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.