
Knowing that overprotection is detrimental leads us to look at how support providers and 
recipients can better communicate their needs and work together to avoid it. In the 
Lighthouse study, one participant responded to the statement, "Many of the 
responsibilities that were once mine have been unnecessarily taken over by others," with 
"Oh no, I do my own; they want to take over but I won't let them."

Support providers may need to know more about when, how — and how much — to help 
in order to avoid an overprotective style of offering help. And people with impaired 
vision may need to articulate when they feel overprotected as well as exactly when they 
need help, how they want to be helped, and how much help they want. One man 
commented, "I asked my wife to take care of the bills and mail. But, I asked. She didn't 
take it away from me." And another shares, "This friend of mine tries to do things for me 
and I have to say I could do them myself." 

What are your experiences? Share them with us for our next "Coast to Coast" exchange. 
Verena R. Cimarolli, PhD, is a Research Associate for Evaluation in Lighthouse 
International's Arlene R. Gordon Research Institute.

Take Part in Our Next Coast to Coast
As discussed in the previous article, overprotection by family members and friends can 
have a negative impact on a person's ability to adapt to vision loss. People may feel 
overprotected when they are helped unnecessarily, encouraged to be dependent, protected 
from stress or overly restricted by support providers. In our next issue of Sharing 
Solutions, we will feature an exchange on your experiences with overprotection — and 
include your family members' perspective as well. Discuss the following questions at 
your next support group meeting or with family and friends:

If you have a vision impairment:
--In what ways have you felt overprotected by the people around you? How does that 
make you feel?

--How do you deal with overprotective attitudes and behaviors from others?

--What do you think can help others better understand the difference between necessary 
help and overprotection?

If you're a family member or friend:
--Do you ever think of yourself as being overprotective? Or have you ever been told that 
you're overprotective? In what situations?

--How do you decide when to do something for your relative/friend or when to let them 
do it for themselves?

--How can you and your relative better understand each other's needs and concerns about 
offering and receiving help?

Please respond by January 15, 2006, so your responses can be included in our next issue. 
Call Carol Sussman-Skalka at (212) 821-9481, or e-mail her at 
sharingsolutions@lighthouse.org. You can also send letters or tapes to Carol at 
Lighthouse International, The Sol and Lillian Goldman Building, 111 East 59th Street, 
New York, NY, 10022-1202. 

Order Your Free Copies of Vision Loss Is Not a Normal Part of Aging 
Help us spread the word, so that more people can understand the difference between 
changes in vision that are normal and those that are not. This booklet is available in both 
English and Spanish. Order your free supply (with a maximum of 50 copies per person) 
by faxing (212) 821-9705, e-mailing gobando@lighthouse.org or sending a letter to 
Lighthouse International, The Sol and Lillian Goldman Building, 111 East 59th Street, 
NY, NY 10022-1202, Attn: Center for Education.

Diabetes, Vision Loss and You
By Debra A. Sokol-McKay, MS, CVRT, CLVT, CDE, OTR/L
Being in control of your diabetes is hard work, especially when you have a vision loss. 
But it can be done — and you don't have to do it alone. Since you're the one living with 
diabetes, it's up to you to know about available services and products. It's also important 
to realize that there are people you can turn to for support and information — eyecare and 
medical professionals, vision rehabilitation therapists, certified diabetes educators and, in 
many cases, family and friends. It may take more time and effort, but you can achieve the 
independence you want and learn to manage diabetes your way.

Eye Examinations Are Key
Diabetes affects vision, so it's very important to have regular eye examinations by an 
ophthalmologist and to report any changes in your vision as quickly as possible. When 
you have a vision loss, an eye exam by an ophthalmologist or optometrist who specializes 
in low vision care can be an important next step. A low vision exam focuses on the vision 
you have and, in most cases, optical and/or electronic magnification devices can be 
prescribed to help you use your remaining vision to perform many diabetes-related and 
other daily tasks. These may include reading medication and nutrition labels, expiration 
dates on insulin bottles or blood glucose test strips, and numbers on a syringe. Learning to 
use these devices successfully and confidently takes some practice, but if it's important to 
you to carry out these tasks on your own, it is worth the effort.

Managing Diabetes-related Tasks
Let's look at three specific tasks:
Blood Glucose Monitoring: Many blood glucose monitors on the market have large 
displays and bold numbers, making it possible for people with vision loss to continue to 
test on their own. For those who cannot rely on vision, "talking" blood glucose monitors 
are available, including one encased in a "voice" unit and others with "voice" attachments 
that connect to the monitor by a data cable. The voice unit reads aloud the information 
shown on the monitor display. Your diabetes care professional can provide information 
about the various monitors with speech capability, such as the Accu-Chek™ 
Voicemate™ System, an integrated talking system; or the OneTouch® Basic® and 
OneTouch® SureStep® — each of which can be used with a voice attachment.

"Talking" monitors are reimbursable by many insurance companies, including Medicare, 
as long as your physician writes a detailed prescription and your eye report indicates that 
you are legally blind (the corrected vision in your better eye is 20/200 or worse).

Being able to insert the test strip into the monitor's port and apply your blood sample to 
the site on the test strip are essential day-to-day tasks that need to be accomplished 
visually or by touch. Coding the monitor to the test strips and checking that the monitor is 
working correctly are also important for proper use and maintenance of your blood 
glucose monitor.

While it takes patience and motivation to learn the steps involved, many people without 
vision do test their glucose levels independently. But you'll need a good teacher. A 
certified diabetes educator (CDE) and/or a vision rehabilitation specialist can help you 
manage these doable tasks and evaluate which glucose monitor is easiest for you to use. 
Insulin Management: There are several insulin measurement devices on the market, and a 
number of techniques you can learn to draw up insulin accurately and safely. It's 
important to work with a vision rehabilitation professional along with a CDE or physician 
to receive proper instruction in the use of these devices, as well as to verify that you are 
using proper techniques. If you take the same dose of insulin every day, you may be able 
to use a device that is initially preset by a sighted person and can be used independently 
thereafter. If your dose varies, you can use a device that measures the insulin by counting 
and feeling clicks or by counting the number of turns. There are also non-visual 
techniques to remove air bubbles and to know when your insulin vial is empty.

Insulin pens are another alternative for measuring insulin. Your physician or CDE will be 
able to advise you if the kind of insulin or dose you take is available in this form. Similar 
to other insulin measurement devices, you can "dial up" your dose with pens by feeling 
and listening for clicks.

Another benefit and safety feature of many insulin pens is that they stop dialing when 
they're empty. Many are on the market by such manufacturers as Novo Nordisk, Aventis 
and Eli Lilly & Co., and require prescriptions. With the exception of one insulin pen 
specifically designed for users with low vision, all pens have a disclaimer that states a 
person who is sighted should supervise their use. However, CDEs working with people 
with vision impairment have long advocated independent insulin pen use following 
proper instruction.
 
Nutrition Management: Healthy eating — what you eat and how much — is very 
important to managing diabetes. It's a good idea to work with a dietician who specializes 
in diabetes or a CDE to create a meal plan designed for you, and to update it every five 
years.

And you'll want to be able to organize and identify foods in your cupboard or refrigerator. 
Here is where a vision rehabilitation professional can help by teaching you methods of 
organizing your kitchen; identifying foods by using sound, smell and touch; and helping 
to develop a labeling system that works for you. Many tools are available to obtain proper 
food portions, including color contrasting/nested measuring cups; portion-controlled 
serving utensils; and large-display, tactile and talking food scales. Look for the Exchange 
List for Meal Planning, 2003 Edition, a joint publication of the American Dietetic 
Association and the American Diabetes Association, available in print by calling (800) 
342-2383 or visiting www.diabetes.org. It's also available on four-track tape and in 
braille from the National Federation of the Blind Materials Center at (410) 659-9314.

Some Helpful Tips
You can also apply a number of important vision rehabilitation principles — 
organization, contrast, lighting and glare control — to help perform many diabetes-related 
tasks. For example:

--When you test your blood glucose or draw up insulin, place your supplies on a solid 
contrasting surface, or on a tray with a rim or edge. The rim will keep items from getting 
away from you or accidentally falling on the floor.

--Choose a tray color that contrasts with items such as your pills, lancets and blood 
glucose meter. For example, a dark color tray will make light color items more visible 
and easier to use.

--If you're measuring insulin, place the syringe against a white surface such as a wall or 
refrigerator, so that the black plunger tip and syringe markings stand out better.

--Consider a flexible-armed desk lamp for your diabetes tasks area. Overhead lighting is 
usually not sufficient. Position your lamp so that your hand or shoulder does not cast a 
shadow on your work area. 

--Avoid glare by covering any shiny surfaces when using diabetes supplies. If glare is a 
problem when reading the display on a blood glucose monitor, try repositioning the 
monitor or the lamp.

--Consider putting your blood glucose records, food label and other nutrition information 
in an accessible format — in large print, on a cassette tape or on your computer.

--To locate a low vision specialist, or vision rehabilitation agency, visit "Help Near You" 
on www.visionconnection.org or call (800) 829-0500. To locate a certified diabetes 
educator near you, call the American Association of Diabetic Educators at (800) 832-
6874 or visit www.aadenet.org.

It's in Your Hands
Managing your diabetes can feel overwhelming at first. There are many different areas to 
learn about and a variety of products that can help you on a day-to-day basis. But you're 
not alone. While you're the one to decide what level of independence you're comfortable 
with, there are professionals specialized in diabetes care and vision rehabilitation who can 
guide you. Partner with them, make educated decisions — and stay in charge of your life! 

Debra A. Sokol-McKay, MS, CVRT, CLVT, CDE, OTR/L, is an Adjunct Faculty at the 
Pennsylvania College of Optometry's Graduate Program in Low Vision. She is also Chair 
of the Disabilities/ Visually Impaired Specialty Group of the American Association of 
Diabetes Educators.

Coast to Coast: Readers Share Experiences on Spirituality and Coping with Vision 
Loss
In the last issue of Sharing Solutions, we featured an article about the impact of religion 
and spirituality on coping with vision loss, and reported that Lighthouse research findings 
show a strong, positive relationship between spirituality and adaptation to vision 
impairment. Religion refers to adherence to the beliefs and practices of a particular 
denomination, creed or sect. Spirituality is one's sense of life's purpose and meaning, 
transcendence over one's immediate circumstances or a feeling of being connected to the 
larger world.

We asked you to tell us how religion and spirituality have affected your adjustment to 
vision loss. We also inquired about what has helped you participate in your 
congregation's services or social events, what obstacles you encounter and how you deal 
with them. Here's what you had to say.

The Impact of Religion and Spirituality on
Adjustment
Many people described how their faith has helped them adapt to vision loss and to accept 
their situation. For example: "Without my spirituality, I would never have been able to 
cope;" and "Without the Lord's help, I couldn't make it." One person described how faith 
can put people in a positive frame of mind, which can help with acceptance. Others 
shared that faith gives them the ability to carry on: "My faith helps me to know I can 
handle whatever comes my way;" and "God only gives us as many problems as we can 
handle."

When faced with a life crisis, people frequently turn to religion or spirituality for comfort. 
One person commented, "Since I lost my vision, I've gotten much closer to God than I 
was before." Another reminded us that people who experience vision loss often go 
through a grieving process: "Regardless of church or group, spirituality helps a person 
move through the various stages of grief. This can be very helpful."

Other people find positive spiritual experiences outside of religious services — in 
writing, painting, and taking walks and communing with nature, to name a few.

While some expressed angry feelings toward God for allowing vision loss to happen, 
others see God as loving and compassionate, rather than responsible, and as a source of 
guidance. One man told us that God has been protecting him, showing him the way to 
maintain his job despite vision loss. Another said, "God helps me in every way in every 
situation."

The Role of Prayer
In the Lighthouse research study, prayer was frequently mentioned as beneficial in coping 
with vision impairment. This was also true of the responses we received from our readers; 
one described how his prayers for relief of symptoms were answered. Others commented, 
"I pray at night for help. God gives me everything He thinks I need;" and "I find that 
when I get very frustrated and cannot find things, prayer calms me down and somehow I 
find what I was looking for. Maybe it is God helping me." In addition, one reader told us 
that her Buddhist beliefs, emphasizing happiness and meditation, were particularly 
helpful.

How Congregations Help
Several people described how their involvement with their congregation has been a 
source of support in their adjustment to vision loss, including one person who said, "I feel 
better when I go to church and mix with friends rather than stay home and dwell on my 
ailments. It helps me to have a positive attitude." Here's a sampling of your experiences, 
demonstrating that numerous congregations are interested in supporting and including 
people with impaired vision:

--music, hymnals, bibles, devotionals and bulletins are made available in large print and 
braille, and on audiocassette

--sermons are audiotaped and sent to congregants who cannot attend services

--hymn texts are projected onto a large screen in reverse contrast

--transportation to services, bible study and social events are provided through the 
congregation or its members

--spiritual leaders visit and minister to people at home

--fellow congregants are receptive and encouraging when needs are expressed

Things You Can Do
You made a number of suggestions that may help others better understand your needs and 
enable you to stay connected:

--talk to your spiritual leader about your vision loss and what can be done to ensure your 
continued participation

--provide helpful tips so congregation members will better understand how to interact 
with people who are visually impaired, such as asking people to identify themselves and 
to let you know when they're leaving the room

--suggest an educational program on vision loss for your congregation, featuring a 
speaker from your local vision rehabilitation agency — and consider talking about your 
own experiences with vision loss

For many people who have made spirituality and religion a part of their lives, their faith 
has been a positive influence on their adjustment to vision loss. In addition to being a 
source of support and comfort, faith can broaden your circle of friends by linking you to 
other community groups. We hope that the ideas and experiences shared in this article 
will stimulate discussion in your support network. For organizations providing accessible 
religious resources, visit www.visionconnection.org/spirituality or call (800) 829-0500. 
Special thanks to Mark Brennan, PhD, for his input. 

A Lighthouse Charitable Gift Annuity Can Provide You with a Guaranteed Income 
for Life — And Help Fund Important Resources Like Sharing Solutions
A charitable gift annuity is both a wise investment that can increase your cash flow and a 
way to make a meaningful contribution to the Lighthouse to help support resources for 
people with impaired vision around the country.

You can
--increase your income by receiving a fixed and guaranteed rate of return; depending on 
your age, your rate of return can be twice the rate offered by CDs

--receive tax benefits

--lock in an excellent annuity rate, protecting you from the investment volatility of the 
stock and bond markets

Sample Rates of Return
Age 65 Rate 6.0% 
Age 75 Rate 7.1%
Age 85 Rate 9.5%
Age 90+ Rate 11.3%

Learn more!
Please complete the form below and return it to: Robin A. Phillips, Esq., Director of Gift 
Planning, Lighthouse International, The Sol and Lillian Goldman Building, 111 East 59th 
Street, New York, NY 10022-1202. You can also call Robin at (212) 821-9432.

In addition, you can use the enclosed envelope
to make a contribution to the Lighthouse.
Name: 
Date of birth:
Address:
City: 
State: 
Zip:
Telephone: 
Best time to call:
Name of 2nd beneficiary (if any):
 Date of birth:

Please send me more information about Lighthouse gift annuities!

Thanks for sharing …
Deanna Austin, Program for Visually Impaired Adults Support Group, IN; James 
Berglund II, CA; Charles Blood, Middletown Area Visually Challenged Peer Support 
Group, NJ; Joseph Bonanno, NJ; Betty Cain, Low Vision Support Group MAX II, SC; 
Nancy Cross, NC; Joan Elsner, NY; Janet Hargreaves, Sebastopol/Santa Rosa Macular 
Degeneration Support Group, CA; John McElheron, The Way We See It Support Group 
and Mecosta County Low Vision Peer Support Group, MI; Leona Saltzman, South 
Central Nebraska VIPS, NE; Linda Scribner, League for the Blind and Disabled Support 
Groups in Auburn, Decatur, LaGrange and Fort Wayne, IN; Karolina Smiley, Montcalm 
County Visually Impaired Support Group, MI; Frank Vance, Getting Your Self Together 
Support Group, AZ; Delores Wussler, Insight Support Group, FL

To get in touch with people who shared their experiences, call Carol Sussman-Skalka at 
(212) 821-9481 or e-mail her at sharingsolutions@lighthouse.org.

Support Sharing Solutions — Log on to www.lighthouse.org
and click on "Donate Now"

Sharing Solutions

Cynthia Stuen, DSW
Senior Vice President for Education

Carol J. Sussman-Skalka, CSW, MBA
Newsletter Editor

Laurie A. Silbersweig
Director of Editorial Services

Jaine M. Schmidt
Vice President of Creative Services

Photos by: Dorothea Anne Lombardo, Judith Moderacki

This newsletter is available in alternate formats and on our Web site: 
www.lighthouse.org. To add your name to our mailing list, e-mail us at: 
sharingsolutions@lighthouse.org.

Lighthouse International
Tara A. Cortes, RN, PhD
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
The Sol and Lillian Goldman Building
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
© 2005 Lighthouse International