Monday, July 18, 2016

Seven Misconceptions about Living with Parkinson’s Disease

Posted by Nancy Ryerson, April 01, 2016

michaeljfox.org

If you or a loved one live with Parkinson’s, you're well aware of the varied symptoms that can be part of the disease. For those without first-hand experience, however, misconceptions about life with Parkinson’s can be common and don't reflect the reality of the disease.  

This Parkinson’s Awareness Month, share these misconceptions about Parkinson's disease (PD) with your friends and family. If they’re interested in getting involved, joining our community is a great place to start.

Misconception: Only elderly people are diagnosed with Parkinson’s disease.


Reality: While the average age of diagnosis is 60, many are diagnosed younger, and some receive a diagnosis before age 40. Though people with young-onset Parkinson’s disease (YOPD) experience the same symptoms, life can look different. People with young-onset Parkinson’s disease may have young children or a busy job, for example. Guest blogger Natasha McCarthey shared what she learned about YOPD after her diagnosis at age 37. 

Misconception: Everyone with Parkinson’s experiences the disease the same way.


Reality: Each person with PD experiences the disease in a different way. For some people, tremor is the first symptom they experience, while others never see tremor or don’t for many years. People with Parkinson’s also do not have a particular “look.” While facial masking and slowness of gait are common symptoms that many associate with PD, not everyone living with the disease experiences them.

Misconception: Symptoms are the same from day to day.


Reality: Parkinson’s symptoms can vary daily and even hourly. Levodopa, the "gold standard" medicine for Parkinson's, can wear off before it’s time for another dose. Sleep patterns, fatigue and mood can also be unpredictable with the disease.

Misconception: Tremor is the only symptom of Parkinson's.


Reality: Tremor is the best-known Parkinson’s symptom, but the disease can include a range of other motor and non-motor symptoms. Slowness of movement, rigidity and postural instability are other “cardinal” Parkinson’s symptoms. The disease can also include sleep problems, mood disorders, constipation and other challenges. 

Misconception: All Parkinson’s symptoms are visible.


Reality: Many Parkinson’s symptoms aren’t obvious to the naked eye. Fatigue, apathy and depression are all common PD symptoms that for some are the most challenging part of the disease. For some, and on some days, Parkinson's can be an "invisible" disease.

Misconception: Medication takes care of all the physical symptoms of Parkinson’s disease.


Reality: Levodopa is the “gold standard” of PD treatments and helps improve mobility for most people with Parkinson’s. There are several motor symptoms, such as gait and balance issues, that Levodopa doesn’t treat. Dyskinesia, involuntary movements that can look like smooth tics, is a side effect of levodopa.

Misconception: There’s nothing you can do after a Parkinson's diagnosis.

 
Reality: While there is no cure for Parkinson’s disease, research suggests that there are several ways to improve symptoms. Exercise may help improve balance issues and motor coordination, and may also have an impact on mood, fatigue and other non-motor Parkinson’s symptoms. Finding the right doctor can also make a big impact on your experience with PD. A movement disorder specialist, a neurologist with additional training in Parkinson’s, can help you create the right treatment plan for you and connect you with allied care providers. Physical therapists, nutritionists and other professionals can also help you live better with Parkinson’s. Many also find participating in Parkinson's research empowering. Create a profile on Fox Trial Finder to locate nearby trials that interest you.