Newly Blind Diabetic

Newly Blind Diabetic

TIPS FOR THE NEWLY BLIND
DIABETIC

by Chris Kuell

Did you ever notice how life is an endless
source of challenges? For me they started when I was nine and was diagnosed
with insulin dependent diabetes. They haven't stopped since. It wasn't too difficult
to master drawing up my shots and taking my injections. Back in 1972, testing
my urine with those bubbling tablets and cool test tubes wasn't a huge inconvenience.
Aside from that I was pretty much like most other kids, growing up with sibling
rivalry, homework, girls and all the traumas of the teenage years.
At 17, I went to the Joslin Clinic in
Boston, and for the first time was treated by knowledgeable specialists, who
encouraged me to eat smaller, healthier portions and take two insulin shots
a day. Prior to this I had put minimum energy into diabetes care, so this new
regimen proved a difficult adjustment. Suddenly my diabetes was a larger factor
in my everyday life. But I carried on grudgingly, through high school and college.
In 1989, while in graduate school, I
started having diabetic retinopathy, abnormal blood vessel growth, in my right
eye. That made me take my diabetes more seriously. I kept better track of my
blood sugars and my diet, and carried on with both the wonderful aspects of
life and the hurdles. I married, found a great job, had two wonderful kids and
bought a nice home in the suburbs. By 1995, I was very content with life.
But the retinopathy, a common complication
of diabetes, continued to progress. In a matter of two very short years I had
innumerable laser treatments and four surgeries to treat the condition, and
hopefully save my sight. They were unsuccessful, and in late 1997 I became totally
blind. Forced into an unfamiliar world, I was very frightened. Shortly thereafter
I lost my job and sank into a state of deep depression.
This may sound familiar to many readers.
Diabetes is a leading cause of blindness world-wide, and presents what at first
may seem an insurmountable challenge. The initial impact is the hardest, the
mind filling with questions like "How can I possibly take care of myself?"
and "What's to become of me?" Let me assure you that many people have
faced these issues and conquered all the difficulties. With self-confidence,
and some help in acquiring the necessary skills to manage your diabetes and
your life, you can overcome this challenge. What follows is a brief discussion,
of some important topics, to help you regain control.
When you find yourself losing significant
vision, and that fact has been confirmed by medical examination, it will be
time to avail yourself of the services offered to the legally blind. While it
is important to hold onto optimism, if you are losing your sight it helps to
get assistance as soon as possible. You do not have to be totally blind to initiate
action--your sight loss must merely meet a legal standard. Who can formally
certify you as "legally blind?" Any Doctor of Medicine (MD), of Osteopathy
(DO), any Optometrist, Registered Nurses, professional staff of hospitals, agencies,
and institutions (social workers, rehabilitation teachers and counselors); and
where such professionals are not available, members of organizations such as
the National Federation of the Blind (NFB), or even professional librarians.
With such certification, you can contact your state's department of blind services
and initiate action. (NOTE: Different states have different names for this agency.)
You will need to be diligent in your
requests for assistance. Your state Blindness Rehabilitation agency should provide
you with the training and materials you need for your new life, including: Home
skills, mobility instruction, Braille instruction, and vocational rehabilitation
training. Not all state blind agencies are the same, or offer the same services.
You'll need to persevere in seeking the help you require.
Your next concern is management of your
diabetes. We are all very fortunate that some creative blind diabetics and progressive
technology companies have invented excellent adaptive equipment. For independent
blood glucose monitoring, there are voice synthesizers that can plug into certain
glucose meters and speak the meter's readings. These range in cost from under
$200 to about $500, and both Medicare and most insurance companies will cover
them as Durable Medical Equipment. Talk to your doctor or endocrinologist about
where to get one, or contact the Diabetes Action Network of the National Federation
of the Blind (telephone: 573-875-8911). I have included a few references at
the end of this article. NOTE: Not all blood glucose monitors work with voice
synthesizers--you might need to obtain a meter that does.
I use a LifeScan One-Touch Profile, one
of the monitors that can be adapted for speech, fairly successfully. It can
be somewhat difficult to get enough blood in the right spot on the test strip,
but with practice it gets easier. There are "finger guides" you can
purchase to address this problem, but I get by without one. But there are other
talking blood glucose monitors.
Recently Roche Diagnostics has come out
with the Accu-Chek Voicemate, a meter and voice synthesizer together as a single,
portable unit. This unit, which talks the user through the test procedure and
"reads" the results also reads bar-coded Eli Lilly insulin vials,
and offers other features that make it the best adaptive glucose monitor for
the blind available today.
Insulin measurement is easier than you
may think. If you still have useable sight, there are several magnifiers available
to help you read the syringe, or you can use a regular magnifying glass. Since
I have no sight, I use a Count-a-Dose, a tactile insulin measuring device that
allows the use of two insulin types and has a wheel that clicks once for each
unit you pull into the syringe. I find it easy to use, reliable, and accurate.
With diabetes, it is critical to follow
your diet. Without sight, you will need to be creative in thinking about how
to do your cooking, but there is no cooking process that a blind person can't
do. If you have an electric stove you may want to mark the dial at low, medium,
and high heat settings, with tactile ink. I use a gas stove, and I put my hand
well above the flame and adjust it down after it has ignited. You may also want
to get a timer or an audible pocket clock to keep track of how long you have
cooked things.
Several years ago I incorporated regular
exercise into my daily routine. I found this beneficial for both my physical
and mental health. Exercise can be a little more challenging for the blind person,
but have a positive attitude and be creative--it is doable! I have an inexpensive
treadmill that allows me to get my heart pumping safely and easily. Some other
suggestions are calisthenics, weight lifting, aerobics, swimming, or using a
Stair-Master. I have even heard of blind people running track and taking martial
arts. The key is a desire to improve your health and a willingness to try.
The National Library Service for the
Blind and Physically Handicapped (NLS), part of the Library of Congress, offers
a great service to blind and physically handicapped people through its recorded
books program. You can get a four-track cassette player on free loan and nearly
any book you want mailed conveniently to your home. While I strongly recommend
that any newly blind person learn Braille, this service helps to fill the void
where reading was once before. (NOTE: See references at the end of this article
for ways to reach the NLS.)
A really easy way to mark and distinguish
between medications, cans and a variety of other objects is to use rubber bands
and paper clips. Use your imagination to come up with a system that works for
you. When you get some skill with Braille you will find Braille labels to be
invaluable, but you need alternatives in the meantime. A very handy note-taking
tool is a hand held micro-cassette player/recorder. There are many brands available
in the $20 to $40 price range. I have used mine to record my blood sugar results,
phone numbers, messages, and daily to-do lists.
I have found the computer to be a valuable
tool for communication and for obtaining, storing and retrieving information.
While computers can be quite intimidating, new technology makes them easier
to use than ever. Adapted with screen-reading speech software, computers are
readily utilized by blind people every day. Your state agency may supply you
with one--be sure to request it. If they won't purchase one, you should consider
buying it for yourself. Talk to the NFB about adaptive computers; the National
Center has experts to advise you.
The stress induced by the onset of blindness
can cause havoc with your blood sugars. A wide range of emotional impact can
follow the arrival of blindness. Don't be too hard on yourself--it is something
to work through. You will progress through the many new challenges, but it will
take time. Try to maintain realistic expectations for yourself throughout your
recovery.
The greatest factor for me in coming
to grips with my blindness was meeting with members of the National Federation
of the Blind. I met truly inspirational blind people who had overcome the problems
blindness had presented to them. Most consider their loss of vision as little
more than a nuisance. Many members have shared stories and tips with me, and
have helped me to realize that I can not only regain my independence--I can
succeed at whatever I want. I have learned that it is respectable to be blind,
and, while I'm in no hurry, I feel ready to take on the next challenge.
A Brief Resource Guide:
There are many supply companies that
offer a wide variety of products for blind and visually impaired people. Here
are a few that offer the Count-a-Dose, voice synthesizers for glucose meters,
and other supplies for blindness and diabetes. Catalogues can be obtained by
calling:
Beyond Sight: (303) 795-6455
L S and S Group: 1-800-468-4789
The Lighthouse: 1-800-829-0500
Independent Living Aids: 1-800-537-2118
From Roche Diagnostics comes the Accu-Chek
Voicemate, a glucose monitor that boasts a new, easy-to-use test strip, reads
vial of (Lilly) insulin, and sets the code number on test strips, all without
sighted aid. (Telephone: 1-800-428-5076.)
The American Printing house for the Blind
(telephone: 1-800-223-1839) offers many books and magazines in Braille and cassette,
and many of the tools for alternative literacy and life without sight. Their
website is www.aph.org
The National Center for the Blind, home
of the National Federation of the Blind (NFB, 1800 Johnson Street, Baltimore,
MD 21230), has people and resources to help with most blindness and low vision
issues. Telephone: (410)-659-9314, or visit the NFB website at <www.nfb.org>.
The NFB Materials Center offers many books, pamphlets and articles in large
print, Braille, or on cassette. I highly recommend all newly blind persons request
a catalogue and a free copy of "If Blindness Comes." This book (available
in large print or audiocassette) is an excellent resource for blind people and
their family members. Its contents include: mobility, cooking, sewing, civil
rights, social security disability and more.
The National Library Service for the
Blind and Physically Handicapped (NLS), part of the Library of Congress (800-424-9100)
has affiliates ("Regional Libraries") in every state, and provides
free material such as books, magazines, periodicals and newsletters. These Regional
Libraries also administer the free tape player loan program for the legally
blind.
"Serving Individuals With Diabetes
Who Are Blind or Visually Impaired" is a book by the NFB and Mississippi
State University Rehabilitation Research and Training Center on Blindness and
Low Vision. This book, available in large print, Braille, or music-speed audiocassette,
is very thorough in coverage of all aspects of diabetes care. It is priced at
$25, and can be ordered by calling Kelly Schaefer at 601-325-1363. A Spanish-language
version is also available, in large print and audiocassette.