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| Ted Herbert (Herbert family photo) |
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The diagnosis is a huge hit
to patients but getting past the initial shock is just the first of
many hurdles presented by this chronic disease
By Ellen Ashton-Haiste
The diagnosis – diabetes – was both a shock and a relief for Ted Herbert.
The relief was that the diagnosis was not MS. “I told my doctor
‘I’m pretty sure I have either diabetes or MS. That was my
self-diagnosis,” Herbert says. Despite the common, tell-tale symptoms
of diabetes – extreme thirst and frequent urination – others that led
him to suspect MS included numbness in his legs and deterioration in
his vision, which went from near-perfect to barely able to read the
computer screen in just a couple of weeks.
The shock, for both Herbert and his doctor, stemmed from the
fact that he had none of the common risk factors. “I was active, my
diet was pretty good, I always maintained a decent weight.” And there
is no known history of diabetes in his family.
While Herbert, who was diagnosed 14 years ago at age 40, took the
news more or less in stride, many people go through a roller coaster of
emotions similar to the grieving process, says Dr. Allan Burgmann, a
clinical psychiatrist in British Columbia’s Lower Mainland.
“They’re in a bit of disbelief and denial initially; then they
may get angry at the fact that they got it and why it had to happen to
them. Then they get a bit depressed.
“With diabetes, as with any chronic illness, there’s a huge overlay
of depression,” Burgmann says. “And what is concerning is that
depression really complicates the management of diabetes because a lot
of the symptoms make it difficult to manage blood sugars. If you’re not
eating properly, or not exercising because you’re too fatigued, or your
concentration is sufficiently off that you can’t remember to take your
medicine, do your glucometer readings or go to appointments, things
start coming off the rails fairly quickly.”
Herbert, who now lives in Barrie, Ont. but was living in
Calgary at the time he was diagnosed, says what was most helpful for
him was the information he got from the local diabetes education
centre. “They do a good job informing patients about what has to be
done, what kind of things you are to eat or not eat and what
quantities.”
Knowledge is empowering, agrees Margaret DeMelo, a dietitian with
the Diabetes Education Centre for the University Health Network at
Toronto Western Hospital. “The more the patients know, the more power
they have to understand it, to get past the initial shock.”
Correct information can also put issues in perspective, says
Burgmann, adding that the first thing patients do, in this internet
age, is “go to Google” and look at everything they can find, which
isn’t always the best information. “They see the worst possible
outcomes – amputation, heart attacks, kidney failure, neuropathy – and
start worrying about what’s coming down the pike at them. All of that
weighs fairly heavily on someone’s mood stage over the long haul.”
Diabetes education centres, found in most major urban centres and
large hospitals, employ a team approach. “Being supported by an
interdisciplinary team is so important,” says Eidemara Tavares,
cognitive behavioural therapist at Toronto Western.
The
team there includes nurses, a social worker, pharmacist,
physiotherapist and even a chiropodist in addition to Tavares and
dietitians like DeMelo.
“I love the team I work with,” Tavares says. “We work very
closely together. Often (team members) are able to come into a
(counselling) session and intervene, even if it’s just for five
minutes, to respond to an issue and give information.”
For example, she says, the social worker can help people find
financial resources to help with unexpected costs that might not be
covered by insurance. Although medications themselves are covered by
provincial plans like OHIP, other necessary management tools, like
glucometers and test strips for blood sugar monitoring or needles for
injecting insulin, may not be.
These education teams are definitely an essential resource,
Burgmann agrees. “I think the worst thing you can do is have your
diabetes managed by just one person. It’s such a complex illness, you
have to have dietitians, you have to have nurses specializing in
diabetes, you have to have all the support staff because everyone comes
to the table with their own skill sets to optimize management.”
For most diabetics, getting over the diagnosis hurdle is just the
first step down a long road that brings that them back to the centre’s
resources time and again.
Diabetes is a progressive disease and the treatment often
changes. Like many people, Herbert started out with oral medications
and diet adjustments, which worked well for awhile. But as time went on
the doses continually increased until finally they weren’t doing the
job and he started on injected insulin.
This is where he has felt the greatest impact on his lifestyle.
“What I really notice is that you can’t do what you want, when you
want. It really steals any spontaneity.” There’s the constant testing
and the reality that blood sugar levels will determine what you’re able
to do. He always enjoyed running, being able to just “throw on shoes
and go.” But now exercise must be timed to a certain range of blood
sugar levels.
“The other thing I’ve had to come to terms with,” Herbert says,
“is that insulin, when you inject it, is a growth stimulant. Wherever I
inject the insulin, I end up getting bigger. (The typical injection
site is the stomach area.) So I haven’t been able to control my body
fat around my stomach, because every time I increase my insulin dosage
it increases the cell fat. So it doesn’t matter how much I exercise, I
keep getting fatter.”
These changes are something many patients find depressing,
Burgmann says. “Insulin is pretty heavy duty and it does limit some of
the things that you can do. It’s just another complicating factor for
doing anything, even as simple as a weekend trip. You have to make sure
you pack all this stuff. It’s not like you can manage without your
insulin for the weekend. It’s just another thing you have to worry
about.”
The other thing always in the back of people’s minds, he
believes, is the potential for more serious health problems in the
future.
This is something Herbert is starting to grapple with.
“I never have been worried (about future health issues) but
it’s starting to get that way,” he says. “I was at the eye doctor’s
earlier this year and he found some spots on the back of my eyes, a
result of blood sugar fluctuations. Whenever I’ve been to the eye
doctor before, he said ‘if you hadn’t told me you had diabetes, I would
never have been able to tell by looking in your eyes.’ But this time he
said ‘it’s starting.’ So it makes you think. What is going to be 10
years from now?”
All those things are pretty frightening, Burgmann says. Sometimes,
it leads to a pessimistic mindset that says: “I didn’t want this and I
got it and I can’t do anything about it so I’ll just live my life
today, and do what I want, and worry about the side effects when they
come.”
But, in fact, he says the “take home message” is that this is a
manageable illness and people do stay well so doing everything to make
sure the odds are stacked heavily in their favour will yield the best
case scenarios.
As for Herbert, he’s investing hope in the ongoing research, in
areas like stem cells and islet transplants. “Things change quickly and
all you need is one breakthrough and it could fix you right up.”
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