Tips For The Newly Blind Diabetic
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 and 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 these 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 seventeen 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 shots a day. Prior to this I had put minimum energy into diabetes care and this new regiment 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 some vein growth in my right eye and that made me take my diabetes even 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. In 1995 I was very content with life.
In a matter of two very short years I had innumerable laser treatments and four surgeries to treat my retinopathy. Yet in late 1997 I became totally blind. I was forced into a completely unfamiliar world and was very frightened. Shortly thereafter I lost my job and sank into a state of deep depression.
This tale may sound familiar to many readers. Diabetes is the leading cause of blindness in the world today and presents what at first may seem like 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 some self-confidence and help in acquiring the necessary skills to manage your diabetes and your life, you can overcome this latest challenge. What follows is a brief discussion of some important topics that will help you regain control.
The first thing that you need to do is get a letter from your ophthalmologist stating your current vision level and prognosis. While it is important to hold onto optimism if you are losing your sight, it is beneficial to you to get assistance as soon as possible. You do not have to be totally blind to initiate action. With your doctor's letter you can contact your state's department of blind services. Different states have different names for this agency. You will need to inquire about and be diligent in your requests for assistance. Your state agency should provide you with the training and materials you will need for your new life. These should include home skills, mobility instruction, Braille instruction, medical assistance and vocational rehabilitation training. Not all state blind agencies are the same and you must be proactive in procuring the help you require.
Your next concern is management of your diabetes. We are all very fortunate that there have been some creative blind diabetics and progressive technology companies that have invented excellent adaptive equipment. For independent blood glucose monitoring there are several voice-synthesizers that can plug into certain glucometers and announce the meters' reading. The voice-synthesizers range in price from $150 to $450 and most insurance companies will cover them as durable medical devices. Talk to your doctor or endocrinologist about where to get one or see the references at the end of this article. It should be noted that not all blood glucometers work with voice-synthesizers and you might need to obtain a new meter. I use a Lifescan One Touch fairly successfully. It is somewhat difficult to get enough blood in the right spot on the test strip, but with practice it gets easier. There are guides you can purchase to address this problem but I get by without one. Recently Accuchek has come out with the Voicemate that has a meter and voice-synthesizer together as a portable unit. It also reads strip codes and insulin vials for Eli Lilly insulin but no others. Hopefully other companies will add these features as well and allow the visually impaired diabetic complete independence in blood sugar testing.
Insulin measurement is easier than you may think. If you still have useable sight there are several magnifiers available that allow you to read the syringe. Or you can use a regular magnifying glass. Since I have no sight I use a Count-a-Dose which allows the use of one or two insulin types and has a wheel that clicks once for each unit you pull into the syringe. It is easy to use and is reliable, accurate and reproducible. They are available from many mail order catalogues and medical supply stores.
As far as following your diet, nothing has changed. You will need to be creative in thinking about how to do your cooking but there is no cooking process that a blind or visually impaired 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. You will want to use large oven mitts so you don't accidentally burn yourself in the oven. Measuring cups with raised numbers will help you tell which is which. There is also a device called a "Say When" that uses a 9 volt battery and hangs over the side of a cup. As you fill the cup it beeps about a half-inch from the top to let you know it's full. With these few tools and a good appetite you will be experiencing fine cuisine in no time.
Several years ago I incorporated exercise into my daily routine. I found this to be beneficial for both my physical and mental health. Exercise is a little more challenging for the blind person but you must have a positive attitude and be creative. 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, rock climbing and taking martial arts. The key is a desire to improve your health and a willingness to try.
The SensoCard Plus helps people who are blind or visually impaired by reading out blood glucose level results. For more information contact CDX Diagnostics: in the UK, Telephone: 0191 564 2036 or click here to visit the CDX Diagnostics web site: www.cdx.uk.com
The National 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.
A really easy way to mark and distinguish between medications, cans and a variety of other objects is to use rubber bands, tape 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 and recorder. There are many brands available in the $20 to $40 price-range. I have used mine for recording my blood sugar results as well as 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 software, computers are readily utilized by blind and visually impaired people every day. I also use a scanner to scan in text from books and mail. The scanned image can then be converted into a format that allows the computer to read it. Your state agency may supply you with a computer and other adaptive equipment--be sure to request it. If they won't purchase one, you should consider buying it for yourself. There are many grant programs out there from groups like the Lyons Club so you may need to do some investigating.
The stress induced by the newness of being blind can cause havoc with your blood sugars. There is a wide range of emotional impact associated with the onset of blindness to a sighted individual. It is important not to be too hard on yourself. You will progress through the many new challenges, but it will take time. Try to maintain realistic expectations for yourself throughout your recovery. It will take a while as you will need to grieve the loss of your sight. But as you acquire the necessary skills, your confidence and independence will grow.
A great way to feel better about your vision loss and to alleviate those feelings of self-pity and hopelessness is to find and join a support group. 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 that blindness had presented to them. Most consider their loss of vision as little more than a nuisance. Many members have shared their stories and tips with me and have helped me to realize that I can not only regain my independence but 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 companies that offer a wide variety of products for blind and visually impaired people. This is where you can find many adaptive devices, including the Count-a-Dose and several voice synthesizers for glucometers.
104 Anderson Avenue
Manchester, SD 57353-5702
Phone: (605) 546-2366
FAX: (605) 546-2212
Website:Ferguson Enterprises: http://www.fergusonenterprises.com/.
L S and S Group
PO Box 673
Northbrook IL 60065
Toll free: (800) 468-4789
Website: L S and S Group: http://www.lssgroup.com.
Independent Living Aids
200 Robbins Lane
Jericho, NY 11753
Phone: (516) 937-1848
FAX: (516) 937-3906
Toll free: (800) 537-2118
Website:Independent Living: http://www.independentliving.com/.
111 East 59th Street
New York, NY 10022-1202
Phone: (212) 821-9200 (212) 821-9713(TTY)
Toll free: (800) 829-0500
Website:Lighthouse International: http://www.lighthouse.org/.
From Roche Diagnostics is the Accucheck Voicemate glucometer that boasts easy capillary action, reads vial of insulin and code number on test strips, To find your local contact information, go to this website and select your home country: Roche Global: http://diabetes.roche.com/. The following contact information is for the company's main headquarters in Germany:
Roche Diagnostics GmbH
Communications & Public Relations
D-68305 Mannheim Germany
Phone: (++) 49 621 75 90
Fax: (++) 49 621 795 28 90
No email, but the website has a feedback form you can fill out; they will return email you.
Website (homepage): Roche Diagnostics: http://www.roche.com/diagnostics/ .
The American Printing House for the Blind offers many products as well as many books and magazines in Braille and cassette.
1839 Frankfort Avenue
Louisville, KY 40206-0085
Phone: (502) 895-2405
Fax: (502) 899-2274
Toll free: (800) 223-1839
Website:American Printing House: http://www.aph.org.
The National Center of the Blind, home of the National Federation of the Blind, has people and resources to help with most blind and low vision issues. The NFB materials center, which can also be reached at the phone number below, offers many books and informative material in large print or on cassette. I highly recommend that newly blind persons request a catalogue and a copy of "If Blindness Comes". This book is an excellent resource for blind people and their family members. It covers how to do things as a visually impaired person including, mobility, cooking, sewing, civil rights, social security disability and more.
National Federation of the Blind
1800 Johnson Street
Baltimore, MD 21230
Phone: (410) 659-9314
Website: National Federation of the Blind: http://www.nfb.org/default.htm.
The National Library of Congress has affiliates in every state and provides free material such as books, magazines, periodicals and newsletters. For more information, go to National Library Service (Library of Congress): http://www.loc.gov/nls/.
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 is very thorough in coverage of all aspects of diabetes care. It is available in English and Spanish versions. Contact the RRTC for more information.
Rehabilitation Research and Training Center
PO Drawer 6189
Mississippi State University
Mississippi State, MS 39762
Phone: (662) 325-2001 (662) 325-8693(TDD)
Fax: (662) 325-8989
Website:Rehabilitation Research and Training Center: http://www.blind.msstate.edu.
Dr Kuell's original article has been updated to include current websites and email addresses (June 2004; Maria Delgado), May 2005 Michael McCarty.
"Serving Individuals with Diabetes Who are Blind or Visually Impaired: A Resource Guide for Vocational Rehabilitation Counselors" is a work produced by The National Federation of the Blind, in collaboration with The Rehabilitation Research and Training Center (RRTC) on Blindness and Low Vision at Mississippi State University. This guide is very thorough in coverage of all aspects of diabetes care and is also available in Spanish. This and other publications are available for ordering online from the Center's website.
Rehabilitation Research and Training Center on Blindness and Low Vision
Mississippi State University
P.O. Drawer 6189
Mississippi State, MS 39762
by Gail B. Stewart
Discusses the history, nature, causes, symptoms, diagnosis, treatment, and complications of diabetes. Emphasizes proper medication and a healthy diet. (Grades 5-8+)
Catalog Number: T-N1374-60
Click this link to purchase the book Diabetes.
American Printing House for the Blind, Inc.
1839 Frankfort Avenue
Mailing Address: P.O. Box 6085
Louisville, Kentucky 40206-0085
Toll Free: 800-223-1839
Web site: http://www.aph.org
APH Shopping Home: http://shop.aph.org
Book On Diabetes in Braille
By Carl Augusto
For people who read braille, and just found out they have diabetes, there's a book you should know about called My Pocket Doctor Diabetic Reference Guide and Journal. According to the information we received, the book is "bound to answer any questions that a newly diagnosed diabetic would ask." With diabetes on the rise, there are a lot of people looking for good resources on blood glucose testing, insulin facts, medications, diet and exercise, etc. Though we haven't yet seen a copy, it sounds like it could be a very useful book.