Accepting that you or a loved one has been diagnosed with Parkinson's disease is a process. Learn more about the steps most people go through, and what adjustments to expect at home and at work.

Dealing With the Diagnosis

It's normal to feel overwhelmed and anxious after learning that you've been diagnosed with Parkinson's disease. Most people with Parkinson's go through a similar acceptance process following their diagnosis.

 

It begins with denial and is often followed by helplessness, then anger, and then withdrawing from family and friends, before finally reaching acceptance. Going from being a well individual to someone with a chronic, progressive disease is a major transition, says the National Parkinson Foundation.

Some Parkinson's patients may avoid going to the doctor for follow-up appointments or refuse to take their medication, almost as if they are hoping the diagnosis was wrong.

It may help to seek a second opinion. If you decide to do so, look for a physician who specializes in neurological diseases, such as a neurologist or a movement disorders specialist, who focuses on treating diseases like Parkinson's.

Role of Family and Friends

Parkinson's not only afflicts people with the disease, but their spouses, children, and friends, all of whom, must make adjustments in their lives, too. The future is cloudy to the entire family. Spouses may worry about finances and their increased care-giving role.

 

Experts strongly suggest that patients involve their spouses and other family members so they can understand the disease and its progression and when they may need to take on roles the patients once performed.

You and your family may need to get help with housekeeping, shopping, and yard work. Don't be afraid to have a close friend or family member come with you to doctor's appointments; it will help them better understand the disease, too.

Support groups

Know that you're not alone. Parkinson's affects an estimated 1.5 million Americans, and one of the best things you and your loved ones can do is find a support group. You and your family may find comfort by meeting people facing similar issues and challenges.

 

Look for a group that best meets your needs: Do they meet close to your home? Is it a large or small group? Do they bring in experts to talk about coping with Parkinson's? Do you enjoy being around the people? Internet support groups can be helpful, too.

Other people in your support group may be able to offer suggestions for choosing a doctor or other health specialist (such as an occupational therapist to help continue to do daily activities), what to expect when using devices like canes and wheelchairs, and possible side effects of common medications.

Parkinson's and Your Job

People with Parkinson's are often concerned with how the disease will interfere with their work and subsequent ability to earn a living.

 

At first, you may not need to make significant changes at your job, but as the disease progresses, you should take stock of what you can do and make adjustments. Eventually, you'll have to face whether you can continue in the job at the same level or in a diminished role, if your employer is willing to make adjustments. Your ability to do your job will depend on the progression of the disease and the type of work you do.

At more advanced stages, Parkinson's disease is considered a disability, and the federal Americans with Disabilities Act entitles all qualified individuals the right to a job, regardless of disability. It also requires reasonable accommodations for a disabled worker, which could include adjusting work schedules or assignments, or workplace modifications for equipment and devices.

If you seek a new job after you're diagnosed, the law prohibits employers from asking about your health until after you've been offered the job and only if it affects specific performance.

You and your family may also want to decide if applying for government disability programs is right for you. Disability benefits are available for people who recently held a job but are no longer capable of working.