Steps to coping with a Parkinson’s disease diagnosis

By Karen Hales, Neurology Solutions Contributing Writer

So you’ve been diagnosed with Parkinson’s disease. What do you do next?  First, understand that Parkinson’s disease affects each person differently and no two cases are exactly the same. That’s why it’s important to find a doctor or specialist you trust and establish a care team that can help you navigate your care and manage your condition so that you can live well with Parkinson’s disease. Aside from your medical team, there are several concrete steps you can take to gain control of your health and maintain a high quality of life with PD. The Davis-Phinney Foundation for Parkinson’s Living Well with Parkinson’s Challenge provides information, tools and support to live well with Parkinson’s.

Strategies for Living Well with Parkinson’s

1. Partner with Your Doctor

Your doctor will likely prescribe one or more drugs to treat your symptoms, including levodopa/carbidopa, which is still considered the gold standard in Parkinson’s medication. People respond differently to different medications, so it’s important to follow your doctor’s instructions carefully and to provide as much information as you can on how the drugs are working. This includes tracking what time of day you are taking your pills–for example, whether it is before or after a meal–and what your medication on and off periods are when you are experiencing worsening symptoms.

Make sure to prepare for your neurologist appointment. Establishing a good rapport with your doctor and providing as much information on other health conditions and changes in your condition between appointments will help him or her best tailor your treatment plan. Be clear, ask questions and be an advocate for your care.

2. Assemble a Care Team

Living with a neurodegenerative disorder requires extra attention to everything from how you sleep, eat and move to maintaining a positive attitude and staying on track with your medications. Your care team may include allied health professionals such as a physical therapist, occupational therapist and speech therapist to a nutritionist or mental health provider. Neurology Solutions’ Austin Renewal Therapy center offers specialized physical, occupational, speech and cognitive therapies specifically for individuals with movement disorders such as PD. These professionals can teach you techniques for managing common Parkinson’s symptoms. You’ll also need the support of friends, loved ones and caretakers to help you maintain a high quality of life.

3. Exercise

There are reams of studies illustrating how exercise benefits individuals as they age, and in particular people with neurodegenerative diseases. Exercise has a “neuroprotective” effect on the brain, helping to increase the synapses that communicate signals across the neurons of the brain. You can join an exercise class strictly for people with Parkinson’s, start a regular walking or gym routine, get involved in dance, boxing, yoga…anything that gets your heart rate up and blood flowing and helps improve flexibility and balance.

4. Nutrition

A diet low in fat and high in protein and antioxidants is recommended for people living with Parkinson’s disease. The DASH diet was twice named best diet by U.S. World News & Report, and was selected as Best Diet Overall, Best Diabetes Diet and Best Diet for Healthy Eating. DASH followers generally consume meals that are high in fiber with generous amounts of fruits, vegetables and whole grains, nuts, seeds, and legumes, and limit salt and saturated fat intake.

5. Sleep Well

Sleep disturbances are a common symptom for people with Parkinson’s, but sleep is more important now since it helps your body restore and repair itself. If sleeping is difficult, talk to your doctor. He may prescribe medications to help you sleep, or you may consider other sleep remedies, such as yoga or meditation, going to sleep earlier/maintaining a sleep schedule or aromatherapy.

6. Set Goals

Maybe one day your goal is to complete a project you’ve been putting off and another is just to make sure to get outside and enjoy the outdoors. Many individuals with Parkinson’s continue to lead productive, active lives. Don’t give up on achieving your life’s goals, even if you have to do them differently. Learn more about the inspiring individuals who are living their lives to the fullest despite their PD diagnosis.

7. Get Involved & Become an Advocate

One way to feel more in control of your life and your condition is to get involved in the cause, either through raising awareness, getting involved in a charity for Parkinson’s disease or enrolling in a clinical study to provide information to researchers trying to develop better therapies and a possible cure.  Many clinical trials for potentially valuable new therapies and treatments are never completed because of a shortage of willing participants.

PatientsLikeMe is an online patient network that empowers people with health conditions with data from their peers to improve patients’ health literacy and provide important information to the healthcare industry, researchers and policy makers to seek better treatments and policies. More than 12,000 people with Parkinson’s use PatientsLikeMe to help track their symptoms and treatments.

8. Get out of the House

Having a disorder such as Parkinson’s causes many people to feel isolated. Know that you are NOT your disease, and there is no reason to stop being part of your community or church and an important member of your family. You may decide to join a seniors group or support group, become a volunteer or join a club you’ve been thinking about joining. In the Austin region, both the Capital Area Parkinson’s Society and Power for Parkinson’s offer programs, exercise classes and social activities for members of the Parkinson’s community.

9. Recognize & Treat Secondary Symptoms

The brain changes that cause the motor dysfunction associated with Parkinson’s eventually can spread to other areas of the brain, contributing to impaired mental functions such as memory, cognition and the ability to complete a task and secondary symptoms including psychosis and Parkinson’s dementia. Your doctor may consider prescribing one of several medications to treat secondary symptoms of Parkinson’s.

10. Have a Plan

PD can require you to plan for costs associated with ongoing care, medications and possible employment concerns. Financial planning information and tools are available on the internet and through elder care attorneys, financial planners and disability consultants. Reach out to your local council on aging to find resources to assist you.

11. Be Aggressive in Managing Your PD

New treatment options are arising each and every year, and some therapies that are commonplace today didn’t exist three to five years ago. A movement disorder specialist will be up to date on the latest treatments and will have experience with medications, supplements, techniques and surgical options at each stage of disease state. Make sure to see your specialist at least once or twice per year to provide a consistent assessment of your condition and to adjust your treatment plan as new and better treatments become available.

12. Find Help

You are not alone. Parkinson’s disease affects more than 1 million Americans and an estimated 7 to 10 million people worldwide. There are hundreds of resources and organizations available for individuals living with chronic conditions such as Parkinson’s disease and their caregivers. If you are feeling isolated, follow some of the many charitable groups who are part of the Parkinson’s community, such as the Michael J. Fox Foundation for Parkinson’s Research, the National Parkinson Foundation, Davis-Phinney Foundation, Parkinson Research Foundation and Brian Grant Foundation, and join in the conversation with others who are facing this disease.

Stay Connected

If you are seeking another opinion on managing your symptoms from Parkinson’s disease, dystonia, essential tremor or an age-related movement disorder, call 512-865-6310 to make an appointment with Neurology Solutions.

Stay informed by frequenting Neurology Solutions’ blog, or join Neurology Solutions Movement Disorders Center’s e-mail list to stay up to date on the latest in treatments and how to manage stress, stay healthy and maintain quality of life while living with dystonia, PD and other movement disorders.