Voice of the Diabetic: Table of Contents
Voice of the Diabetic: Table of Contents
VOICE OF THE DIABETIC
The Diabetes Action Network of the National
Federation of the Blind
A Support and Information Network
Volume 16, Number 3, Summer Edition 2001
VOICE OF THE DIABETIC, published quarterly,
is the national news 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, Diabetes Action Network, National Federation of the Blind,1412
I-70 Drive SW, Suite C, Columbia, MO 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 2001 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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INSIDE THIS ISSUE
POSITIVE THINKER: ART LOCKHART'S
STORY
ASK THE DOCTOR
by Wesley W. Wilson, MD
INSULIN RESISTANCE EXPLORED
by Peter J. Nebergall, Ph.D.
DEALING WITH OBESITY IN CHILDREN
PANCREAS AND ISLET TRANSPLANTATION
by Vanessa Sutherland
BOOK REVIEWS
by Marilyn Helton
HE OVERCOMES CHALLENGE, BY THOUSANDS OF FEET!
by J.Michael Kennedy
NEWSLINE FOR THE BLIND
WE ARE ROYANNE'S VASCULAR SYSTEM
by Royanne R. Hollins
COOKING WITH SUZI
by Suzi Castle
TALKING MEDICINE IDENTIFIERS
by Ed Bryant
TECHNIQUE KEEPS DIABETIC CHILDREN OUT OF EMERGENCY
ROOM
by Lori Williams
INDEPENDENT DIALYSIS POSSIBLE FOR BLIND PERSONS
by Lois Schmidt, R.N., C.N.N.
RECIPE CORNER
ASK JANIS
NEW DEVICE EASES EYE EXAMINATIONS
FOOD FOR THOUGHT
WHAT YOU ALWAYS WANTED TO KNOW
BUT DIDN'T KNOW WHERE TO ASK
(Resource Column)
POSITIVE THINKER: ART LOCKHART'S STORY
Photo: portrait. Caption: Art Lockhart
Mr. Art Lockhart, author of MY FIRST 22,000 DAYS WITH DIABETES,
is now 69 years old. He's had diabetes since 1940, and he is a survivor. He's
done extremely well, he has a lot to tell us, and what is most impressive, perhaps
even more than his long-term success in managing his diabetes, is the sense
of humor he's brought to it. But then again, maybe that's a good part of his
success? Let's listen:
I was eight years old, it was approximately January 1940. I celebrate it in
January. So I am 61 years with insulin dependent diabetes. I love to read the
stories of people who have done well with their diabetes. I think it's a lot
positive thinking on their part. And you know you have to accept your diabetes
and go on and live a full life. It's just a problem.
I have had some complications over the years, more in my later years. I stepped
on something while swimming with my grandkids. I think it was a piece of metal
from the pool. And I put my foot up and my daughter recognized the fact that
something had caused the swelling and infection. She rushed me to the emergency
room, and they gave me some antibiotic and all, and I stayed on antibiotics
for close to six months.
But it just wouldn't heal. I guess it is typical of older diabetics to have
slower healing, and the reason I didn't feel it was because I had neuropathy
in the feet, I had largely lost feeling. I didn't even know I had stepped on
whatever it was! Well I ended up having to have it amputated. It was my big
toe, so the big toe on my right foot got amputated and I remember all the worries
they told me about what might happen to my feet at the time this went on, and
I said, oh no, I will think positive about it, I will be back to my bowling
in three weeks -- and I did; I didn't bowl very well but I got back there. But
that is about the worst that has happen to me.
About three or four years ago I had part of another toe amputated on that same
foot, and for the same reason -- some kind of infection they couldn't cure it
with antibiotics. It truly doesn't bother me, I tell me grandkids that 8 1/3
toes are plenty to walk on. I exercise and I walk a lot.
I am living now in Asheville, NC. It's a beautiful town by the way, up in the
mountains. I have been here for 41 years now. I occasionally go back to New
Jersey. and to the Philadelphia area, where I grew up. Once a year I go back
to Philadelphia to see old friends and relatives.
When I was diagnosed, in 1940, it was really a relief to find out what was the
matter with me. I hadn't realized it, but I was feeling quite lethargic, I had
begun bed-wetting, I was thirsty all the time, and didn't feel very good. My
parents discovered it because they were doing regular check ups, there were
five of us kids, and my older sister had diabetes. They had been advised to
check the other kids every half year. They checked me, and my urine was filled
with sugar. They diagnosed and I remember my father turning to my mother and
saying, "He's got it too." They took me to the doctor the next day
or so, and confirmed the diagnosis.
My older sister Betty got it in 1932 or '33. Just after I was born, she was
the same way, she was feeling lethargic, had no energy, frequent urination,
all the typical things, we now realize, but the doctors didn't realize it back
then. My parents lived in a small town, where I was born, Mount Holly, New Jersey,
in the southern part of the state, about halfway between Philly and Atlantic
City. They took Betty to the family doctor who treated our various illnesses,
and he couldn't figure out what was the matter with her. So they took her back
two or three times, and he still couldn't figure it. Well, finally she was just
feeling terrible, and they went back, and he says: "I think I've figured
it out, I believe she has," (oh, he sent her in the other room first),
"diabetes, but unfortunately (to my parents only) I don't think she will
live more than three weeks."
My mother passed out on that office floor, and when she recovered, my parents
decided not to take his word for it. They went over to a near by Philadelphia
hospital, where the doctors declared her diabetic, put her on insulin, and instead
of just living three weeks, she lived 39 years more. So my mother loved to tell
the story.
She was my oldest sister. She was 13 when she got it and 52 when she died. It
was all over the family. My second sister was diagnosed as diabetic, I had four
sisters total, and my second sister was diagnosed as a type 1 diabetic at about
age 45. She is still living today, she's 77 or 78, and she lives with her diabetes
successfully.
The oddballs in my family are the non-diabetics. And by the way, two of these
non-diabetics, my middle sister and my own daughter, married diabetics. Can
you believe that? It's so prevalent with us that they married into it when they
didn't get it themselves. My father ended up with diabetes too, but not until
about age 67 or 68. He was a very late type 1.
My father had a sister and a brother with diabetes. So three out of five of
his family were diabetics, and three out of five of us.
My wife Joan died of lung cancer in 1993. She was a the world's most wonderful
woman. I wrote a book about her too. It's called Immortal to Many, But Especially
to Me. Anyway, she was wonderful with my diabetes, she had a instinct for it.
She could hear it in my voice over the phone, she'd say "Art, get a snack,
right away." I'd say "Why? I feel fine." She'd say, "Believe
me, get a snack." She was always right.
I have two children, Vanessa is age 44, she has two girls, my lovely grandchildren.
I have an adopted son living in South Carolina now, and he has two children.
You know, diabetes never stopped me from anything. We had it in the family,
we accepted it, we lived with it, and it never interfered with education or
work, travel or any of it. It was just a extra little problem with all those
things. But I worked in the market research field for many, many years for a
large fiber company, headquartered in Europe. I went to Europe six or seven
times. When I went to Mexico, my wife usually traveled with me, the kids sometimes
as well. Foreign travel was probably the roughest part of it.
The time difference made it a challenge, with my diabetes. There was 6 hours
difference between here and Western Europe, largely where I went to, Holland,
Germany, England as well. We tried everything to adjust, continuing to eat on
American schedules and taking insulin accordingly. But they were all a little
bit difficult, so we learned to snack, instead of eating three times a day.
When I was in Europe, I'd eat six times a day -- very small meals, adjusting
the insulin accordingly. It took us a while, but we figured it out.
Well, I don't want this to be taken out of proportion either, a typical type
1 diabetic, has at least one insulin reaction, one shock, a week. Some of them
can turn serious, but most of them we defuse with a glass of orange juice or
food of some type, and it doesn't become anything serious. But I've had maybe
14 or 15 really serious, and some had a touch of humor to them, and some had
a real close call aspect to them. But still over 60 years with diabetes and
only having, say 15 that really turned serious, that's less than 1 %. That's
not so bad -- you take that many chances walking in traffic. Any of us, who
say we didn't, are not telling the truth. It just is a normal part of it; it's
not a deficiency on our part. It's a normal thing.
I guess the main thing that I feel about diabetes, other than the usual advice:
be careful with your diet, follow a good diet, exercise as much as you can,
test your glucose frequently, particularly with the type 1's, & take your
insulin and all. Now these are normal bits of advice. Having done those things,
think positively about your diabetes. I think about it as a problem, as something
to face, but not something to fear. It's a background thing with me, I know
it's there, and I test and take my insulin, the same way other people brush
their teeth & comb their hair. It becomes second nature to me. I go ahead
and live that life as full as I can. I was a bowler for 20 years, and a pretty
good one at that. I traveled, I worked, I was successful at business, and I
think the secret to it is positive thinking, it really is.
My mother used to quote Oliver Wendell Homes, who said: "If you want to
live a long life, get a treatable chronic disease & take good care of it."
It turned out to be good advice. She actually told me, and I can remember it
distinctly, she said, "Art, if you take care of yourself, you will live
a long life and probably outlive many of your peer group who won't be as careful
as you are." I have followed that advice, and unfortunately I have watched
many of my peers die off before me.
I have had some fun ones with the diabetic shock business. One I still laugh
about. I went into shock early one morning when I was going to my business office,
and I got on the elevator. I was on the third floor, and it had about six or
seven floors. I got on the elevator, as I hear this story afterwards, people
apparently spoke to me and I must have nodded my head or something but I didn't
speak back. A fellow got on the elevator about 25 -- 30 minutes later, and I
was still riding it, still going up and down in the elevator. He got off and
went and found one of my business associates and said: "There is something
a matter with Art, I saw him on the elevator 20 minutes ago and he's still riding
up and down!" So they got me off the elevator and gave me some orange juice
and I got kidded about it, I don't know how many times afterward, that Art couldn't
find his floor, the ups and downs of diabetes and all the rest of it, but it's
a lot of fun.
I had a good support network. My wife was wonderful, my mother, my sisters were
great and my business friends were great and even strangers helped me out on
many occasions. I tell a lot of those stories in my book. My publisher is RBI,
International Carpet Consultants in Dalton, Georgia. We have a web site if people
are interested in that, www.diabeticsurvivor.com . That will actually show them
some pages from the book and my picture & tell them how to order.
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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 am a long term type 1 diabetic with a number of complications. I am having
some odd stiffness in my hands, and am told it is "trigger finger."
What is this, and what can I do about it?
A: I am sorry to hear about your problems with complications
from diabetes. More knowledge is needed, to help persons with diabetes avoid
complications or reverse them if they are present. Careful control of blood
sugars reduces the likelihood of diabetic complications; but such "tight
control" is difficult, and sometimes dangerous; for the tighter the control,
the greater the risk of hypoglycemia (low blood sugars).
Let's talk about those "lows." They're not only frightening and uncomfortable;
a "low" impairs one's judgement, and can lead to accidents and serious
injuries. Most physicians who care for persons who take insulin for their diabetes
can recite at least one serious auto accident in a person who became hypoglycemic
while driving an automobile. It is vitally important to check blood sugars before
driving a car. We diabetics tend to forget to do that; but it is important,
and diabetics do need to safely operate motor vehicles. I remain concerned that
regulatory agencies may wish to remove or restrict driving permits for insulin-using
diabetics.
But, although tight control is difficult, it is possible. After all, 5% of the
tight control participants in the DCCT (the Diabetes Control and Complications
Trial) were able to maintain normal hemoglobin A1cs during the six years of
that study
But back to your "trigger finger" problem. Tendons attach muscles
to movable body parts. For example, a muscle in the arm contracts, pulling on
a tendon attached to the finger, and the finger bends. The tendons move inside
slippery tendon sheaths. If either the tendon or its sheath becomes sticky,
like a rusty cable or a rough pulley, muscle pull on the affected tendon may
result in jerky movement of the finger; or the finger may remain fixed until
the force becomes very high - then it suddenly snaps or bends very quickly,
as if pulling the trigger on a gun. The underlying problem seems to be increased
"stickiness" in the tendon or tendon sheath.
Some people develop "trigger finger" from overuse of certain muscles
or tendons, with inflammatory changes in the tendon or tendon sheath; but persons
with diabetes have an additional problem. Glucose, if attached to the tendon
or tendon sheath, causes stickiness, and this sticky glucose attachment to the
tendons is called glycosylation. The same process of glucose attachment, this
time to the hemoglobin protein in red blood cells, is what is measured in the
A1c or glycosylated hemoglobin test that helps estimate average blood sugar
level. The higher the average blood sugar level, the greater the degree of glycosylation
of proteins, both in the red blood cells, and in places like tendons and tendon
sheaths.
Persons with diabetes may and often do experience sticky tendons in a variety
of spots: "Trigger fingers," "frozen shoulders," or the
medical term "limited joint mobility of diabetes are terms used to describe
manifestations of this problem. These problems may occur even in very carefully
controlled diabetes; but keeping your sugars as near normal as possible is very
important. It's nice to see the glycosylated hemoglobin test is readily available
to see how effective attempts to control blood sugar have been.
You'd like a solution for your problem, and the good news is that often with
blood sugar control, supervised stretching, and careful exercise, the problem
will improve. Be careful not to overuse the affected tendons - attempt to increase
joint mobility only under supervision. Some physical therapists have a good
success rate - and can be found by contacting your diabetes educator or physician.
Anti-inflammatory drugs may help, but these drugs involve particular risks for
persons with diabetes, since they may impair kidney function, especially if
there is already any kidney problem. I'd be very careful about the use of these
agents, either by prescription or over the counter.
Surgery can be helpful, but I feel it is a last resort, since many times the
problem will improve with reduction of overuse, and with careful stretching
and mobility exercise. I would again emphasize the importance of "supervised"
use of the muscles and tendons.
Back to Top
INSULIN RESISTANCE EXPLORED
by Peter J. Nebergall, Ph.D.
Photo: portrait. Caption: Peter J. Nebergall, Ph.D.
Diabetes Mellitus is not one, but two different conditions,
that share the symptom of elevated blood sugars. Type 1 diabetes arises from
insulin deficiency, from the absence of the hormone, and thus type 1 diabetics
need to inject insulin, to preserve life. Type 2 diabetes arises from a body's
inability to correctly and completely use the insulin it is producing, and we
call that initial condition insulin resistance.
What is "insulin resistance?" What do we know about it? How can we
change it? Insulin resistance is a serious condition, closely correlating with
obesity, heart disease, and high blood pressure. We do not know the exact mechanism
of insulin resistance, only that it is a measurable lessening in the body's
ability to metabolize glucose, even though an otherwise adequate supply of insulin
may be present. We don't know what the root cause is, but we suspect it is genetic
(which would explain why type 2 diabetes so much seems to run in families).
Although there is close correlation between obesity and insulin resistance,
it is not simple "cause and effect." Being overweight does not cause
insulin resistance -- even though losing weight does indeed reduce insulin resistance.
There are many overweight people who are not insulin-resistant, and these folks
may never develop type 2 diabetes.
It appears that if a person carries the genetic trait for insulin resistance,
but follows a healthy lifestyle (good diet, not too much of it, plenty of regular
exercise), they may show little or no overt insulin resistance. If that same
person slips into overeating and under-moving, one may expect the insulin resistance
to become overt (obvious and apparent), and perhaps type 2 diabetes to appear.
Taking it further, if such a person, overweight, under-active, takes control
of their lifestyle, loses the weight, and commences a regular exercise program,
the insulin resistance should drop, perhaps even into insignificance. This "diet
and exercise" approach is the core of all good blood glucose self-management
programs. There is no better argument for living a healthy lifestyle.
Insulin resistance as a syndrome cross-correlates with a number of potentially
damaging conditions, most cardiovascular in nature. Although we cannot say which
conditions cause insulin resistance, which are caused by it, and which are merely
covalent, we know that aggressively reducing it, by lifestyle change and/or
by medication, can both improve general health and lessen the severity and likelihood
of diabetes complications.
Talk to your doctor. If you have it, your health care team can help you keep
it under control. If you have progressed to full blown type 2 diabetes, your
doctor can help you treat it, both with lifestyle change and medications, like
Metformin, Actos, and Avandia, that reduce insulin resistance. There is much
that can be done.
Back to Top
DEALING WITH OBESITY IN CHILDREN
About 16 million Americans have diabetes, and approximately
90% of them have type 2, non insulin dependent diabetes (NIDDM). People with
type 2 diabetes have insulin resistance, the inability to fully utilize their
body's insulin to properly process blood glucose. Obesity and insulin resistance
are closely linked -- the more excess weight, the greater the insulin resistance,
and the harder it is to keep your blood sugars in the normal range. If you have
type 2 diabetes, weight reduction is an urgent concern.
Current statistics tell us a majority of Americans (~55%, per the National Institutes
of Health) are overweight or outright obese, and that more than 1/3 of America's
children are overweight, some seriously. Many studies report a great increase
in NIDDM among younger people, and link this to the observed 50% increase in
childhood obesity in the last two decades.
Why are so many more children overweight? It is the usual diabetes answer: Diet
and Exercise. One generation played outdoor games, another shuttles between
television and the computer. One was never without a football, baseball, tennis
racket, maybe a hockey stick... And the other, to echo a recent Canadian report,
"has never been without a remote control in its hand." People don't
move as much as they used to. One report states the average American child spends
24 hours a week watching television; "Time that could be spent in physical
activity," according to the National Institute of Diabetes, Digestive and
Kidney Diseases.
And there's Diet. As more Americans make "convenience foods" (what
we used to correctly call "junk food") a significant part of their
diet, we gain weight accordingly. We eat "til we're full," and is
it any wonder our children do the same?
What to do? First, be a role model. If your children see you active and having
fun, they'll want to emulate you. You can't be a couch potato, and expect, or
honestly ask, your children to be physically active. Do your family activities
include exercise, or do they mostly consist of evenings channel-surfing? Remember,
you can probably use the exercise too.
Second, cut way down on the junk food, and work on healthy portion sizes. Your
doctor can help you find a dietitian, who'll work with you on healthy diet and
sensible amounts. More is not necessarily better, and your children are watching
how you eat. Again, you'll help yourself too.
Third, never forget the power of praise. When your children find a positive
example, a parent, an athlete, or perhaps a favorite actor, agree, and then
make that the time to talk about "how they look so good." Children
need to learn that fitness is not granted, it is achieved -- and that they can
achieve it, if they put in the work.
Back to Top
PANCREAS AND ISLET TRANSPLANTATION
by Vanesa Sutherland
Preface
The Diabetes Institute for Immunology and Transplantation (DIIT) at the University
of Minnesota is devoted to the research and development of better treatments
for diabetes and its eventual "cure." In doing so, the DIIT is constantly
promoting education on pancreas and islet transplants as the only and most physiological
treatment to make individuals with type I diabetes insulin-independent.
With more than 11,000 pancreas transplants performed worldwide since 1966, and
the recognition by the American Diabetes Association (ADA), American Medical
Association (AMA), and numerous insurance companies, pancreas transplantation
has gained acceptance among physicians and the general public. In 1966, the
University of Minnesota established the feasibility of the procedure, training
surgeons and transplant physicians who have founded pancreas transplant programs
nationwide as well as internationally. There are currently 96 pancreas transplant
programs in United States. Even without Medicare coverage, more than 1000 transplants
are being done annually.
More than 1000 pancreas transplants have been done at the University of Minnesota,
nearly 10% of the world's total. The University of Minnesota's program is also
a pioneer in living related donor segmental pancreas transplants, and the only
program that applies this cutting edge procedure routinely before complications
have appeared. More than 100 pancreas transplants were done at the University
of Minnesota in 1998.
The pancreas, a small, elongated organ shaped like a little trout, is located
in the left side of the body, underneath the stomach and extending transversely
through the abdomen. It contains round clusters of cells called Islets of Langerhans
(2% of the pancreas) that are interspersed in the glandular tissue. The latter
tissue accounts for pancreas exocrine function, and helps the digestion process
by releasing enzymes into the intestine. The endocrine function is performed
by specialized cells in the Islets. Those that are responsible for the production
and release of the hormone insulin into the blood are called beta cells. Insulin
allows every cell in the body to use the different sources of energy, such as
fat and glucose, to perform their function. The loss of, or the inability of,
beta cells to adequately produce the insulin needed by the body is called diabetes.
A tremendous advance in treating diabetes was accomplished by Dr. Frederick
Allen in 1917. He pointed out that diabetes was not just a problem with carbohydrate
metabolism, but with protein and fat as well. The total calorie intake had to
be reduced to the minimum that would allow subsistence while minimizing the
acidosis that occurs from metabolism of the three offenders in the absence of
insulin. The dilemma was that patients either died soon after diabetes onset
or tolerated diabetes for a few years until they died of starvation. Dr. Allen's
approach was severely criticized, but, as he noted, dying of diabetes is much
more painful than dying of starvation, and "after all, do we have an alternative
to prolong a diabetic life?" With this treatment Dr. Allen was able to
prolong his patients' lives for a few more years.
Insulin was discovered in Toronto in 1922 by Dr. Frederick Banting. At that
time, insulin was seen as a cure for diabetes; indeed, several patients who
were alive, thanks to Dr. Allen's treatment, were able to use insulin and live
longer than previously expected. With insulin's extensive employment as a treatment,
diabetes was no longer a mortal disease.
Within that same year, the idea was conceived that maintaining normal glucose
levels in the diabetic individual would lead to a quality of life equal to that
of a non-diabetic. Therefore, a standard treatment based on several daily insulin
shots, dietary restrictions, and exercise became the norm. However, despite
insulin treatment, diabetic complications appeared over time. Diabetics treated
with insulin no longer died from diabetic ketoacidosis, but eventually suffered
devastating organ deterioration and, thus, a poor quality of life. Because of
the idea or possibility of insulin-related organ damage, there was a liberalization
in treatment during the 1960s.
In the 1980s several small studies on intensive insulin treatment and complications
were conducted in Europe, with mixed results. In 1983 the United States, the
Diabetes Control and Complications Trial (DCCT) was begun. This was the longest
and first scientifically controlled study on diabetic complications, and confirmed
the earlier notion that tight control is more effective than a liberal regime
in allaying complications. Complications were not eliminated, however, and quality
of life and patient survival for the diabetic individual remain well below that
of the general population. New paraphernalia (disposable syringes, Humulin insulin,
home blood glucose monitors, etc.) and procedures to treat diabetic complications
(like retina photocoagulation), along with a vast and controlled health support
system, have improved the effectiveness of intensive therapy. Tight control,
achieved by three to four shots of insulin daily, adjusted according to four
or five daily glucose determinations, frequent visits to physicians, exercise,
and diet restrictions, can now at least reduce the risk of kidney failure and
blindness. Even with strict control, however, complications are not avoided
entirely.
The downsides of intensive treatment are frequent hypoglycemic episodes (very
low blood sugar), weight gain, and the tremendous investment of time and energy.
The DCCT has shown, on one hand, that a tight control is instrumental to retard
or even avoid some of the most devastating diabetic complications. On the other
hand, some individuals develop some complications despite intensive therapy.
The amount of continuous social resources and effort employed to partially substitute
the failed natural mechanism of insulin regulation is enormous.
There are one million insulin-dependent diabetics (type 1) in America, with
30,000 new cases diagnosed each year. Diabetes is currently the leading cause
of kidney failure and blindness in adults, the leading disease-related cause
of amputation and impotence, and ranks among the most common chronic diseases
in children. One third of all type 1 diabetic individuals have one or more serious
complications.
Pancreas and Islet Transplantation
Historically, pancreas transplants were first done only in conjunction with
a kidney transplant, based on the notion that diabetic individuals would better
stand the rigors of immunosuppression needed to keep the kidney graft if their
diabetes was also corrected. At a time (1960s and 70s) when most physicians
opposed kidney transplants for diabetic patients, a group of doctors from the
University of Minnesota fought the battle. Today many centers perform double
organ transplants to treat diabetic individuals with kidney disease, either
a simultaneous pancreas and kidney (SPK) transplant or sequential transplants,
usually the pancreas after the kidney (PAK). A few centers, including the University
of Minnesota, do pancreas transplants alone (PTA) before kidney disease occurs.
The first human islet transplant was done in 1974, eight years after the first
pancreas transplant at the University of Minnesota. Islet transplantation has
been under continuous development since that time, while pancreas transplants
have become routine.
How Pancreas Transplants are Done
The recipient's own organs are left in place and the new organs are placed in
the lower abdomen or pelvis. Preferably the pancreas goes to blood vessels on
the right side and the kidney, when included, to the left. A whole pancreas
is procured from a cadaver donor, or half pancreas from a living donor. In the
case of a cadaver donor, the duodenum (the part of the small intestine joined
to the stomach) is also transplanted, as the head of the pancreas is intimately
attached to it. In the case of a living donor, the tail of the pancreas is surgically
separated from the head during the procurement operation in the living donor,
and the head remains in the donor, while the tail is transplanted to the recipient.
Bladder-Drained Cadaver Donor Pancreas Transplant
The surgeons first prepare the donated pancreas graft for implantation
into the recipient. Both ends of the cadaver donor duodenum are closed and a
new opening is made. The graft is then attached in three places to the recipient:
1. The portal vein coming from the graft is sewn to the recipient's iliac vein.
(The iliac vein is the main vein that takes blood from the lower half of the
body back to the heart.)
2. The pancreatic arteries of the donor pancreas are sewn to a graft of the
donor's iliac artery, which is then sewn to the recipient's iliac artery. (The
iliac artery is that artery which supplies the lower half of the body with blood
from the heart.)
3. For pancreas-alone transplants, the duodenum's new opening is usually sewn
into the recipient's bladder, as shown above. The bladder then receives the
exocrine pancreas secretions (enzymes). Alternatively, the graft duodenum can
be sewn to the recipient's intestine, as shown below (enteric drained). This
is now usually done when the patient also receives a same donor kidney. There
are different advantages and drawbacks to each technique. In the case of a living
donor segmental transplant, there is no duodenum and the duct of the pancreas
is sewn directly to the bladder or bowel, depending on the technique chosen.
The first two attachments establish blood flow to the pancreas, allowing insulin
release. The third one allows the exocrine enzymes (and lipase) to be drained.
When drained into the bladder, the urine is tested regularly for amylase levels.
Low amylase excretion is a good marker of a pancreas graft rejection episode
needing treatment, particularly for pancreas alone grafts. Serum amylase and
lipase may also increase during rejection, but are less specific markers than
urine amylase.
In the presence of a same-donor kidney graft an increase in blood creatinine
is a good parameter of rejection that is probably affecting both organs. Thus
bladder drainage is less important for SPK transplants and enteric drainage
can be used from the beginning.
Enteric Drained Cadaver Donor Pancreas Transplant
Drainage into the bladder can lead to some urinary tract problems
in about 10% of recipients due to irritation from sutures or pancreatic enzymes.
The recipient may then need to undergo additional surgery in which pancreas
graft drainage is switched to the intestine.
The surgical complication rate leading to graft loss after the transplant has
been 9%. No fatalities during the actual surgery have occurred.
Living Donor Segmental Pancreas Transplant
How Islet Transplants are Done
Historically, the early complications with the exocrine portion
of the graft (98% of the pancreas is exocrine tissue), led to the idea of isolating
and transplanting the islets in an easier and non-surgical way. It continues
to be deemed a promising approach.
The pancreas is procured from a cadaver donor (due to a current islet success
rate of only 10% at one year, it is preferable to use cadaver donors). After
the Islets of Langerhans, which contain the insulin-producing Beta-cells, are
separated from the exocrine tissue (islet isolation) by a machine, they may
be cultured for two to three days before transplantation. Under X-ray guidance,
islets are injected into the recipient's portal vein. Once in the portal vein,
the blood flow and pressure carries the islets to the liver where they encounter
small-diameter capillaries which cannot be traversed through by the islets.
Thus, the islets are physically lodged in place, and new capillaries grow to
incorporate them in an anatomical form.
Islet Allograft Procedure
An islet transplant alone from another person (allograft) is
still being perfected. Islets present a special and not-fully-understood susceptibility
to rejection and to immunosuppressant side effects that may prevent the cells
from functioning or surviving. Furthermore, there is not yet a marker to indicate
rejection episodes and, thus, the opportunity to reverse the immunological attack
is missed.
Currently, islet-kidney transplantation is performed for individuals that need
a kidney but cannot have extensive surgery. Although the insulin independence
percentage is lower than for pancreas transplants, one-third of the recipients
have improved glucose control.
Islet transplantation alone, though, for people whose pancreas is removed to
alleviate pain from pancreatitis, can be done with a 75% success. In these cases
the recipient's own pancreas is the source of the islets (islet autograft, 1-aut)
with no need for immunosuppression. This fact, and the development of new drugs
(now under investigation), encourages patients, physicians, insurance companies
and pharmaceuticals to keep trying.
What Can Pancreas or Islet Transplant Achieve?
A successful pancreas transplant recipient does not need to inject insulin or
continuously monitor glucose. The new pancreas automatically adjusts the amount
of insulin needed. Hyperglycemia or hypoglycemia (diabetic syndrome) is eliminated.
It is important to take into account the graft survival rates according to the
kinds of organs transplanted and the sequence in which they are transplanted.
For example:
1. A person who suffers from diabetes and has developed kidney failure may prefer
to become insulin-independent and dialysis-free in one surgery by undergoing
simultaneous pancreas and kidney (SPK) from a cadaver or living donor if health
allows extensive surgery. If extensive surgery is contraindicated, simultaneous
islet and kidney (SIK) transplant from a cadaver donor is a good option.
2. A diabetic individual with a previous kidney graft, or an individual with
the opportunity to receive a kidney from a living donor, can proceed first with
the kidney and then wait for a cadaver pancreas or islet [pancreas-after-kidney
(PAK) or islet after kidney (IAK)]
3. Diabetic individuals who do not need a kidney but want to prevent complications
from diabetes or individuals who suffer frequent hypoglycemia episodes or serious
problems controlling diabetes may decide to have a pancreas transplant alone
(PTA). In the case of SPK or SIK from the same donor and PAK or IAK from different
donors, the decision implies that kidney transplant (and immunosuppressive drugs)
is preferable to dialysis and the further surgery to add the pancreas is preferable
to remaining diabetic. In the case of PTA, an individual must make an assessment,
based on medical findings, of the future risk of diabetes and the burden of
tight control versus the future risks of taking drugs. Below is a table with
the recent insulin independent percentages a year after transplant according
to categories :
Category
%
Insulin-free @ 1 year
Longest
insulin independence
Year
of first transplant
SPK
86%
18 years
1966
PAK
83%
17 years
1978
PTA
75%
16 years
1970
IK
10%
4 years
1974
I-Aut.
75%
12 years
1977
In the past, half of the SPK transplant functioned for more
than 14 years, while for PAK and PTA grafts half functioned for more than five
to six years. With the new anti-rejection protocols we expect the proportion
of grafts functioning long-term to increase. The effect of a pancreas transplant
on diabetic secondary complications, when performed after the complications
have already appeared or have been present for some time, varies. Early and
mild neuropathy is completely reversed, while advanced neuropathy is improved
in about half the cases and stabilized in the rest; early nephropathic (kidney)
lesions are reversed after five to ten years, even in the presence of nephrotoxic
immunosuppressants. Retinopathy stabilizes after three years post-transplant.
Cardiac and gastric function appear to improve. Cholesterol and triglyceride
levels improve.
Pancreas Transplant
When done before complications occur
or when they are not severe.
* Abnormal glucose level
* Neuropathy
* Retinopathy
* Nephropathy
* Cardiovascular disease
* Diet restrictions and daily monitoring
Immune System and Immunosuppression
The immune system is in charge of protecting the integrity of our bodies. In
doing so, it has developed several mechanisms to eliminate everything that is
not recognized as part of the original genetic message encoded in our DNA. Anything
not recognized as "self" is meant to be allowed no more than a temporary
stay in our bodies. There are different ways and levels to protect us.
Externally, skin acidity, hair, and body fluids prevent some
pathogens from entering the body. Internally, the immune system acts at cellular
and molecular levels in a hierarchical and specialized fashion. First, the foreign
substance (antigen) is recognized as non-self (after being degraded into peptides
by macrophages). Second, an attack is organized to eliminate the offender. A
set of inherited proteins called the Major Histocompatibility Complex (MHC)
or Human Leukocyte Antigens (HLA) are expressed on the surface of all cells
and contain genetically specific information about our tissue. Our macrophages,
when presented with foreign material, use the MHC to help signal other cells
called lymphocytes, (a type of white blood cell, T-lymphocytes and B-lymphocytes)
to initiate the attack specifically against what is foreign. If what is foreign
is an allograft with a different set of MHC proteins (transplant antigens),
the donor macrophages can directly signal the recipient's T- and B-lymphocytes
to begin an attack without going through the recipient's macrophages.
The immune system has two main characteristics: 1. Memory. A second exposure
to the antigen reactivates the T- and B-lymphocytes with the rapid production
of pre-formed antibodies to efficiently combat the invader; and 2. Specificity.
The immune system directs an action toward a particular antigen. In some cases,
the immune system does not work properly and attacks one's own cells in a specific
organ because the genetic information is not recognized as self (autoimmunity).
For example, type 1 diabetes is the result of an attack of the immune system
against its own pancreatic insulin-producing Beta-cells. Other examples of autoimmunity
are psoriasis and rheumatic fever.
To protect non-self organs (the transplanted grafts) from an immunological attack
(rejection), the daily oral use of drugs that impair the body's immune system
action is required. Presently, drug specificity (action directed just to block
the attack to the organ transplanted) is not high, so the organ recipient is
generally more susceptible to infections. Fortunately, people have been exposed
to several pathogens before using immunosuppression, and once exposed to the
same pathogens after the transplant, the immunological memory will require less
energy for the immune system to act.
The percentage of grafts lost to infections for all recipient categories (SPK,
PAK, PTA) is 4%. After the transplant, recipients usually take three different
immunosuppressants, as well as antiviral and antifungal drugs, two or three
times a day, and undergo weekly lab tests during the first three months post-
transplant. After that, immunosuppressant doses are tapered down and, if there
are no rejection episodes, Prednisone (one of the three immunosuppressants),
is stopped. The antifungal and antiviral drugs are also stopped after about
three months. Medication is reduced to twice a day and frequency of laboratory
tests are eventually reduced to once a month. The probability of rejection episodes
is highest during the first six months, but in most cases can be reversed with
temporary increase in dosage, and intravenous administration of anti-rejection
drugs.
The figure below shows the side effects of different drugs (circles), the side
effects shared by two or more drugs (superimposed areas), and the general side
effects of immunosuppression (rectangle encompassing circles). There are some
important things to note:
1. Not everyone suffers the same side effects, and over time, doses can be adjusted
or medications can be changed.
2. For reasons that are not clear, pancreas recipients experience fewer malignancies
(like skin cancer and lymphoma) than other organ recipients. New protocols and
tests allow stopping of Prednisone, thus avoiding its side effects.
Who is a Candidate?
1. Type 1 diabetics who need a kidney or other organ transplant
and will be on immunosuppressants, or people who are already taking immunosuppressants
for other reasons (autoimmune disease) should have a pancreas or islet transplant.
2. People with difficulty controlling diabetes, who experience
frequent hypoglycemia or hyperglycemia or those with a predisposition to certain
serious complications are also candidates. Also, those who want to prevent diabetic
complications and assume the risks of immunosuppression rather than manage diabetes
can be considered.
3. In people with heart disease, a complete evaluation is necessary
before the transplant. Some cardiac anomalies can be fixed; if not, pancreas
transplant surgery may not be recommended.
4. Blindness is not a contraindication for the transplant since
quality of life will be improved by not having to manage diabetes after a successful
transplant.
5. Most PTA recipients have been between 18 and 58 years old,
but a small number of pancreas transplants have also been done in pediatric
patients whose lives were threatened or disrupted by diabetes.
The Average Cost and Length of Hospital Stay
Most insurance companies cover the procedure and the drugs, particularly for
those who also need or have had a kidney transplant. In the case the insurance
company initially refuses coverage, the patient is encouraged to establish a
dialogue with her/his insurance company. The transplant center physicians can
provide supporting data for the insurance company. Medicare will cover SPK at
selected centers soon, and drugs are covered for the first three years.
Category
Average
Charge
Average
Hospital stay
SPIK
$120,000
14 days
PTA
$80,000
9 days
lK
$80,000
9 days
I after K
$20,000
2 days
I-Auto
$60,000
10 days
Making Contact
If you have seriously decided to explore pancreas or islet transplant as a better
treatment for diabetes, you should make an appointment with a transplant surgeon
to be evaluated.
First, you will be oriented in detail about the process by a transplant nurse
in the transplant center. After that, a transplant physician will discuss with
you which modality is most appropriate for you (SPK, PTA, PAK, IK, IAK) and
the possibility of a living donor kidney and/or pancreas vs. being placed on
a waiting list for a cadaver donor organ. Several tests must be performed as
a part of a complete work-up to better assess your general health status as
well as to determine your tissue or HLA type for matching. In the case of a
potential living donor, the donor will also be carefully instructed of the risks
and will undergo several tests to determine whether or not the candidate will
retain enough organ function to sustain his or her own health as well as how
suitable the organs considered are for the recipient..
Cadaver and/or Living Donor
The University of Minnesota started offering segmental pancreas transplants
(half a pancreas) from living related donors in 1979 when the rejection rate
for organs from cadaver donors was significantly higher. Since then, the results
achieved with cadaver-donor pancreas grafts have dramatically improved and the
success rates are close to that of living-donor pancreas transplant. More than
100 segmental pancreas transplants have now been done from living donors but
the emphasis has been changed to those in need of both a kidney and pancreas
in order to avoid dialysis or for those hard to match. Of 25 kidney and pancreas
living-donor transplants done during 1994-98, all the recipients are alive,
24 have functioning kidneys (96%) and 21 (84%) have a functioning pancreas.
All of the living donors are alive, but some have been treated for complications,
such as fluid collection (3) or abscesses (1). In overweight donors, some have
developed abnormal glucose tolerance, so thin donors are preferred.
A recipient ideally is matched for two things with either a living or cadaver
donor:
1. The donor and recipient should be ABO compatible. This means
that the recipient and donor have either the same blood type or a compatible
blood type. For instance, an 0 individual can always be a donor to the other
blood types while he or she can usually only receive type 0 blood or organs.
2. They share one or more of the six HLA antigens that are taken
into account (two each in regions A, B, and DR). Matching reduces the incidence
of rejection episodes as well as the probability of graft failure from rejection,
and in the long term is associated with lower doses of immunosuppressive drugs.
The table below shows the incidence of graft failure from rejection according
to number of HLA mismatches (out of six) between a cadaver donor and recipient.
As is evident, matching is more important for a pancreas done alone than for
one done with a kidney. The results with living donors are better regardless
of match.
SPIK Mismatch
Graft Loss
PTA Mismatch
Graft Loss
0
none
0
none
1
2%
1
10%
2-5
4%
2-5
20%
6
10%
6
40%
How Does The Waiting List Work?
Your transplant center will enroll you in a nationwide central database which
has access to the information on all the prospective recipients. The list is
dynamic and the time you wait for a cadaver donor transplant depends on:
1. How long you have been on the list.
2. Your blood type: people with blood type 0 will wait the longest
due to the fact that more than half of the population is blood type 0. A person
with type 0 can only receive blood type 0, though they can be donors to other
blood type.
3. Your HLA type: certain antigens are more common than others,
so you will obtain a good match sooner if you have several common antigens.
4. Your level of antibodies formed to potential donors. Previous
blood transfusions, transplants, or pregnancies can cause formation of antibodies
to other individuals, increasing the probability you will be immunologically
reactive to possible donors.
The tissue and blood type of every cadaver donor are matched with the prospective
recipient list and the offer is made based on a combination of matching and
waiting time. The donor organs are first offered locally, then regionally, and
last, nationally. The people listed are ranked according to best match and longest
time in the list. A perfect match has the highest priority and if there is more
than one goes to the person waiting the longest. If there are no perfect matches,
waiting time is given priority and the organ is offered to the ones waiting
the longest with the best match. When a high antibody person has a negative
crossmatch (nonreactive), she/he is given priority because of the low chance
to get a suitable match in the future. The organ is offered for the patient
through the transplant center where the prospective recipient is enrolled, and
if the surgeon considers it a good offer the recipient is called. Once accepted,
a final crossmatch is done to confirm that the recipient is not reactive to
the donor.
The average waiting time for a SPK or SIK is 18 months for blood type 0 individuals,
and 12 months for the rest; for PTA and PAK or islets after kidney it is eight
months. Individual waiting time can be longer or shorter depending on the factors
mentioned above. Recipients with living donors avoid waiting time.
Perhaps the most important and comprehensive indicator of the
effectiveness of pancreas and islet transplant is how the recipients feel about
it. There can be side effects from the immunosuppressants, and some patients
have infections post-transplant, such as CIVIV, bladder irritation, or dehydration
due to the pancreas' exocrine enzymes being excreted through the bladder. However,
nearly all recipients express satisfaction with the transplant due to more flexibility
in their daily life and experience a better emotional and psychological attitude.
Sexual and overall satisfaction is well above that of kidney-alone recipients,
and close to general population. Pregnancy may be undertaken with success but
should be carefully monitored by the recipient and the physician. Results from
a multi-center study reveal that the recipients gave birth to babies with the
same rate of complications as the general female population, although some complications,
like rejection episodes or loss of a graft were registered.
Names of donors and recipients will be provided upon request if you have questions
about the experience.
Summary and Conclusions
1. Pancreas and islet transplantation has developed through
the combined endeavors of physicians, health scientists, pharmacists, governmental
institutions, private insurance companies, patients and their families, thus
transforming the individual and social reality of diabetes. Technology, institutional
development and societal maturation reach an historical peak in making possible
a better treatment for diabetes.
2. Presently, pancreas transplantation has a success rate of
over 80% in patients who also get a kidney transplant (SPK and PAK), and over
70% in those who only need a pancreas (PTA). It dramatically increases day-to-day
quality of life, can prevent diabetic secondary complications, and may reverse
some. The DCCT showed that tight glucose control makes a difference in respect
to diabetic complications. Tight control is very hard to achieve short of a
pancreas transplant, and transplantation has emerged as a safe, flexible and
very effective treatment.
3. Immunosuppressive drugs are used: a) To force the recipient's
system to accept the transplant (minimize the body's ability to reject); b)
To prevent recurrence of diabetes (as diabetes is an autoimmune disease); In
addition, c) Immunosuppressants have to be taken daily to prevent rejection.
There are side effects associated with them, and it is their proper management
over time that makes the difference in the delicate balance between side effects
and rejection. d) New, more specific drugs are on the market or in investigational
stage. e) Tactics of safe immunosuppression are: 1. Stop prednisone six months
post-transplant, 2. Reduction of all drug doses over time, and switch drugs
according to side effects, and 3. Use best HLA match combinations.
4. Although less successful than pancreas transplantation (but
with a lower complication rate), islets are recommended for people who cannot
have or want to avoid extensive surgery. Islet function may be inhibited by
some immunosuppressants, and islet transplantation could profit by introduction
of new drugs. The facts that islet autotransplantation has a 75% success rate
in preventing diabetes after pancreatectomy for pancreatitis in non-diabetic
recipients, and that there are a few diabetic individuals insulin independent
for more than four years after islet allografts, encourage scientists and patients
to continue trying.
5. Eventually, encapsulated islets (human or animal) or a vaccine
or genetic engineering may cure diabetes without the need for immunosuppressants.
Perhaps something else that we are not able to imagine today will do it. According
to experts, a more safe and effective treatment than transplantation is not
around the corner. Supporting the investigational alternative treatments to
diabetes is the gift of today's man to the man of the future in the same way
that we have received our gifts from the past. But certainly with a limited
extent of life, the today's present for today's man is having transplantation
as an option.
Future
There are not enough human organs to offer pancreas or islet transplantation
to all diabetics. One way to overcome the organ shortage is xenotransplantation
(transplanting islets from one species to another), and the Diabetes Institute
is actively involved in research on this topic. The Diabetes Institute receives
generous donations to support these and other studies from people who firmly
believe that life is more than mere survival...
About The Author
Vanesa Sutherland holds a BA in Economics; a diploma in Finance; and a MS in
Artificial Intelligence. She became diabetic at age four, and experienced several
secondary complications from diabetes. In 1995, she received a kidney and half
a pancreas from her mother. Vanesa volunteers part of her time to the Diabetes
Institute for Immunology and Transplantation.
Contact the Institute (located at Fairview-University Medical Center) at: Box
193, 420 Delaware Street SE, Minneapolis, MN 55455; telephone: (612) 626-2101;
website: http://www.DiabetesInstitute.org For more information about transplantation,
contact Fairview-University Medical Center, Transplant Unit; telephone: 1-800-328-5465.
Back to Top
BOOK REVIEWS
by Marilyn Helton
According to the National (USA) Diabetes Fact Sheet, released
November 1998, the prevalence of diabetes by race/ethnicity in people 20 years
or older was as follows: Non-Hispanic persons of African-American ethnicity
have the highest percentage of diabetics in their population (10.8%). This is
followed by Mexican-Americans (10.6%), American Indians and Alaskan Natives
(9.0%), and non-Hispanic Whites (7.8%). Diet, with regard to cultural diversity,
is a significant factor in diabetes, just as it is in cancer incidence.
THE NEW SOUL FOOD COOKBOOK FOR PEOPLE WITH DIABETES, by Fabiola Demps Gaines,
RD, LD, and Roniece Weaver, MS, RD, LD, is the first African American cookbook
for people with diabetes.
According to the authors, when the first slaves arrived in Virginia around 1619,
common African-American foods included rice, beans, cornmeal, black-eyed peas,
sweet potatoes, greens and onions. Foods were usually flavored with meat scraps
(usually "fatback" from hogs), chiles from the Caribbean and molasses.
Although diets were predominantly vegetarian, with some fish, possum or squirrel
for flavor, foods were boiled, fried, roasted or baked. Stews and thick gumbos,
liberal use of molasses, and fat-laden gravies provided calories. African-Americans
used salt and sweeteners in abundance, but, due to long hours spent in hard
manual labor, suffered few ill effects from the excess.
Authors Gaines and Weaver show the reader how much of the hypertension, heart
disease, and diabetes plaguing the African-American population can be avoided
by making easy changes to traditional soul food recipes without losing too much
of the flavor. The basics of healthy food preparation and menu planning are
incorporated with suggestions for cooking with traditional herbs and spices,
along with advice for reducing fat, calories and sodium. Portion sizes are given
to aid in blood sugar control and weight loss, as well as complete nutritional
information and official ADA exchanges.
Now you can experience palate-pleasing soul food recipes such as Barbecue Pulled
Pork, Hoppin' John, Hoe Cake, Soul Slaw, Collards with Smoked Turkey, Chicken
and Dumplings, Key Lime Pie, Rice Pudding, Sweet Potato Pound Cake and more
in The New Soul Food Cookbook. Published by the American Diabetes Association,
©1999, $14.95.
I had a great time spending my Christmas cash gifts last year,
and one of my favorite treasures was DIABETIC DESSERTS, by Betty Wedman, PhD,
RD. (Ms. Wedman, past president of the American Association of Diabetes Educators,
also authored the best-selling Quick & Easy Diabetic Menus).
In Diabetic Desserts, Betty Wedman offers people with diabetes more than 80
delicious and easy-to-follow recipes for desserts that are good-tasting and
health-conscious. I found myself in a full-faced grin as I read her dedication,
"To all those individuals with diabetes who thought I was unscientific
when I told them to use sugar instead of sugar substitutes in their recipes."
She bases her statement position on the most recent ADA guideline which states
that ". . . scientific evidence has shown that the use of sucrose as part
of the meal plan does not impair blood glucose control in individuals with type
1 and type 2 diabetes."
You can enjoy a wide variety of rich-tasting, delicious recipes for cookies,
cakes, muffins and quick breads, pies, tarts and tortes, puddings and custards,
crumbles and cream puffs, snacks, sauces and sorbets, as well as holiday favorites
and dessert beverages in this neat little cookbook. Wouldn't you just love a
taste of Cappuccino Pudding Cake, or a bite of a Macadamia White Chocolate Cookie?
How about Cookies and Cream Cheesecake, Chocolate Swirl Brioche, Mud Pie or
some Lemony Bread Pudding?
Each recipe in Diabetic Desserts includes complete dietary information, and
is based on the new American Diabetes Association recommendations and revised
exchange lists. The recipes are low in sugar, fat, sodium and cholesterol—making
these treats healthy as well as a sweet addition to your meals. If you have
a sweet tooth as finely tuned as mine, don't miss this wonderful dessert book.
I highly recommend it!
Diabetic Desserts, by Betty Wedman, PhD, RD., ©1996, published by Contemporary
Books, $12.95.
Please join me again as we explore our choices for some good
summer reading. Until then, stay healthy and enjoy every moment. Each one is
a gift!
Marilyn Helton, 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, www.fabulousfoods.com,
www.practicalkitchen.com, or Cinnamon Hearts website: http://members.xoom.con/cinnhearts/
Back to Top
HE OVERCOMES CHALLENGE, BY THOUSANDS OF FEET!
by J. Michael Kennedy
Photo: climbing a mountain. Caption: Erik Weihenmayer.
(This article appeared in the March 2001 edition of the BRAILLE
MONITOR, published by the National Federation of the Blind. Reprinted with permission.)
From the MONITOR Editor: On Friday, January 5, 2001, the following story appeared
in the Los Angeles TIMES. It sets the stage for the NFB 2001 Everest Expedition,
which is scheduled to begin with the team's departure from the U.S. for Khatmandu
on March 23. Here it is:
At the moment a 32 year-old adventurer named Erik Weihenmayer is in Antarctica,
climbing the 16,066 foot Vinson Massif, the tallest mountain of the frozen continent.
If he succeeds, it will be another step toward his goal of climbing the tallest
peak on each of the world's seven continents. He's already climbed those of
Africa and North and South America. And in the spring, Weihenmayer will join
a team of nine other experienced climbers to tackle the world's tallest peak,
Mt. Everest.
What sets the Golden, Colorado, resident apart is that he's blind. Not just
legally blind, but lights-out blind. Even so, he has developed himself into
a world-class climber, by dint of superb conditioning.
"Believe me, it's not tokenism," said Everest climb leader Pasquale
Scaturro of Lakewood, Colorado. "No one treats Erik like he's a blind climber.
He gets really ticked off if we do."
Scaturro, veteran of two previous Everest expeditions, should know. He spent
weeks last year with Weihenmayer as they attempted to climb Nepal's 22,486-foot
Ama Dablam, only to be turned back by brutal weather 2,000 feet from the summit.
Scaturro speaks with awe as he describes Weihenmayer's athletic abilities, honed
by years of punishing workouts that allowed him to push the limits of sightlessness.
Besides mountaineering, the former schoolteacher turned motivational speaker
is also a skydiver and skier, long-distance biker and marathoner, wrestler and
scuba diver, ice and rock climber.
Weihenmayer has received numerous awards, including induction into the National
Wrestling Hall of Fame. Last summer, he delivered the pledge of allegiance at
the Republican National Convention in Philadelphia. And next month, just weeks
before the Everest attempt, Penguin Putnam/Dutton will publish his autobiography,
titled Touch the Top of the World.
Born with a rare and incurable eye condition called juvenile retinaschesis,
Weihenmayer's sight began to diminish gradually even as his mother Ellen sought
to find some form of treatment. And just as he was going completely blind at
age 13, his mother was killed in an auto accident.
Ed Weihenmayer, Erik's father, recalled those years after his wife's death as
difficult for the family, but particularly for Erik, who was angered by the
darkness that had engulfed him. But the elder Weihenmayer, a former Air Force
attack pilot and Wall Street broker, did not let his son wallow in self-pity.
Instead he set him on a path of goals normally reserved for the very fit and
sighted. The two of them, along with two older brothers, hiked the mountains
of Peru and the rugged trails of northern Spain. It was, as Ed Weihenmayer put
it, a way to bond the family, "to create the kind of glue" that his
wife had provided.
But the son soon surpassed the father in athletic accomplishments, with minimal
tools employed to compensate for blindness. Lead climbers wear a tiny bell so
Weihenmayer can track their positions. Scaturro recalled that, on last year's
climb of Ama Dablam, the Sherpa guides refused to believe that Weihenmayer was
blind. "They'd jump out in front of him, waving their hands, trying to
make him flinch," said Scaturro, a geophysicist specializing in oil and
gas exploration.
And what makes Weihenmayer try these things? "It's because he's got the
same sense of adventure that we all have," Scaturro said.
And what about Everest? Again, Scaturro is quick with a reply about the ascent,
which will be along the same route described in Into Thin Air, the bestseller
about an ill-fated expedition.
"He's ultra prepared," said Scaturro, who has reached the summit of
Everest once. "Everest is no technical challenge for this guy. He's probably
way more qualified than 80 percent of the people who climb Everest."
The Ama Dablam climb last year and the Everest expedition this
spring are sponsored by the Baltimore-based National Federation of the Blind.
Barbara Pierce, the organization's director of public education, said the idea
is to show people that blindness and adventure can be combined, that the bottom
line is that ten experienced climbers will make the assault on Everest. It's
just that one will be blind.
"It's so important to get the world to recognize . . . this bold attitude
about the human capacity to be victorious in the face of challenge," she
said.
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NEWSLINE FOR THE BLIND
The National Federation of the Blind announces the availability
of Newsline, an electronic publication of major daily newspapers, specifically
tailored for blind and visually-impaired readers. With 69 regional "hubs"
in 33 states, Newsline electronically "reads" all of each day's edition,
which is immediately made available via modem to the local distribution centers.
Users telephone the nearest local center (or place a long-distance call to the
National Center for the Blind) and listen to the articles they choose, read
to them in a synthesized voice. The reader is free to jump between articles,
sections, and publications, and to pick the speed of reading to suit their needs.
There is no subscription fee or other charge to access the system (although
long-distance phone charges may apply, if the nearest local service center is
not in your vicinity).
Newsline is not the Internet, and no computer is necessary to use it. The system
is easy to learn, and easy to access. Service is available to any person at
least legally blind, and again, there is no charge.
USA Today, The New York Times, The Washington Post, The Los Angeles Times, The
Toronto Globe and Mail, The Wall Street Journal, and the Chicago Tribune already
participate. More publications, including local papers, are expected to join
shortly. As the system expands, even more blind individuals will have rapid
and comprehensive access to daily print news media, a substantial improvement
over "live reader" services. Our goal is to make the service available
to every blind person in the country, and soon.
The NFB is looking for individuals and organizations willing to sponsor and
maintain more new local distribution centers, in areas not yet served. For further
information, about participating or sponsorship, contact Newsline Network, National
Federation of the Blind, 1800 Johnson Street, Baltimore, MD 21230; telephone:
(410) 659-9314.
Back to Top
WE ARE ROYANNE'S VASCULAR SYSTEM
by Royanne R. Hollins
Photo: portrait. Caption: Royanne R. Hollins.
From the Editor: The following is a unique, "from the
inside," view of long-term diabetes. Royanne Hollins has experienced far
more than her share of ramifications, yet never wavers in her determination
to live life to the fullest. With minimal editing, here is her story.
Being greatly affected by a condition known as type I insulin-dependent
diabetes, we have a story to tell about Royanne: We are arteries, veins and
capillaries. We twist, wind and course throughout her body. We stretch 60,000
miles in length. That's 2 ½ times around the earth at the equator! Not
only do we carry blood and oxygen to the major organs and systems, but we also
carry away by-products for an efficient waste disposal. We are often called
major vascular and microvascular systems.
For 31 years, Royanne lived with diabetes. She did a pretty
good job of controlling the disease, not allowing it to get in the way of her
everyday life and career goals. She lived with the disease for 22 years before
any long-term complications set in. During those years, however, we knew very
well what was happening to Royanne, but we're not allowed to tell her of these
devastating events until obvious symptoms surfaced.
The first indication that something was really going wrong
was proliferative diabetic retinopathy, also known as diabetic eye disease.
This condition showed itself to Royanne and her health care team in December
1985. She was immediately placed on aggressive laser treatment therapy to save
the vision. The aim was to keep enough sight to continue to drive, work and
fulfill her life goals.
Prior to 1985, we all knew big trouble lay ahead. We depend
on a balance of chemicals, enzymes, gases, pressure and glucose to allow us
to function properly. If this crucial balance is upset, we feel it terribly.
Although we try our best to pump blood through and continue to work, an overload
of blood glucose is like pumping slow-moving molasses in the wintertime.
Unfortunately, there were times when her body began to fill
us with ketones and acids—much like fingernail polish remover. We hated
it. Can you imagine?
When Royanne's blood sugars fell too low, she would pass out
and become unresponsive. We would try our best to get the other organs to give
us a hand in this emergency situation. We called on the liver to release as
much sugar as she could muster, but she seemed to be asleep most of the time.
We would yell for the adrenal glands to get going, but even they got slower
and slower as time passed. We lost count, but there were numerous times when
we would see the floor rising to Royanne's face as she passed out again and
we prepared ourselves for the trauma of the fall itself.
We could hear her discuss her problems with her health care
team. We could hear the team's responses throughout the years. The level of
frustration on Royanne's part grew greater daily. With each new emergent event,
we became more and more concerned for her.
We know that we were directly responsible for Royanne's eye
disease, but it was not intentional and she knows and forgives us for that.
We were starving in her retinas. To prevent starvation, we were programmed to
create new vessels, but we guess we did not do a good job. As the new vessels
were created, they filled with blood but would soon burst under the pressure,
as they really were not what God intended to be present in the eyes. We were
just trying to help, but we were not the Creator, so we failed.
With the help of numerous laser treatments and surgery, Royanne
has maintained some sight in one eye. Unfortunately, we were not able to prevent
her from becoming legally blind nor her loss of driving ability. This was pretty
devastating, since she was so independent, always wanting to be out there in
the thick of things helping others.
Since the micro vascular system affecting the eyes was having
such trouble, we knew that the same system affecting the kidneys was only a
short time away. We tried to warn Royanne the best we could. Once again, we
heard her vocalize her frustrating situation to her health care team over and
over again. It seemed that the answers she was getting were all starting to
sound like, "I'm sorry ... I don't know what to tell you ... Let's try
this and see if this works ... Do you want to try such and such?" We give
her much credit as she was willing to try just about anything to correct the
situation.
Early signs of kidney disease began in 1991. Unfortunately,
our ability to function properly worsened as Royanne's emergency events happened
more frequently. It was taking us longer and longer to recover after each event
and we truly felt we were letting her down miserably.
In our discussions with nerves and brain, we also learned of
other problems that were happening. We felt terrible. Her stomach, heart and
intestinal nerves were all being adversely affected. The nerves in her legs
and feet were beginning to scream out in pain. Her fingers were going numb,
making it impossible to read Braille. Royanne's brain confirmed our suspicions
that with each emergent event, brain cells were being lost.
Thus, after 28 years with type I insulin-dependent diabetes,
Royanne showed symptoms of autonomic neuropathy (heart, stomach, intestines,
hypoglycemic unawareness), peripheral neuropathy (fingers, hands, legs and feet),
early nephropathy (kidney disease), and retinopathy (eyes). She was only 37
years old at the time.
In November 1991, we traveled to the University of Minnesota
to meet with Dr. Sutherland about a solitary pancreas transplant. The work-up
for this evaluation was very thorough. Royanne got a bird's eye view of what
to expect should she remain diabetic without a transplant and what might be
expected should she receive a transplant. We were pretty amazed by the information.
In December 1991, Royanne met with Dr. Perez at UCDMC (University
of California at Davis Medical Center) in Sacramento. He was the head of the
kidney/pancreas and pancreas transplant program. Dr. Perez had been a transplant
fellow with Dr. Sutherland in Minnesota and knew about Minnesota's extensive
evaluation and testing of potential transplant patients. He accepted Royanne
as a candidate immediately. She was then placed on the UNOS (United Network
for Organ Sharing) list and began the long wait.
She waited almost 2-1/2 years for her new pancreas before its
arrival on October 4, 1994. The transplant went well and she spent only eight
days in the hospital.
We are all quite impressed with the results. We no longer battle
over crazy blood sugar levels pulsing through us. Of course, Royanne is taking
a good number of medications and will need to have her immune system suppressed
for the rest of her life. The elements of her immune system say they don't have
a problem with suppression because they know if they get out of whack the doctors
at UCDMC will fine tune things quickly.
We all agree that it is much more pleasant to have the current
medications coursing through us. We were really fighting a losing battle before.
Now, we feel Royanne has a much better chance for a long, productive and fulfilling
life than what she had before the transplant. We no longer have to yell and
scream at her liver, kidneys, brain and adrenals to get back into action and
get this girl out of trouble.
We love Royanne and were finding it harder and harder to watch, listen and suffer
with her. She is now very energetic. We had been sleeping with her 12 to 16
hours a day. Since the transplant, we now get to experience full days, including
the sunrise each morning. She has not passed out at all. If we see the carpet
up close it now only means that she is cleaning again, not headed for another
crash.
The nerves have told us that they are breathing easier these
days, as if the air is new and fresher after years and years of being stagnant.
The legs and feet no longer scream out in pain and the fingers have recovered
their sensitivity. The stomach nerves have improved dramatically allowing Royanne
to eat without nausea or vomiting. We can personally tell you this makes her
glad.
Royanne is so happy with stable moods. She can now exercise,
which makes her feel great. She had not been able to do so the two years before
the solitary pancreas transplant because she had become so brittle that the
exercise caused more problems than it solved.
The most incredible news yet is that the circulation to the
eyes is returning. She and her eye doctor have seen an improvement in the acuity
in one eye. What a terrific accomplishment. This was not a guarantee, as none
of the improvements were, but it certainly has sparked a new zest for life that
we always knew was there, but had become dormant over the years.
We are excited! With Royanne's new found zest for life, we are so proud to be
here to experience it with her. We will continue to function to the best of
our ability. She has certainly done the right thing where we are concerned and
we will do our best to serve her well for many years to come. Royanne is now
40 and considers herself a diabetic "has-been" because she no longer
has diabetes.
We are fearfully and wonderfully made. When God's creation
is affected adversely from outside disease, sometimes the help of those called
to be healers and physicians can make a tremendous difference. In Royanne's
case, it truly has. She feels awesome and so do we.
Back to Top
COOKING WITH SUZI
by Suzi Castle
Artwork: Bag filled with food.
It's time to treat your family and friends to a delicious,
healthful dinner. There's no need to feel deprived, with so many delicious low?fat
foods to choose from. By planning ahead, shopping carefully and preparing lower?fat
versions of your favorite recipes, you can offer your loved ones the gift of
health.
Roast Filet Mignon with Mushrooms served with fat?free Creamy
Mashed Potatoes is guaranteed to satisfy the most discriminating tastes!
Roast Filet Mignon with Mushrooms
Ingredients
1-1/2 pounds lean, whole filet mignon, trimmed of fat
2 cloves garlic, cut into slivers
1 teaspoon Original Blend Mrs. Dash, divided
3 cups sliced mushrooms
½ cup sliced green onion
½ teaspoon Morton Lite Salt Mixture
Instructions
Make small cuts in filet and insert garlic slivers. Sprinkle ½ teaspoon
Mrs. Dash over meat. Place filet in a large, heavy ovenproof skillet sprayed
with nonstick spray. Roast in a preheated 450 oven. Cook 15 to 20 minutes for
rare, 25 to 30 minutes for medium, or 35 to 40 minutes for well done. Remove
roast from oven and let stand for 10 minutes on a warm serving platter. Meanwhile,
add mushrooms and green onion to skillet. Sprinkle with Morton Lite Salt Mixture
and ½ teaspoon Mrs. Dash. Roast vegetables in 450 oven for 10 minutes.
Slice meat and serve with cooked mushrooms and green onion.
Serves 6. Per serving: 178 calories (43% from fat); 24gm protein;
8.4gm fat (3gm sat.); 1.8gm carbohydrate; 145mg sodium; 70mg cholesterol; 0.9gm
fiber. Exchanges: 3-1/2 lean meat.
Creamy Mashed Potatoes
Ingredients
5 medium potatoes (2-1/2 lbs.), peeled and cut into quarters
1 teaspoon each: Morton Lite Salt Mixture, dried parsley flakes and dried onion
flakes
1 package (3 tablespoons) Butter Buds
½ cup nonfat milk powder
1/4 teaspoon freshly ground pepper
½ teaspoon garlic powder
Instructions
Place peeled potatoes in a large pot and cover with water. Cover; simmer for
30 minutes, or until potatoes are tender. Drain, but reserve cooking liquid.
Mash potatoes with a potato masher. Add ½ cup hot reserved cooking liquid
and remaining ingredients. Mash until well blended.
Serves 8. Per serving: 87 calories (1% from fat); 4.1gm protein;
0.12gm fat (0.06gm sat.); 18.2gm carbo.; 251mg sodium; 1.5mg cholesterol; 0.31gm
fiber. Exchanges: 1 bread.
Suzi Castle's Deliciously Healthy Favorite Foods Cookbook is
available now in most bookstores or by sending $18.90 ($14.95 + $3.95 S&H)
to: Health Cookbooks, Dept. M, 3520 McCourry Street Bakersfield, CA 93304.
Back to Top
TALKING MEDICINE IDENTIFIERS
by Ed Bryant
Photo: portrait. Caption: Ed Bryant.
Blind people, and those losing vision, have always had difficulty
identifying their medications and telling them apart. Serious consequences can
follow, when prescriptions, oral or injectable, are mistaken, and the wrong
dose given. One of those medications is insulin.
For years I have worked to make insulin manufacturers aware of this problem,
of the need to make insulin vials distinguishable from each other by type/duration,
without sight. The drug companies have not been particularly interested. We
have been left with our homemade Braille labels, rubber bands, tape, and other
temporary "recognition systems."
A partial solution has been the Roche VoiceMate blood glucose monitor, with
its "talking insulin identifier" feature. This monitor reads the bar-codes
on Lilly insulins - but not on any others, and, while quite functional, is very
expensive. A more general solution is needed.
In September of 1999, Dr. Marc Maurer, President of the National Federation
of the Blind, asked me to attend a meeting at the National Center for the Blind,
in Baltimore, Maryland. Representatives from the ASKO Corporation discussed
and demonstrated a prototype of their ALOUD Audio Labeling System.
First of a new class of "talking prescription containers," the ALOUD
consists of three components: The recording unit (in the possession of your
pharmacist, to whom ASKO will provide it without charge), the playback unit
(cost: less than $100, and you need only one), and the Audio Label (which contains
a digital storage chip). Each medication will need its own Audio Label.
When your pharmacist prepares your medication, and creates a written label,
an "audio label" is created also. With the ASKO recording unit, the
pharmacist reads pertinent dosage information onto the Audio Label, as if into
a tape recorder. Like recorded tape, the Audio Label is reusable — when
your prescriptions change, the pharmacist can replace old information with new.
And note, there is no language barrier — whatever language your pharmacist
speaks can be easily recorded. Standard reusable "audio labels" cost
$10 each, and the smaller labels (for insulin vials) will cost $5 each.
The original ALOUD was very functional, but a bit large, not particularly convenient
for use with an insulin vial. As those of us who most need a "talking label"
on our insulin are likely users of an adaptive insulin drawing device such as
the Jordan Count-A-Dose, any "talking label" needs to not interfere
with insulin drawing. The original ALOUD made using the Count-A-Dose inconvenient,
and I conveyed this fact to the management at ASKO.
Clearly ready and willing to work with the NFB, they promised to try to shrink
the Audio Label, to make it more convenient for blind diabetics. The electronics,
and the system's capacities, will remain unchanged. As of this writing, I have
not seen the revised Audio Label, but I am told it is much smaller, about 3/4"
x 1-1/2," and extremely thin. ASKO management is scheduled to bring samples
of the smaller label to the NFB national convention in Philadelphia.
A completely different approach to the same problem, far more high-tech, has
been taken by En-Vision America, maker of the ScripTalk system. Like the Aloud
System, the ScripTalk consists of recorder, playback unit, and labels; but where
the Aloud stores and plays back the pharmacist's voice, the ScripTalk utilizes
Radio Frequency Identification (RFID) technology, and encodes a microchip with
the same information typed onto the label - detected by the user's scanner and
played back by through a voice synthesizer. As with the Aloud, the pharmacist
determines the label content; the consumer can only play back the information.
At this early stage, the ScripTalk's recorder (sold only to pharmacists) and
playback unit are fairly expensive, approximately $1500 and $250, respectively
(each label costs $1), but these prices are expected to drop. Also, within a
year, ScripTalk will have eight times the storage capacity of the present system,
so each audio label will offer far more data to the blind user.
Because the ScripTalk's special microchip is in the label, no great bulk is
added to the label or container, and an insulin vial with label attached should
easily fit into adaptive measuring devices like the Count-a-Dose. They offer
two label sizes (same chip) with the smaller label ½" x 3/4"
specifically for small vials like insulin.
En-Vision, a regular exhibitor at NFB National Convention, has worked for years
to develop products genuinely useful to blind people.
A simpler, more limited approach is offered by Millennium Compliance Corp.,
maker of the Talking RX audio label. Although the Talking RX looks like the
Aloud, and stores spoken information on a digital chip, there is no separate
"recorder" — each unit has the capacity to record. Where the
Aloud requires a different "audio label" on each prescription, but
only one playback unit, each Talking RX unit is self-contained, recorder and
playback, and no separate "audio label" is required. You attach pillbox
or insulin vial to the unit, and leave it there until you've finished that course
of medication. They're inexpensive ($19.95 each, suggested retail); but if you
take a lot of meds, you may need to buy a lot of Talking RX devices.
Your pharmacist programs the Aloud (your playback unit can't alter the message)
but you load information into the Talking RX, and you, the consumer, can alter
it. You will need a different Talking RX for each of your medications.
All the systems have their pluses, and their problems. Although both the ALOUD
and the Talking RX are "lifetime" products, endlessly reprogrammable,
and both are simple and relatively inexpensive, neither is particularly convenient
for use with an insulin vial, as both are really too big to work well with adaptive
measuring equipment, unlike the ScripTalk. (Note: I haven't seen the newest
ALOUD label, but its smaller size should go a good way toward answering some
of my misgivings.}
To conclude, my primary interest has always been the ability to distinguish
one insulin vial from another. Designed for pill bottles, the ALOUD and Talking
RX systems are only partial answers for insulin identification. Both require
sighted intervention — and until there is some way a blind person can reliably
and independently tell insulins apart, without such aid, the job is not completed.
The ScripTalk, while a larger initial investment, appears to better fit for
the needs of blind persons at this time.
Stay tuned for further improvement!
ASKO Corporation
c/o Audiosears Corp.
2 South St.
Stamford, NY 12167
1-800-533-7863
En-Vision America
1013 Porter Lane
Normal, IL 61761
1-800-890-1180
(309) 452-3008
Millennium Compliance Corp.
PO Box 649
Southington, CT 06489
860-681-9277
Back to Top
Independent home dialysis possible for blind
persons
by Lois M. Schmidt, R.N., C.N.N
Lois Schmidt, R.N., C.N.N., is a certified nephrology nurse
formerly with the Peritoneal Dialysis Unit at Dialysis Clinics, Inc., Columbia,
Missouri.
Kidney failure is a disease occuring in about half of those people who have
diabetes. It presents new challenges to the person who may at the same time
be experiencing visual changes or blindness.
Preparation for dealing with kidney failure should include
a thorough education program to adequately assess all the choices for treatment.
Some patients who are eligible will seek a kidney transplant to replace their
failing kidney function. Others will decide to use a dialysis therapy. Those
who choose transplant may also require a period of dialysis treatment while
they await transplantation.
There are two basic types of dialysis therapies, with many
variations depending on the provider dialysis unit. Hemodialysis is usually
done at a dialysis clinic by specially trained nursing staff. However, it may
be done at home if the patient has a partner who can be taught to perform the
treatment. Peritoneal dialysis, commonly called CAPD (continuous ambulatory
peritoneal dialysis), is a self-care, home therapy.
Peritoneal dialysis works inside the body. It utilizes the
peritoneal membrane, which forms a "sac" inside the abdominal cavity,
to remove waste products and extra fluid from the body. This process is accomplished
by allowing dialysis solution to flow into the peritoneal cavity by way of a
permanent tubing, called a catheter, which is surgically placed through the
abdominal wall. The solution remains in the abdomen for four to eight hours
while the person goes about his or her usual activities. At the end of this
time, the dialysis solution is drained out and is exchanged for fresh dialysis
solution. This "exchange" is usually performed four times daily.
Special training is provided to patients choosing CAPD to enable
them to successfully use this therapy. All patients (including those without
visual problems) are encouraged to have a family member or friend participate
in their education sessions. Most people find it very reassuring to have a support
person available if needed.
The exchange procedure of CAPD can be performed by a blind
person using one of several assist devices available on the market today. This
specialized equipment, as with all home dialysis supplies, can be obtained through
dialysis units. For economic reasons, some dialysis clinics make use of supplies
from only one company and thus offer only one type of device. However, there
are at least four different types of systems available which may be used by
a patient with visual impairment and/or neuropathy (nerve damage) of the hands.
Some of the devices feature an ultraviolet light which provides extra protection
against infection. Others make use of large or recessed connections to help
prevent contamination. Each system has some special features which may make
it preferable for an individual patient's needs.
Another form of peritoneal dialysis is CCPD (continuous cycling
peritoneal dialysis). This type of dialysis makes use of an automated cycler
which is designed to operate while a person is asleep. The cycler is programmed
to exchange the dialysis fluid at periodic intervals during the night. While
this dialysis is more complicated than CAPD, it does allow daytime freedom from
exchanges. Also, it may be the appropriate choice for a patient who requires
the assistance of another person.
As with all things in life, peritoneal dialysis is not without
its disadvantages. The most serious potential complication of this form of dialysis
is the risk of peritonitis, infection of the peritoneal cavity. This infection
can usually be treated successfully with antibiotics. However, great care must
be taken by the patient to pay attention to cleanliness, so as to avoid infections
if at all possible.
There are also advantages to CAPD. One, particularly beneficial
for the diabetic, is that insulin may be added to the dialysis solution rather
than being given as an injection. Insulin administered in this way is absorbed
and used by the body in a way that usually results in good blood sugar control.
CAPD is a slow, continuous, gentle form of dialysis which provides a steady
chemical and fluid balance in the body. This can aid in maintaining normal blood
pressure as well as providing a sense of well-being. Also, since CAPD is performed
at home, the necessity of travel to a dialysis center three times a week is
eliminated.
CAPD has proven to be an effective form of dialysis for persons
with diabetes, including those with visual impairment and neuropathies. Extensive
education is required prior to the decision for choice of dialysis therapy.
Each individual must make his or her own decision based on careful evaluation
of needs, motivation and family support, as well as emotional and physical capabilities.
Those persons most successful with CAPD are those who are highly motivated to
participate in their own health care.
(From the Editor: I have received reports that sometimes, when
blind diabetics begin dialysis treatments, they aren't told about CAPD. Because
of the diabetic's blindness, his/her physician doesn't always explain the different
types of dialysis treatments. Unfortunately, it is, in some cases, assumed that
because the patient is blind, he/she won't be able to use CAPD therapy.
I visited Lois Schmidt, RN, CNN, at Dialysis Clinics, Inc.
(DCI) Peritoneal Dialysis Training Room in Columbia, Missouri. She showed and
explained to me step by step what CAPD patients, blind and sighted, must do
to successfully use this form of treatment. The training room contained a dummy
doll with a CAPD catheter connected to its lower abdomen. I actually went through
the process of hooking and unhooking the dialysis bags with and without solution
for the CAPD exchange.
All CAPD patients must be careful not to touch and contaminate
the ends of the catheter tubing, which could cause infection to the peritoneal
cavity. Blind patients are trained how to use the ultraviolet germicidal exchange
device. This instrument delivers a dose of ultraviolet light, which kills almost
all bacteria on key components of the catheter and exchange system connections.
Some dialysis units require that all patients, blind and sighted, use some sort
of exchange device when connecting and disconnecting solution bags. Lois Schmidt
said that, "When blind or visually impaired people become familiar with
the system, and can do it well and efficiently, they're no more at risk than
anyone else." She also said that when diabetes has advanced to the point
where the patient has lost his/her sight, they often, from neuropathy, lose
the feeling in their fingertips as well. It is imperative that blind patients
have fairly good sensory ability in their fingers because they must be able
to feel slots and/or openings to correctly use the ultraviolet germicidal exchange
device. DCI provides several days of step by step training for CAPD patients.
Lois Schmidt said that some blind diabetics may have difficulty
adding medication, such as insulin, to the bag if there is a problem with dexterity.
The insulin syringe needle is inserted into a small port, which must be prepped
with an anti-bacterial solution. There is a needle guide available that enables
blind persons to independently do this, but it is imperative that neither the
port nor the guide be contaminated. It doesn't take much bacteria introduced
into the port area to cause infection. The peritoneal cavity is a sterile area.
This cavity contains no white blood cells to fight infection. As soon as bacteria
is introduced, it colonizes, multiplies, and very quickly infects that cavity.
I am a blind diabetic who had no trouble with the CAPD exchange
procedure. It is important to realize that some dialysis patients, whether they
are blind or sighted, can use CAPD, and some cannot. It is well documented that
there are alternative techniques which enable blind citizens to participate
fully in mainstream society.)
Back to Top
RECIPE CORNER
Artwork: vegetables.
This issue, all recipes are taken from The Diabetic's Healthy
Exchanges Cookbook, by JoAnna M. Lund, published 1996 by Perigee.
HOMEMADE CREAM OF MUSHROOM SOUP
Ingredients:
2 cups chopped fresh mushroom
½ cup chopped onion
½ teaspoon dried minced garlic
2 cups (one 16-oz can) Healthy Request Chicken Broth
1 tablespoon reduced-sodium soy sauce
1/4 teaspoon black pepper
1-1/2 cups (one 12-oz can) Carnation Evaporated Skim Milk
6 tablespoons all-purpose flour.
Instructions:
In a large saucepan sprayed with butter-flavored cooking spray,
saute mushrooms, onion, and minced garlic until mushrooms start to turn limp,
about five minutes. Add chicken broth. Mix well to combine. Bring mixture to
a boil. Lower heat. Stir in soy sauce and black pepper. In a covered jar, combine
evaporated skim milk and flour. Shake well to combine. Stir milk mixture into
mushroom mixture. Continue cooking, stirring constantly, until mixture thickens,
about five minutes.
Makes four 1-cup servings: 157 calories, 1gm fat, 11gm protein, 26gm carbohydrate,
462mg sodium, 1gm fiber. Exchanges: 1-1/4 vegetable, 3/4 skim milk, ½
bread.
GREEN BEANS IN ONION SAUCE
Ingredients:
½ cup finely chopped onion
1-1/2 cups (one 12-oz can) Carnation Evaporated Skim Milk
3 tablespoons all-purpose flour
1/4 teaspoon lemon pepper
4 cups (two 16-oz cans) cut green beans, rinsed and drained
Instructions:
In a large skillet sprayed with butter-flavored cooking spray,
saute onion until tender, about five minutes. In a covered jar, combine evaporated
skim milk and flour. Shake well to combine. Pour milk mixture into skillet with
onion. Add lemon pepper. Mix well to combine. Stir in green beans. Continue
cooking, stirring often, until mixture thickens and beans are heated through,
about five minutes.
Makes four 1-cup servings: 131 calories, less than 1gm fat, 9gm protein, 23gm
carbohydrate, 449mg sodium, 2gm fiber. Exchanges: 2-1/4 vegetable, 3/4 skim
milk, 1/4 bread
BUSY MAN'S SKILLET
Ingredients:
8 ounces ground 90% lean turkey or beef
½ cup chopped onion
1 cup (one 8-oz can) Hunt's Tomato Sauce
1 cup frozen whole-kernel corn
1 cup cooked spaghetti, rinsed and drained
1 teaspoon dried parsley flakes.
1/8 teaspoon black pepper
Instructions:
In a large skillet sprayed with butter-flavored cooking spray,
brown meat and onion. Add tomato sauce, corn, spaghetti, parsley flakes, and
black pepper. Mix well to combine. Lower heat and simmer for 5 to 10 minutes,
stirring occasionally.
Makes four 1-cup servings. 197 calories, 5gm fat, 14gm protein, 24gm carbohydrate,
427mg sodium, 3gm fiber. Exchanges: 1-1/2 protein, 1-1/4 vegetable, 1 bread.
MAPLE CUSTARD
Ingredients:
1 (4-serving) package JELLO Sugar-Free Cook&Serve pudding
mix
2/3 cup Carnation Nonfat Dry Milk Powder
1-1/2 cups water
½ cup Cary's Sugar Free Maple Syrup
1/4 cup Cool Whip Lite
Instructions:
In an 8-cup glass measuring bowl, combine dry pudding mix and
dry milk powder. Add water and maple syrup. Mix well, using a wire whisk. Cover,
and microwave on HIGH (100% power) four minutes, whisking after two minutes.
Pour hot mixture into four dessert dishes. Refrigerate at least one hour. Just
before serving, top each with one tablespoon Cool Whip Lite.
Makes four servings: 84 calories, less than 1gm fat, 4gm protein, 16gm carbohydrate,
242mg sodium, 0gm fiber. Exchanges: 1 starch.
Author JoAnna Lund also publishes the monthly HEALTHY EXCHANGES
FOOD NEWSLETTER, addressing healthy weight loss, cholesterol, and diabetic concerns.
For information, contact: HEALTHY EXCHANGES, PO Box 80, DeWitt, Iowa, 52742;
telephone: 1-800-766-8961, website: www.healthyexchanges.com
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ASK JANIS
Photo: portrait. Caption: Janie 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:
What should a complete diabetes examination consist of?
Dear Jim:
A quality diabetes physical includes:
1. A quality review of your home blood glucose results.
2. A discussion of your medication, diet, and exercise program.
3. A talk about your lifestyle. What changes have you made since
your last visit?
4. An assessment of your weight, blood pressure, and pulse.
5. An exam of your eyes, heart and lungs.
6. A foot exam.
7. A check of your skin, with special focus on injection and
test sites.
8. A check of your reflexes, sensitivity (with a pin, monofilament,
or soft cotton), and review of any symptoms such as dizziness, pain, burning,
numbness, constipation, diarrhea, difficulty with urination, and sexual performance
problems, which can all be affected by diabetes.
9. A look at your gums, teeth, mouth, and throat.
10. A check of your thyroid gland.
11. A blood and urine test.
12. Vaccinations, as needed.
13. Other possible tests - mammogram/breast exam, pap smear,
rectal exam for women, prostate and rectal exam for men. A stool sample should
also be tested, to detect colon cancer.
Dear Janis:
Are airplane pilots allowed to fly if they have diabetes?
Dear Sandra:
In 1996, the FAA officially changed its policy regarding pilots
with diabetes. Under the new policy, each pilot with diabetes is to be evaluated
for a medical certificate. Candidates must meet rigorous medical guidelines,
and comply with an FAA-approved monitoring protocol before, during, and after
flight. For a copy of the medical guidelines, or for more information, please
contact Joe LaMountain, Manager of Government Relations, American Diabetes Association,
1701 N. Beauregard Street, Alexandria, VA 22311. You can also contact him by
fax at: (703) 549-8748. (Editor's Note: The FAA has posted its flying and diabetes
policies on the following web page:
www.cami.jccbi.gov/AAM-300/insulin.html)
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NEW DEVICE EASES EYE EXAMINATIONS
We all know the importance of regular, thorough eye examinations.
If you have diabetes, regular eye exams can pick up evidence of retinopathy,
diabetic eye disease, early on, in time to intervene and possibly save your
sight. Make it a habit!
But optometrists and ophthalmologists are not spread evenly around, nor equally
trained or equipped. Hopefully, we're all familiar with the dilated retinal
examination? The one that takes the better part of an hour, and hurts? Yes,
it does a good job of revealing retinal disease, but it's NOT an automatic part
of a regular eye exam.
Now there's an alternative. Optos North America, the US subsidiary of Optos
PLC of Dunfermline, Scotland, has developed The Panoramic 200 system, a computerized
scanning device that enables the operator to obtain a clear, wide-field image
of the retina (the "Optimap") in about three minutes -- without the
need for retinal dilation.
Does it work? A study conducted at the University of Pittsburgh compared results
of the Optimap to those produced by traditional dilated examination (two teams
saw each patient, and did not communicate with each other). Results were very
similar (about 74% sensitivity for both). Then consider that the Optos device
works very rapidly, allowing the eye doctor to see more patients in the same
amount of time -- and you see how this new tool could become really important.
For more information, contact: Optos North America, 199 Forest Street, Marlborough,
MA 01752; telephone: 1-800-854-3039; website: www.optos.com
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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.
Diabetes Newsletter
Are you always looking for more diabetes information? Insulin
manufacturer Eli Lilly and Company offers the free quarterly Lilly Diabetes
Today, in print and on the world wide web at: www.LillyDiabetes.com
The paper contains articles, advice, inspirational stories, recipes, and coupons.
Subscription is free, but a short survey must be completed to receive it. Contact:
Eli Lilly and Company, PO Box 4893, Trenton, NJ 08650-9058, or at the above
website.
New Oral Medication
One of the most common ramifications of diabetes is nephropathy, diabetic kidney
disease. Both type1 and type 2 diabetics are at risk (up to 40% of all type
2 diabetics develop end stage renal disease, ESRD), so both are in need of any
treatment that could slow disease progression.
At this time doctors have a number of medications to turn to, to slow the rate
of kidney destruction that so often follows diabetes. Many are blood pressure
reducers: the ACE inhibitors, Calcium Channel Blockers, and, most recently,
Angiotensin II receptor blockers (ARBs).
Novartis Pharmaceuticals Corporation is testing its antihypertensive (blood
pressure reducing) medication Diovan, for use in treatment of patients with
high blood pressure and proteinurea, a sign of ESRD. So far they, have found
that Diovan is as effective as the frequently-prescribed ACE Inhibitor Captopril,
without the chronic cough that so often follows therapy with ACE inhibitors.
The drug has been shown effective in lowering microalbuminuria (another diagnostic
for the presence of kidney damage) and the current tests show it to be as effective
in slowing the progressive rise of microalbuminuria as Captopril.
For more information, doctors should contact Novartis Pharmaceutical Corporation,
59 Route 10, East Hanover, NJ 07936-1080; telephone: (973) 781-5388; website:
Bug Spray and Sunscreens
While you're out and about this summer, you'll probably be trying to avoid serious
sunburn, by using a sunscreen cream. You may also be where the bugs are thick,
and may reach for an insect repellent. The chemical DEET, active ingredient
in many insect repellents, significantly reduces the effect of sunscreens, wherever
it comes in contact with them. If you need to use both, take extra precautions,
like long sleeves and perhaps a broad-brimmed hat.
The Secret Airbase
You've all heard of the Air Force's ultra-high-security, super-secret base in
Nevada, known simply as "Area 51?"
Well, late one afternoon, the Air Force folks out at Area 51 were very surprised
to see a Cessna landing at their "secret" base. They immediately impounded
the aircraft and hauled the pilot into an interrogation room.
The pilot's story was that he took off from Vegas, got lost, and spotted the
base just as he was about to run out of fuel. The Air Force started a full FBI
background check on the pilot and held him overnight during the investigation.
By the next day, they were finally convinced that the pilot really was lost
and wasn't a spy. They gassed up his airplane, gave him a terrifying "you-did-not-see-a-base"
briefing, complete with threats of spending the rest of his life in prison,
told him Vegas was that-a-way on such-and-such a heading, and sent him on his
way.
The next day, to the total disbelief of the Air Force, the same Cessna showed
up again. Once again, the MPs surrounded the plane ... only this time there
were two people in the plane.
The same pilot jumped out and said, "Do anything you want to me, but my
wife is in the plane and you have to tell her where I was last night!"
Phone Recording Equipment
Individuals who are blind or otherwise dependent on the tape recorder as a note-taking
device know that sometimes it is necessary to record a telephone call. Traditional
"phone mikes," for those of us who don't have a brother in the CIA,
have been complex, unreliable, with more batteries and suction cups than a four-year
old's Christmas toy, and their recordings have hardly been crystal clear. That
has now changed.
Federationist Jerry Maccoux has developed the Phonote, a compact, no-batteries
device that greatly simplifies the task of recording your phone conversations.
It also gives a loud, clear, undistorted sound, as if the other party were in
the room with you. You will need: The device, a tape recorder with an "aux-input"
or remote microphone jack, and an extension phone line (which can be as simple
as a Y-jack and six-foot phone line running from your modular plug). Plug the
second line into the Phonote, the Phonote into your recorder, and you're ready.
Please note a number of laws restrict the taping of phone conversations. To
be safe, inform the other party a recording is being made.
The Phonote, priced at $12 (plus $3.50 shipping), is available from: Phonote,
PO Box 6021, St. Joseph, MO 64506; telephone: (816) 279-4562; e-mail: [email protected]
Website for the Blind
It is not easy for blind people to find news, health and wellness information,
assistive technology information, and current news about disability issues.
Now there is a website, www.enablelink.com, that combines all the above with
a fully accessible online shopping mall of assistive products for the blind:
Talking watches, talking VCRs, talking thermometers, screen readers, software,
Braille translators and embossers, and much more. Check it out: www.enablelink.com
Dialysis Information
Every year, thousands of people face kidney failure, End Stage Renal Disease,
and must commence dialysis, or obtain a kidney transplant. Diabetes is both
the #1 cause of kidney failure, and the leading cause of new blindness in the
United States today. There is great need for informational material about kidney
disease, both in print and alternative format.
The Life Options Rehabilitation Program publishes several informational items
about dialysis, including the free audiotapes: Working Effectively with your
Dialysis Team, and Voices of Experience: Personal Stories. They also offer the
free video: Feeling Better With Exercise: A Video Guide for People on Dialysis.
Other material is available free for downloading in PDF format. Contact: Life
Options Rehabilitation Program; telephone: 1-800-468-7777; website: www.lifeoptions.org
Drug Tests
For any prescription drug to receive approval from the Food and Drug Administration
(FDA), it has to go through a long and rigorous testing process -- and much
of that testing is on human subjects. Generally these volunteers are adult,
male, and white. Many drugs (not just diabetes medications) are not formally
tested on children, the aged, women, or minorities. Only a very limited number
of diabetes medications are licensed for use with children.
Doctors now routinely prescribe, for women and children, medications that have
been approved by the FDA for adults. This makes determination of exact dose
something of a trial-and-error process.
As type 2 diabetes is increasingly appearing among children and teens, the FDA
and National Institutes of Health are pushing for more testing on women, children
and minorities.
New Surgical Device
Camillo Ricordi, MD, Scientific Director and Chief Academic Officer at University
of Miami School of Medicine's Diabetes Research Institute, has received a world
prize for his invention of the Ricordi Chamber, a device that eases harvesting
and transplantation of pancreatic islet cells. As islet cell transplantation
is an important line of inquiry toward curing type 1 diabetes, the Ricordi Chamber
is an extremely important invention.
VOICE Formats
VOICE OF THE DIABETIC 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.
Division Board
The current (2000/2001) National Board of the Diabetes Action Network of the
National Federation of the Blind is:
President: Ed Bryant (Columbia, MO)
First Vice President: Eric Woods (Denver, CO)
Second Vice President: Sandie Addy (Prescott Valley, AZ)
Treasurer: Bruce Peters (Akron, OH)
Secretary: Sally York (Castro Valley, CA)
Board Member: Gisela Distel (Albany, NY)
Board Member: Paul Price (Valley Center, CA)
Board Member: Dawnelle Cruze (Portsmouth, VA)
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 291,436 VOICE readers could benefit from
your story.
For information and article submission guidelines, contact:
Voice of the Diabetic, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone:
(573) 875-8911.
VOICE FORMATS
VOICE OF THE DIABETIC 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."
Periodically, we receive requests for the VOICE in Braille or large print. It
is not available in either of those formats at this time.
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.
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 291,436 VOICE readers
could benefit from your story.
For information and article submission guidelines, contact:
VOICE OF THE DIABETIC, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone:
(573) 875?8911.
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 Drive 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.
SUBSCRIPTION/DONATION FORM
The VOICE OF THE DIABETIC is a quarterly magazine published
by the Diabetes Action Network of the National Federation of the Blind (NFB)
for anyone interested in diabetes, especially diabetics who are blind or are
losing vision. An outreach publication, it emphasizes good diabetes control,
diet, and independence.
Donations are gladly accepted and appreciated. Contributions
are not only tax deductible but are needed to keep the VOICE and the Diabetes
Action Network moving forward to help people with all aspects of diabetes.
Members of the NFB Diabetes Action Network enjoy priority services
and unique benefits such as a continuous free subscription to the VOICE, automatic
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
experienced complications.
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 cost.
To begin receiving the VOICE, please check one:
[ ] I would like to become a member of the NFB Diabetes Action
Network and receive the VOICE OF THE DIABETIC. (Members are entitled to special
benefits.)
[ ] I would like to receive the VOICE OF THE DIABETIC as a nonmember.
(Nonmembers are encouraged to pay the institutional rate of $20/one year; $35/two
years; $50/three years.)
Send the VOICE in (check one):
[ ] print [ ] cassette tape for the blind [ ] both
and physically handicapped
(recorded at slower-than-
standard speed of 15/16 IPS)
Optionally check this box:
[ ] I would like to make (or add) a tax-deductible
contribution of $__________ to the Diabetes Action
Network of the National Federation of the Blind.
PLEASE PRINT CLEARLY
Name:_____________________________________________________
Address:__________________________________________________
__________________________________________________
City:_______________________ State:______ Zip:__________
Telephone: ( )________________________
Send this form or a facsimile to:
Voice of the Diabetic
1412 I-70 Drive SW, Suite C
Columbia, MO 65203
Telephone: (573) 875-8911
Fax: (573) 875-8902
Please make all checks payable to:
NATIONAL FEDERATION OF THE BLIND
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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.
New Diabetes Resource List
The Diabetes Action Network of the National Federation of the Blind will soon
offer the 2001 edition of Diabetes Resources: Equipment, Services and Information,
our 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 will contain the following subject categories: General and Miscellaneous,
Insulin Measurement Devices, 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, Distributors of Diabetes
Equipment and Supplies, and Medication Assistance.
Blind diabetics can and do accurately draw up insulin, monitor blood glucose,
and perform the other tasks of independent self?management. By using alternative
techniques and products, they 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 will cost $5 per copy,
and will be available in Braille, large print, and audiocassette (recorded at
15/16 IPS for the blind). Available July 30, 2001. 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
8am to 5pm Eastern time.
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, 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 print), and instructions
on audiocassette. The meter (catalog #2030802) 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.
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 with 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.
Save Your Skin
Lantiseptic is a line of skin care products of interest to diabetics. The line
includes a cream and a skin protectant, both appropriate for the dry skin diabetics
can face. The cream is especially appropriate for dry feet, and has been clinically
tested as appropriate for diabetic foot care.
Both products come in tube or jar, and FREE SAMPLES ARE AVAILABLE. For information,
or to obtain a free sample, contact: Summit Industries, Inc., PO Box 7329, Marietta,
GA 30065; telephone: 1-800-241-6996. For a free sample, telephone: 1-800-347-2456.
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: www.dsmedical.com
Insulin Pumps and Supplies
MiniMed is one of the worlds 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
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.
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
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: [email protected]
Reading Machine
There are many ways to cope with the problems loss of vision brings to reading.
There are optical reading machines, where you scan a printed page into computer
memory, from where it is then read by a synthesized voice. Now there is another
alternative: the L&H MagniReader.
This device combines CCTV magnification with an optical reader.
The MagniReader magnifies text or graphics up to 36x on screen, and reads it
aloud, in a clear voice. You can use either or both modes.
To find out more about this reading machine, contact: Lernout
and Hauspie Speech Products USA, Inc., Kurzweil Educational Systems Group, 52
Third Avenue, Burlington, MA 01803; telephone: 1-800-894-5374; website: http://www.lhsl.com/educationad/votd
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.
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 software or hardware, check them out: Freedom Scientific; telephone:
1-800-444-4443; website: www.freedomscientific.com
Diabetic Products
Health Care Products makes many over-the-counter medications and supplements
for diabetics, including DiabetiSweet sugar substitute and Diabetic Tussin sugar-free
cough syrup. Find these products in the diabetic section of Wal-Mart, Rite Aid,
Walgreens, K-Mart, and other retailers. For information, contact: Health Care
Products, 369 Bayview Avenue, Amityville NY 11701; telephone: 1-800-899-3116;
website: http://www.diabeticproducts.com
Nutrition Supplement
Your insulin or oral diabetes medications are only part of your diabetes self-management.
Although food supplements do not replace your medications, and the U.S. Food
and Drug Administration has not evaluated their efficacy to prevent or treat
any disease, a healthy diet is important, and research is continuing on the
role specific supplements may play in controlling diabetes. AlphaBetic Multi-Vitamin
Supplement is a food supplement formulated for the special needs of diabetics.
A blend of vitamins, antioxidants, and minerals, is available in sugar-free
caplets. Contact: Abkit, Inc., New York, NY 10128; telephone: 1-800-226-6227;
website http://www.alphabetic.com
Legal Advice
Rezulin was a diabetes medication recently removed from the market. A number
of users suffered liver damage, and these individuals may be entitled to financial
compensation. Nevada residents who believe they have been harmed by Rezulin
use should promptly contact the law firm of Harrison, Kemp, and Jones, CHTD;
telephone: (702) 385-6000, for a free case assessment.
Unique Glucometer
There are many fine, accurate glucose monitors out there, but
the Bayer Glucometer Dex is unique. Other monitors require you to handle a new
test strip each time, and many require a "hanging drop of blood."
Some meters must even be held upright, and dead still. Not the Dex. Drop in
a 10-test cartridge, and the compact, convenient Dex, a favorite of diabetic
athletes, sets itself. Load it in the morning - test all day - without a pocketful
of gear.
The Dex is widely available now, and probably on your pharmacy
shelf. For information, telephone: 1-800-445-5901; or find it on the web at:
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
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TECHNIQUE KEEPS DIABETIC CHILDREN OUT OF EMERGENCY
ROOM
by Lori Williams
Baylor College of Medicine
Teaching parents a fresh approach to an old medical problem
is helping kids with diabetes stay out of the emergency room. Developed by doctors
at Baylor College of Medicine, in Houston, Texas, the approach, called mini?dose
glucagon rescue, puts control back into the hands of parents.
"Insulin and diet can keep the blood sugar levels of kids with insulin?dependent
diabetes under control most of the time," said Dr. Morey Haymond, a Baylor
professor of pediatrics and director of the diabetes clinic at Texas Children's
Hospital.
"But, when a child can't eat, due to a common illness like the stomach
flu, or won't eat as a form of rebellion, problems with hypoglycemia, or low
blood sugar, can develop. Unfortunately, at that point, parents' options have
been fairly limited and unattractive," said Haymond, also a researcher
at the USDA/ARS Children's Nutrition Research Center at Baylor.
According to Haymond, when an insulin?dependent diabetic child refuses food
or can't eat, parents naturally worry about hypoglycemia. As a result, they
often believe they must force food on a sick or reluctant child, make a trip
to the doctor or emergency room for assistance, or give their child a shot of
a potent hormone called glucagon, which has the opposite effect of insulin.
"Parents often think of glucagon as a last resort or emergency measure
to prevent convulsions when blood sugar levels get dangerously low,"he
said. "The amount normally given must be administered with a 'real' shot
into muscle tissue, rather than under the skin, as is the case for insulin.
It can also cause nausea. Because of this, many parents prefer a trip to the
ER."
The mini?dose glucagon rescue technique sidesteps these problems
by using a dilute solution of glucagon that can be administered just like insulin.
Parents can also monitor the effect of the glucagon using the same sampling
technique used to test for blood sugar when insulin is given.
"This type of shot is much more comfortable for parents and the child,"
he said. "The dilute solution does not cause nausea, so parents might use
it early in the course of a child's illness, saving them and their diabetic
children undue conflict and trips to the ER."
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