2012-05-08-Diabetes
Seminars@Hadley
How Diabetes Saved My Life
Presented by
Urban Miyares
Moderated by
Larry Muffett
May 8, 2012
Larry Muffett
Welcome to Seminars@Hadley. My name is Larry
Muffett. I am a member of Hadley’s seminar team and
I also work in curricular affairs here at the Hadley
School for the Blind. Today’s provocative topic is
‘How Diabetes Saved My Life’. Your presenter is a
familiar one to those of you that have been involved
with Seminars@Hadley in the past, Urban Miyares.
Urban is a nationally-renowned speaker,
entrepreneur, and athlete and a fascinating speaker,
one that I find particularly inspiring. So today we are
going to hear Urban’s interesting and inspiring take on
dealing with diabetes for over four decades. So, let
me introduce Urban and I am going to turn the
microphone over to him and let him get started.
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Urban Miyares
Well thank you Larry and it’s a pleasure to once again
be on Hadley’s seminar program. For those of you
who have heard me before or know me, hello again! I
am going to talk about how diabetes saved my life
and give you a little bit of history on it but before I start
we had an early question and that was the
background of my name, Urban, as well as my
surname, Miyares.
I’ll start with my last name first, Miyares. My father is
Cuban so it’s a Spanish last name, Miyares, from
Cuba. And just to let you know my mother’s
background – my mother is German and Russian. So
I guess I am kind of a Heinz 57 as they say, in a way.
The name Urban – no I’m not a descendant of Pope
Urban the second. He is the Pope by the way who
started the Crusades and brought celibacy to the
church. I have been called a troublemaker so maybe
there is some relationship.
But the name Urban – my father’s name was Urban
and it goes back, my son’s name is Urban – when I
asked my uncle, who is in his nineties, “I’d like to do a
background on our family name and our heritage” all
he said is “You don’t want to know, don’t bother.” So
we’ll leave it at that. I am Urban Miyares and I am the
second Urban that I can document – maybe there are
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others in our family background – and my son is the
third.
Ok, back to the topic ‘How Diabetes Saved My Life’.
You know we all have a story – if you have diabetes
or know someone – we all have a story about how our
diabetes was diagnosed, so please bear with me
while I tell you my story. Growing up in New York City,
a healthy young man, I got out of high school and
started working, engaged to a young lady I knew
since I was thirteen.
I got a notice from Uncle Sam in 1967 saying he
wanted me in the U.S. Army. And with that I was
inducted into the service. And, by the way, during
basic training they gave me a weekend pass allowing
me to fly from Fort Jackson, South Carolina back to
New York City to marry my wife. I flew in on Friday,
got the blood test, Saturday we got married, and
Sunday I was back on the base.
So we had a distant early marriage with no
honeymoon and then I got a Christmas break and I
came home for four or five days, and then back on the
base for further training before I got my orders in early
spring to go to Vietnam. I came home and that’s when
we had our honeymoon. There is a snapshot. In the
first two years of marriage we were together two
weeks.
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Anyway, I went to Vietnam and soon became a squad
leader and a platoon leader with the 9th infantry
division. And while going on battlefield operations
back and forth, you know, you go from base camp out
sometimes two or three days at a time. And then
coming back, I started feeling sick with dizziness and
blurred vision, and then vomiting soon started. So
we’d go on an operation and I’d come back and I went
to sick hall.
And the first time at sick hall they diagnosed the heat,
they found out I didn’t have malaria, and said “You’re
ok, go back out” and gave me some more salt tablets
to take. We’d go out on an operation and come back,
and I’m just getting sicker and sicker. I couldn’t hold
down any food, just vomiting all the time. We were in
south Vietnam, 9th infantry division, and going through
the rice paddies was common. I used to like going
through the rice paddies because all of a sudden I’d
have to go to the bathroom – I’d have to go to the
bathroom all the time – and a great place to pee was
in rice paddies, like peeing in a pool I guess.
But I was getting sick. I was really sick and leading
men into combat, and had blurred vision and I could
sleep at any time; just not feeling well, almost as if I
had the flu. I’d come back and the next diagnosis was
battle fatigue. They told me “Take 24 hours off and
you’ll be fine for duty again.” And that happened and
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during that rest period I am still sick, just not doing
well. And then we went on a third operation and the
same thing happened, and coming back from that
next operation – all of this was in a two week period –
that third diagnosis at sick hall they said I had peptic
ulcers and gave me Maalox and shipped me out in a
field again saying I’d be fine for duty.
Right after that third diagnosis the company
commander came in and said that if I didn’t stop trying
to get out of duty, malingering, they’d bust me down
to a private. I’m 20 years of age, not even shaving
yet, and leading men into combat, and sick as a dog. I
really thought I was going to die. Something was up.
When you go into combat you almost can tell who is
going to make it and who isn’t. And I really thought I
wasn’t going to make it back home to my wife again.
A lot of action was going on at the time. For any of
you out there that were in the military, I was one of
those ‘shake and bake’ sergeants. I went through
special training to be bumped up the ranks to platoon
sergeant because so many sergeants were getting
killed and wounded at that time in 1967-68. And we
went on this battlefield operation on this village with a
number of other platoons and I remember walking on
the rice paddy. I couldn’t carry the machine gun
ammunition, the M-16; my platoon was carrying it for
me, carrying my weight. I was barely able to walk and
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as we were approaching the village I hear the
thumping sound of mortars coming over head.
I heard someone yell – I don’t know what they said –
the machine gun opened up, screaming and yelling
“Gun fire!” and next thing I remember was falling face
first into the water of the rice paddy. Two days later I
woke up in a military hospital in Saigon, South
Vietnam with tubes coming out all over me and a
nurse came by and said “Sarge, you’ll be ok,
someone will tell you what happened.” I had no idea
what happened.
I had my legs. I couldn’t find any patches on my arms,
although my left side was badly bruised from my
shoulder all the way down to my legs. Other than that
I felt ok, somewhat, a little bit better than I did
previously. And then the doctors came in and told me
I had diabetes. What had happened was I had
diabetes while going to sick hall and they didn’t
diagnose it, and during that battlefield operation I
went into a diabetic coma.
I later found out while I was in Saigon – someone
from my company came over to check on me – that
they thought I was dead. Everybody in my platoon got
killed and when the backup platoon came to do what’s
called ‘sweep an area’ to get all of the casualties and
dead, they thought I was dead and threw me in a
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body bag where I stayed for two days until a medic at
base camp – Brian Leet is his name is and he lives in
Cambridge, Minnesota; if anybody out there is from
Minnesota please look up Brian Leet and his wife
Karen – while he was unzippering body bags to put a
toe tag in all the dead soldiers, he unzippered my
bag, recognized I was a different color, felt a pulse,
and with another combat medic picked me up and put
me on a helicopter which evidently flew me to Saigon
military hospital.
Looking back on the records and all of that it looks
like I was in a body bag for two days before Brian
opened the bag up. And still questions – Brian has the
answer about why I am still alive but – it’s just
amazing to me. Frankly, I shouldn’t even be here
talking to you right now. Diabetes saved my life
otherwise I would have been with the rest of my
platoon.
Well, I had never heard the word diabetes before and
from Saigon what they did was ship me to Japan
where I spent two weeks trying to get my diabetes
under control. I still had blurred vision a little bit, and
was still feeling quite sick. After two weeks when they
thought I was healthy enough they flew me to Valley
Forge, Pennsylvania hospital where I stayed for the
next six months.
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In that two weeks of sick hall while on active duty in
Vietnam, I had lost 67 lbs due to diabetes, that’s how
dehydrated and how severe… I don’t even remember
about my blood sugar, what they told me it was,
because I never heard the word diabetes before. No
one in my family had it. I just thought it was something
where you give me a pill or a shot and I get back to
duty. Next thing I know I am in Japan and getting
ready to be shipped home.
Well, while at the VA hospital – actually it was a Navy
hospital at Valley Forge, Pennsylvania – in
rehabilitation I am taking 8, 10, 12 shots a day after
they took the IV out. My average dosage of insulin
was about 400, 600, 800 units a day of insulin. You’ve
got to remember, we’re talking 1968 now. And back
then we had U40, U80, U100 insulin, different types of
insulin based on its strength. It started out with U40
and a little bit later they advanced on.
We used to have glass syringes that we had to boil,
not these disposable needles and syringes. As a
matter of fact, our needles back then – for those of
you who have had diabetes for 35 years or longer you
are probably laughing right now remembering all of
this – but we used to have to sharpen our needles
with an Emery board. It was barbaric how we took
control.
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They put me on a 700 calorie diet, figuring that would
help me because they couldn’t control my blood
sugars. That’s malnutrition, 700 calories. I remember
them coming in one morning with these little boxes of
cereal, dry cereal in a box, and I asked them “Where
is the milk?” and they said “You have to put water in it
if you want it wet.” That’s how many calories I was
allowed. Half a slice of bread, toasted, dry. It was not
much fun back then. That was when we had
saccharin and all those sugar-free types of food
products which I was rapidly introduced to.
My wife came to visit me in Valley Forge and we sat
down with the doctor and I said “What’s going on?
How does my life look?” He said “At best, you are
lucky to have 20 years left to live.” So this is the
prognosis I had with diabetes. They didn’t know that
much about the disease back then, unlike today.
Wow, the advancements they’re doing! That’s the
main reason why I am still here, with diabetes,
although a number of issues have cropped up since.
Within six months of diagnosis I already had
neuropathy in my legs; I couldn’t feel my feet. And the
doctors back then automatically said “Oh that’s part of
diabetes. You’ve got diabetic neuropathy, peripheral
neuropathy.” Later on another diagnosis came out
and I’ll explain that in a second. So I get out and have
blurred vision. I could drive ok but I just couldn’t see
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the road signs. So what they would do is prescribe
glasses to me when probably I should have had some
laser but they didn’t have laser surgery back then. So
it was a completely different time.
Not only did I have diabetes, I have what is now
called PTSD which was undiagnosed then. So I came
back to a different world with a lot of anger and guilt. If
you listen to Hadley’s seminar program, I’ve done a
previous seminar on PTSD, depression and success.
And you’ll get a little bit of feeling about the mental
state I was in when I came back, including trying to
commit suicide.
But my wife got pregnant pretty quickly so I guess I
still had some good working parts, and because of our
unborn child, who was a son and is still healthy today,
I didn’t commit suicide. I seriously thought of it twice.
More than think about it – actually prepared and
planned how I was going to do it – and just seeing my
wife pregnant and then our son when he was born is
what prevented me from committing suicide. Much
like you read about in the papers today with the
veterans coming back.
You know, coming back and losing all of your platoon,
not being able to finish your mission, the military
training, all of this had to do with it. Anyway, I tried to
get work and I got fired from my very first job, telling
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me that they are not going to have any needle-killing,
baby-toting Vietnam veteran working for their
company and fired me. I was a trainee at a Wall street
firm at the time. And with that I started a business and
now, 44 years later, I am still in business.
I’ve owned 23 businesses in those 44 years and of
course with Hadley, I’m most excited about the
Hadley entrepreneur program and the blinded
veterans initiative which I hope you all will investigate
and seriously look at. It’s an exciting program where I
share my 44 years of being a blinded veteran with
diabetes and having a number of other medical
conditions, including being total blind like I am sure
some of you are.
So anyway, a little bit more about the diabetes. Back
then we didn’t have A1c blood tests and we didn’t
have a glucose test meter in 1968-69. We used to test
our blood sugars with a urine sample, which was so
inaccurate. And I am still taking 6, 8, 10 shots a day
and frankly, not in good control. My eyesight started
getting worse but I continued in business no matter
how sick I was and had a number of business failures,
but at least business allowed me the freedom to take
off when I was sick – actually close my business
when I didn’t feel well – and I kept on moving forward.
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By the way, all this time, I am considered totally
disabled by the Department of Veteran’s Affairs and
never even knew. I never applied for benefits until
1977 when I had my first real big success, a multimillion dollar restaurant business. I’m legally blind at
this time and other challenges – kidney disease –
cropped up within five years. Impotency followed
within five years. Within five years of diagnosis I was
already getting the symptoms and complications of
neuropathy, kidney disease, eyesight problems
sooner than should be.
And then that word ‘agent orange’ came out. That
was a defoliant used during the Vietnam War and in
Korea too, that basically killed the leaves off of trees
so that snipers couldn’t hide up in the trees. And then
at our base camps they would spray agent orange
around the perimeters of our base camps so it would
kill all the grass and the enemy couldn’t sneak up
through the tall elephant grass which surrounded
many of the base camps. They couldn’t sneak up at
night time and plant bombs, or snipers get closer to
shoot us when we were walking around in the
compound.
Diabetes, Type II diabetes, is one of the service
connection disabilities for any veteran who served in
the military, in Vietnam as well as those who served
on certain ships, even though they might not have
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touched land in Vietnam, if you served on a ship
during the Vietnam conflict, which was offshore. The
Veteran’s Administration has a ship’s list and I believe
there are 160-some ships now in that list. You are
entitled to service connection with your Type II
diabetes.
I have Type I diabetes, and with the eyesight issues
the laser – I had the early years of laser and my eyes
didn’t react well to laser – after a laser treatment in
1984 I came out of that laser treatment totally blind.
They later did a fluorescein test which checks your
optic nerves and found out I had optic neuropathy
also. I had leg neuropathy, peripheral neuropathy.
Agent orange causes peripheral neuropathy, maybe
that’s the reason I got it so early within six months of
diagnosis of diabetes, not ten or twelve years later
like so many others who have gotten leg neuropathy
or numbness of the legs.
But my eyesight also had neuropathy and a lot of the
eye doctors strongly say that I probably had optic
neuropathy when I came back from Vietnam from
spraying. That’s why I had the blurred vision. And with
the diabetes retinopathy or diabetic retinopathy
combined, that’s why I am total blind. I have had a
number of laser treatments but the main issue in my
eyesight loss is no blood in my optic nerves.
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Let me give you an overall medical condition of me
with diabetes. I am total blind, as I said. I am hard of
hearing; I wear hearing aids in both ears. I’ve had ear
damage from explosions in Vietnam, however, with
diabetes it’s now been proven that many people with
diabetes also get diminished hearing. Interestingly,
women with diabetes supposedly get it sooner than
men do, so that thing about men having selective
hearing might hold true for the women too. Anyway, I
am hard of hearing.
When I came back from Vietnam I stuttered a lot. I
went to Toastmasters to stop that. I get tumors in my
body. I had a tumor in my thyroid and Vietnam
veterans are – they hopefully are checking it right now
– thyroid and throat cancer is prevalent among
Vietnam veterans regardless if they are smokers or
not. They removed my thyroid.
I’ve had a stroke. I have gastroparesis. For those that
have had diabetes for a while, actually it’s a form of
neuropathy of the intestines where your body doesn’t
process food properly or well enough. Peripheral
neuropathy in my legs. I’ve had a kidney transplant,
which originally was thought to be diabetes but the
doctors are convinced now that also was agent
orange. I have a few other… I’m probably forgetting a
couple of other medical issues. But anyway, I kept on
pressing through it and regarding the neuropathy or
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the numbness in my legs, I always walked and six
years ago I went in to the podiatrist to have an
ingrown toe nail cut out and I actually felt them, it hurt.
So they went and had a nerve conduction test done
on me, the Veteran’s Administration. That’s where
they stick needles in your legs and up and down your
back and they shoot electricity through your system to
measure how much conduction in your nerves, how
functional they are. I went from 90% nerve damage
from the waist down to less than 10% and they don’t
know why.
So I am now in a study and the latest theory by the
doctors is that the reason my neuropathy has
reversed – the first time in 30-plus years; it was 38
years at the time since I had felt my feet when I
started feeling them again – but the theory is that
when they did the kidney transplant the new kidney
went in and flushed out all the agent orange or toxins
in my system and allowed the nerves to regenerate.
And of course I have a different theory and that’s
dealing with Starbucks coffee. I went from a grande to
a vente at the same time. So they have their theory
and I have my theory, and I am sticking to my theory.
I like it better, it tastes better, and I enjoy it more.
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Larry Muffett
Speaking of that, it might be an opportunity for you to
get a sip of coffee there and see if we have any
questions from the audience. Anyone out there have
some questions for Urban at this point?
Caller
Urban, are you pumping or how are you doing your
insulin delivery?
Urban Miyares
Thanks so much, great question. I am a
spokesperson for Johnson & Johnson Company’s
Animas Corporation, which is an insulin pump. I was
the first blinded veteran ever to receive an insulin
pump, having been on an insulin pump since 1996. I
use the Animas pump now and the reason I do is
because I’m quite active in sports and the Animas
pump has never given me a problem. I’ve tried other
pumps and they break down on me, something
always has happened with them but I’ve been on the
Animas pump since 2005 when I crossed the Pacific
ocean in a sailboat. I was a skipper on a first crew of
sailors with severe disabilities ever to race in a transPacific yacht race from Los Angeles to Hawaii.
My insulin dosage right now – I was telling you I used
hundreds of units before – my insulin dosage right
now averages between 26 units and 36 units a day. I
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am extremely active, I am a business man, I am a
consultant with Hadley School, and I run a charity. I
have a seeing eye dog and my last dog Duchess had
1.2 million air miles in ten years of work, so that gives
you an idea how much I travel. So the insulin pump
has been a tremendous asset to me.
I say the three greatest inventions – actually should
say four greatest inventions – ever for diabetes –
Number one, of course, is insulin whether you have
Type I or Type II. They’re finding out now more and
more diabetics with Type II should be on insulin and
will be on insulin. Second one is the glucose test
meter where you can test your blood sugars at will.
You just take a little prick in your finger and a drop of
blood comes out and you have audible – where it
reads out loud – glucose level at that time. The third
great invention is the A1c blood test which they didn’t
have in the ’60s and ‘70s, and this is a blood test that
tells you what your average blood sugar levels are
over 30 or 60 day periods; 90 days in some cases.
And the last one is the insulin pump. It gives me so
much more freedom and flexibility. A secret that I use,
something that I’ve learned about my body – and
each one of us is different with diabetes so what
works best for me may not work for you – if I’m going
to have a meal, like today we had lunch, I think they
call it a Chinese salad or Asian salad which I knew
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had a little bit of sweetness in it, I took two units
before my meal and then an hour after my meal I take
another test and in this case I only needed a half a
unit. So my whole lunch only took 2.5 units of insulin.
So what I do as a control method is I only take half of
the insulin I need, take the blood test an hour or two
hours later – and of course after the gastroparesis I
process foods a little differently, your stomach does,
and so if I have pasta sometimes I have to take that
blood test three hours later because it takes longer for
my system to absorb the nutrients and calories and so
forth. And then I supplement. I use short-acting
NovoLog insulin in my insulin pump so that I cover
myself after it. So my blood sugar afterwards might be
220 or 240 an hour or two hours after a meal but then
I quickly cover it.
And by the way, the A1c, which is your average blood
sugar test, everybody should know what their A1c
blood level is and get that test done more than once a
year. My A1cs run between 6.0 and 6.3. Basically, if
you are at a seven or higher – well a seven means
that your average blood sugars are at 150, which is
tolerable but really you could do a little bit better – but
if you have an A1c at 8, 9, 11, 12 – and by the way,
most people in the country, especially with Type II
diabetes, have an A1c over 10. You really need to get
more aggressive with your diabetes control.
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Larry Muffett
I’d like to jump in here. We’ve got a question in the
text box and we have someone that wants to know
“Can you tell me when blood sugar drops can one do
things which he or she would not do otherwise?”
Urban Miyares
Great question - when your blood sugar drops, should
you do things you wouldn’t do otherwise? For you
blind people, don’t drive, that’s the first thing I will tell
you. Really, you’ve got to stop what you are doing
and get your blood sugar up. I can function pretty
good in the upper 80s, you know 87 – 100 range.
When I get below that I physically shouldn’t do
anything. And if I get 60 or lower – 60 is a danger
warning for me – if I get a 58 or 45, I stop everything I
am doing and know that it is going to take me at least
ten or fifteen minutes to get my blood sugar up to a
comfortable level, especially if you are doing any
exercise. Don’t do it.
Blood sugars will bounce around and the idea is to try
to minimize how high or high low they bounce, so that
if you go up to 200 don’t drop to 40, or if you are at 40
don’t overeat to get your blood sugar up quick. We all
know that you get hungry as heck when you get low
blood sugar. An hour later you are reading 300 or 400
or higher. You’ve got to try to avoid those. Do things
in incremental steps.
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But whatever you do, stop it, and that includes getting
off the computer by the way or texting or whatever;
people are now using iPhones and all that. Really,
stop what you are doing and just take a breather.
Meditate or something like that, get something in you.
I tend to like milk or orange juice. Raisins are my
travel kit – I always carry raisins with me. I can always
take three or four or a group of raisins. I know one
box of raisins will raise my blood sugar 150.
Larry Muffett
David has got some interesting questions here. He
wants to know “Do they have a glucometer that uses
infrared to test blood by simply shooting a beam of
light into your finger?” He’s heard about this, and he
also wants to know “Do they have insulin in the form
of nose spray at this time?”
Urban Miyares
Great questions David, you must have been reading
up on the latest science. Both those areas they are
working on now. There are a lot of studies and FDA
trials going on. There are a number of continuous
glucometers, or insulin pumps I mean, which measure
your blood sugar right away and then give you the
insulin. Unfortunately most of this stuff, when it comes
out, it’s not for us who are blind. There are some out
right now but we can’t use them because there is no
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voice or sound output on them where we can
comfortable measure it.
The insulin pump is an example where we’ll get a
beeping sound and from that you can memorize or tell
what’s happening on the insulin pump in most cases,
based on the beeps or how the pump is reacting. But
with those other things they’re not adaptable. I guess
they are making them for the general market first, you
know, with diabetes growing the way it is.
They say over 28 million – it’s probably over 30 million
now that have diabetes because that study was over
a year and a half ago when it came out – 26.8 or 26.4
million and it’s rapidly increasing in the number of
people. It used to be an exclusive club 40 years ago
to get diabetes, now everybody is joining it. I don’t
understand.
But yes, there is some wonderful new technology
coming out and if you had diabetes today it couldn’t
be a better time to have it. With all of the
pharmaceutical drugs, the medical devices these
companies are doing, it’s making the disease or
managing it so much easier and it shouldn’t be a
barrier in your life. And if you do have complications,
in many cases you could reverse or complement
those complications so that you mitigate their effects
so much more by good management and control.
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Larry Muffett
Donna has got a follow-up to that: “Have you heard of
a new invention called a PumpMate?” It isn’t
approved for sale yet, she says, but it sounds great
for blind pump users.
Urban Miyares
No Donna, I haven’t heard of that one. Oh, the other
question was the nasal spray – I’ve been following
that technology over the years and it originally started
in Israel where the research was. It was a company in
Israel doing it about ten to fifteen years ago and that
nasal spray, I think that they’ve done it but it hasn’t
been that effective yet. The FDA has certain
guidelines, it has to have a certain percentage of
success and I don’t think either the self-monitoring
insulin pump or the nasal spray has yet achieved FDA
approval. I could be wrong on that, but if it has been
approved it’s probably been in the last 30 or 60 days.
I haven’t heard about the PumpMate and I don’t know
what that is related to.
Larry Muffett
Sharon has a question: “Are there any herbal
supplements that help?”
Urban Miyares
Herbal supplements – first of all we all should be
taking multivitamins. The challenge with herbal
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supplements, if you have no complications of diabetes
– again, always check with your doctor first on herbal
supplements because they are getting well-versed
about the benefits of herbal supplements – but you
have got to be very careful if you have any
complications or are prone to any. For example, I had
a kidney transplant. I cannot take any herbal
supplements whatsoever. A number of previous organ
recipients, kidney recipients, have taken herbal
supplements and had terrible effects of it, actually
going back on dialysis, killing their kidney.
It’s a tender balancing act we’re doing all the time. So
please check with your doctor especially on herbal
supplements and all these things like ‘Cure your
diabetes.’ You’ll never get rid of diabetes. You might
lose weight and not have to take medications
anymore, but you’ll still have diabetes. Just add some
weight on you and you’ll find out what happens, as an
example. Be careful with herbal supplements.
For some people they are beneficial and work
wonderful. I personally have not used them, even in
my competitive sports I did not go into herbal
supplements whatsoever. You know, heavy doses of
Vitamin K gives you energy, as an example, and
certain herbal substances help, but again, talk with
your doctor on any one of these herbal supplements if
you are using them or plan to.
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Larry Muffett
Donna gave us a little follow-up on the PumpMate.
She says the pump mate speaks all of the menu
items and is a hand-held remote.
Urban Miyares
Oh Donna I love you if it’s true, let me know about
that. I will call Animas up right away and find out from
them.
Larry Muffett
She’s got the website: www.pump-mate.com
Urban Miyares
I think I can remember that and so could everybody
else that uses a pump. Thank you so much Donna.
Larry Muffett
Another question from the text box: “Is there such a
thing as normal blood sugar level that can be applied
to everyone?”
Urban Miyares
Well, that is an open-ended question. It would depend
on your activity. They say what a person without
diabetes should have as normal blood sugar before
eating, after eating, and all. But for those of us with
diabetes, or what they call pre-diabetes – it’s like
being pre-pregnant as far as I’m concerned – if you
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have a blood sugar that is ranging in the 120 – 140
range, you may be recognized as being pre-diabetic.
There are people pre-diabetic as well as those that
are hypoglycemic that have low blood sugars
constantly and need sugar. The statistics I believe
medically are that they, sooner or later, will develop
diabetes, often Type II diabetes. So it’s a rough one.
I hope you all realize the difference between Type I
and Type II diabetes. In simple terms, it’s two different
diseases that have the same outcome: high blood
sugar if not controlled. Type II diabetics generally, and
this is not a medical opinion it’s just a layman’s
interpretation, is that your body is just not
metabolizing the insulin your body is producing
already. Often that comes with ageing, it comes with
weight, and other reasons.
Type I diabetes is when the pancreas does not
produce insulin so you need to supplement it with
insulin, the insulin that we take with injections or the
insulin pump. It’s a simple way of determining the
difference between Type II and Type I. Type II, again,
your body is producing insulin, you’re just not
metabolizing it properly; Type I, your body is not
producing any insulin or so little insulin at the time that
it is not effective in your system. So those are the two
different types and there are different causes for both
of them.
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You can get Type II diabetes due to being pregnant,
gestation diabetes. You can get Type II diabetes due
to medications that you take. If you know anybody
that takes a lot of prednisone, as an example, they
probably have chemical-induced or Type II diabetes.
So there are all different ways or types of substances
– in my case it was possibly chemically-induced with
agent orange, as well as other Vietnam and Korean
war veterans that have Type II diabetes – or triggered
at a sooner date.
Type II diabetes tends to be more hereditary than
Type I. There is a hereditary pattern in Type I
diabetes but it is more defined in Type II diabetics
than Type I. Interestingly, Type I diabetics, their
ancestry tends to be Scandinavian or Norwegian,
northern European heritage where Type II can be
everybody today. But those that have Asian, AfricanAmerican, native American heritage tend to get Type
II in greater numbers than ever before. And of course
they are attributing our diet and lack of exercise but to
me that is only a part of the reason.
Larry Muffett
I am going to shoot you this question: I’ve heard a
little bit when you and I have spoken in the past but I
think people would find it interesting if you talk a little
bit about how this guy from New York City got
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involved with skiing, which you’re quite good at, and
how does that all fit into the diabetes and adjustments
you’ve had to make in that sort of strenuous athletic
activity?
Urban Miyares
I am so sorry you asked that question. Why would a
blind guy that can’t feel his legs and can’t see, ski
down a mountain? I don’t know. In 1987 the
Department of Veteran’s Affairs had their very first
winter sports clinic for disabled veterans in Grand
Junction, Colorado and they thought it would be a
good idea if I put on a pair of skis and went down the
mountain. Now here is a veteran with post-traumatic
stress disorder, he can’t see, can’t feel his legs, and
they want him to go down the mountain. Anyway, I
went.
I went in 1987 and hated it. I don’t like the cold, I had
never been on a pair of skis in my life. I live in San
Diego today because I love the ocean and warm
weather. I did it anyway. My wife said that it seemed
like I was having fun and she wanted to go the next
year, so I went in 1988, and that’s when they said
“You know, you’re pretty good, you should think about
racing.”
Now, in racing, B1 is the total blind division. By the
way there are three divisions for anybody that is in
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sports that is blind: B1, B2 and B3. B1 is total blind,
B2 is light and image perception and B3 is legal
blindness, 20 over 200 or greater. Some of the people
in the B3 category I know actually drive to the ski
events, that’s how well they can see. But in B1, you
wear a helmet – in all of the skiing you wear a helmet
– they have duct tape across your goggles so there is
no peeking. If you’re in total blind you are supposed to
be total blind. I wear a radio because I am hard of
hearing; it’s built into my helmet.
And I have a ski guide that skis alongside of me or
behind me who yells out “Left turn! Right turn! Go, go,
go… stop.” You know, simple one-syllable word
expressions. You wear that bib on you that says ‘Blind
Skier’ which I say is called ‘target’, and then because
of my legs – I’ve actually skied on a broken leg and
didn’t know it. That’s when I had the neuropathy – I
won three gold medals against a Russian team by
skiing on a broken leg in 1990 at Breckenridge
Colorado.
But I also, since then, I’ve had leg braces from my
boots all the way up to my hips to prevent legs
breaking, and then I use outriggers, which are the
Canadian crutch. That’s a crutch that wraps around
your forearm and with your fist you grip a handle. You
might know someone that has that. At the end of each
one of these crutches, they put the first 15 inches of
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the front of the ski on the bottom of them. So actually
you are skiing with the two crutches in the snow. Each
has a little ski on it, and then you have your regular
skis on your legs and that’s called four-tracking
because you have four skis on the ground. I am
allowed to use that. It is supposed to slow you down.
Because of my leg damage in sports I am classified
as an LW1 as well as B1. I am classified based on my
leg disability also. I’ve been certified by doctors in that
area. So anyway, I took up skiing and in 1990 and
1991 I was ranked as the world’s fastest total blind
skier having been clocked on a race course at 63
miles an hour on a downhill run twice, going around
the turns at 63.
Now for those of you who know Mike May, Mike is
definitely the world’s fastest total blind skier, but Mike
did it – I believe in 1988 or 1987 and that was before
taped goggles and all but – Mike was total blind then
and he did it on a straight course down the mountain
and he’s been clocked at 65 miles an hour. So on the
race course I’ve been clocked at 63 and classified in
world champ and I retired in 1991 from skiing and
going to the Paralympics and all of that. Basically
because I had difficulty in finding ski guides, because
when I was at that level I had to pay my ski guides.
And I don’t like skiing. I’m just good at it. That’s it.
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They’ve asked me to do exhibitions and all and I’ll do
it on an intermediate or possibly a bunny slope, but
I’m not going to go down a mountain anymore. I’m a
blind guy! It helped me quite a bit with diabetes, by
the way, because when you get in competition you
really don’t know your body until you press it to its
limit. So if you are a marathon runner, if you are a
swimmer, if you do any physical exercise, you know
what blood sugars can do to you and how your body
reacts to it.
As a matter of fact, you could have a high blood
sugar, depending on your body and how it reacts to
diabetes – let’s say you have a 250 blood sugar. And
then you exercise, you run two miles, you take your
blood sugar right afterwards expecting an 80 or 90 but
it’s now 350. What happened? Our body does
completely the reverse. Each one of us is different. In
my case, anything over 220 blood sugar and my
blood sugar will go up. Your liver produces sugar, and
that’s what happens. And when it triggers to produce
more sugar is one of the reasons your blood sugars
go up.
The same thing happens with alcohol, if you have
alcohol. If you are into heavy athletics as a person
with diabetes, you definitely know that beer and all of
that… many athletes with diabetes will consume
certain alcoholic beverages. I know my doctor says
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“Have a glass of red wine a day” and he has diabetes
too. So, I follow doctor’s orders. It helps.
Larry Muffett
Jason has got an excellent question. He says his
three year old son has Type I and it seems that his
blood glucose increases when he gets excited about
visiting family or seeing his little girlfriend. “Is this
something you’ve experienced and, if so, how do we
prepare him for the teen years?”
Urban Miyares
Oh God bless you, I mean… children that are less
than a year old now are being diagnosed with
diabetes. By the way, Type I diabetes, which I am
sure your son has at three years of age – although it’s
possible he may have Type II, my guess is he has
Type II. Australia is an example that is running an
epidemic of Type I more so than anywhere else in the
world. The average ratio is about 90:10. Ninety
percent of those with diabetes have Type II and 10%
have Type I. In the United States there are about 3
million and something Americans with Type I diabetes
and your son is probably one of them, with me. I have
Type I also, as I said.
Yeah, adrenaline is another one of those items which
can increase blood sugars. This excitement and all is
going to be rough. I’m not in the medical profession,
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but only in working with kids, by the time he is maybe
five or seven that all might change. You are just going
to have to be careful with it, the finger sticks and …
the roughest years really are the adolescent years
with peer pressure and all that so try to get him to
juvenile diabetes camps when he is old enough to go
and get around other kids his age with diabetes. He is
going to have to learn about himself and his body; we
all do. At three years old I know it’s kind of rough. And
again, bless you for that. I always say the smartest
and the best-looking people are diabetics, so you
must have a smart, good-looking kid.
Larry Muffett
Scott has got a question: “Any suggestions for a Type
II who is struggling with long-term control
requirements? I slack off taking my meds after a few
weeks.”
Urban Miyares
Diabetes is a lifestyle. You might get away with a day,
a week, depending on what you are trying to get away
with, but it is going to catch up with you and when it
does catch up with you it can be vicious and hard. It is
a lifestyle. You are going to have to get into the
routine of it. You really should get with a diabetic
educator or someone in your area that can help you
with this and talk with you. If you have family support,
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get them educated too in diabetes control and
management.
You know the thing that upsets me the most is “You
can’t have that, you’re a diabetic.” Well, how the heck
do you know what I can have and can’t have? You
know 40 years ago you might have been right but
they just didn’t know either. So get other people
around you that support – whether they live in the
household with you or not – to at least understand
your diabetes. Or you bone up on the education of
diabetes.
A great organization to look at is ‘Taking Control of
Your Diabetes’ in Del Mar, California. Dr. Edelman
that heads this organization is my personal physician.
He has diabetes also. And the website is tcoyd.org
and hopefully they are in a city by you. I am often
asked to speak for them around the country. I know
they just came back from Hawaii. I didn’t speak on
that one though. And you could actually communicate
with the doctor and he’ll give you free advice, Dr.
Edelman. Check it out. Check their website out and
learn from them as well as the American Diabetes
Association and all the others.
For you, with the control and maintaining that and
taking the medications, get with a diabetic educator.
I’m sure they have a routine or way of doing it. I know
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what they are doing now with iPhones and all of that,
when you take your blood sugar or something like that
it goes into a computer and your doctor gets a notice
that you are too high or you’re too low and they call
you up right away. It’s amazing what they are doing
with technology.
Larry Muffett
Alice would like to know: “Have you written a book or
do you plan to write a book of your most interesting
and inspirational life?”
Urban Miyares
Well thank you. A lot of people have asked me to do
that. There is a gentleman in Boston, Chris Leach
who is writing my biography. He is the former editor of
Inc. Magazine. And he knows me. In my business
world I have been Inc.’s Entrepreneur of the Year,
SBA award winner. I’ve owned 23 businesses, I
believe I have mentioned, in the last 44 years so
business has been my way of better helping and
controlling my diabetes as well as supporting my
family. But thank you. I’d like to do it.
I am planning on writing a book on some of the
seminar topics I do related to business but those will
be short motivational or educational type of books.
But if Chris Leach doesn’t do that biography I am
going to hop on it and then it will probably be X-rated
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or R-rated or however they rate it because I’ve got
some wild stories that aren’t true.
Larry Muffett
Well I’ll certainly buy a copy just for that alone. Donna
would like to know: “Do you have any low blood sugar
unawareness?”
Urban Miyares
Donna, I don’t. That is one issue. I do not get
awareness, the sweating, of low blood sugars. I get
symptoms of it. If I am typing, I start spelling words
wrong. And as soon as I do that I take a blood test
and nine times out of ten, it’s of low blood sugar. And
it can be as low as 30, 40, or 50. I don’t run that many
low blood sugars.
When I run low blood sugars is when I try too
aggressively to get my A1c blood test below six. I’ve
been in 5.6 – 5.8 range with A1cs and really I’m not
that comfortable; I run too many lows. I am not there
to impress the doctors on how low my A1cs can get,
I’m just trying to stay healthy and productive.
Now, I work 80 to 90 hours a week, that’s my average
work week. So I have to be productive at all times.
But I don’t get the diabetic awareness, the sweats and
all of that any longer. On average I will take a blood
sugar test about ten times a day.
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Larry Muffett
She’s got a follow-up: “Have you been told to stay on
a low sugar, low sodium and low protein diet for your
diabetes and kidney disease?”
Urban Miyares
I don’t go that way and I don’t do carb counting; I
found carb counting quite difficult. With the low
protein, I had a kidney transplant and I need protein
now, whereas before the transplant – and I never
went on dialysis, that’s why they don’t believe it’s
diabetes-caused – I was diagnosed with end-stage
kidney disease in 1982, primed for dialysis in 1997
when I had the fistulas put in my arm to get ready for
dialysis, and I got my kidney transplant in 2004 having
never gone on dialysis.
And my kidney function was below 10% yet I was
asymptomatic; I couldn’t get any of the effects. They
said “Aren’t you tired at all?” I said “I work 80-90
hours a week. Isn’t everybody tired?” And so there
are a lot of questions. I personally think keeping up
with my health and eating – you know everybody says
eat everything in moderation and do everything in
moderation, well I am a disbeliever of that and I think
some things you have to do in extremes. If I see a
piece of apple pie and I want it, I’m going to have it,
damn it. Yes, I will cover it with the insulin pump and
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take an extra unit or two units and take an extra blood
test, but that apple pie sure went down good.
Larry Muffett
I’m going to turn the microphone loose here for a
second and see if we’ve got some people that want to
ask questions? If you’ve got questions for Urban and
you want to use your microphone, this is an
opportune time to do that. Certainly if you have
questions and you want to put them in the text box
you can still do that. But again I am going to open up
the microphone here and see if anybody wants to ask
some questions.
Caller
Urban, what kind of immunosuppressant protocol are
you on?
Urban Miyares
Ok, what sort of protocols for the immune system I am
on – With the kidney I take Prednisone, I take FK-506
– I forgot the other name for it – and I take…. I went
blank on the other one. Simvastatin, I think that‘s what
it is. So I take three different medications a day. For
those that know, my creatinine level is at 1.0. It runs
0.9 to 1.1 and my latest test a couple of weeks ago
was 1.0. So after having a kidney transplant since
2004 – I’m in my 8th year right now with my kidney
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transplant – I think my creatinine level is darn good,
and so do the doctors in that area.
I attribute the health to how well controlled I am with
my diabetes. It’s not the prescribed way, the
uniformed way I eat because nothing is routine with
me. I travel so much, different time zones. I do over a
hundred speaking engagements a year around the
country. So all of a sudden you’re doing a
presentation at 9 o’clock one night and you’re in a
time zone different than at home. You have to adjust
in that area and the only way I could do that was by
understanding my body.
My biggest weakness is when I get a cold or a fever
and then everything is out of whack. I often have to be
hospitalized and I don’t think that has happened in 15
or 20 years. I seldom get a cold. I get hoarse from
speaking so much and so many times. Sometimes I
will have three and four speaking engagements in one
day and I sure have sympathy with these singers that
do performances one after the other. But diabetes
really has not been an issue in my life, at least not
since the glucose meter, blood testing machine, and
the insulin pump.
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Larry Muffett
Ok, anyone else want to ask Urban a question?
We’ve got time for a few more. What’s your favorite
hobby when not working?
Urban Miyares
Sailing. Sailing is my favorite hobby; I sail as often as
I can. We have a free sailing program in San Diego if
any of you out there want to go sailing. It’s called
‘Challenged America’ and they have a website:
challengedamerica.org. As I said, we’ve sailed to
Hawaii with all disabled, including people with
diabetes. We just had a regatta in San Diego with a
number of people with diabetes. One young lady who
is visually-impaired and has diabetes – she has
retinopathy – did quite well in her race.
I just love sailing and water sports and it’s a great
passive way of exercising because in a sail boat your
body is always moving to keep balance with the boat.
We like to see people with 140 or 150 blood sugar
when they go sailing with us, those with diabetes, and
they often will come out at 80 or 90 after only an hour
or two of sailing. It’s an exercise that is quite passive.
I marvel at those with diabetes and those who are
blind especially who get into these exercises where
you sweat and you have to work. They are amazing.
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You know, if gravity doesn’t pull me, like in skiing, and
wind doesn’t push me, I am not doing it. I hate
exercise. I don’t know how you are but I just hate it.
I’ve got a dog. I’ve got a seeing eye dog guide and my
dog and I walk on average about three miles per day.
Starbucks is a mile and a half from my house so it
gives you an idea of how the three miles comes in.
We do that. It’s forced me to walk, and having a
working dog has been a tremendous blessing. I got
my first dog in 1992.
Larry Muffett
Avery would like to know your height and weight
statistics.
Urban Miyares
Ok, we’ll go there. I am 65 years of age. I am 5’10”
and I weigh – I’m probably lying right now – 184. I
think I weigh closer to 186 now, 188. On that, my
ideal weight is around 179 to 182. That’s when I feel
my strongest and with the most energy. I tried
dropping weight down to 170 to 172 and I’m just not
that comfortable. Then I have to go out and buy new
clothes and the whole routine. I like the weight I am
at. When I was skiing by the way I got up to 195 and
200 because I needed that extra weight for speed in
going downhill.
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Larry Muffett
I am going to turn the microphone over to the
audience here for a few seconds. We’re going to wrap
this up in a couple of minutes but we’ve got time for a
few more questions if anyone in the audience wants
to share those with Urban, let’s take this opportunity
before we wrap this up.
Caller
Is there a blood glucose monitor that you currently
prefer?
Urban Miyares
You know I use a couple of them including LifeScan
and Prodigy. It depends on whether I’m traveling or at
home. I think I have the LifeScan at home and
Prodigy when I travel right now because it’s quicker
and sound is louder with my hard of hearing. And it’s
a small little thing rather than the adapter with the
LifeScan. I think that LifeScan might have a new one
now – I’ve got to check with them – with audio.
Larry Muffett
Donna has a fascinating question here. Apparently
she saw the movie ‘Bucket List’ because she is
asking: “Is there anything you still want to do in your
life?”
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Urban Miyares
Ok, who told you Donna? Are you ready for this
everybody? I am now looking to buy a sailboat to sail
non-stop around the world by myself. Plans are to do
it in either September of 2013 or September of 2014
dependent on what type of boat I get and when I get
it. I am now shopping for a boat, preferably about 50
feet or longer.
Larry Muffett
Alright, Alexander is going to follow that up with “What
do you feel has been your biggest challenge because
of diabetes or vision loss?”
Urban Miyares
Good question. With diabetes, my biggest challenge
was to learn how to control my diabetes so that if for
some reason I got off kilter or a complication came up
– I had an infection on my foot or my hand – what
can I do to help with what doctors do? You know
doctors only see us a fraction of the time and diabetes
is something we have 24 hours a day. So we have to
be our own doctor in many cases and I had to learn a
long time ago. Especially in those early years, doctors
aren’t always right. And now I speak for doctors on
diabetes care and management. So my biggest
challenge with diabetes has been around that with the
personal control.
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The other issue is explaining to others that for some
reason I can’t do something because of diabetes.
They want me to help them lift something and I say
“My blood sugar is too low right now.” So it’s more
with the attitude that others might have about
diabetes, especially loved ones. With sight loss – and
we do this with Hadley on the entrepreneur program –
the advantages and disadvantages of having sight
loss; of having sight and not having sight in business.
The single biggest challenge with me is when I am in
a strange environment and I’m by myself and there is
no one around. The dog helps me tremendously in
that. I had to take a train from Chicago to Winnetka to
speak here with you today and I was on a train by
myself. The first time I’ve done that train ride.
Normally people drive me around or I have a driver all
the time. My biggest challenge with sight loss is in
that environment.
Of course, with sight loss, it used to be transportation
but after I became successful in business that
becomes a paid employee. Because my wife retired
when we sold our manufacturing company in 1985,
she reminds me every time she has to drive me that
she is not working anymore. But transportation, I
would guess overall, transportation is number one
because I always have to account for that and make
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accommodation for it, and then number two is being
in a strange environment.
And there’s the combination with diabetes and sight
loss. If you know your body, you know when things
aren’t going right and I have to excuse myself from
business meetings. It’s a great excuse by the way to
get out of meetings you don’t want to attend. Those
are the biggest challenges for me. And, of course,
finding my coffee cup. I am always losing my coffee
cup, even in the house.
Larry Muffett
Alright, regretfully we are going to have to start
wrapping this up but this has just been delightful. I
want to tell everyone that this seminar, like all of our
seminars, will be archived on the Hadley website and
it will be available then for your use anytime around
the clock. And also these days Hadley seminars are
made available as podcasts which you can download
to your computer or to your mobile device. If today’s
seminar has got you interested in hearing more from
Urban you can go into our seminar archives and listen
to things about post-traumatic stress syndrome, we’ve
got courses on there about diabetes, we’ve got
additional courses on there from the business
standpoint. On the seminar archives is our business
round-table that Urban presented for us and there is a
fascinating one-on-one interview with the Director of
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the Forsythe Center, Tom Babinszki and Urban that I
think you will find very interesting.
Urban and I want to thank you for your participation.
These questions were fantastic, they were very good,
they were right on point today and they really added a
lot to the value of the seminar. We value your
feedback. We just had a meeting with the seminars
team here recently where we went through feedback
for the last six months. We do read these things, it is
important to us.
Please let us know what you thought about today’s
seminar and also give us some suggestions for future
topics. There are a couple of different ways that you
can do that. One is by dropping us an email at
feedback@hadley.edu and the other way is by
completing a short on-screen survey I am going to
post right after we conclude today. I am going to hand
the microphone back over to Urban while I am
bringing the online survey up, so Urban I’m going to
turn it back over to you for a little bit.
Urban Miyares
Well thanks Larry and thank you all for listening in.
Take control of your diabetes. I’m a little disappointed
no one asked me about impotency because I love
talking about sex and diabetes but, you know, take
control of your health. If you take control of it it’s going
©2012 The Hadley School for the Blind
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2012-05-08-Diabetes
to be so much easier. I know if you are out of balance
right now, diabetes is a pain for you. It’s rough, it’s
frustrating, it’s on your mind all the time, and you are
not as productive as you could be. You are not as well
as you should be. Take control.
Take the efforts right now to review how you are
managing your lifestyle and your diabetes. Something
is going to have to change if you are not doing well.
And get with a diabetic educator and your doctor. Just
tell them “I want to take better control of my diabetes.”
Don’t lie to them when you tell them what your blood
sugars are or any other information. It’s not a score.
Tell them the truth. You are not graded in this area;
they are doing it for your health. So, live wonderfully
with diabetes and I hope to speak with all of you again
and hopefully meet you one day through Hadley. Bye
bye now.
Larry Muffett
I want to personally thank Urban for just a delightful
and inspiring talk today. I want to thank all of you for
attending and for your excellent questions. We
appreciate you all being a part of this today. Thanks
and goodbye for now.
[End of Audio – 1:06:02]
©2012 The Hadley School for the Blind
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