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Tips for the Newly Blind Diabetic
by Chris Kuell
Ever notice how life is a never-ending source of challenges? For me, things started to get tough when I was diagnosed at age 9 with insulin-dependent diabetes. Otherwise, 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 was put on two insulin shots daily. Before this, I put minimum energy into diabetes care, so this new regimen proved a difficult adjustment. Suddenly diabetes was a larger factor in my everyday life. I carried on grudgingly, through high school and college.
In graduate school, I started having diabetic retinopathy (abnormal blood vessel growth) in my right eye. That made me take my diabetes more seriously, and I was more diligent about blood sugar control. 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 worldwide, and it presents what at first may seem an insurmountable challenge. The initial impact is the hardest, the mind fills 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 help in acquiring the necessary skills to manage your diabetes and your life, you can overcome this challenge. What follows is a brief discussion to help you regain control.
When you find yourself losing vision, confirmed by medical examination, it is time to avail yourself of services offered to legally blind people. While it is important to hold on to 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.
Once certified as legally blind, you can contact your state's department of blind services. Note: 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 instruction in home management, mobility, braille and vocational skills. 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, which plug into certain glucose meters and speak the meter's readings. These units range in price from under $200 to about $500. Medicare and most insurance companies will cover them as durable medical equipment. Talk to your doctor or endocrinologist about where to get one.
I use the Accu-Chek Voicemate, a single-unit meter and voice synthesizer. This unit, made by Roche Diagnostics, talks the user through the test procedure, speaks the test result and reads bar-coded Eli Lilly insulin vials. 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 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.
A really easy way to mark and distinguish between medications, cans and a variety of other items is to use rubber bands and paper clips. Use your imagination to come up with a system that works for you. A very handy note-taking tool is a micro-cassette player/recorder. There are many brands available in the $20 to $40 price range.
I have found the computer to be an invaluable tool for communication and 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 the agency won't purchase one, you should consider buying a computer for yourself.
The National Library Service for the Blind and Physically Handicapped (NLS) provides a great service for blind and low vision people through its recorded books program. You can get a four-track cassette player on free loan and choose from thousands of books and magazines, mailed conveniently to your home.
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 a blind person, but have a positive attitude and be creative. I have a treadmill that allows me to get my heart pumping safely and easily. Some other suggestions are calisthenics, weight lifting, aerobics, swimming and using a Stairmaster. I have heard of blind people who run track and take martial arts. The key is a desire to improve your health and a willingness to try.
The stress induced by the onset of blindness can cause havoc on your blood sugar levels. A wide range of emotions 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.
I believe the key to success in this life is maintaining a positive attitude. I know many blind people who shared stories and tips with me, and have helped me to realize that I cannot 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.
There are many mail order 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 aids for coping successfully with blindness and diabetes.
Web site: www.lssproducts.com
Web site: www.lighthouse.org
Independent Living Aids
Web site: www.independentliving.com
Roche Diagnostics (Accu-Chek Voicemate)
Web site: www.accu-chek.com
American Printing House for the Blind
Web site: www.aph.org
APH offers books and magazines in braille and cassette formats and many of the tools for alternative literacy and life without sight.
National Library Service for the Blind and Physically Handicapped
Library of Congress
Web site: www.loc.gov/nls
The Diabetes Action Network, a division of the National Federation of the Blind, publishes an informative newsletter, VOICE OF THE DIABETIC. Many other useful publications in alternative formats are also available. Call 410-659-9314 or visit www.nfb.org/diabetes.htm for information.
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