Living With Parkinson’s

Before anything else happened, Beverly Lavender lost her sense of smell. It was a sign of changes in her neurons, though she didn’t know it at the time. It was only four years later, in 2004, that Lavender, then a 44-year-old fashion designer, began to notice a slight tremor in her right hand and headed to her doctor. While the neurologist to whom she was referred ordered blood tests and an MRI to eliminate other possibilities, he quickly zeroed in on Parkinson’s disease. “I felt like I’d been punched in the chest,” recalls Lavender.

Six years ago, Steve Van Vlaenderen, now 66, realised that the middle finger on his right hand kept twitching. His GP thought he might have nerve damage or carpal tunnel syndrome, but after the tremors spread to his forearm, Van Vlaenderen asked to see a neurologist. When he received a Parkinson’s diagnosis, he took it calmly at first. “I’d confirmed what I had, which is what I wanted to do,” he says. “But after I left the doctor’s office, it hit me like a ton of bricks. It was going to change everything.”

Lavender and Van Vlaenderen are just two of the seven to ten million people worldwide who are living with Parkinson’s disease, the second most common neurodegenerative condition after Alzheimer’s.

With Parkinson’s disease, simple things most of us do without thinking – pulling change from a pocket, scribbling a note, going for a walk – can become difficult and eventually impossible. The source of the problem is in the brain. Cells in the substantia nigra region slowly die off, and with them much of the ability to produce the chemical dopamine, which relays messages from the brain to the muscles. Without enough of it, messages don’t get through easily, or at all.

The most common and best known of the disease’s possible symptoms – shaking, stiffness, impaired balance and slow movement – affect the motor skills. However, due to the range of ways the damaged neurons influence body and mind, Parkinson’s can also give rise to problems known as its ‘non-motor symptoms’. According to Dr Ron Postuma, an associate professor of neurology at McGill University in Montreal, these run the gamut from sleep disorders and constipation to double vision.

The tremors that convinced both Lavender and Van Vlaenderen to seek med­ical advice appear in approximately 70% of people with Parkinson’s – but that phenomenon can be present in other illnesses. To be certain of the diagnosis, a neurologist will typically run a series of motor-skill tests. They might look for signs that a person can tap his thumb against his index finger, tap his heel against the floor, perform various hand and arm movements – all at a rapid pace.

Although the symptoms can appear in people as young as their 30s, the average age at diagnosis is around 65, with men at somewhat greater risk than women. In most cases, there is no family history.

Van Vlaenderen noticed shifts in his mood at about the same time the shakiness in his hand began. These changes were subtle at first, but over the two-and-a-half years following his diagnosis, they gradually turned into anxiety attacks and a depressive crisis. Parkinson’s disease targets areas of the brain that influence mood, which is partly why one-third of patients experience anxiety and depression. “I was in a black hole and couldn’t seem to find a way out,” he says. Even now that his mood has stabilised, he rarely feels elated. “Compared to that,” he says, “the tremors and motor-skill problems are easier to handle, at least for me.”

Lavender has struggled with depression, as well. “I recommend that anyone who experiences this problem seeks assistance,” she says. “Antidepressants helped me, and it’s also good to have a therapist.” For Lavender, perhaps the most valuable step was joining a support group. “We’d often ask each other, ‘Have you noticed this symptom or that one?’ It’s nice to feel like you’re not the only one.”

When it comes to medications, the gold standard for treating Parkinson’s is levodopa, a drug that is converted to dopamine in the body. But, says Professor Leslie J. Findley, chairman of the UK’s National Tremor Foundation, “We know that over three to five years, problems with levodopa can arise.” Those issues include dyskinesia – involuntary movements that can be, as Findley says, “quite excessive”. At the same time, people on levodopa might become stiff as the drug wears off before the next scheduled dose.

Often, doctors will start people newly diagnosed with Parkinson’s on one of two other classes of drugs: so-called dopamine agonists, which mimic the effects of dopamine; and MAO-B (monoamine oxidase) inhibit­ors, which slow the breakdown of dopamine in the brain.

Potential side effects can be significant, however. Dopamine agonists, MAO-B inhibitors and, to an extent, levodopa are associated with lessened impulse control, making those taking them more prone to risky behaviours, such as gambling.

Treatment isn’t entirely pharmaceutical. One of the best ways to battle Parkinson’s symptoms is with physic­al activity, either self-guided (yoga, swimming, walking) or under a physiotherapist’s supervision.

In 2013, side effects such as extreme weight gain and debilitating fatigue convinced Van Vlaenderen to stop taking MAO-B inhibitors. Although he may eventually need medication, for the past two years he’s been relying on robust physical activity to keep his symptoms to a minimum. He remembers the night he decided to take control of the disease. “Any kind of change was better than continuing with my life the way I was,” he says. “The next day, I started going to the gym.”

Five times a week, Van Vlaenderen sweats through a two-hour cross-training routine that works a lot of his core muscles – strengthening them helps counteract the effect of Parkinson’s on his balance. Not only has he grown fit enough to bench-press 110 kg, he’s also seen huge psychological improvements. “Lots of things require greater effort with Parkinson’s, so it’s tempting to not do anything,” he says. “But I feel a lot better when I make a deliberate decision to stay act­ive.” Besides working out, he’s been running a storage and records-­management business, dictating emails to his smartphone or typing them with his left hand because his right is no longer up to the task.

For her part, Lavender was able to work full-time for 11 years after her diagnosis, thanks partly to positive effects from levodopa, as well as e­xercises such as tai chi and yoga. Only recently has her fatigue progressed to the point where she decided to retire. But she continues with hobbies like painting and knitting, both which slow down the disease’s toll on her hands’ motor abilities.

The progression of Parkinson’s varies from person to person. “About ten per cent of patients have a tremor, usually in one hand,” says Findley, noting that this might be their sole symptom for a decade or more. “At the other end of the spectrum are patients who, within five years, have reached the mid-stage.”

Early challenges might include stiffness, muscle discomfort or a loss of facial expression. “Sometimes I worry how people perceive me because of my relative lack of body language,” Van Vlaenderen says. “I can appear uninterested when I’m not.” However, he laughs, this can work to his advantage when playing poker.

In the mid-stage, people might experience balance problems, “freezing” in place, tiny handwriting and softening of the speaking voice. And in severe, late-stage Parkinson’s disease, drugs no longer help ease the symptoms. The problem isn’t just that the brain cells that produce dopamine die off; those that utilise dopamine also die off – and they can’t be replaced. As a result, says Findley, a person with Parkinson’s might need drugs more frequently and might also have periods of being unable to move.

If and when levodopa is no longer effective, another treatment option is a procedure called deep brain stimulation (DBS), in which electrodes are implanted in the brain to produce electrical impulses that help regulate abnormal brain signals.

DBS isn’t a silver bullet: the degree to which it eases symptoms varies – it doesn’t generally improve those that don’t respond to levodopa. There is a small risk of infection, so candidates need to be selected carefully – they are usually people who are no longer responding in a helpful, predictable way to levodopa or who are experiencing debilitating dyskinesia as a result. Meanwhile, medical researchers worldwide are looking into less invasive ways to deal with levodopa-responsiveness issues, such as delivering the medication continuously via a skin patch.

While Parkinson’s disease is a life-altering ailment, it may not significantly shorten life expectancy if well managed, says Findley. He advises his patients: “Try in the early stages to lose any ‘invalid’ reaction and instead push yourself to be active. Staying active and positive appear to be among the secrets to living as well as possible with Parkinson’s.”

At all stages, people coping with the disease are encouraged to eat a balanced diet, manage stress and basically do as much as they can for their general wellbeing. Says Lavender, “The healthier you are, the better you can deal with Parkinson’s, physically and emotionally.”

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