The Parkinson’s Symptoms Nobody Talks About: Results From Our Survey
Parkinson’s disease (PD) is a neurological disorder that affects a person’s ability to move. Most people associate PD with movement or motor symptoms like tremors, shaking, muscle stiffness, and poor balance. However, there is a lot more to PD than its most recognizable symptoms.
Our 4th Annual Parkinson’s Disease In America survey included a question that asked people to share the lesser-known symptoms they have experienced with their condition.
There were a number of different symptoms and insights noted by survey respondents, ranging from fatigue and pain to dry mouth and apathy.
Fatigue can disrupt daily activities
Those living with PD say fatigue disrupts daily life and robs them of motivation. Some survey respondents named fatigue as the most challenging Parkinson’s symptom to live with. Fatigue gets in the way of completing work and other tasks.
Fatigue can interfere with overall ambition and making plans. Many community members say fatigue exacerbates anxiety, depression, cognitive ability, and other symptoms.
- 71 percent report feeling fatigued in the past month
- 15 percent cite fatigue as the most challenging symptom to live with
- Of those who have fatigue, 50 percent say it interferes with physical functioning
“When I am fatigued, everything else, i.e., walking, talking, thinking, becomes increasingly difficult.”
“I can work through the pain and balance issues. I can deal with constipation, but fatigue makes all of that more difficult and prevents me from doing things that I would like to do, thereby taking away my motivation to do anything.”
Pain can be all-consuming
About half of survey respondents say their pain level has been higher than average in the past month. Respondents say pain is difficult to live with because it interferes with exercise and sleep. Parkinson’s-related pain can be all-consuming, as some say they cannot get their minds off of the pain.
- 43 percent experienced pain in the past month
- 8 percent named pain as the most difficult symptom to live with
“My pain becomes so intense that I do not know what to do.”
“I would prefer death over the pain I encounter some days.”
Sleep issues make other symptoms worse
Sleep issues are problematic in the Parkinson’s community. Respondents shared that when they do not sleep well, other PD symptoms like walking, balance, and speech get worse. Some say sleep issues lead to fatigue and lack of motivation.
- 47 percent reported sleep issues within the past month
- 8 percent cited sleep issues/insomnia as the most challenging symptom
“...When I cannot sleep I am exhausted, and when I am exhausted my legs do not want to move.”
“Makes every symptom worse when I cannot get sleep.”
Incontinence is embarrassing
Survey respondents with bladder and bowel incontinence say it is challenging to live with and extremely embarrassing. Community members say bladder issues interfere with sleep.
Some people with bowel incontinence say they are constantly worried about not making it to the bathroom on time.
- 42 percent had bladder issues in the past month
- 15 percent had bowel incontinence in the past month
- 5 percent named bladder problems as the most difficult symptom to live with
“Have to go to the bathroom sometimes 3 or more times in 15 minutes through the day and night.”
“I wear overnight incontinence pads daily [and] change them 4 to 5 times daily. They have a tendency to leak, and I have frequent accidents. I do not always make it to the bathroom on time.”
Dry mouth and difficulty swallowing make eating tough
Dysphagia, or difficulty swallowing, and dry mouth can be frustrating to live with. Those with dysphagia and dry mouth say they can no longer eat and enjoy their favorite foods. Others have trouble taking medicines and holding conversations. 24 percent report dysphagia in the past month.
“My mouth goes from excess saliva to very dry mouth. There are certain foods, like bread, that I have trouble swallowing.”
“[It is] difficult to swallow medicine and pills, and the feeling that something is stuck in my throat/choking feeling.
Apathy impacts quality of life
Respondents with apathy say they are not able or willing to do things they want to do. Some say fatigue and apathy have a negative effect on their emotions and overall quality of life. Of those who have fatigue as a symptom, 73 percent say their motivation is lower when fatigued.
“Apathy, loss of executive function, difficult to follow through on something I would really like to do.”
“I have a great amount of apathy, which in turn depresses me. Used to have enthusiasm for life, now apathy has changed my life along with the fatigue.”
The 4th Annual Parkinson’s Disease In America survey was conducted online from May to August 2020. 1,472 people completed the survey.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?