Your Treatment Journey: Results from a Recent Survey

Every person with Parkinson's disease (PD) has a unique experience with all aspects of the condition. From time at diagnosis, symptoms experienced, condition progression, and more, no 2 people with PD will share the same path.

One issue that people with PD commonly diverge on is treatment. Some may be happy with their current regimen and may feel as though their symptoms are under control. Others may have tried multiple therapies with little to no relief.

In order to better understand these varying aspects of PD, including treatment experiences, we conducted our 2018 Parkinson’s Disease In America survey. Over 1,150 people with PD and 515 caregivers completed the 100-question survey. The survey addressed topics such as:

• Diagnosis
• Quality of life
• Relationships
• Symptom management

Treatment trends

Becoming a part of the team and financing treatment

Roughly 6 out of 10 respondents felt strongly that they are decision-makers in their treatment. Only 7 percent strongly felt the opposite to be true – that they do not play an active role in treatment planning.

When it comes to seeking out information about PD, many respondents said they want to be in the know and do their own research. In fact, more than 4 out of 10 strongly agreed with the statement, “I actively seek out information about the latest Parkinson’s disease medications.”

People with PD reported that the financial impact of the condition was moderate. Over 7 out of 10 said that they spent less than $200 a month out-of-pocket on PD-related therapies.

Experience with DBS

DBS stands for deep brain stimulation. Many with PD wonder about or consider the procedure. About 1 in 10 survey respondents reported having DBS. Of those who had gone through DBS, more than half reported having more than one related operation. Common reasons reported for a second (or further) DBS-related surgery included:

• Battery replacement (39 percent of people who had undergone DBS)
• Getting a new neurostimulator (8 percent)
• Replacement of the lead wire (6 percent)
• Needing to target a new area or structure within the brain, such as the globus pallidus, subthalamic nucleus, or the ventral intermedius nucleus (4 percent)

Exercise regimens

Exercising has been linked to a potential delay in the progression of PD. It may also help with symptom control. About 8 out of 10 respondents said they exercised at least once a week. More than 3 out of 10 reported exercising 2 to 3 days a week. Another 3 out of 10 said they exercised 4 or more days a week. Common forms of exercise routines included:

• Walking (59 percent of respondents)
• Flexibility exercises or stretching (51 percent
• Biking, including stationary biking (36 percent)
• Gait and balance training (32 percent)
• Strength and/or resistance training (25 percent)
• Breathing and/or mindfulness exercises (15 percent)
• Boxing (15 percent)

Among other types of exercises people mentioned were:

• Marching
• Dancing
• Water exercise or swimming
• Aerobics
• Golf
• Tennis
• Pilates

Symptom control and supplemental therapy

Adequate control of PD symptoms can often lead to increased quality of life. Over half of respondents felt as though their PD was moderately under control. About 25 percent reported having PD that was very well controlled. Less than 10 percent felt as though their PD was not well controlled at all. And 15 percent of respondents felt strongly that they have tried everything possible to manage their symptoms, yet they are still not controlled.

In an attempt to achieve better control over symptoms, some reported using complementary and alternative therapies. Common complementary and alternative therapies included:

• Taking vitamins or supplements (including melatonin, CoQ10, and/or turmeric)
• Eating a balanced diet
• Participating in other diet-related interventions

Consult your doctor before starting or stopping any supplemental therapy, including taking over-the-counter vitamins and supplements, to avoid any negative impact on your treatment.

The 2018 Parkinson's Disease In America Survey was conducted online from January through February 2018. The survey was completed by 1,680 people: 1,165 with PD and 515 caregivers.