Voice of the Diabetic
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VOICE OF THE DIABETIC
The Diabetes Action Network of the
National Federation of the Blind
A Support and Information Network
Volume 17, Number 1, Winter Edition 2002
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VOICE OF THE DIABETIC, published quarterly, is the national
magazine of the Diabetes Action Network of the National Federation of the Blind.
It is read by those interested in all aspects of blindness and diabetes. We
show diabetics that they have options regardless of the ramifications they may
have had. We have a positive philosophy and know that positive attitudes are
contagious.
News items, change of address notices, and other magazine correspondence
should be sent to: Ed Bryant, Editor, Voice of the Diabetic, 1412 I-70 Drive
SW, Suite C, Columbia, Missouri 65203; Phone: (573) 875-8911; Fax: (573) 875-8902.
Find us on the World Wide Web at: http://www.nfb.org and follow
the links for "diabetes."
Copyright 2002 Diabetes Action Network, National Federation
of the Blind. ISSN 1041-8490
Note: The information and advice contained in VOICE OF THE DIABETIC
are for educational purposes, and are not intended to take the place of personal
instruction provided by your physician, or by your health care team. Discuss
any changes in your treatment with the appropriate health professionals.
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WE'VE MOVED
Effective immediately, the Diabetes Action Network, and the
VOICE OF THE DIABETIC editorial office, have relocated.
Our new address:
DIABETES ACTION NETWORK
NATIONAL FEDERATION OF THE BLIND
1412 I-70 Drive SW, Suite C
Columbia, MO 65203
(573) 875-8911
fax: (573) 875-8902
All VOICE correspondence (inquiries, subscriptions, address
changes, article submissions) should now come to this new address.
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INSIDE THIS ISSUE
NIKKI AND HER INSULIN PUMP
by Julie DeFruscio ....
ASK THE DOCTOR
by Wesley W. Wilson, MD .....
NEW KIDNEY FAILURE RESEARCH ....
WALKING FOR A CURE
by Meg Dixit ....
MAIL ORDER DIABETES DRUGS SAVE MONEY
by Michael J. Pirages .....
TALKING BLOOD GLUCOSE MONITORING SYSTEMS
by Ed Bryant .....
HOPE OF BLINDNESS CURE ....
BOOK REVIEWS
by Marilyn Helton ....
FOOD FOR THOUGHT ....
HEALTH LITERACY: THE UNSEEN PROBLEM ....
ASK JANIS
by Janis Roszler .....
DIALYSIS AT NATIONAL CONVENTION
by Ed Bryant .....
WHAT YOU ALWAYS WANTED TO KNOW
BUT DIDN'T KNOW WHERE TO ASK
(Resource Column) .....
GLUCOWATCH AVAILABILITY
RECIPE CORNER ......
IF YOU EXERCISE AND USE INSULIN, THEN PUMP IT!
by Sheri Colberg, PhD ....
NEW TECHNIQUES TO TREAT FOOT ULCERS ....
A PROACTIVE APPROACH TO REDUCING DIABETES
by Peter J. Nebergall, PhD ....
INDEPENDENCE AND THE NECESSITY FOR DIPLOMACY
by Marc Maurer ....
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NIKKI AND HER INSULIN PUMP
by Julie DeFruscio
Photo: Portrait. Caption: Julie and Nikki DeFruscio.
From the Editor: Although insulin infusion therapy (the insulin
pump) is known to be effective, unobtrusive, and perhaps the closest thing to
a healthy pancreas available at this time, how early can it be started? The
author knew the benefits of pump therapy - but her diabetic daughter was a toddler.
This is the story of a three-year old and her pump, and just
incidentally the story of a new company set up to supply clothes for very young
pump users.
Our daughter Nikki Tyler DeFruscio was diagnosed on June 19, 2000 with Juvenile
(type 1, insulin-dependent) Diabetes. Like so many other families, this was
the day our lives and the lives of our family changed forever.
One day we were a happy well?adjusted family and the next we
were struggling with the highs and lows of managing this illness. Our family's
life was basically on hold while we tried to revolve everything around Nikki's
diabetes. I mention this because I think it is important to recognize the siblings
in a family of a diabetic child are very much affected. Nikki has two brothers
who have had plans canceled, games missed, or needed to participate in events
without one of their parents being able to attend. As their parent, I think
this has hurt just as much as Nikki having diabetes.
We became a family that counts every carb, measures all Nikki's
food and constantly tried to predict when the insulin would peak and how much
food Nikki should be eating. We also were dealing with the very unpredictability
of a 2 ½ year old Nikki Tyler. One minute she would want to eat and the
next she would refuse to eat. We were on an emotional roller coaster with no
end in sight.
I would become very frustrated when Nikki's HbA1c's would go
up rather than down, and I would take her numbers as a personal reflection on
my ability to control her diabetes. Grasping for support, I started to attend
local support group meetings, trying to gather as much information about diabetes
as I could, anything out there that could help us.
We discovered that many children in the 10 to 12 age group were using insulin
pumps. Their parents, I found, were reporting better BG numbers and greater
flexibility in their lives. So when I took Nikki to her next doctor's visit,
I inquired about the insulin pump. At that time the doctor we were seeing would
only put older children on the pump. Everything I read and everything I was
told led me and my husband to believe that we could gain better glucose control
with Nikki on an insulin pump. Why should we have to wait until she was 10 years
old? For us that would be seven years away. Seven years of this emotional roller
coaster. Seven years of blaming ourselves because we just could not bring the
numbers under control. After a lot of thought, investigating and consulting
with other parents, we decided to switch doctors.
When we first went to the new doctor, we mentioned the pump
but didn't really pursue it. Then came Nikki's next three?month checkup, and
her numbers had climbed yet again. This time our doctor asked us if we were
still interested in going on the pump. When we said yes, she told us she would
be willing to work with us to get Nikki on the pump.
The first thing I did was to have the pump rep come to our home
and put me on a pump, with saline solution instead of insulin. I wanted to know
what it would be like -- and what kind of pain Nikki would be feeling during
an infusion site change. This really helped us make the transition for Nikki.
Nikki watched me wear the pump for two weeks. My wearing the pump made Nikki
want one too! Of course she had no idea what it really would mean. For her just
knowing mommy was wearing it was enough.
Finally it was her turn to try it. We had Nikki on the trial
saline solution for close to three weeks. We then started with the insulin.
I have to say Nikki adjusted to wearing an insulin pump in a matter of a week.
It took me much longer. It was like when she was diagnosed,
all over again. At first we had good numbers, then we had high numbers, we had
alarms go off on the pump, then we had infusion sites come out, and I almost
want to say we came across just about every problem you could think of all within
our first three months.
One of the most difficult problems for us was where to put the
pump. At three years old we didn't want Nikki to have access to the pump, yet
I wanted her to be able to look like a kid and be able to wear all her pretty
dresses, the outfits she liked so much.
The pump rep had given us a very medical looking harness to
hold the pump. This item looked terrible and was not acceptable to Nikki, or
to me. I still remember the first day I put this harness on her. I cried all
day. On top of dealing with all the pump mechanics we had to look at our beautiful
daughter wearing this very medical looking item.
So I started having a friend take Nikki's favorite t?shirts and put pockets
on the back of them. This gave me easy access to the pump, and Nikki could wear
what ever she wanted and still wear the pump. When you now look at our daughter,
and if she is wearing one of our undershirts, you don't even know she is on
an insulin pump. This made my best friend and me think: "why should Nikki
and every other child wearing an insulin pump have to wear unattractive items?"
Why items that call attention to the fact that she has to wear this pump for
life support?
Why not make wearing insulin pump a positive experience for
children and for their parents? Why not offer parents a place where they can
show their children items that will hold their insulin pump -- and look fun
and cool?
That's the reason for us creating Pump Wear, Inc., www.pumpwearinc.com.
It's a company where we want kids to be kids. These children and families already
have so much going on in their lives they shouldn't have to deal with where
to hold an insulin pump.
Today Nikki Tyler is enjoying better BG numbers, greater flexibility,
and our family finally feels like it has some control on the situation. Yes,
we still have our ups and downs, but the insulin pump has given us a way to
control those ups and downs. It's allowed us a freedom we thought we had lost
forever. If Nikki wants to sleep in the morning, we can now let her. If Nikki
doesn't want to eat at 11:30, she doesn't have to. If Nikki wants to have cake
at her brother's birthday party, she now can. The insulin pump is allowing us
to gain better control for Nikki, now, so hopefully in 10 years we can avoid
complications we all fear. We are so thankful to our wonderful doctor and our
diabetes educator for giving our daughter and family the opportunity to bring
back some normalcy into our lives.
It's important to note life on the insulin pump is not the answer
to Juvenile Diabetes, and we still have plenty of ups and downs. A small child
like Nikki has to be tested even more often on the pump, to ensure we don't
hit lows and highs. Anyone thinking the insulin pump is the answer or cure for
Juvenile Diabetes will sadly be mistaken.
However if you are a parent or caretaker willing to put in the
time and dedication needed to make the pump successful, I have no doubt you
will be pleasantly surprised at the results. The insulin pump has afforded us
better control, flexibility and allowed us to recover something very precious
to us: our life as a family.
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ASK THE DOCTOR
by Wesley W. Wilson, MD
Artwork: medical caduceus.
NOTE: If you have any questions for "Ask the Doctor," please send
them to the VOICE editorial office. The only questions Dr. Wilson will be able
to answer are the ones used in this column.
Wesley W. Wilson, MD has retired as an Internal Medicine practitioner
at the Western Montana Clinic in Missoula, Montana. Dr. Wilson was diagnosed
with type 1 diabetes in 1956, during his second year of medical school. He remains
interested and involved in diabetes education for patients and professionals.
Q: I run a diabetes support group, and two of the participants are a husband
and a wife (he has type 1 and she has type 2). Is there any reason the two of
them cannot test their blood with the same meter?
A: I appreciate your involvement with a support group for persons
living with diabetes, as there are lots of questions and uncertainties for all
of us with sugar problems. Your question seems simple, but is more complicated
because of some nondiabetic concerns. These days, there is great concern about
any blood contact between persons. It would seem entirely possible to share
a meter and not share a lancet device (after all, you would not share a needle).
Even more important to me, I feel that each person with diabetes should "marry"
their glucose meter and carry it with them at all times, even if they are not
taking insulin. It is important to check blood sugars before driving a car,
or if you feel "strange." Blood sugar should be tested before each
meal, or if there is more than usual exercise. Several of my former patients,
who were not insulin-using, often felt "weak" by the time they'd finished
nine holes of golf. After testing, discovering they were "low" by
the eighth hole, they took action, felt better, and lowered their strokes for
the final holes.
I would be surprised if the husband and wife were always at
the same place prior to meals or prior to driving a car, so I think it is important
for each person to have their own device. Another reason for each person to
have a private meter is that meters now have memory function, and some can "average"
the test results. That would be difficult to differentiate if the meter is used
by two people. I don't think you should be satisfied with a "family average."
It is certainly possible for two persons to share a meter, but not share anything
that would allow direct blood contact between users, such as the lancet used
to obtain the blood samples. I do feel, however, since the main expense of blood
glucose testing is the strips, and the meter itself is usually inexpensive or
supplied at no charge, I feel a marriage is in order, and it's not fair to share
partners.
The meter should accompany the person to the health care appointment,
so that test results can be reviewed at that time. I'll admit that it is discouraging
to go in for an appointment, and have the care provider not even look at the
test results you've worked at so hard for so long. That seems to be happening
less frequently now, since most physicians are aware good blood sugar control
can reduce long term complications from diabetes. If you can get a printout
of your glucose tests, you should look it over to see if there is a pattern
of too low or too high results. A little detective work can certainly help you
gain better control.
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NEW KIDNEY FAILURE RESEARCH
For some time, doctors have known that a class of blood-pressure medications,
the ACE inhibitors, were effective at staving off diabetogenic kidney failure
(End Stage Renal Disease or ESRD). ACE inhibitors are quite safe and inexpensive,
but can produce a nuisance cough in a certain percentage of users.
What are the alternatives? Are they as effective? Recent articles
in the New England Journal of Medicine (2001, Vol. 345) discussed the Angiotensin-receptor
antagonists, a new class of drugs shown to have similar effects to ACE inhibitors.
Two of these drugs, irbesartan and losartan, were given to patients with type
2 diabetes and high blood pressure, who showed early signs of diabetic kidney
disease. These individuals might otherwise have been placed on ACE inhibitors
(others received a placebo). During the two-year period of the test, use of
irbesartan reduced the number of individuals whose kidney disease progressed
to a "critical stage" (as measured by proteinuria).
In another study, diabetics with advanced kidney disease received losartan (50mg
or 100mg daily), or a placebo, for a three-year period. Losartan significantly
reduced development of ESRD (in patients whose kidney complications were much
more serious than the first group). It also cut hospital admissions for heart
failure, but had no effect on the death rate.
In a third study, irbesartan was compared with the calcium channel
blocker amlodipine, and with a placebo, for a two-year period. As above, there
was a clear and demonstrable slowing in the development of ESRD, but no reduction
in mortality.
In all three tests, the demonstrated benefits (substantial delay in the onset
of significant kidney failure, ESRD) were clearly greater than blood pressure
control alone could explain. Need for dialysis or kidney transplant was delayed
an average of two years. The new drugs work much like the ACE inhibitors, but
do not produce the nuisance cough -- but the ARAs are far more expensive, and,
the researchers note, they delay ESRD, they do not cure it. "We still need
more effective approaches," writes reviewer Robert W. Griffith, MD, "to
prevent type 2 diabetes in the first place."
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WALKING FOR A CURE
by Meg Dixit
SAN FRANCISCO, CA - Did you know that 16 million Americans have diabetes and
one-third of them don't even know it? This was just one of the billboards participants
in "America's Walk for Diabetes" passed by at a fundraising walk held
on September 15, which took place around Lake Merced Park in San Francisco.
Despite overcast skies and chilly weather, the six-mile walk
was enjoyed by about 151 participants who together pulled in approximately $26,000,
as part of a larger campaign to raise funds for research in finding a cure to
this debilitating disease. The campaign is directed by the American Diabetes
Association, based in Alexandria, Virginia.
"It was a success and we will continue this program,"
said San Francisco Bay Area District Manager Deborah Jackson.
The regional sponsor of this event was Kaiser Permanente, while Equal Sweetener
was the national sponsor. Local sponsors included San Francisco's Stars Restaurant,
which provided lunch for the walkers, and Trader Joe's which brought in bagels,
juice and fruit for breakfast before the walk.
Vernon Glen, a local sportscaster at NBC affiliate Channel 4
in San Francisco, was Master of Ceremonies. His association with sports and
fitness was the reason the popular face was chosen for this event.
Walkers were able to enjoy live jazz music of the Bob Schoen
Quintet as they munched away on salads after the walk, which on average took
about three hours.
"This is my first walk and it really makes me happy to
be able do this for a good cause while having a great time - it's a win- win
situation," said participant, Sara.
Research for treating and curing this illness is expensive due
to the complexity of the problem. For example, about 500 to one million people
have type 1 diabetes, most being children 10 to 12 years old. Examining the
roots of the problem, trying out various medications and keeping treatment safe
is costly. Events like this seek to raise both funds and awareness of the problem,
in hopes of prevention.
Two more such walkathons are planned in the Bay Area: September
9 at the Pacific Bell Complex in San Ramon, and October 6 at Jack London Square
in Oakland. Similar events are held around the country, and interested participants,
volunteers and sponsors can find information on the Diabetes Foundation Website
at: www.diabetes.org.
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MAIL ORDER DIABETES DRUGS SAVE MONEY
by Michael J. Pirages
Diabetes patients without drug insurance coverage are among the thousands of
consumers nationwide who have discovered mail order pharmacies as a way to save
money on prescription drugs costs. Shopping at mail order pharmacies, consumers
can save as much as 85 percent, especially at Canadian pharmacies that are required
to control drug prices. However, a mail order pharmacist suggests that buyers
exercise caution.
"Diabetes patients should use care when shopping mail order and online
outlets to help ensure that they get the specific, high quality drugs they require,"
said Daren Jorgenson, a pharmacist at Canadameds.com, a leading mail order pharmacy
serving customers in all 50 states. "If they select a reputable mail order
pharmacy and shop smart, they can get the same drugs as they'd buy locally,
but at tremendous savings."
An example of the savings, popular diabetes medication Glucophage
(100 capsules/850mg) sells for $22 at Canadameds.com vs. while at U.S. mail
order pharmacy Drugstore.com it sells for $99.
Jorgenson provides these five tips for consumers buying drugs
by mail order or online:
1. Ensure your physician writes a prescription for FDA?approved
drugs and shop only at outlets requiring a prescription.
2. Order from outlets that provide street addresses, not just
a post office box.
3. Avoid mail order pharmacies in countries with a history of
producing counterfeit drugs. Mail order firms in the U.S. and Canada have a
pretty clean track record, but those elsewhere can be riskier.
4. Use a major credit card to pay for purchases. If problems
arise and can't be settled with the pharmacy, take it up with the credit card
company.
5. Be certain the company has a toll?free phone number so you
can contact a pharmacist and customer service staff at no cost to you.
According to Jorgenson, diabetes patients, seniors, the poor,
people with large insurance co?payments and those without insurance are the
primary customers shopping at mail order firms, including Canadameds.com, a
a fully-licensed Canadian?based pharmacy known for discounts of 30 to 85 percent
off U.S. costs.
"With many local consumers spending $400 or more out?of?pocket
on prescription drugs each month, if we can save them $100 or $200 monthly that
they can put towards retirement, the mortgage or a vacation, we're as delighted
to help them as they are to pocket the difference," said Jorgenson.
To reach Canadameds.com, call toll free 1?877?542?3330 or visit
ADDRESS: Canadameds.com, 885 Main Street, Winnipeg, Manitoba,
Canada, R2W-3P2
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TALKING BLOOD GLUCOSE MONITORING SYSTEMS
by Ed Bryant
Photo: Portrait. Caption: Ed Bryant.
As editor of VOICE OF THE DIABETIC, I am often asked about the relative strengths
and weaknesses of the various voice-enunciation equipped home blood glucose
monitors available today. As regular blood-glucose metering is tremendously
important, and as new developments regularly occur, I periodically update and
reprint this article.
There is no "best" talking glucose meter; no one monitoring
system is ideal for everyone. Features, prices, convenience, and clarity of
instructions vary. Although many companies make blood glucose monitors, and
some of these display their results in large print, only five currently available
meters allow voice enunciation, in which the device's voice synthesizer "speaks"
the meter's instructions and test results.
I advise all new blood glucose monitor users, blind or sighted,
and all those uncertain of their meter's operation, to obtain further instruction
from their health care team, and self-test in the presence of their doctor or
diabetes educator.
MEDICARE PROVIDES COVERAGE FOR THESE MONITORS, AND FOR ADD-ON
VOICE SYNTHESIZERS FOR THESE BLOOD GLUCOSE MONITORS. THEY ARE CLASSED AS "DURABLE
MEDICAL EQUIPMENT," AND COVERED UNDER MEDICARE PART B. BE SURE YOU AND
YOUR SUPPLIER FOLLOW ALL GUIDELINES FOR REIMBURSEMENT. THERE ARE TWO "SPECIFICATIONS"
TO NOTE: EO607, FOR "NON-ADAPTIVE" METERS, AND EO609, FOR METERS AND/OR
ADD-ON VOICE SYNTHESIZERS, AVAILABLE FOR DIABETICS AT LEAST LEGALLY BLIND. For
information, telephone: 1-800-633-4227, and ask for "Durable Medical Equipment."
Highlights
My personal favorite is the Accu-Chek VoiceMate. This talking meter, which incorporates
the proven Accu-Chek Advantage into a system designed and built by Roche Diagnostics,
is the most advanced on the market today, and the easiest for a blind person
to use. Its new Comfort Curve test strip allows quick and reliable nonsighted
placement of the blood sample. No more hanging drop of blood-just smear or dab
it on; the strip sticks well out of the meter, and you just find the tactile
cutout on the side. Even if you have fairly severe neuropathy in your hands,
this feature should make it easy to find the blood placement spot. And blood
never drips onto the meter-so there is far less need to clean it. Its voice
is clear and understandable. The VoiceMate includes two completely new features:
A "code key" system for calibrating the meter to a new set of strips
(no more numbers to punch in!), making this the only talking meter a blind person
can calibrate without any sighted aid at all; and an insulin vial identifier.
If you use Eli Lilly insulins, and they are new enough to be barcoded (January
2001 expiration date or later), insert them into the special opening, follow
the spoken directions, and the machine will tell you what type of Humulin insulin
you have there. (If your insulins are not barcoded, or not from Eli Lilly, the
VoiceMate's other features will still be completely operational.)
The VoiceMate can be ordered through any pharmacist. Have your
pharmacist contact Roche Diagnostics; telephone: 1-800-428-5076, and ask for
catalog #2030802. NOTE: For Customer Service department and meter user advice,
in English or Spanish, you should call: 1-800-858-8072.
The LifeScan One Touch meters: the Profile, and the now-discontinued
One Touch II, are often adapted to voice synthesis. Recently, the LifeScan Basic
and SureStep meters became speech-capable as well. The three One Touch meters:
Basic, II, and Profile use the same procedures, the same test strips, and feature
the same detachable test strip holder. All require a "hanging drop of blood."
All are accurate, but their operating drill makes them difficult for blind users.
All three accept "talk boxes," but voice synthesizers designed for
the One Touch II will not operate with the Profile or Basic, and vice versa.
Note: The LifeScan SureStep, a very different type of meter, features a "touchable"
test strip, and does not require a hanging drop of blood.
The "voice boxes," speech synthesizer modules that
plug into the meter's data port and provide its voice, are not made by LifeScan,
but by several competing firms, described below. These manufacturers have been
producing voice units for the old One Touch II, and updated versions for use
with the Profile, and now for the SureStep. If you already have a LifeScan One
Touch II, Profile, or SureStep, no modifications are needed to allow use of
the appropriate speech synthesizer. If you do not yet own a LifeScan monitor,
shop around, as some pharmacies and major discount stores sell glucose monitors
substantially below list price.
Talking Glucose Monitors and Voice Boxes
1.) The Accu-Chek VoiceMate talking glucose monitor:
Roche Diagnostics Corporation, 9115 Hague Road, Indianapolis, IN 46250-0100;
telephone: 1-800-858-8072.
The Accu-Chek VoiceMate, developed in cooperation with Eli Lilly and Company,
incorporates the Accu-Chek Advantage glucose monitor. The VoiceMate is small,
portable, and weighs only 12.5 ounces. It contains a "bar code reader"
to describe insulin type (Lilly insulins only). First offered for sale in 1998,
the VoiceMate is supplied with a new test strip, the Comfort Curve, which vastly
simplifies the problem of blood sample placement. Very good audiocassette and
large-print instructions are supplied (in English). Suggested retail $495-$525,
available through your pharmacist. Spanish-language customer service is available.
Purchase price includes a carrying bag with adjustable strap. The VoiceMate
is also offered by the National Federation of the Blind (NFB), Materials Center,
1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314. Note: The
Materials Center is open 8:00am to 5:00pm, EST, weekdays. The NFB offers this
meter for $475.
The only weakness I have detected in this otherwise excellent
meter concerns the lack of a "Not Enough Blood" warning. The VoiceMate
cannot distinguish between not enough blood on the strip and a low blood glucose
reading. This occurrence seems to be uncommon, and Roche advises "double-dosing"
the test strip (applying a second drop of blood to the same strip within 15
seconds of the first) in such cases. You might find it beneficial to test in
front of your doctor or diabetes educator, who can advise you if you are not
getting adequate blood onto the strip. I have advised Roche of this problem,
but they have not yet rectified it.
2.) The Voice-Touch speech synthesizers, for the LifeScan One
Touch II or LifeScan Profile:
Myna Corporation, 239 Western Avenue, Bldg. A21, Essex, MA 01929;
telephone: (978) 768-3999.
Myna makes a pair of light, compact, convenient, and reliable
glucose meter speech modules. The two models are not interchangeable. The Voice-Touch
modules attach firmly to the meter, adding little bulk, and forming a single
reliable unit. There are no separate switches to remember; the modules operate
off the controls of the LifeScan monitor. The box is capable of male or female
voice enunciation. A Spanish-speaking Voice-Touch is also available.
The Myna Corporation offers the Voice-Touch speech synthesizers for $225 for
One Touch II or Profile, the LifeScan meters alone for $115 (One Touch II or
Profile). An optional AC adapter is offered, as is a carrying case, $15 each.
Myna's instructional cassettes and large-print instructions clearly explain
the speech modules, but do not describe operation of the LifeScan glucose monitors.
The LifeScan One Touch meters and Voice-Touch speech synthesizers
are also offered by the National Federation of the Blind (NFB), Materials Center,
1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314. Note: The
Materials Center is open 8:00am to 5:00pm, EST, weekdays. The NFB offers the
combination (One Touch II meter plus voice module) for $309 (the lowest price
for a talking glucose monitor in the U.S.), the voice module alone for $189
(specify whether for One Touch II or Profile), or the glucose meter alone for
$120 (One Touch II) or $135 (Profile). An optional AC adapter costs $12.
3.) The Digi-Voice modules, for the LifeScan Basic, One-Touch
II, Profile, and SureStep:
Science Products, Box 888, Southeastern, PA 19399; telephone:
1-800-888-7400.
Science Products makes several versions of their robust and
reliable Digi-Voice speech module: The big Digi-Voice Deluxe, and the smaller
Mini Digi-Voice. Voice boxes designed for the One Touch II will not operate
with the Profile, and vice versa - and the SureStep requires its own! The Basic
uses the same talk-box as the Profile. Be SURE to tell them WHICH meter you
have - they will supply the correct synthesizer for it! The Digi-Voice modules
connect to the meter by a 22-inch patch cord, providing audio output for its
readings. Controls are simple; on the Deluxe a volume control knob and a toggle
switch run the voice synthesizer, separate from the monitor's controls. The
Mini's single button both turns on the voice box and adjusts the volume control,
again, separate from the meter's controls. Readings are announced in a clear,
somewhat military, male voice. Thorough cassette instructions explain the voice
box and briefly cover the Profile meter, no large-print instructions are supplied.
Science Products sells the Digi-Voice Deluxe module alone for $275, and the
Mini Digi-Voice modules alone for $199 (9-volt battery) or $219 (with AC adapter).
Remember to specify which meter you own. They offer the LifeScan Profile glucose
monitor for $120. The One Touch II meter is no longer available; and though
they still can supply you a talk box for it, they report there has been little
demand for some time.
4.) The LHS7 Module, a voice box for the LifeScan Profile:
LS&S Group, P.O. Box 673, Northbrook, IL 60065; telephone: 1-800-468-4789.
The small and light LHS7 attaches to the bottom of the Profile
glucose meter by means of a Velcro patch, and operates through the meter's controls.
Two-position volume control (loud and soft); AC adapter included in purchase
price. English-language voice only; no audiocassette or large-print instructions
are provided. Cost: $169.95, or $299.95 with a new Profile meter.
5.) The Diascan Partner talking glucose monitor: Formerly offered
by Home Diagnostics, Inc., of Ft. Lauderdale, Florida, is out of production
and unavailable, as are test strips for existing Partners.
Medicare
As mentioned above, Medicare recognizes home blood glucose monitors
as "Durable Medical Equipment," and coverage is provided for diabetics,
under Medicare Part B. Glucose meters without audio output have one specification
on the "Fee Schedule" (EO607), and glucose meters with voice synthesis,
or add-on voice boxes for home blood glucose monitors, have another (EO609),
available to diabetics who are at least legally blind. Be sure to use the correct
specification, and to follow all guidelines for reimbursement. For further information,
call Medicare's main telephone: 1-800-633-4227, and ask for "Durable Medical
Equipment."
An Invitation to Manufacturers
Currently available "talk boxes" (speech synthesizers)
make use of the same "data port" installed in the meter to allow interfacing
with and downloading to a computer. For many monitors, the hardware is already
in place, and adding speech compatibility should be a simple process. The National
Federation of the Blind urges manufacturers to go the rest of the distance,
and make talking versions of their monitors available to those diabetics who
need and want them. NFB Resolution 97-12 (adopted at the 1997 annual convention
in New Orleans, Louisiana) calls on monitor manufacturers to make their meters
speech-compatible.
Hints and Tips
If an insufficient amount of blood is placed on the test strip,
the test will not take place, or the results will be inaccurate. Most meters
will indicate "not enough blood." You may even have to prick your
finger again! There are several possible explanations for this frustrating occurrence:
A. The initial drop of blood was too small: Some folks don't bleed enough. They
can get more blood by holding hands below waist level for about 15 seconds,
shaking them, and/or washing/soaking hands in warm water for a few minutes before
the test. Warm water stimulates the flow of blood to the fingers. A slightly
longer lancet, with deeper penetration, may help some. "Milking the finger"
(squeezing it gently) can also help, as can wrapping a doubled rubber band between
the first and second joint of the finger to be lanced. This will help cause
the finger to become engorged with blood. Hold the rubber band down with the
thumb while lancing. Remove the band as soon as you lance.
Doctors and diabetes educators who treat heart patients have
noted that "prophylactic aspirin therapy," an enteric-coated aspirin
a day to thin the blood and reduce risk of a heart attack, may make it easier
for their diabetic patients to obtain a blood sample. If you are a "difficult
bleeder," the same therapy with enteric-coated aspirin might help you,
too. Be sure to talk to your primary-care doctor about aspirin, and to your
eye doctor as well, because blood thinners like enteric aspirin can increase
the risk of retinopathy.
B. There may have been enough blood, but it was placed onto
the wrong part of the test strip ( i.e."You Missed"}: Some folks bleed
fast, and may lose the blood off the finger before they're ready. By the time
they get the finger to the test strip, the blood has fallen in the wrong place.
A fast bleeder needs to work closer to the test strip, and perhaps to employ
one of the blood placement aids discussed in this article. Users of the LifeScan
SureStep should try bending up the tail of the test strip as an aid to location
and placement. If you are new to your meter, I suggest you test in front of
your diabetes educator, or someone familiar with your meter-perhaps there is
some part of the drill you could do better.
C. Some enthusiastic people, placing the blood on the strip,
press down too hard and push the blood out of its correct position, squishing
it onto the wrong part of the strip: If you use the LifeScan One Touch II or
Profile, it is best to very gently deposit a hanging drop of blood onto the
test strip. Marla Bernbaum, MD, writing in The ADEVIP Monitor, offered the following
suggestion, pertinent to diabetics with severe neuropathy (who wouldn't feel
the otherwise painful fingertip "stick" she discusses here):
I have discovered another way to apply blood to the LifeScan test strip, which
has been useful for several of our patients. This method allows them to stick
the tip rather than the side of the finger. We use the same platform modification
[described below], with a dot of Hi-Marks or T-shirt paint on each side of the
strip guide near the depression where the blood is to be applied. For this approach
the meter should be turned sideways. The patient can then place the pad of the
finger on the raised dot perpendicular to the length of the strip and rock the
finger forward so that the tip of the finger lines up with the depression on
the strip and deposits the blood droplet in the appropriate place. This method
increases the portion of the fingertip that can be used, and is preferable for
some patients, particularly for those who bleed slowly and therefore must place
the blood drop in precisely the right location.
LifeScan Modifications
If you use any of the LifeScan "One Touch" series
glucose meters, some blood placement problems can be solved by modification
of the Test Strip Holder (LifeScan Part #043-123, and note this same part fits
all LifeScan "One Touch" meters). The idea is simply to provide tactile
locating aids for finger location and placement of the blood sample on the test
strip. A raised dot on either side of the test strip will work for some, but
diabetics with limited sensation in the fingertips may find a U-shaped guide
more useful. Most diabetics puncture the side of a fingertip, but those with
severe neuropathy, who can't feel the lancet, and who prick the center of the
fingertip, may be helped by the U-shaped guide. With practice, and the use of
such tactile cues, blind diabetics can correctly place blood samples on the
test strip. (Editor's Note: Thanks to Ann S. Williams, RN, MSN, CDE, for providing
the modified LifeScan Test Strip Holders mentioned here.)
The Test Strip Holder is detachable, and modifications as described
will in no way interfere with the operation, accuracy, or cleaning of the LifeScan
meter. LifeScan's Technical Services Department (phone: 1-800-227-8862) will
provide a spare Test Strip Holder upon request, without charge. It is recommended
that the modifications be to this spare.
The dots and U-shaped ridge were created with T-shirt paint, of the type that
stands up sharply from a fabric surface. Upon application, the paint spreads
a little, so apply sparingly. Best results come from "tack-painting,"
applying a small amount, then letting it dry (minimum 12 hours), with subsequent
applications to build up the height. Practice first on some other material (posterboard
or paper plate), as the paint can come out quickly. Be sure to have the Test
Strip Holder OFF THE METER when applying the T-shirt paint. For best results,
insert a test strip in the holder as an aid to placement of the dots or U-shaped
ridge. T-shirt paint is inexpensive and is available at most craft and fabric
stores. Although a full spectrum of colors is available, bright, contrasty colors
like orange may aid in low vision situations. Brands and types vary; find one
that gives you a nice hard tactile ridge. Some paints feel too rubbery. "Puffy
paint" flakes off too easily. You may have to experiment.
Several vendors offer commercial alternatives to modifying the
test strip holder. One slips over the LifeScan meter, and the other attaches
directly to the test strip holder. Both devices aid in proper finger placement,
and serve to guide the drop of blood more surely to the test strip. Science
Products (address above, telephone: 1-800-888-7400), makes the Sure Drop, which
slips over the body of the meter. The special Teflon-like coating on the surface
of the device helps direct the blood, but can be damaged by bleach or a hard
brushing-clean with mild soap and warm water. A Sure Drop made for the One Touch
II will not fit the Profile, and vice versa. The unit for the Profile appears
well-made and easy to use. Both units are priced at $24.95 each.
I have discussed the strengths and weaknesses of the blood glucose
monitoring systems with voice enunciation currently manufactured. This evaluation
should help blind diabetics and those losing vision, who are just as capable
as the sighted of independently testing their blood sugar levels, and performing
all the other tasks of daily diabetes self-management. Both blind and sighted
diabetics are encouraged to consult with their health care team, and with individuals
experienced in use of glucose monitoring equipment.
Choosing the most appropriate home blood glucose monitor is
an important step in diabetes self-management. As blind diabetics increase their
participation in the mainstream, efficient glycemic control is needed to maintain
good quality of life. The Diabetes Action Network of the National Federation
of the Blind, a support and information network, welcomes your input on blood
glucose testing.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
HOPE OF BLINDNESS CURE
(This story reprinted from BBC ONLINE, (c) 2001 The British Broadcasting Corporation.
Reprinted with permission)
Scientists have developed a technique which they hope will restore sight to
people left blinded by retinal damage. A team in Japan has announced that they
have successfully grown the light?sensitive receptors, or rods, that make up
the eye's retina, from the iris of rats.
Although the research is at an early stage, it is already being
suggested the technique may be transferred to human beings. If that could be
achieved, rods could be grown from a blind patient's own iris and then transplanted
into the eye, ensuring the new tissue would not be rejected.
However, the new research, which is being conducted at Kyoto University, still
has some way to go, as the scientists have yet to transplants the rods back
into the eyes of blind rats. At present, there is no treatment for retinal damage
in humans, which can be caused by degenerative diseases or by looking directly
at the sun. This can result in permanent blindness, because retina cells, once
damaged, do not grow back.
Coloured diaphragm
The Kyoto team extracted cells from the iris, the coloured muscular
diaphragm at the front of the eye that controls the amount of light entering
the eye. These cells are not sensitive to light. Then, in the laboratory, they
modified them so that they became light?sensitive, and thus potentially could
be transplanted into the retina. The retina is the light?sensitive membrane
at the back of the eye made up of cells that, when stimulated by light, trigger
messages along the optic nerve, which are then interpreted as visual images
by the brain.
The cells were made light sensitive by adding a gene known as
CRX that is normally found in the mature retina. Once the gene was added to
the cells, they began to produced a light?sensitive protein called rhodopsin,
which is also found in the retina.
Although a cure for blindness is still a long way off, the scientists
are encouraged by the fact that iris and retina cells share similar developmental
characteristics.
The research is published in the journal NATURE NEUROSCIENCE.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
BOOK REVIEWS
by Marilyn Helton
Greetings Readers! Being the grandmother of a very active five?year?old, I can't
help but be hypervigilant about the threat of juvenile diabetes. Taylor has
watched me measure my blood glucose hundreds of times, as well as suffered disappointments
when my diabetes and/or medications have prevented me from attending some of
her preschool and birthday celebrations. It really hit home when she recently
drew a picture of me with a huge smile on my face because I was so happy that
I didn't have ". . . that darned old diabetes any more." If a non?diabetic
child can be so sensitive to the effects of diabetes, just try imagine what
it must be like for a child her age to experience the challenges of coping with
type 1 diabetes. I've recently received three excellent books on juvenile diabetes
and would like to share the highlights of each with you.
WHEN A CHILD HAS DIABETES, by Denis Daneman, MB, BCh, FRCPC,
Marcia Frank, RN, MHSc, CDE, and Kusiel Perlman, MD, FRCPC, the Diabetes Team
at Toronto's famous Hospital for Sick Children, is a good read for parents trying
to help young children deal with conditions they can't understand, and older
children to accept their "difference" and manage it responsibly.
Packed with case histories, useful charts, diagrams, and tips
for day?to?day living, When A Child Has Diabetes also shows parents how to know
when diabetes is not being managed well and what to do to reduce the risks of
complications. Touching on topics such as balancing food intake, activity, insulin
and blood glucose control, making meals work, unraveling the mysteries of adjusting
insulin doses, along with managing hyperglycemic (highs) and hypoglycemic (lows).
Examples are illustrated with actual case history scenarios. Parents and caregivers
looking for solutions in terms of day to day living will appreciate this approach.
Also included are excellent chapters on emotional factors helping diabetic children
adjust to diabetes, growth and development issues from toddlers to teens, and
how to put complications in proper perspective.
WHEN A CHILD HAS DIABETES; 1999; Firefly Books (U.S.), Inc.;
$14.95, is an interesting read through the eyes of parents, caregivers and diabetic
children themselves.
If you're looking for a book which features the latest advances
in diabetes care for children, the American Diabetes Association's GUIDE TO
RAISING A CHILD WITH DIABETES, Second Edition by Linda M. Siminerio, RN, PhD
CDE, and Jean Betschart, MN, MSN, CPNP, CDE, is filled with the most up?to?date
information.
One of the nation's newest concerns is discovering that type 2 diabetes, formerly
thought an adult?onset disease, is being diagnosed in large numbers of childhood
populations. Lifestyles focused on unhealthy foods served in over?sized portions,
along with lack of physical activity, are thought to be the impetus in the development
of type 2 diabetes in children. Experts in the medical community are predicting
that these children will develop the complications of diabetes at much earlier
ages, in their early to mid?thirties, as opposed to the sixties and later.
GUIDE TO RAISING A CHILD WITH DIABETES also addresses practical
concerns, such as helping your child accept meal planning in terms of dietary
exchanges and carbohydrate counting, holiday parties, eating out with workable
solutions. As parents and caregivers become aware of the effects that different
foods can have on the diabetic child's blood glucose, they'll learn how to balance
the foods with insulin or exercise.
Authors Siminerio and Betschart cover age?wise concerns in
raising a diabetic child from infancy to adolescence, including contemporary
issues such as diabetes and your child's friends, school situations, participation
in organized sports, feelings, dating, driving, and problems such as eating
disorders, tobacco, alcohol and illegal drug use. An excellent, easy to understand
guide which includes a good resource guide at the back of the book; highly recommended.
Published by the American Diabetes Association; 2000; $16.95.
As if parenthood in and of itself isn't enough of a challenge,
imagine yourself with two young children, both diagnosed with juvenile diabetes,
16 months apart. LIVING WITH JUVENILE DIABETES, by Victoria Peurrung, is told
from a mother's perspective and concerns diabetes and its impact on one family
when both of their young children develop the disease. Peurrung's gift of words
in the opening chapter, "The Devastating News," instantly draws the
reader into her world through her ability to relate to a parent's emotions when
receiving the news that her child is being diagnosed with diabetes. Her experiences,
peppered with positive encouragement to parents and caregivers to "hang
in there" and not give up, are truly inspirational.
LIVING WITH JUVENILE DIABETES is filled with practical information based on
Peurrung's quest to learn as much as she could about the disease, as well as
good information on medical devices and resources. She addresses issues such
as discrimination in schools and day care centers, the diabetic child's rights
in school and children's camps, and finding good childcare providers. There
are also good chapters on handling sick days, exercise and nutrition, as well
as advice on counting carbohydrates, sample menu plans, reading food labels,
using healthy food substitutes and food analysis charts. This is a very practical
handbook from a Mom who's "been there and done that." Author Peurrung
has even included a chapter of recipes which are good for the whole family!
I found this book a well written journey of personal experience
on a 24/7 basis, and was pleased to find a good resource chapter with website
addresses at the end of the book. Highly recommended. Published by Hatherleigh
Press; 2001, by Victoria Peurrung; $14.95, US/ $21.99, Can.
There you have it until we meet again with our Spring reviews.
In the meantime, I wish you all well. Be sure to live in the present, because
each moment is a gift!
Marilyn Helton, a type 2 diabetic since 1993, is the publisher
of CINNAMON HEARTS: The Art of Living A Winning Diabetic Lifestyle, a positive?power
online E?zine for diabetics and their families. You can find more of Marilyn's
book reviews, articles and recipes online at http:diabeticgourmet.com/ and www.fabulousfoods.com/
Visit the Cinnamon Hearts website at http://members.nbci.com/cinnhearts/ for
more seasonal and motivational articles, plus dozens of diabetic recipes.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
FOOD FOR THOUGHT
Artwork: Dancing fruit and vegetables.
We invite blurbs and tidbit articles for inclusion in this column. Materials
received may be edited and used as space permits. Products and services included
in this column are for information only and do not imply endorsement by the
Diabetes Action Network of the NFB.
Check for Diabetes At Age 10
Researchers from Baylor College of Medicine, in Houston, Texas,
now advise that overweight children, those who show two or more risk factors
for diabetes, should be regularly tested for the condition starting at age 10.
Significant risk factors include: family history of diabetes, nonwhite ethnicity,
overweight, and inactive lifestyle.
The complications of diabetes can take years to develop, but
the earlier the condition is detected, the better start can be made on prevention:
with exercise, lifestyle change and weight reduction. Discuss with your physician
whether your child should be tested for diabetes.
Anti-Slip Traction Gear for Safe Walking on Ice and Snow
(From "Monitor Miniatures," a regular feature of the
Braille Monitor, published by the National Federation of the Blind, monthly,
in large print, Braille, audiocassette, e-mail, and on the web at www.nfb.org:
Vol. 14, No. 10, November 2001 edition.)
Snow and icy weather can create dangerous walking conditions
for anyone, whether exercising, shoveling snow, or just going to the mailbox
in winter. However, everyone can now walk safely with STABILicers easily attachable
ice cleats. STABILicers act like snow tires for the feet, and will help keep
people active and agile despite slippery winter weather. STABILicers look like
sandals, and attach easily with velcro straps, over anything from running shoes
to boots. Designed with flexible Vibram (r), STABILicers have cleats that bite
into snow and ice, providing traction needed to get around with confidence in
the worst weather conditions. STABILicers have been used for years by letter
carriers, utility line workers, and delivery personnel.
For information, contact: Dave Washburn, 32 North, PO Box 500y,
Biddeford, ME. 04007-5007; telephone: 1-800-782-2423.
VOICE Formats
is offered in two formats: standard print, and 15/16 ips audiocassette,
"talking book" speed. Anyone who is currently receiving the Voice
in print and having difficulty reading it, may receive it on cassette at no
charge. VOICE tapes require the special tape player available free to the legally
blind from Regional Libraries for the Blind and Physically Handicapped, which
can be obtained by telephoning the National Library Service at: 1?800?424?8567.
Note: Attempting to play Voice tapes (or any other tapes in NLS format) on a
conventional music-speed tape player will yield incomprehensible "chipmunk
sounds."
All a subscriber needs to do, to switch from standard print
to tape, or to receive both formats, free of charge, is contact us at the VOICE
OF THE DIABETIC Editorial Office.
More Support for Tight Control
The evidence continues to come in: "tight control," keeping your blood
glucose down close to the non-diabetic "normal" range saves lives.
A study reported in the November 8, 2001 New England Journal of Medicine details
how diabetics, placed in hospital intensive care (ICU), were 42% less likely
to die there, if they were practicing tight control, than if they were not tightly
controlling their blood sugars.
Researchers chose 1548 critically ill patients with diabetes,
placed one group under "accepted hospital procedure," and aggressively
lowered the BGs of the other group with insulin injections. They found their
tight control regime so effective, at reducing both mortality and various indicators
of morbidity, that the study was halted early, for ethical reasons.
Researchers describe the study's results as significant because
they demonstrate that hyperglycemia, high blood sugar, in ICU patients, is neither
adaptive nor beneficial, and should be treated with intensive insulin therapy.
"Few if any intensive care interventions have improved outcomes to the
extent that intensive insulin therapy did in these patients," said one
researcher.
Weight Loss Drugs and Diabetes
If you have diabetes and are overweight, good blood sugar control
is harder for you to achieve. Excess fat raises your insulin resistance, forcing
both your body and your insulin medications to work harder to achieve normal
BG levels. Any means by which you successfully reduce your body fat will help
you better self-manage your diabetes. And note that if you have type 2 diabetes,
and lose a significant percent of your excess bodymass, you may well require
less insulin medications. Talk to your doctor about appropriate weight-loss
strategies.
HEAR YE, HEAR YE, A RAFFLE
The Diabetes Action Network of the National Federation of the
Blind reaches out and provides support and information to thousands of people.
Because it costs to operate this valuable network and to produce the VOICE OF
THE DIABETIC, we must generate funds to help cover these expenses. Our Diabetes
Action Network has elected to hold a raffle, which will be coordinated by our
division treasurer, Bruce Peters.
THE GRAND PRIZE WILL BE $500! The winning ticket will be drawn, and the winner's
name announced, on July 8, 2002, at the banquet held during the annual convention
of the National Federation of the Blind.
Raffle tickets cost $1 each, or a book of six may be purchased
for $5. Tickets may be purchased from state representatives of our Diabetes
Action Network or by contacting the VOICE Editorial Office, 1412 I-70 Drive
SW, Suite C, Columbia, MO 65203; telephone: (573) 875?8911. Anyone interested
in selling tickets should also contact the VOICE Editorial Office. Tickets are
available now! Names of persons who sell 50 tickets or more will be announced
in the VOICE.
Please make checks payable to the National Federation of the
Blind. Money and sold raffle ticket stubs must be mailed to the VOICE office
no later than June 10, 2002, or they can be personally delivered to Raffle Chairman
Bruce Peters, at this year's NFB convention in Louisville, Kentucky. This raffle
is open to anyone age 18 or older, and the holder of the lucky raffle ticket
need not be present to win. Each ticket sold is a donation, helping keep our
Diabetes Action Network moving forward.
Volunteers Needed
In VOICE Vol 11, No. 3, 1996, we told you how doctors had discovered
that, for diabetics with severe heart disease, who might have received balloon
angioplasty, traditional, invasive "bypass surgery" produced significantly
higher rates of patient survival. Although the findings were "counter-intuitive,"
the opposite to what one might have expected, they were solid.
A follow-up study (the "BARI-2D"), is now beginning,
to further explore questions of how best to treat type 2 diabetes patients who
also have coronary heart disease. The study will compare the effectiveness of
two different types of drug therapy, and will also compare drug therapy plus
early surgery (angioplasty or bypass surgery) to drug therapy alone.
Up to 2800 volunteers are needed for this study. These individuals
should be: Diagnosed with type 2 diabetes, diagnosed with coronary heart disease,
otherwise in good health, and willing to commit to the study's five-year program.
There will be no placebos. All participants will receive medically meaningful
treatment, either medications to increase insulin production, or to decrease
insulin resistance. Half the participants will also undergo "revascularization"
surgery. There are no experimental, untested procedures here.
For further information, see your doctor, or go to the following
website: www.bari2d.org
Articles Needed
If you have diabetes, are a family member or friend of a diabetic,
or a health professional with an interest in diabetes, we invite you to submit
an article for publication in the VOICE OF THE DIABETIC.
Our philosophy regarding diabetes is positive. Do you have an
inspiring, enlightening story? We, the Diabetes Action Network of the National
Federation of the Blind, seek to show people they are not alone, and do have
options, regardless of diabetic complications. If you have experienced ramifications,
others, who may be facing the same side-effects, could benefit from what you
have to say.
Perhaps you have not experienced complications??your unique
insight, coping strategies, and lifestyle can still inspire others. Are you
a relative, a friend, or a health professional? More than 300,456 VOICE readers
could benefit from your story.
For information and article submission guidelines, contact:
VOICE OF THE DIABETIC, 1412 I-70 Drive, Suite C, Columbia, MO 65203; telephone:
(573) 875?8911.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
HEALTH LITERACY: THE UNSEEN PROBLEM
From The Editor: The following is from ISMP MEDICATION SAFETY ALERT, published
by the Institute for Safe Medication Practices. While they are concerned with
all medications, misdosage of diabetes medications can have especially severe
consequences.
Many people have trouble functioning well as patients, even health professionals.
Whether limited by knowledge, socioeconomic factors, emotional or clinical state,
or cultural background, their level of health literacy - the ability to read,
understand, and act on healthcare information, is often dangerously low. A popular
television show, ER, portrayed this problem recently, in an episode where a
Spanish-speaking woman misunderstood the directions for taking a potent medicine.
The prescription clearly stated she was to take the medication "once a
day." But, in Spanish, "once" means eleven. In the show, the
patient died from taking such an excessive dose (and there have been real-life
examples of the same misunderstanding, use of "once" on labels for
Spanish-speaking individuals.)
Other examples of patients who've had difficulty reading and
understanding medication directions are plentiful: The elderly patient who couldn't
tell if he'd picked up his bottle of Coumadin or Celebrex; the young mothers
who, after reading the acetaminophen label, could not accurately state their
child's dose; teenagers who've misunderstood directions for contraceptive jelly
and have eaten it on toast every morning to prevent pregnancy.... But lest you
believe that poor health literacy is an isolated problem with the elderly, disabled,
uneducated, or certain socioeconomic classes, here are some startling facts
from the American Medical Association's Health Literacy Introductory Kit:
More than 40% of all patients with chronic illnesses are functionally
illiterate.
Almost a quarter of all Americans read at or below a fifth grade
level. Medical information leaflets are typically written at a tenth grade level.
An estimated three of four patients throw out the medication
leaflet stapled to the prescription bag without reading it.
Only half of all patients take their medications as directed..
Low health literacy skills have increased our annual healthcare
expenses by an estimated $73 billion.
Furthermore, people who have difficulty reading or understanding
health information are often ashamed, and can try to hide the problem. In addition,
low literacy isn't obvious. Researchers have reported poor reading skills in
some of the most poised and articulate patients.
Safe Practice Recommendations:
Patient education requires a new approach - assume everyone
has a literacy problem. After all, people at all literacy levels prefer simple
straightforward instructions and written materials. Here are some things to
keep in mind:
Offer small amounts of information at a time. First, tell patients what they
truly need to know, so they can follow the directions. Emphasize the desired
behavior, not the medical facts. Leave background information for later encounters.
Provide written materials at a fifth grade level or lower. Use
clear captions, ample white space, and pictures, diagrams, or videotapes to
help explain necessary concepts. Most people, even those who read well, depend
on visual cues to reinforce their learning and spark memory.
Involve your patients. Use focus groups of patients to help
write personally relevant and culturally sensitive education materials. After
they understand the information, ask these patients how you might best explain
it to others. Use a different focus group of patients to review the final materials
and highlight any word or concept they do not fully understand.
Verify that your patient understands. Avoid asking yes/know
questions - instead ask patients to show and tell you how they would take their
medicine at home. That way you will spot problems.
Keep your eye on evolving technologies. For example, talking
prescription labels (Talking RX from Millennium Compliance and ScripTalk from
EnVision), recording devices for prescription instruction (ASKO Corporation's
Aloud) and electronic pill organizers/reminders (E-Pill) are now being tested
or are already on the market.
Editor's Note: See VOICE OF THE DIABETIC, Vol 16, No. 3, Summer
2001, for an article titled: "Talking Prescription Identifiers."
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
ASK JANIS
by Janis Roszler
Photo: Portrait. Caption: Janis Roszler.
Janis Roszler, RD, CDE, LD/N is a registered dietitian, certified
diabetes educator, and certified insulin pump trainer. She has counseled individuals
with diabetes for over 14 years, and is currently the diabetes educator for
the website: www.diabetic.com
This column is for educational purposes only. For answers that meet your specific
educational needs, consult your physician.
Dear Janis:
I was recently diagnosed with type 1 diabetes. My sugars seem
OK. Maybe I don't really have diabetes, and can stop taking insulin. What do
you think?
Dear Stan:
You may be in the "honeymoon phase" of your diabetes.
This often occurs within a year of diagnosis. During this phase, the need for
insulin injections is reduced or eliminated. Your pancreas appears to heal and
produce adequate insulin on its own. Unfortunately, this is temporary.
Meet with your doctor and review how you should deal with this.
He or she knows your medical history best.
Dear Janis:
I am a type 1 diabetic with a slight, not major, weight problem
and would like to know if there are any over-the-counter diet pills I can take
without having to refer to a doctor?
Dear DM:
I am not a big fan of diet pills. They can cause serious side
effects. Even many people who do not have diabetes find they don't feel well
while using them. The best way to achieve a long term weight loss, help improve
your blood sugars, and reduce stress, is to begin a regular exercise program.
Try a dance or karate class or other regular physical activity.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
DIALYSIS AT NATIONAL CONVENTION
by Ed Bryant
During this year's annual convention of the National Federation of the Blind,
in Louisville, Kentucky (Wednesday, July 3, through Tuesday, July 9), dialysis
will be available. Individuals requiring dialysis must have a transient patient
packet and physician's statement filled out prior to treatment. Conventioneers
must have their unit contact the desired location in the Louisville area for
instructions, well in advance. NOTE: The convention will take place at the Galt
House Hotel, 140 N. Fourth Street, Louisville, KY 40202.
Individuals will be responsible for, and must pay out of pocket,
prior to each treatment, the approximately $30 not covered by Medicare, plus
any additional physician's fees, and any charges for other medications.
DIALYSIS CENTERS SHOULD SET UP TRANSIENT DIALYSIS LOCATIONS
AT LEAST SIX TO EIGHT WEEKS IN ADVANCE. THIS HELPS ASSURE A LOCATION FOR ANYONE
WANTING TO DIALYZE. There are many centers in the Louisville area, but that
area is quite large, and early reservation is strongly recommended. Here are
some dialysis locations:
Renal Care Group, Inc., 635 South Third Street, Louisville, KY 40202; telephone:
(502) 561-1314. About ½-mi. from hotel.
BMA Dialysis, 720 East Broadway, Louisville, KY 40202; telephone:
(502) 584-3021. About ½-mi. from hotel.
U. of Louisville Kidney Disease Program, 615 Preston Street,
Louisville, KY 40292; telephone: (502) 852-5757. About ½-mi. from hotel.
BMA of Southern Indiana, 525 Broadway, Jeffersonville, IN 47130;
telephone: (812) 282-0420. About two miles from hotel.
PLEASE REMEMBER TO SCHEDULE DIALYSIS TREATMENTS EARLY, TO ENSURE
SPACE. If scheduling assistance is needed, have your dialysis unit's social
worker contact me: Diabetes Action Network President Ed Bryant; telephone: (573)
875?8911. See you in Louisville!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
WHAT YOU ALWAYS WANTED TO KNOW BUT DIDN'T KNOW WHERE TO ASK
(Resource Column)
Artwork: Hand pulling book off shelf.
Inclusion of materials in this publication is for information only and does
not imply endorsement by the Diabetes Action Network of the NFB.
Full Service Diabetes Supplier
DS Medical Supply is a full-service supplier with a catalog
of more than 55,000 items, dealing with diabetes, its complications, and many
other medical supplies, delivered to your home. Diabetes products range from
glucose monitors by Bayer and LifeScan, and the AccuChek VoiceMate talking glucose
monitor, strips, lancets and other supplies, to diabetic orthotics/foot care
items, and much more. They accept Medicare, private insurance, some HMOs, and,
in most states, direct or crossover Medicaid. Contact: DS Medical, 2105 Newport
Place, Suite 600, Lawrenceville, GA 30043-5561; telephone: 1-800-722-2604, website:
Talking Computer
The VoiceNote, from HumanWare, is a laptop note-taker/organizer
for blind individuals and those losing vision. It combines the familiar MicroSoft
WINDOWS CE operating system, and standard computer keyboard, with voice access.
You can create MS Word documents, access your e-mail, transfer documents to
and from a standard PC computer, use your VoiceNote as a speech synthesizer
for another computer, and access a number of planning and scheduling tools.
For more information, about the VoiceNote or their many other products, contact:
HumanWare, 6246 King Road, Loomis, CA 95650; telephone: 1-800-722-3393; website:
Diabetes Supplies
Inverness Medical Corporation carries a full line of discount-priced
diabetes supplies, including: Dex?4 glucose tablets, skin cream, and Excel test
strips for the Glucometer Elite monitor. The company also markets the Monoject
line of insulin syringes and lancets. Many Inverness (formerly Can?Am) products
are also sold as "house brand" at major pharmacy chains. Their low
price in no way compromises their high quality.
For information, contact: Inverness Medical Corporation, 200
Prospect Street, Waltham, MA 02453; telephone: 1?800?461?7448.
Insulin Pumps and Supplies
MiniMed is one of the world's leading manufacturers of insulin
pumps -- those precision microdevices that are the closest thing to an artificial
pancreas we have. If you are an insulin-dependent diabetic, talk to your doctor
about pump therapy -- you might find the MiniMed 508 pump right for you. If
you need pump/infusion supplies, Minimed offers a complete line. Minimed also
offers (for doctor's use) the Continuous Glucose Monitor -- which can precisely
chart three-days' sugars, as an aid to establishing better control. And Minimed
has the (still investigational) 2007 Implantable Insulin Pump. For information
contact: MiniMed, Inc., 18000 Devonshire Street, Northridge, CA 91325-1219;
telephone: 1-800-646-4633; website: www.minimed.com
Adaptive Computing Equipment
Freedom Scientific is a powerhouse adaptive equipment maker
for the blind and visually impaired computer user. A union of Arkenstone, Blazie
Engineering, and Henter-Joyce, Freedom Scientific offers screen magnifiers,
talking attachments (voice synthesizers) for your computer, Braille printers
and much more. Whether you need adaptive software or hardware, check them out:
Freedom Scientific; telephone: 1-800-444-4443; website: www.freedomscientific.com
Diabetes Supplies
American Diabetic Supply, Inc., will ship your diabetes supplies
to your door. They handle all insurance claims and provide free delivery. Folks
with Medicare and/or private insurance (no HMOs) may receive supplies at no
further cost. For information, contact: American Diabetic Supply, Inc., 400
S. Atlantic Ave., Suite 108, Ormond Beach, FL 32176; telephone: 1?800?453?9033.
Easy Diabetic Cookbook
If you want to prepare healthy diabetic meals, but find most
cookbooks just too complicated, you need Linda Coffee and Emily Cale's The Diabetic
4 Ingredient Cookbook. There are over 200 recipes, in all food categories, with
complete nutritional and exchange information, each one using four ingredients.
The book costs $9.95 (+$2.95 shipping), from: Coffee and Cale, PO Box 2121,
Kerrville, TX 78029; telephone: 1-800-757-0838.
Diabetes Resource List
The Diabetes Action Network of the National Federation of the
Blind now offers Diabetes Resources: Equipment, Services and Information, a
comprehensive list of resources for diabetics. Diabetes Resources is a compilation
of companies and individuals offering products and/or information to help diabetics,
especially those who are blind or are losing vision, to self-manage their diabetes.
The list contains the following subject categories: General and Miscellaneous,
Insulin Measurement Devices, Talking Prescription Systems, Insulin Syringe Magnifiers,
Insulin Injection Systems, Diabetic Foot Care, Blood Glucose Monitoring Systems,
Insulin Pumps, Products for the Blind, Food and Diet, Literature and Information,
Internet Resources, Distributors of Diabetes Equipment and Supplies, and Medication
Assistance.
By using alternative techniques and products, blind diabetics
can continue being independent, and control their diabetes as efficiently as
do their sighted peers. Limitations are usually self?imposed??often all that
is needed to overcome negative thinking is simply to know where to go for information.
Diabetes Resources: Equipment, Services, and Information costs
$5 per copy and is available in Braille, large print, and audiocassette (recorded
at 15/16 IPS for the blind). Please order from: National Federation of the Blind,
Materials Center, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410)
659?9314. Note: the NFB Materials Center is open weekdays 12:30pm to 5:00pm
Eastern time.
Diabetes Supplies
Diabetic Supply Distributors, Inc., helps you save four ways
with your diabetes supplies:
1. Insurance billing. They file the claim, and they pay for
delivery. No advance payment needed -- and THEY do the paperwork.
2. Medicare billing. Medicare pays for approved diabetes supplies
(and, since last July, that list has covered type 2 diabetics!). Diabetic Supply
will handle the details.
3. Free, fast home delivery. Your order comes quickly to your
door.
4. Friendly personal service. You're not talking to a computer.
Contact: Diabetic Supply Distributors, Inc., PO Box 1820, Laurel
Springs, NJ 08021; telephone: 1-800-962-8098.
Change Your Ways
Good diabetes management is a lifestyle. Although doctors can
prescribe medication and recommend changes, sometimes "changing your ways,"
adapting/adopting a healthy lifestyle, can be a lot of work -- for there is
so much to learn.
The NEWSTART Lifestyle Center offers 12- and 18-day in-house,
physician-supervised intensive education programs, that emphasize permanent
lifestyle changes designed to help the participant lose weight, maintain health,
and adopt healthier habits in nutrition, cooking, exercise, and stress management.
Contact: Weimar Institute; telephone: 1-800-525-9192; e-mail:
WINDOWS Screen Reader
GW Micro now offers WINDOW?EYES Version 4 with Braille Support,
a screen reader program that also supports Microsoft WINDOWS ME, WINDOWS 95
and WINDOWS 98 (support for WINDOWS 2000 will follow later this year). Once
equipped with a voice synthesizer such as the Dectalk (your standard soundcard
won't do), any computer that can run WINDOWS can run WINDOW?EYES. WINDOW-EYES
reads the internet too, and provides you both speech and Braille output! A free
demo disk is available, or you may download the demo program from the Internet.
The WINDOW?EYES program is available from: GW Micro, 725 Airport North Office
Park, Fort Wayne, IN 46825; telephone: (219) 489?3671; fax: (219) 489-2608;
e-mail: [email protected]; website: http://www.gwmicro.com
Diabetes Supplies
When you need it, you need it. When it's time to test, when
it's time for medication, you need it already there. Diabetic Care Center will
ship your diabetes supplies to your door, and they do the paperwork. No forms,
no trips to the pharmacy. Medicare and most private insurance accepted. Call
the Diabetic Care Center, telephone: 1-800-633-7167; website: http://www.diabeticare.com
Treat Male Impotence
For men who've had diabetes many years, one possible ramification
is impotence, the inability to sustain an erection. This can be treated in a
number of ways, but the least invasive is vacuum therapy.
The Vet-Co Vacuum Therapy System for male impotence is FDA-approved,
safe, non-invasive, and easy to use. For information, call: Coast To Coast Home
Medical; telephone: 1-800-330-6316.
Diabetic Supplies On Line
Pharmacist Bryan Luna, Rph, offers diabetes supplies, including
glucose monitors, on line at www.diabeticsupplies.com. This convenient website
is simply laid out, and can be accessed in large print too. For those without
the internet, telephone: 1-877-787-7543. They will file your Medicare, Medicaid,
and private insurance forms. Free product catalog; 30-day money-back guarantee.
New Talking Blood Glucose Monitor
Based on the proven Accu-Chek Advantage meter, the Roche Diagnostics
Accu-Chek Voicemate provides the following: Clear, high-quality speech synthesis,
talking the user through preparations, test procedures, and results (English-
or Spanish-speaking voice now available), without the need for sighted assistance;
an "insulin vial identifier" which reads Eli Lilly insulin vials and
speaks their type, as a safety aid in tactile insulin mixing; a new, improved,
"touchable" test strip -- the Accu-Chek Comfort Curve (no more "hanging
drop of blood" needed!); no meter cleaning required; and a tactile "code-key"
system for programming test strip codes. The Voicemate is the most "blind-friendly"
talking glucose monitor available today, and the only one whose regular operations
require no sighted assistance at all.
The Voicemate comes with an adjustable over-the-shoulder carrying case, with
meter, voice box, battery, adapter cord, 10 Comfort Curve strips, earphone,
insulin check-vial, manual and quick-reference guide (in large print), and instructions
on audiocassette. The new meter (catalog #2030802 - English, or #3040208 - Spanish)
can now be ordered through any pharmacy (suggested retail price $495-525). To
do so, have your pharmacist contact Roche Diagnostics, 9115 Hague Road, Indianapolis,
IN 46250; telephone: 1-800-428-5074. For direct purchase, and a price below
$500, contact any of the following retailers: BeyondSight, Inc., Littleton,
CO: 303-795-6455 ($498); Independent Living Aids, Inc., Plainview, NY ($495):
1-800-537-2118; or the National Federation of the Blind Materials Center, Baltimore,
MD ($475): 410 659-9314.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
GLUCOWATCH AVAILABILITY
While the Cygnus Glucowatch Biographer is not truly "noninvasive"
(it requires one conventional finger-stick every 12 hours for calibration),
it is the closest thing we have at this time, and many people want to know when
they can get one. The Glucowatch is new technology, and many different components
and manufacturing processes have required FDA approval. As of November 1, 2001,
that process is apparently complete.
John Hodgman, Cygnus's president and CEO, states: "With
the recent FDA approvals of all outstanding pre-market approval supplements,
the key elements for launching the GlucoWatch Biographer in the U.S. are falling
into place. The distribution and customer support functions are ready. We anticipate
the first sales in the U.S. during the first quarter of 2002."
Basic FDA approval, in most cases, consists of permission to
market an item for use with adults. On November 6, Cygnus announced its application
for approval to market the Glucowatch for use with children and adolescents
(ages 7-17) will receive "expedited review," promising a faster decision
on its marketing to this age group.
Although Cygnus has started to run ads about the Glucowatch,
it is not yet commercially available. With the developments listed above, we
shouldn't have long to wait. Until then, best source for information is the
website: www.glucowatch.com
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
RECIPE CORNER
Artwork: Vegetables.
This issue, all recipes are taken from The Diabetic's Healthy Exchanges Cookbook,
by JoAnna M. Lund, published by Perigee.
HEARTY CORN CHILI
Ingredients:
8 ounces ground 90% lean turkey or beef
½ cup chopped onion
1/4 cup chopped green bell pepper
1-3/4 (one 14 ½-ounce can) stewed tomatoes, undrained
2-½ cups reduced-sodium tomato juice
1-½ cups frozen whole kernel corn
1 teaspoon chili seasoning mix
1/4 teaspoon black pepper
3/4 cup (3/4 ounce) Corn Chex, slightly crushed
Instructions:
In a large sauce pan sprayed with olive-flavored cooking spray, brown the meat,
onion, and green pepper. Stir in undrained stewed tomatoes, tomato juice, corn,
chili seasoning mix, and black pepper. Bring mixture to a boil. Lower heat.
Simmer 15 to 20 minutes, stirring occasionally. When serving, evenly sprinkle
about 3 tablespoons Corn Chex over top of each soup bowl. Makes: four 1-½
cups servings. 220 Calories, 5gm fat, 14gm Protein, 30gm Carbohydrate, 979mg
Sodium, 2gm Fiber. Exchanges: 2-½ vegetable, 1-½ meat, 1 starch.
WINTER FRUIT SALAD
Ingredients:
1 cup (2 small) unpeeled diced Red Delicious apples
1 cup (one 11-ounce can) mandarin oranges, rinsed and drained
3/4 cup sliced celery
1/4 cup Kraft fat-free mayonnaise
2 tablespoons Peter Pan reduced-fat chunky peanut butter
1 teaspoon lemon juice
Instructions:
In a medium bowl, combine apples, oranges, and celery. In a small bowl, combine
mayonnaise, peanut butter, and lemon juice. Add mayonnaise mixture to fruit
mixture. Mix gently to combine. Refrigerate at least 30 minutes. Gently stir
again just before serving. Makes: six 2/3 cup servings. 99 Calories, 3gm Fat,
2gm Protein, 16gm Carbohydrate, 122mg Sodium, 1gm Fiber. Exchange: 1 Fruit,
½ Fat .
SUPPER POT POTLUCK
Ingredients:
16 ounces ground 90% lean turkey or beef
3 cups (15 ounces) sliced raw potatoes
1 ½ cups chopped celery
2 cups sliced carrots
1 cup chopped onion
1 ½ cups frozen peas
2 teaspoons Italian seasoning
1-3/4 cups (one 15-ounce can) Hunt's Chunky Tomato Sauce
Instructions:
In a large skillet sprayed with butter-flavored cooking spray, brown meat. Meanwhile,
place potatoes, celery, carrots, and onion in Crock-Pot container. Sprinkle
peas over top. Spoon browned meat over vegetables. Stir Italian seasoning into
tomato sauce. Evenly pour sauce over meat. Cover. Cook on LOW six to eight hours.
Stir well just before serving. Makes six 1-1/4 cup servings. 258 Calories, 8gm
Fat, 18gm Protein , 29gm Carbohydrate, 559mg Sodium, 4gm Fiber. Exchanges: 2
vegetable, 2 meat and 1 starch.
CUPID'S CHOCOLATE CUPS
Ingredients:
1 (4-serving) package JELLO sugar-free instant chocolate pudding
mix
2/3 cup Carnation Nonfat Dry Milk Powder
3/4 cup Yoplait plain fat-free yogurt
1 cup water
½ teaspoon almond extract
1 (6-single serve) package Keebler graham cracker crusts
6 tablespoons Cool Whip Lite
3 maraschino cherries, halved
Instructions:
In a medium bowl, combine dry pudding mix and dry milk powder. Add yogurt, water,
and almond extract. Mix well using a wire whisk. Evenly spoon pudding mixture
into crusts. Top each with one tablespoon Cool Whip Lite and half a maraschino
cherry. Refrigerate at least one hour. Serves six. 182 Calories, 6gm Fat, 6gm
Protein, 26gm Carbohydrate, 406mg Sodium, 1gm Fiber. Exchanges: 1 starch, 1
fat and ½ skim milk.
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
IF YOU EXERCISE AND USE INSULIN, THEN PUMP IT!
by Sheri Colberg, PhD
Photo: Portrait. Caption: Sheri Colberg, PhD.
Even if you are only an occasional "recreational sports" participant,
any exercise you do can improve your body's ability to use insulin. Normally,
exercise causes a decrease in the release of insulin by your pancreas, at the
same time that muscle contractions are increasing blood glucose uptake. If you
take insulin, however, exercise adds to the effects of your injected insulin,
and your blood sugars can drop rapidly, to dangerously low levels. As an insulin-user,
you frequently need to make adjustments in your diabetic regimen to maintain
blood sugars, especially for higher-intensity or longer-duration exercise.
One insulin regimen stands out from the rest when it comes to managing exercise
effectively, and that is continuous, subcutaneous insulin infusion therapy,
or more simply, insulin pump therapy. Currently, more than 10% of individuals
with type 1 diabetes wear a portable insulin pump, and some insulin-requiring
type 2 diabetic individuals are choosing to pump insulin as well.
Insulin pumps today are pager-sized and sophisticated enough to give both basal
insulin doses (small amounts given every few minutes to cover your body's general
insulin needs) and boluses (larger doses given to cover carbohydrates in meals
and snacks, or to lower blood sugars when needed). Pumps contain a reservoir
or cartridge filled with fast-acting insulin analogues (Humalog or NovoLog)
that, compared to regular insulin, have a more rapid onset (5 to 15 minutes
versus 20 to 30 for regular) and an earlier peak in activity (90 minutes versus
150 minutes). Use of a pump allows for a more normal glycemic response following
carbohydrate intake, and more rapid correction of elevated blood sugars.
All insulin pumps currently on the market deliver insulin under the skin in
areas such as the abdomen, buttocks, legs, or upper arms, usually through an
inserted Teflon infusion catheter (using a metal insertion needle, which is
removed after insertion). Pump users replace the infusion set every two to three
days with a new set, at an alternate body site.
As an insulin pump user, you can be afforded many general benefits such as improved
overall blood sugar control, reduced risk of nighttime low blood sugars, and
improved awareness of low blood sugars. Furthermore, as a pumper with an active
lifestyle, the most valuable benefit you will experience is a metabolic response
to exercise that, with experience and frequent blood sugar testing, is similar
to a non-diabetic one. Wearing an insulin pump allows you unparalleled speed
and precision in making insulin adjustments for exercise.
Diabetic or not, you need to have some insulin circulating in your blood to
keep your blood sugars from going too high during exercise, but your actual
levels of insulin have an important effect on your metabolic response. Insulin
pump use is a more effective means to control circulating levels of insulin
during activities, and good metabolic control attained with insulin pump therapy
can result in a nearly normal hormonal and metabolic response to exercise. With
an insulin pump, you have several options to choose from to accomplish this:
you can lower either your basal insulin rates, your insulin boluses for food,
or both. You can make these changes before, during, and after exercise to optimize
your blood sugar control. For example, many people remove their pumps completely
during exercise lasting an hour or less, and they may also keep their basal
rates lowered for one to two hours after the activity and give smaller boluses
for post-exercise snacks.
Unfortunately, even with insulin pump use, your metabolic control with exercise
can potentially worsen instead of improving under certain conditions. If you
have elevated blood sugar levels at the start of exercise (250 mg/dl or higher)
with elevated ketones in urine or blood (resulting from the ineffective metabolism
of fats), you are experiencing a state of insulin deficiency, and exercise is
likely to raise your blood sugars more (and is, therefore, not advised until
blood sugars are lowered). Also, the type of exercise that you do can cause
blood sugars to rise (albeit temporarily); a short period of intense (near maximal)
exercise, especially when done in the morning before eating, can cause your
blood sugars to rise during the activity and stay elevated for up to two hours
afterwards. These effects are found in both non-diabetic and diabetic individuals
and are attributed to an exaggerated hormonal response to intense activity.
For such activities, pumpers can easily elevate basal insulin rates during and
for a period of time afterwards, or give an additional small bolus of insulin
to normalize blood sugars.
Current insulin pumps provide a variety of features such as different basal
increments and duration, basal profiles, frequency of basal insulin delivery,
temporary basal rate settings, bolus increments, bolus delivery, size, cost,
use in water, and other unique features. With regard to exercise, the most important
features to consider are basal rate and bolus increments, basal profiles, and
temporary basal settings. Certain pump models are clearly superior in their
ability to adjust for extended periods of exercise, either planned or spontaneous,
through refinements in basal rate reduction.
Which Pump?
Animas Corp. The Animas R-1000 has the best combination of features of any of
the pumps when it comes to participating in a variety of physical activities.
It has four different basal profiles that can accommodate varying workouts and
non-exercise days. It also has the smallest basal increments (0.05 units/hr.)
compared with other pumps, which allow insulin-sensitive individuals, such as
those on total daily insulin doses of 30 units or less, the flexibility of making
very minute changes in their basal insulin delivery. It also has temporary basal
settings slightly more fine-tuned (+10% for 0.5-12 hours) than other pumps.
It has the capability of delivering a bolus over an extended period (30 minutes
to 4 hours); this feature could be used to extend as well as reduce meal boluses
for exercise occurring after meals. In addition, the Animas pump is the only
one that is inherently waterproof - that is, it does not require additional
plug-ins or casings, so it can be used during surface water activities (such
as swimming, snorkeling, and water skiing).
Disetronic Medical Systems. The latest model from this pump manufacturer (D-TRON)
has a second basal rate profile that can be set for exercise days. The D-TRON
can also deliver meal boluses over an extended period, with meal bolus delivery
extended over periods up to four hours. This pump can also provide a combination
of extended and normal boluses; however, the other main model currently available
from Disetronic, the H-TRON Plus, does not offer these capabilities. The D-TRON
offers more flexibility in setting a temporary basal rate in 10% increments
or decrements over 4 to 24 hours than the H-TRON Plus, which offers an increase
in 10% increments for 12 hours or a decrease for only four hours. Both models
can be converted to be waterproof during surface water activities.
Medtronic MiniMed. Their current 508 model has the flexibility of three separate
basal profiles (making it also programmable for varying days of activity) and
small basal (0.1 units/hr.) and bolus increments (0.1 units), similar to the
Disetronic D-TRON and H-TRON Plus. The 508 model also offers extended boluses
(square wave) or a combination of extended and normal boluses (dual wave) similar
to the D-TRON. One mild drawback of the MiniMed 508 is that it is only water
resistant, not waterproof, and cannot be worn during water activities. For shorter
water workouts, this pump can simply be disconnected near the infusion site
when using most infusion sets.
Although few and far between, the potential drawbacks of insulin pump use during
exercise are important to know. Excessive sweating can cause your subcutaneous
infusion set to dislodge, which can result in elevated blood sugars or diabetic
ketoacidosis (DKA, a life-threatening condition that may require emergency treatment
in a hospital) if you fail to notice the displacement. To prevent infusion set
displacement due to sweating, you can use liquid skin preparations like Skin-Tac
and stronger adhesives to anchor the set more firmly to your skin. You can also
apply anti-perspirant to your skin at the infusion site to minimize sweating
beneath it. Also, to be on the safe side, it is best to follow the recommendation
to replace your insulin infusion sets every two to three days, and always check
the integrity of your infusion site following vigorous exercise, sweating, or
water contact.
Another potential problem is that insulin is temperature-sensitive. Exercise
in hot or cold environments can potentially cause insulin to degrade and lose
effectiveness. If an insulin pump is placed close to your body during exercise
in the heat, the insulin may become overheated as well. If unexpected high blood
sugars arise after such exercise, replace both the infusion set and the insulin
in the reservoir as a precaution. Especially with the use of rapid-acting insulin
analogues in your pump, diabetic ketoacidosis can begin as few as five hours
following the displacement of your infusion set, and exercise can hasten its
onset.
To experience the most normal metabolic response to exercise possible, learn
your body's response to each and every activity you do by testing your blood
sugars frequently (before, during, and after exercise). After a while, you can
usually predict the effect of the exercise on your blood sugars and make insulin
regimen changes to prevent hypoglycemia from occurring during and following
the activity. Plan out your insulin changes in accordance with your body's previous
responses. Prevent low blood sugars from occuring both during the exercise and
for up to 24 hours afterward. Finally, expect that once you have been doing
an activity consistently over a period of two to three weeks, you will experience
a training response affecting your blood sugar usage. Training increases fat
utilization, which has the potential effect of sparing blood glucose, resulting
in the need for lesser regimen changes. In addition, with an increase in your
muscle mass, overall insulin sensitivity may increase, causing the need for
lower basal and bolus insulin doses.
In order to effectively predict your glycemic responses, you also must understand
the metabolic nature of your exercise. The insulin reductions and/or the carbohydrate
intake you require for aerobic activities will depend on the intensity and duration
of your activity. You should be able to compensate for shorter, less intense
activities with a change in either your insulin (basal and/or bolus doses) or
carbohydrate intake. For short, intense activities such as weight training,
you may not require any immediate regimen changes, but you will need to anticipate
and prevent delayed-onset hypoglycemia from occurring later on. For longer,
more intense exercise, you will generally require a combination of carbohydrate
intake (15-60 grams extra per hour) and insulin reductions (25-100%) to maintain
normal blood sugar levels. For sport- and activity-specific recommendations
and athlete examples for insulin pump users (as well as other insulin regimens),
please refer to my book, The Diabetic Athlete (Human Kinetics, Champaign, IL).
Thus, even with diabetes, it is possible for you to experience a normal physiological
response to exercise, with more stable blood glucose levels during and following
your exercise. If you are not currently using an insulin pump, try exercising
when circulating insulin levels are lowest (either first thing in the morning,
or three to four hours after the last injection of short-acting insulin) for
the most normal response. If you have decided to get one, keep in mind that
choosing an insulin pump is mainly a matter of your preference: all of the current
models can be used effectively for most types of physical activity. The benefits
of exercise far outweigh the risks, so use your diabetes as an excuse to exercise
and stay fit!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
NEW TECHNIQUE TO TREAT FOOT ULCERS
Serious, infected foot ulcers are a frequent complication of diabetes, and,
unhealed, can be a major source of amputation. Diabetic neuropathy impairs nerve
sensation, and an individual can be unable to detect minor injury or infection.
Wounds that would otherwise receive prompt attention progress into ulcers, and,
with the impaired circulation that so often accompanies diabetes, can be desperately
slow to heal.
The American College of Foot and Ankle Surgeons reports that a simple surgical
procedure to lengthen the Achilles tendon, or the calf muscle to which it is
attached, can decrease pressure on the ball of the foot, and provide some relief
to patients with diabetic foot ulcers.
Cherie Johnson, DPM, FACFAS, a Seattle foot surgeon, developed the new technique.
She explained that the increased blood sugar levels brought on by diabetes affect
collagen fibers in the Achilles and cause it to tighten. The Achilles is attached
to the back of the heel, and is pulled by two muscles in the calf The tighter
the Achilles, the harder the pull on the heel bone, and the more pressure on
the bottom of the foot.
The procedure Dr. Johnson developed lengthens the muscle or the Achilles tendon,
slackening and reducing the pressure on the ball of the foot, creating a better
environment for the healing of diabetic foot ulcers. She reported the operation
is proving effective for managing other diabetic foot problems, such as adult-onser
flatfoot, and rocker-bottom Charcot foot.
For more information, contact your podiatrist, or the American College of Foot
and Ankle Surgeons: 515 Busse Highway, Park Ridge, IL 60068; telephone: (847)
292-2237.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
A PROACTIVE APPROACH TO REDUCING DIABETES
by Peter J. Nebergall, PhD
Photo: Portrait. Caption: Peter J. Nebergall, PhD.
Most people do not fix what they do not perceive to be broken. Although type
1 (insulin-dependent) diabetes is unambiguous in symptoms and treatment, perhaps
90% of all diabetes is of the non-insulin dependent type (type 2), with symptoms
that only become "obvious" once the disease has substantially progressed.
By the time many type 2 diabetics (and often their primary care physicians)
realize action is necessary: diet, exercise, lifestyle changes, oral medications,
perhaps insulin, the condition, and its destructive high blood sugars, has been
left to do its work for years. Damage has been done. Complications, like retinopathy,
neuropathy, and nephropathy, are likely well underway.
But we go to our doctors when we're ill, because we perceive ourselves to be
"ill." We visit the physician because we feel bad, and we wish to
feel better. We react to the stimulus of perceived illness. This is understandable,
but does not allow much room for prevention.
Of course this idea, "Don't see the doctor 'til you need to," comes
from our "crisis intervention" model of medicine; but to blame, to
point fingers at this stage is as pointless as is the parachutist's complaint
that his equipment has just failed. It's a little late to talk about why. Some
problems are better prevented. Sometimes it is better to be proactive.
What is a "proactive approach" to reducing diabetes? How do we carry
out such a multipronged attack? Step One is, of course, education. We need to
know what ails us, and what it is we can avoid, if we take the necessary actions,
and then we need to know what those actions are. Sounds simple, eh?
If you have type 2 diabetes, you know most of the time you don't feel very bad.
You might think that because you don't feel very bad, it isn't very serious,
and you don't have to do anything about it just now. I'll wait 'til it hurts
...
You couldn't be more wrong.
Diabetes damages your body with high sugars. It doesn't care whether your sugars
are high from type 2, type 1, or some other cause -- if they're "up,"
they're doing damage. Type 2 diabetics who let their sugars run "because
they don't feel bad" are doing serious damage to their eyes, kidneys, hearts,
and nervous systems.
I want to tell you a big secret: There IS no "diabetic diet." There
is no specific "exercise plan for diabetics." There's only something
called a "healthy lifestyle" -- and it's the SAME whether you have
diabetes or not!
The human body was meant to be slender, active, and not overly stressed. Do
you overeat? Are you carrying too many pounds? Do you work sitting down? When
you want an "adventure," do you go watch one? Is your idea of "healthy
diet" a full plate, with seconds on everything? How 'bout a big T-bone
steak, and a plate of fries? How about a 40-ounce chocolate milkshake with a
"sidecar?"
And at your work, do you regularly get steamed up? Are you regularly ready to
scream and throw things -- but you go have a few beers, and a cigarette, instead?
Isn't it time to talk about healthy lifestyle?
Hippocrates the Physician, the ancient Greek doctor who founded modern medicine,
advised his patients that a healthy diet, in moderate amounts (that means what
you need, not "how much you can hold!"), coupled with regular physical
exercise (and that really does mean more than "20 minutes, twice a week")
would do a great deal to keep them healthy. He was right, of course.
Suppose you have diabetes, and don't want the complications. Suppose you don't
have it, but you're from a high-risk group (and maybe someone has it in your
family), and you want to cut the risks. Or, suppose you just want to feel better.
It's all the same -- a commitment to healthy lifestyle.
I remember the story of the 64-year old heart patient who, advised by his doctor
to get some regular exercise, joined an Aikido Dojo (Aikido is much like Tai
Chi), and died at age 96, Grand Master of the style. Its never too late -- there's
something you can do, and the gyms are full of people just like you. Or you
could get a big puppy who needs lots of long walks. Just talk to your doctor
about it first.
Diet is a little more complicated (and there are professional dietitians to
advise you), but the biggest food problem most Americans have is too much of
it. Count your calories! Unless you're a steelworker, a cowboy, a furniture
mover, or a stonemason, I'll bet you eat more calories than you need. Losing
weight is a matter of retraining yourself. The Hollywood press is full of stories
of actors and actresses fighting the same battle, but the ones who are winning
do regular workouts (one called Pilates is much in fashion now) and follow disciplined
diets like The Zone.) Check it out with your dietitian.
Stress? Most of us would feel a lot less stressed if we went out and played
some sports. Even a good workout, a chance to strain against something heavy,
helps cut the stress level. So exercise provides a double benefit!
Everyone is a little different. Talk to your doctor about what you can do with
diet and exercise. It'll help. If you don't have diabetes, being proactive can
help you stay that way, and if you do, once you've been advised of the precautions
you need to take to keep yourself safe, being proactive can cut your risk of
complications, your need for expensive medications, and your stress level. What
are you waiting for?
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
INDEPENDENCE AND THE NECESSITY FOR DIPLOMACY
by Marc Maurer
Photo: Portrait. Caption: Marc Maurer
(Marc Maurer, President of the National Federation of the Blind, delivered the
following convention banquet address on July 6, 2001, at the 2001 national convention
of the National Federation of the Blind, in Atlanta, Georgia. This article appeared
in the Braille Monitor, August/September 2001 edition, published by the National
Federation of the Blind. Copies of this address, and others, are available,
without charge, from the National Center for the Blind, in large print, Braille,
audiocassette, and on the World Wide Web. Contact: NFB National Center for the
Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone: (410) 659-9314;
website: www.nfb.org)
The science fiction writer Robert Heinlein wrote that the primary diplomatic
question is shall there be talk??or war? In the struggle of the blind to achieve
first?class citizenship and equal treatment within society, diplomacy has been
an essential tool, and in a number of cases, its practice by the National Federation
of the Blind has risen to a high art.
So what is diplomacy, who are the diplomats, what are the arenas for this art,
and what are the objectives to be achieved? The dictionary tells us that diplomacy
is "the art or practice of conducting international relations [or], tact
or skill in dealing with people." Ambrose Bierce, in a more pungent definition,
says that diplomacy is "the patriotic art of lying for one's country."
The Italian statesman, Benso di Cavour, questions the skill of diplomats. "I
have discovered [he says] the art of fooling diplomats: I speak the truth, and
they never believe me." The American comedian Will Rogers avers that "diplomacy
is the art of saying 'nice doggie' until you can find a rock!" The old
adage asserts that, when a diplomat says yes, this means maybe; when a diplomat
says maybe, this means no. It adds, if a diplomat says no, he is no diplomat.
Such pithy statements suggest that there is an element of duplicity in diplomacy,
but Dwight D. Eisenhower puts this suggestion in perspective when he observes
that "the opportunist thinks of me and today. The statesman thinks of us
and tomorrow." Incidentally, General Eisenhower also said at the end of
the European campaign in World War II, "I say we are going to have peace??even
if we have to fight for it."
From the point of view of the National Federation of the Blind, diplomacy is
the art of persuading others that the philosophical foundation we represent
should be considered and, after it has been understood, adopted. This point
of view is forthright, distinctive, unmistakable. Although it has been expressed
in many ways, it has remained the same since the inception of the National Federation
of the Blind in 1940. We do not believe we have learned everything there is
to know about blindness; but we are certain the principles which caused the
Federation to be formed reflect reality; they serve as the bedrock of Federationism;
and we the blind will not be deterred from their implementation.
The blind have the right to govern themselves. Nobody can represent the blind
except those elected by the blind to do it. The blind have a right to equal
treatment within society. The blind can be as independent and productive as
anybody else, if there are acceptance and understanding by the public at large
and by the blind themselves and if adequate training for the blind is available.
The blind do not want custodialism or mollycoddling; we can and will stand on
our own feet and do our own thing. Perhaps most important of all, we the blind
will speak on our own behalf and will not let others declare our intentions
for us, interpret our lives for us, or control our destinies??that is our responsibility,
our right, our mechanism for liberation, our passport to freedom!
To one degree or another, each of us in the Federation is a diplomat??charged
with the duty of persuading members of the public and blind people that the
perspective about blindness represented by our philosophy is the way to independence.
This is, in fact, one of the prime purposes for the formation of the Federation.
If there were no need to spread the word about the philosophy of independence,
much of the urgency for maintaining the organized blind movement would be gone.
All of us are part of the diplomatic service. When we speak, we speak for the
Federation with a unified and positive voice??the voice of the organized blind.
Who is it we want to reach with our message of freedom? The persuasive voice
of the Federation is directed toward the public at large, the agencies established
to serve the blind (both public and private), governmental bodies, corporations
and businesses, other organizations of the blind, individual blind people who
are not a part of any organization, and ourselves. Our message is clear and
uncomplicated. We want to work in peace and harmony with anybody prepared to
promote the interests of the blind. We are ready to commit our time, our energy,
our financial resources, our imaginative effort, our enthusiasm, and our other
talents. However, we will not join forces with those who expect us to do all
the giving and sacrificing so they may share the benefits. Furthermore, we will
oppose those who try to limit opportunity for the blind. We want peace and harmony,
and in most cases this is precisely what we get. We who are blind enjoy enormous
good will from members of the public and from the vast majority of officials
in the field of work with the blind. However, there are exceptions.
Harmony is always worth having unless it is obtained at the cost of fundamental
fairness or missed opportunity. In such circumstances harmony becomes an oppressive,
intolerable burden. As President Woodrow Wilson said, "There is a price
which is too great to pay for peace, and that price can be put into one word.
One cannot pay the price of self?respect."
Some will argue that nobody could oppose this philosophical approach. After
all, the elements of it are fundamental to democracy; they are an essential
part of an independent life. Furthermore, some may tell us that the notion of
the necessity for diplomacy among entities dealing with blindness is out of
proportion. Diplomacy serves (they may say) to manage affairs of state between
nations. Conflicts, recriminations, and wars cannot exist among organizations
and programs dealing with blindness. To those who possess such a naive, uninformed
attitude, I say, "Don't you believe it!" There are conflicts aplenty,
and the need for diplomacy is urgent??especially because we, the blind, are
so often misunderstood.
Consider, for example, the unfortunate situation in which certain individuals
have attacked the National Federation of the Blind with statements that are
both critical and false. Two such people are William Penrod and Kent Jones of
Kentucky, who proclaim that they are certified orientation and mobility specialists
(or as they abbreviate it, COMS). Penrod and Jones feel a strong attachment
to being certified; it gives them status and makes them feel important. Furthermore,
they have been attempting to persuade all other professionals in the field of
blindness in Kentucky that their approach is the only one. Those who have been
certified by their organization should be regarded as valuable and worthwhile,
they tell us. Those who have not been certified may be dismissed as irrelevant.
If you have been admitted to the old?boy network, you are all right. If you
are not a member of the club, forget it.
In a paper circulated throughout the state last fall, these professionals charge
that the National Federation of the Blind is in direct opposition to every practicing
certified orientation and mobility specialist and that affiliation with the
National Federation of the Blind means abandoning professionals in the field
of work with the blind. Whatever it is that caused them to write such false
accusations is unclear. However, the National Federation of the Blind has been
working with the University of Louisville during the past few years, and these
two so?called professionals appear to have been worrying that the influence
of the Federation in university programs to instruct teachers of the blind might
continue to increase. Apparently Messrs. Penrod and Jones fear such cooperation.
Why would those who claim professional status object to working closely with
the blind??especially the blind who have organized for collective action? Is
there something about them they don't want us to learn?
There are a number of other misstatements contained in the paper, but it is
not necessary to list them all. It is sufficient to note that two allegedly
prominent individuals working with the blind are encouraging others to believe
that professionalism and professional status are reserved to themselves and
their organization. Association with the National Federation of the Blind, the
unspoken implications repeatedly suggest, is unprofessional and unsafe. Their
argument is that professionalism should be left to the professionals, and the
blind (especially the organized blind) should keep out.
If they think they can prevent us from having major input into the nature of
the programs that affect our lives, they are mistaken. This is the very essence
of the problem we have had with a number of self?serving entities that have
decided to tell us what is good for us. If we think the advice we get is wrong,
we reserve the right to ignore it, reject it, or confront it. Furthermore, we
expect to have a voice in the designing of the programs being established and
conducted for our benefit??we expect it whether the designers like it or not.
We have a right to participate in decisions that determine our future, and we
will be heard!
It is essential that we be clear. Although the authors of the paper may feel
uneasiness about working with us, we have no animosity toward them. We want
to cooperate with them in harmony. We have been informed they have been trying
to organize opposition to the National Federation of the Blind, but we have
no wish for conflict. Their paper is their own; it has not been adopted by any
organization. Their effort at creating confrontation is their own; it has not
been espoused by any group. We invite them to join with us in building programs
that offer opportunities to the blind which have not yet become available. We
shall use what diplomatic skill we possess to let them know we are willing to
join with them in mutual harmony and respect if they come to the effort with
the same spirit.
Fashion designers do not often focus on the needs of the blind, but, when it
happens, the results can be bizarre. An Indian designer has issued a line of
clothing (known as a range) particularly manufactured to meet the specialized
requirements of the blind. A Reuters wire story, sent from Bombay on April 10,
2001, gives details. Here are excerpts from the article.
"One of India's most innovative fashion designers, Wendell Rodricks [the
article begins], has launched a collection with Braille embroidery and bead?work
designed specially for the visually impaired.
"The outfits have Braille embossed in the form of French knots and bead?work
to make it easy for the visually impaired to know the color."
I interrupt the article to say that adding features to help identify color (while
not absolutely necessary) seems like a good idea, provided that it is not done
in such a way as to be obnoxious or obtrusive. However, there is more to the
article.
"The collection [it continues], mostly in white, black, and flesh colors,
has been designed in washed cotton, silken crepe, rippled jersey, and stretch
lycra to emphasize the feel rather than the look.
"Since putting buttons in the wrong button?hole [the article continues]
is a common problem, the Goa?based designer has taken care to number the button
holes in Braille.
"Rodricks held a preview of the range titled 'Visionnaire' in a leading
Bombay fashion store on Tuesday, with top models draped in his creations.
"`This is the most spiritually valuable collection I have ever designed.
People say I have contributed internationally to the blind,' Rodricks told Reuters
after the show.
"Leading Indian models [the article continues] sashayed before a media
crowd in flowing, wispy, white tunics, sarongs, and halters looking chic yet
mystical.
"`People are obsessed with how they look, but I wanted to put feeling in
these clothes,' said Rodricks, forty."
That is what Reuters distributed all over the world less than three months ago.
I ask you, as you prepared for this banquet tonight, did you have any trouble
deciding which buttons should be inserted into what holes? Would it have helped
to have the buttonholes numbered in Braille? Of course, the person who created
these outfits is only a fashion designer and can't be expected to have any perspective
about blindness, but he got the idea from a blind professor. How do you suppose
the professor looks in class?
And another thing, what can it mean for clothing designed for the blind to be
mystical or spiritually valuable? Though spirituality is both necessary and
desirable, clothing should be made of physical matter, not spirit. The very
thought of such clothing conjures up images that are at least as wispy as the
items designed by Rodricks.
Undoubtedly he believes his efforts are helping, but they have caused misinformation
to be printed in newspapers around the world. This misinformation could be amusing
if it were not so damaging. However, if the public accepts the misleading suggestion
that the blind are so lacking in ability that we can't even get the buttons
in the right holes, how can we hope to receive equal consideration for education,
employment, or other pursuits?
Despite the Rodricks portrayal of blindness, or perhaps because of it, our diplomatic
efforts continue. At one time many, many people believed that the blind were
incompetent. Assertions of our incapacity still exist, but they are fewer today
than in former times and often less blatant. We will continue to provide the
information about our talents and abilities, and we will never quit until the
truth about us is known and accepted throughout our country and beyond our borders.
This is the commitment we have made; this is the commitment we will keep; this
is the nature of the National Federation of the Blind.
A woman who became blind in her retirement years, Frances Lief Neer, was discouraged
and frustrated by blindness. She had not discovered the National Federation
of the Blind, and information was lacking. She felt she had little left to contribute.
Not knowing what to do, she signed up for a college course in what they call
vision rehabilitation. With her personal experience of blindness and her new
college education, she wrote a book entitled Dancing in the Dark.
Although there are a few passages in this book that contain genuinely good advice,
and although the tone is often superficially upbeat, emphasizing the necessity
for good cheer and persistence, the experience of this blind author is so limited
and her understanding of blindness is so minuscule that her admonitions are,
to say the least, fanciful. Nevertheless, she offers recommendations she urges
others to follow.
Chapter seven of this book is entitled "Public Life: The Bank, the Post
Office, and Public Restrooms." The public restroom section contains the
following passage:
"This is, in all polite company, a delicate topic. But blind people must
be brave! [That is what she says, brave!]
"You might need [she continues] a public restroom almost anywhere: in the
waiting room of a railroad terminal or airport, in a restaurant, at a theater
or museum, and so on. What to do? You ask someone to help and get yourself escorted
to it. Generally a service person connected with the facility, a flight attendant
or porter, for example, will be available to do this for you.
"Once you have been taken to the door [she continues], unless you're sure
of the layout inside, it's best to wait until you hear someone else entering
and ask, 'Excuse me, will you please help me into the restroom?' After you go
in, you can also ask to be shown to a stall."
The author continues with advice about what to do once inside the bathroom,
recommending, among other things, that blind men not mistake the sink for a
urinal. If she included that piece of advice to be funny, it isn't. If she really
thinks we are likely to make such mistakes, she didn't learn much in college.
The book also includes a section on dining out. Here are a few excerpts:
"I used to dump food and water on myself, on tablecloths, and on the floor
until I learned a few important rules [the author says].
1. Find out where your wine or water glass is. When you pick it up, return it
to that spot.
2. Lean over your plate when you eat. Your posture will have to be a little
less upright than you're probably used to, but your food and fork are over the
dish.
3. Be generous with napkins. Get extras, and put a couple of them under your
chin and a couple more on your lap. If you have a cloth napkin, spread it across
your chest in self?defense. This may not look elegant, but it will save you
a lot of cleaning bills and even more embarrassment.
4. If you've got a small plate of food, a salad maybe, put the plate on a larger
plate so that what you spill falls on the big plate and not on the table or
on you. (At home you could use a tray.)"
Or you could just eat in the bathtub so that you could rinse off afterward.
I admit that I added this last piece of advice myself, but it fits in with the
general tone of the rest of this mishmash of folderol.
It is tempting to dismiss this volume as the work of a nut. Nevertheless, this
book has been circulated to a number of institutions, and its author has sought
approval from individuals of note including, among others, Dr. Dean Edell, who
praised the work as "compassionate" and "provocative" and
as "a valuable source book for the visually impaired, for their friends
and families, and also for professional workers." Is this really valuable?
Who could seriously believe it? How about provocative? I can think of a number
of blind people who will be provoked.
However, Frances Neer is not the only person capable of expressing an opinion
about blindness; we also have the capacity to write. Sometimes our efforts at
diplomacy take the form of exposing the ill?considered misrepresentation of
our circumstances foisted off on the public by others. We will correct the misrepresentations
with as much skill and tact as we can, but we will do it. We will no longer
tolerate the lies about us to masquerade as the truth. The author recommends
persistence; she will never meet an organization that personifies this quality
more than our own. We never quit; we never give up; we never stop. We know it
is respectable to be blind, and we insist that others recognize this. If they
will not, they will meet the force of the blind organized to take collective
action??they will meet the National Federation of the Blind.
It is not only members of the public or self?proclaimed experts who sometimes
tell us that our blindness makes us strange or unusual. Occasionally individual
blind people who are seeking to excuse outlandish behavior declare that blindness
has created within them characteristics which have nothing whatever to do with
the loss of sight. In 1997, we received a letter from a law firm requesting
our assistance. It says in part:
"My client is seeking a divorce from her husband after over 20 years of
severe spousal abuse. Her husband happens to be blind.
"The disturbing part of this case revolves around this man's current position
that his blindness is somehow responsible for his abusive behavior. It is further
complicated by the fact that he now claims, despite 20 years of commuting to
Manhattan to work in a supervisory position and the earning of a doctoral degree,
that because of his blindness, he cannot be a functioning member of society
and needs someone to provide for his every need from cooking to typing, etc.
"His attorney is alleging [the letter continues] that a great majority
of all blind persons are unemployed and that the disability of blindness causes
people to become cruel, abusive, emotionally unstable, and [that they] often
suffer from alcohol abuse, rendering their lives a shambles. The husband now
claims his expenses will exceed $10,000 per month in that no low?cost or free
services are currently available to the blind.
"The blind are forced to hire a cook, chauffeur, typist, housekeeper, etc.,
or be banished to a life of misery."
These are excerpts from a letter written by a lawyer requesting our help. The
arguments made by the blind husband are not merely a cruel, underhanded, and
despicable fraud, but slimy as well. The man may have a warped soul, but blindness
did not warp it. He may also be an abusive, besotted, miserable human being,
but blindness did not cause the abusiveness, generate the misery, or induce
the intoxication. We are prepared to support the blind who behave with decency
and fairness, but such a man we cannot support.
We tell it like it is, and we do not countenance abuse. Those who would attempt
to hide vile behavior under the cloak of blindness can expect nothing from us
but opposition. Their effort at disguise will do them no good. There is far
too much at stake to permit such twisted logic to stand unchallenged. Blind
people are not as described by this man, and we will not permit him to bedevil
our lives by the notion that we are. He may be miserable, but we are not, and
no amount of flimflam can induce us to change what we have determined to be.
This, too, is part of the National Federation of the Blind.
In a tolerant age, toleration itself sometimes becomes intolerable. Freedom
of speech and of the press are among the most fiercely protected rights guaranteed
by the Constitution of the United States, and they should be. However, there
is no obligation to offer a platform to a dangerous crank.
Professor Peter Singer became the bioethics expert at Princeton University in
1999. He was appointed to this post despite his having published books in which
he has advocated the killing of disabled infants. According to Singer, "The
killing of a defective infant (he sometimes substitutes disabled for defective)
is not morally equivalent to killing a person. Very often it is not wrong at
all." Singer adds, "By a person I mean something like a rational or
self?aware being." Because babies are not self?aware, according to Singer,
and because disabled babies are a burden to society, again, according to Singer,
killing them is, as he says, "not wrong at all."
When I first heard of the appointment of Professor Singer, I thought surely
there must be some mistake. I am aware that a few people (both blind and sighted)
hold the opinion that life for a disabled person is not worth living. I am also
aware there are those who view disabled individuals primarily as a burden upon
society. According to such people, the disabled are to be tolerated at best,
but not welcomed or loved. However, the major centers of learning have not,
until now, espoused these views. To advocate that an entire class of human beings
be the proper target for death is, I had believed, unthinkable in rational moral
society. Yet Professor Singer was appointed as the bioethics professor in the
Center for Human Values at Princeton. Singer makes an argument that there is
a distinction between killing a disabled infant and killing an older person
with disabilities, but the distinction is thin and the argument hollow. Singer
would be the arbiter not only of our destinies, but of our very existence. He
has arrogated to himself (at least in theory) the authority reserved for God
to decide who shall live and who shall die, and he is doing it as a prominent
professor at an eminent educational institution.
In Hitler's Germany the first group to be selected for extermination was the
disabled. Only later was there a systematic effort to exterminate a whole race.
I find myself, as I am sure you do, morally revolted by this man's teachings.
The very suggestion that death is the best alternative for the disabled will
cause the misjudgments that so often occur to become more egregious??the suggestion
itself is likely to cause death.
What can we do to stop this man? We can join with each other to denounce the
depravity of his counsel. We can combine to assert our right to live and be
free. We can offer a creed which has at its core the liberating comprehension
of the normality and productiveness of the blind. We can spread the word about
our independence and our unwillingness to be browbeaten by the professors in
their halls of ivy. We can fight for the laws that continue to guarantee our
right to an equal existence with others and to the liberty they enjoy. And we
can band together with the unshakable commitment that, if anybody??a bioethics
professor, a doctor, or anybody else??if anybody lays a hand on one of us, at
no matter what age, for destructive purposes, we will respond with absolute
determination and fury. Our children are no less important to us than anybody
else's. And even if blind children are not directly descended from us, their
future is our future. In every meaningful sense they belong to us, and we will
protect them. There is a time for diplomacy and a time to put it aside. When
the academics plan for the killing of our children, the time for talk is at
an end, and the time to act has come.
Last winter a man sent a letter to the National Federation of the Blind requesting
our help because he himself is becoming blind. The fears and frustrations that
often accompany the onset of blindness are expressed in simple, straightforward
terms. Here, in part, is what the letter says:
"I am writing this letter because I don't know what else to do. My eye
doctor has informed me it is only a matter of a short time until I lose my sight.
To be honest with you, I have never been frightened of anything in my life,
that is, until now. I know I will not be able to keep my job, but I might be
able to stay in another position within the company."
Notice this man is giving up at least a part of what might be his without a
struggle. He is accepting the notion that his capacity to work is diminished
because of blindness and that his talents will no longer serve him as they once
had. But there is more to the letter.
"I don't have a computer, [he says] recently divorced, no family for support,
and my ex is refusing to let me see my kids because they deserve a new daddy
who can see them."
I interrupt to ask, did the divorce come because this man's former wife also
thought she deserved a husband who could see her? As if sight were more important
than the affection and love of a father for his own children. But we are not
finished with the letter.
"Any information you might be able to send me [writes the man] will be
greatly appreciated. How do I get to and from work? Do my laundry? Cook my food?
Do the shopping? Pay my bills? Read my mail? As it becomes more and more difficult
to see, I get more and more frightened. My biggest fear is ending up on the
street or in a home for the blind where I will be forgotten."
These are the words of a man facing blindness. The fear of blindness is real.
Finding a method to reach beyond that fear is necessary to establish the mindset
for independence. His former wife has indicated his children deserve a daddy
who can see, which must be a blow to his feelings of dignity and self?esteem.
However, he has written for help, and we are prepared to give it. With the support
and assistance of thousands of blind people, he will come to know what possibilities
there are for him, and he will cease to feel despair. This too is an element
of our diplomacy; this is part of the public education program we carry into
effect everyday. This is one more reason for the National Federation of the
Blind.
With all the false information printed and distributed about the blind, with
all the pain and emotional heartache associated with becoming blind, and with
all the attacks upon our motives and programs, it may seem the prospects for
us are dim. However, there are also the other elements??the successes, the accomplishments,
the triumphs??which give balance and perspective. The blind people who have
found work, the blind parents who have gathered the resources and sustained
the inspiration to raise children with promising opportunities, the blind students
who have gained an education, the blind children who have learned to read and
who are just beginning to explore the world of infinite possibility, the blind
people who have entered public life, and those who have engaged in high adventure
depict an entirely different comprehension of blindness and illustrate the hope
and faith we possess.
Two years ago, in 1999, we determined to support the efforts of Erik Weihenmayer,
a blind mountain climber, to reach the top of the highest peak in the world,
Mount Everest. At ten o'clock on the morning of May 25, 2001, Nepalese time,
Erik Weihenmayer reached the spot on the globe where he had intended to go and
where we had intended to help him go. He is the first blind man ever to stand
so high. For him to get there required enormous courage, tremendous physical
strength and sacrifice, and an undauntable mental attitude. He did not go alone.
He was accompanied to the top by 18 other people, the largest team ever to reach
the summit of the mountain. But he was accompanied in spirit by many, many thousands
more??blind people from every corner of the United States, who had dreamed with
him, hoped with him, prayed for him. It is not only that the tens of thousands
of the members of the National Federation of the Blind helped to raise the money
for the expedition??though that is, of course, important??but we also believed
in him, in his capacity to understand the danger, to plan (along with others)
the expedition, to carry his load and do his part in dealing with the challenges
of the climb itself, and to bring the plan to its ultimate success. His faith
is our faith; his spirit is our spirit; his extraordinary exploit exemplifies
the organized blind movement??our movement. Not many blind people will ever
climb Everest, but all of us have our own mountains to conquer, and we will.
We congratulate this pioneer for going where no other blind man has gone before.
We welcome him back to our midst as the objective symbol of a pioneering organization
dedicated to ensuring blind people everywhere have the opportunity to go where
no other blind people have been before. We welcome him back as a colleague;
we welcome him back as a member of the National Federation of the Blind.
At the beginning of our organization, when a tiny group of blind men and women
came together at Wilkes?Barre, Pennsylvania, in 1940, to form the National Federation
of the Blind, our founding president, the brilliant blind professor, Dr. Jacobus
tenBroek, described blind people as living "in material poverty, in social
isolation, and in the atrophy of their productive powers." There were virtually
no jobs, almost no education beyond the school for the blind, few programs to
teach productive skills, only a small number of books, and practically no hope.
However, Dr. tenBroek and those few who joined with him believed conditions
could be changed and a brighter, more productive future could be forged. Dr.
tenBroek's words to that first gathering are equally applicable to us today.
Part of what he said is: "We have long known the advantage and even the
necessity of collective action. Individually, we are scattered, ineffective,
and inarticulate, subject alike to the opposition of the social worker and the
arrogance of the governmental administrator. Collectively we are the masters
of our own future and the successful guardian of our own common interests."
The Federation would, Dr. tenBroek said, "unify the action and concentrate
the energies of the blind, for an instrument through which the blind of the
nation can speak to Congress and the public in a voice that will be heard and
command attention."
Fifty years later, in 1990, the second long?time president of the Federation,
Dr. Kenneth Jernigan, who was also the most brilliant builder of programs for
the blind of the twentieth century, could say, "The blind are not psychologically
or mentally different from the sighted. We are neither especially blessed nor
especially cursed. We need jobs, opportunity, social acceptance, and equal treatment??not
pity and custody. Only those elected by the blind can speak for the blind. This
is not only a prime requisite of democracy but also the only way we can ever
achieve first?class status."
These are the things that our presidents of the past have told us??separated
by 50 years. To speak for ourselves; to plan for our own lives; to join with
each other for the enhancement of opportunity; to believe in our own capacity;
to take every reasonable step for the integration of the blind in our communities;
to work in harmony with our sighted friends and neighbors; to share with one
another the progress we have made; to teach our colleagues and ourselves the
goodness of tomorrow, provided we keep faith with Federation members who have
begun our movement and built it, and provided we do our own part??these are
the things the Federation has always done. These are the things we will continue
to do.
We insist our fundamental humanity be recognized with all that this implies.
We want the planners to think about us when they make decisions and not to ignore
us as though we do not exist. Furthermore, we want them not only to think about
us, but to consult us as well.
We must have books; we must have training in Braille, cane travel, and the other
specialized techniques used by the blind; we must have programs which emphasize
the positive opportunities available to the blind; and we must have laws that
accord us equality of opportunity and equality of access to information. All
of this we expect.
Despite the arguments of the so?called professionals who tell us that becoming
affiliated with us is equivalent to abandoning professionalism; despite the
representation of fashion designers that we cannot get the buttons in the right
holes; despite the authors who tell us that we cannot eat with grace and require
multiple napkins or that we might mistake the sink for the urinal; despite the
claim by certain blind people that blindness causes cruelty, abusiveness, and
alcoholism; despite the teachings of the professors who believe that, in certain
instances, we do not even have a right to continue to exist??we will find a
way to succeed, and our sighted friends and colleagues will join with us in
celebrating our success.
More of us are employed today than ever before in history, and in a broader
array of endeavors. Greater numbers of us are becoming educated, and the fields
of study are as diverse as the curiosity of mankind. Many of us are establishing
businesses of our own and becoming successful by every economic measure. Furthermore,
our organization is growing and accepting ever?greater challenges. Among others,
we have decided to build our own Research and Training Institute for the Blind,
which will have a spirit much different from that encountered in certain corners
of Princeton. We have decided to build it because one of the elements frequently
missing from research is the experience of the blind themselves. We look to
the future not with gloom, but with joy; not with despair, but with optimism;
not with dispirited disgruntlement, but with a determination to build for ourselves
and for those who come after us.
Some of us have been in the Federation a long time, going back half a century;
some of us are new to the cause. Some of us are college?educated with post?graduate
degrees; some of us are not. Some of us have financial security; others have
barely enough to make ends meet. Some of us have learned cane travel and the
other skills of blindness; some of us are only now becoming aware of specialized
techniques. Such minor differences are of no importance whatsoever. In everything
that matters, we are one??we are the blind??we are the people of the movement
who have come together to make things happen, to create opportunity, to dream,
to work, to explore.
Our diplomatic service is the force for change. Some may become discouraged;
we will not. Some may be tempted to quit; we will not. Some may be encouraged
to believe the defeats which inevitably come to us all will end our journey;
they cannot. Our organization will not be deflected from its course or turned
from its purpose. The struggle for recognition of our basic humanity has been
long??reaching back through more than half a century to the time of the beginning
of our movement, and the effort to fulfill our dream of being able to use our
talents to the fullest stretches ahead of us. But we are closer to it than we
have ever been, and our momentum is accelerating.
When I look into the hearts of Federation members, I know there is absolutely
nothing that can prevent us from completing our mission. It will not be easy
or simple. However, we know our business, we know the language of diplomacy,
we are prepared to bide our time if we must, and we know how to work We possess
the dedication, the commitment, the courage, and the talent; nothing else is
required.
Whatever the costs, we will pay them. Whatever the challenges, we will meet
them. Whatever the sacrifices, we will make them. We have the capacity to wait
if we must, but not forever. We are on the move; the opportunities are great;
and the time is now.
Ours is an unquenchable spirit. We go to the work with joy, and we will not
fail. Our future cannot be determined by others; the decision is in our own
hands. Join me, and we will build our own tomorrow!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
VOICE DISTRIBUTORS NEEDED
Since the VOICE is now offered free, our Diabetes Action Network will provide
extra copies to anyone wanting to help spread the word. We will gladly send
from five to five hundred-plus copies each quarter to be used as free literature.
Medical facilities can order as needed for patients. Individuals can usually
place copies of the VOICE in libraries, pharmacies, hospitals, doctors' offices,
or other public locations.
Diabetes education is essential. Anyone who distributes the VOICE will be helping
people with diabetes, and their families, to learn about the disease and its
ramifications; to learn that they have options; and that their world is far
greater than whatever "limits" may be imposed by the disease. If you
would like to help spread the word by distributing the publication, please contact:
Voice of the Diabetic, 1412 I-70 Dr. SW , Suite C Columbia, MO 65203; telephone:
(573) 875-8911, fax: (573) 875-8902. NOTE: Please provide a phone number so
we can reach you.
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SUBSCRIPTION/DONATION FORM
The VOICE OF THE DIABETIC is a quarterly magazine published by the Diabetes
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in diabetes, especially diabetics who are blind or are losing vision. An outreach
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Donations are gladly accepted and appreciated. Contributions are not only tax
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Members of the NFB Diabetes Action Network enjoy priority services
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access to committees covering all aspects of diabetes, free counseling concerning
all facets of blindness and diabetes, as well as access to diabetics who have
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The VOICE is free to any interested person upon request. Each subscription costs
the Diabetes Action Network approximately $20 per year. To help defray publication
expenses, members are invited, and nonmembers are encouraged, to cover the subscription
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To begin receiving the VOICE, please check one:
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are encouraged to pay the institutional rate of $20/one year; $35/two years;
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Send the VOICE in (check one):
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Send this form or a facsimile to:
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1412 I-70 Dr. SW, Suite C
Columbia, MO 65203
Telephone: (573) 875-8911
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Please make all checks payable to:
NATIONAL FEDERATION OF THE BLIND
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END of VOICE OF THE DIABETIC, Volume 17, Number 1, Winter 2002
Edition
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