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Traveling the Rocky Treatment Path with Parkinson’s

Anyone affected by Parkinson’s disease knows how challenging and debilitating it can be, especially as the condition advances from early to late stage. People diagnosed with Parkinson’s, as well as their care partners, often wonder what their treatment journey will look like once they learn of their diagnosis, especially given the nature of their disease.

We wanted to understand what that treatment journey with Parkinson’s looks like, so we asked our community members to share their experience. For the Parkinson’s Disease In America 2019 survey, we gathered insights from 1,411 people who are currently living with the disease and 309 caregivers. Below are some highlights from what our community shared with us.

Parkinson’s treatment experience

Oftentimes, medication is the first line of treatment for people who are diagnosed with Parkinson’s. However, that’s not the only form of treatment offered to patients.

From research, we know that exercise and staying active is extremely important among people with Parkinson’s (PwP) to help manage symptoms. We also know that a portion of patients may decide to have a surgical procedure, such as deep brain stimulation, to help manage symptoms as well. All of these options should be discussed with a doctor prior to starting any new treatment.

Top treatment options for Parkinson’s disease patients

There are a number of ways to cope with a Parkinson’s diagnosis beyond taking medication. Many consider these options for coping as part of their overall “treatment” plan. These coping methods are built into their everyday lifestyle and routine to help them feel better overall.

Top methods for coping with a Parkinson’s disease diagnosis

Medication management with Parkinson’s

Although there’s a number of options to be considered as part of one’s treatment plan, it’s usually inevitable that treatment will include medication as well.

Oftentimes, treatment means taking multiple medications at the same time every single day. For example, 24 percent of respondents reported taking 5 or more carbidopa/levodopa pills a day alone. This can be a daunting task when there’s a number of medications to take, those medications are taken at different times during the day, and the person with Parkinson’s may be experiencing cognitive issues, such as forgetfulness.

Percentage of survey respondents that have forgotten to take their medication on schedule in the last month

Side effects of taking Parkinson’s medications

In addition to the difficult task of remembering to take medications at the same time each day, many PwP also have to deal with side effects from those medications.

One of the most common side effects of taking carbidopa/levodopa is experiencing motor fluctuations or “off times”. Another common side effect is dyskinesia, or abnormal movement of the body or limbs. Results from our survey showed that 52 percent of respondents experience motor fluctuations or “off times” and 37 percent experience dyskinesia from taking carbidopa/levodopa medication.

Number of hours that Parkinson’s disease patients experience side effects like “off-time” and dyskinesias in a typical day

Financial impact of Parkinson’s: The increasing cost of medications

People with Parkinson’s often take multiple medications a day, which can add up in terms of cost. In our survey, about 21 percent of patients felt that Parkinson’s had a negative impact on finances. 10 percent of patients avoided using a medication due to cost and 10 percent use a financial support program to help with costs.

Average monthly out-of-pocket spend for Parkinson’s disease treatment

Learning more about Parkinson’s disease

In the past 6 months, 25 percent have gone online to read other patients’ opinions of a medication and 19 percent have visited a prescription medication’s website.

Here at ParkinsonsDisease.net, we provide information and support for people who are going through these treatment challenges – both on our website and on our Facebook page. There are other ways to get the information needed as well, which include speaking to a healthcare provider, conducting thorough internet searches, and/or turning to Parkinson’s associations. All approaches are helpful in understanding the entire treatment journey experienced by someone with Parkinson’s.

Top resources that Parkinson’s disease patients use to learn more about or manage their condition

The Parkinson’s Disease in America 2019 survey was conducted online from April through July of 2019. Of the 1,760 people who completed the survey, 1,411 were people who have been diagnosed with Parkinson’s disease and 309 were caregivers of people with Parkinson’s. The remaining 40 were caregivers of people with Parkinson’s who have passed away.

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