Smart Patients Blog Series 3 of 5: Dr. Gilbert Discusses Non-Motor Symptoms of Parkinson’s Disease
This article is Part 3 in our Smart Patients Blog Series
Although Parkinson’s disease (PD) is often viewed as a movement disorder, many patients find that non-motor symptoms have an equally significant impact on daily life. Cognitive changes, fatigue, sleep disturbances, mood changes, and bladder/bowel issues frequently raise questions for patients and caregivers.
During a recent Smart Patient discussion, community members asked engaging questions about these non-motor symptoms and related topics. The American Parkinson Disease Association’s Chief Mission Officer Rebecca Gilbert, MD, PhD, answered each one of these questions in depth. (Scroll to the bottom to learn more about APDA’s partnership with Smart Patients, a supportive online community.)
Questions and Answers About Non-Motor Symptoms in PD
Q: My motor symptoms are currently well-managed, but the non-motor problems are not being addressed. What should I do about this?
A: Although Parkinson’s disease is called a movement disorder, this is really a misnomer. Parkinson’s disease is way more than that. It can definitely affect how a person moves, but it also can affect bowel function, bladder function, blood pressure regulation, cognition, mood, sleep, and much more. There are often treatment options and strategies to manage these issues so discuss them with your neurologist. If just the motor symptoms are being addressed at your visits with your neurologist, at your next appointment be sure to bring up at least the top two non-motor issues that you would like to discuss and improve. Do this early in the visit to make sure they get addressed so that you and your doctor can work towards practical solutions to the issues that are really bothering you.
Q: Is it normal for bowel and bladder problems to come and go intermittently?
A: Parkinson’s symptoms in general can wax and wane, including bowel and bladder problems. There is one caveat to this however: when a person with PD has a symptom – particularly a new symptom or a significantly worsened symptom – it is important not to assume that it is due to PD without investigating it further with your doctor. So, if bowel or bladder symptoms worsen a lot, especially if they change quickly, then one needs to consider whether a new medical problem has developed. Discuss the change with your primary care physician.
Q: How do you distinguish whether symptoms are from aging, Parkinson’s, or medication side effects?
A: There is a lot of overlap between symptoms that may be caused by PD and many other possibilities – including the two you mention, aging and medication side effects. Sometimes it is very hard to know what is causing a particular symptom. Your doctor will ask you questions to try to understand the symptom better and may order a test or tests to help figure out the cause. This can be very useful because knowing the cause can help you treat the symptom. Here is an example: Let’s say you have pain in your arm – is it due to PD, arthritis, cervical spine disease, or something else? Your doctor will ask you questions about the symptom to help solve the issue. If the pain is helped by a dose of PD medication for example, then it is likely related to PD and adjusting medication timing and/or dosages may help. However, even if the pain is not affected by PD meds, it still may be due to PD.
However, there are other causes of pain that may be considered. Your doctor may order X-rays of the joints or imaging of the neck to look for injury or other issues. What is found on these tests will continue to guide treatment. Sometimes it remains unclear what causes a symptom. If that is the case, the focus should be on treating the symptom regardless of cause.
Q: My 81-year-old husband was diagnosed about 4-5 years ago with PD and cognitive decline. Why does each healthcare provider see us together and depend on me for all the information? It often results in me saying things that are likely difficult for my husband to hear.
A: If your husband can’t or doesn’t provide information about how he is doing during the office visit, then healthcare providers will most certainly rely on you to help guide treatment decisions. Care partners can be a wealth of knowledge due to their daily observations and interactions with the patient. The healthcare team may not realize that your answers to their questions may be upsetting to your husband. It would be very reasonable at the next visit to ask the provider if you could speak with him/her briefly without your husband present. You can make sure to let your husband know you are doing that and why you think it is important.
Q: What resources or strategies help manage chronic fatigue in Parkinson’s?
A: Fatigue can be a major non-motor symptom of PD and can be very difficult to treat.
First and foremost, before assuming fatigue is related to Parkinson’s disease, it is imperative to rule out other causes such as anemia or thyroid deficiency. A sleep study may diagnose a sleep disorder which can be treated. A review of all the medications that you are taking (for PD and for other medical conditions) is important, since fatigue can be a side effect of many medications. And finally, daily exercise and activities are crucial to keep the person awake during the day, thereby allowing a more normal sleep-wake cycle. APDA’s publication Fatigue in Parkinson’s disease offers more information and useful tips.
Q: Are there resources or tips for improving handwriting?
A: Yes. Occupational therapists can work with you on improving handwriting.
Having said that, handwriting in general is a lost art today. Most people (with and without PD) no longer write very often with a pen or pencil. (At this very moment I am writing with a keyboard.) Occupational therapists can help you navigate keyboards and other devices that can help you express yourself. Dictation devices can also be used to transfer your spoken words into writing.
Q: Are there treatments for voice/speech issues beyond therapy?
A: There are no medications that help voice and speech. However there are a variety of specialized training/therapy methods to help improve and strengthen voice and speech. Some therapy techniques have been designed specifically for those with PD:
- LSVT (Lee Silverman Voice Treatment) LOUD encourages loud, clear speaking to “reset” the part of the person with PD’s brain that thinks they’re talking at the correct volume when in fact their voice is too low. (There’s also LSVT BIG for movement.)
- Another PD-specific voice therapy is Speak Out. Therapy helps people with Parkinson’s regain and retain their speech and swallowing through individualized speech therapy sessions.
- APDA’s Thriving Through Speech Therapy webinar series might be of interest to those concerned about voice and speech issues.
APDA collaborates with Smart Patients, an online discussion forum where people with PD and their care partners can connect, share advice, and get support from others who understand what they’re going through. Recently we hosted a special “Ask the Expert” session on the Smart Patients platform, an outgrowth of our virtual broadcast Dr. Gilbert Hosts: Ask the Doctor Anything. For three days after that webinar, Dr. Gilbert answered a wide range of reader questions about Parkinson’s diagnosis, symptoms, and treatment, including several she didn’t have time to address live. You can read the previous blogs in this series that focus on questions about early signs and symptoms of Parkinson’s disease as well as the different medications for Parkinson’s.
We encourage you to join the Smart Patients community – it’s free and easy to participate, and you might find it to be a helpful addition to your PD toolkit.
Overall, non-motor symptoms are a major part of PD and deserve attention during visits with your neurologist. Identifying and treating these symptoms can improve quality of life and may reveal other medical conditions that require evaluation.
Tips & Takeaways
- Never hesitate to bring new or worsening symptoms to your doctor’s attention!
- Non-motor symptoms are common and should be discussed with your neurologist
- New or worsening symptoms may warrant evaluation for other causes
- Fatigue can stem from sleep disorders, medications, or other medical conditions
- Occupational therapy and assistive devices can help with handwriting
- Speech therapy programs such as LSVT LOUD and Speak Out can improve communication
Clark Jones, PhD, compiled and organized this blog based on the Smart Patients “Ask the Expert” session featuring Dr. Rebecca Gilbert.