Living with movement disorders: What to expect with Parkinson's disease

“Everybody with Parkinson’s has a very individual course,” explains Laura Buyan Dent, MD, PhD, director of UW Health’s Movement Disorders Program. “It’s a wide spectrum of symptoms and severity. You’re not guaranteed to get every single symptom. Some people never have tremors or hallucinations or specific cognitive issues.”

It’s also important to remember that most Parkinson’s cases have a very gradual progression, typically over months to years. “Often people might have seen someone who has lived with it for many years or who has one of the atypical forms of the disease, and they panic and jump to that picture,” Dent says. “Their mental image is someone who has a fairly advanced case. But early on, people won’t even be able to notice you have Parkinson’s.”

How movement disorders can affect body and mind

Here’s how the condition might affect your body and mind:

Movement

“Overall people will notice movement difficulties,” Dent says. “They can lose dexterity in their hands and have difficulty walking. Early on, people might feel stiffness in their arm, and some people might think it’s arthritis.” It’s common for patients to feel very self-conscious about their movement difficulties, but medication can help make the symptoms more manageable, Dent notes.

Vision

“Some people who have had Parkinson’s for many years might have a little problem with double vision,” Dent says. But generally, Parkinson’s doesn’t have a significant effect on vision.

Speech

Low muscle tone, called hypotonia, can affect your voice. “Sometimes people develop a very quiet voice, and it can be hard to understand them,” she says. “Speech therapy can help with that.”

Chewing and swallowing

Both can decline over time. “Usually what people will notice is not problems with swallowing solids,” Dent says. “It’s usually problems with liquid, like coughing when you drink water.”

Sleep

Although research is still ongoing, it’s thought that certain types of sleep disorders (particularly REM sleep behavior disorders) can be a marker for neurodegenerative disorders like Parkinson’s, manifesting decades before a Parkinson’s diagnosis. Patients with Parkinson’s might also have problems with sleep fragmentation, falling asleep easily but then waking up frequently throughout the night, Dent says.

Mood disorders

These can be very common, especially as patients grapple with a new diagnosis. “Sometimes when people are first diagnosed they go through a period of grieving,” Dent says. “Some people can get very anxious and depressed, and early on their quality of life can be more impaired by depression or anxiety than their actual motor symptoms. So we monitor closely for that, and we often involve health psychologists who are really good at helping people with not letting fear overtake and overwhelm them.”

Patients with Parkinson’s can also develop apathy, losing their drive and motivation. “Apathy can be a sign of depression, but in people with Parkinson’s it can be just a part of the disease and it often doesn’t respond to antidepressants,” she notes.

A good neurologist will screen you for any problems, but don’t hesitate to bring up any new or concerning issues. “If you’re trying to prepare for a doctor’s visit, think about the top two to three things that are really interfering with your life right now,” Dent suggests. Your doctor might be able to recommend medication, therapy, or lifestyle changes that can help.

Managing the changes that can come from Parkinson's

In the meantime, Dent shares these tips for managing the life changes that can come along with Parkinson’s:

Exercise regularly

“One of the things that we emphasize is that people start to exercise,” Dent says. “For some people that’s their treatment. There’s some evidence that exercise is neuro-protective, and it might slow down the progression of the disease.”

Reassess your priorities

“Parkinson’s is going to force you to take good care of yourself,” Dent says. “And it helps you reassess things. If you’re still working and you have the potential to have a lot of difficulty walking in the future, ask yourself: ‘Do I want to spend my good years working or do I want to travel?’”

Prepare your home space

If you’re thinking about moving, it might be a good idea to downsize, and to make sure your new home is wheel chair or walker accessible. Think about how to make your living space as fall-proof as possible. “All of us should have grab bars in the bathroom,” Dent says.

Drive safely

A Parkinson’s diagnosis doesn’t mean you have to automatically hand over your car keys — experienced drivers often do just fine, Dent says. “The thing that seems to prevent people from driving the most is if they have cognitive issues,” she notes. Some medications can also make you feel sleepier, which can affect your driving ability. If you have any doubts about your ability to drive, play it safe and get a ride.

But while it’s good to be prepared, try not to worry before you have to.

“I’ve seen people live with this for years successfully,” Dent says. “They may have some pretty significant symptoms, but they’re out enjoying life. They’ll find ways to adapt and live around it.”