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 practising in the Vancouver area.
"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. 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," 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, 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.
Says Tavares: "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, other necessary management tools, like glucometers and test strips for blood-sugar monitoring or needles for injecting insulin, may not be.
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 and finally 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."
"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. (Typically this is in the stomach area.) 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. It doesn't matter how much I exercise, I keep getting fatter."
Also in the back of people's minds, Burgmann 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 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?"
Herbert says 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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KEYS TO TREATMENT
Information: 'The more the patients know, the more power they have to understand it, to get past the initial shock,' says one expert. But don't google, go to a local diabetes-treatment centre.
Teamwork: Take advantage of treatment teams at large health centres: your doctor, nurses, a social worker, pharmacist, physiotherapist, a dietitian and even a chiropodist.
Don't get discouraged: Diabetes is a manageable illness so stay committed to your treatments to keep the odds in your favour.
