Ask anyone about Parkinson disease and they will immediately think shaking and perhaps, a shuffling gait.  Rarely, will anyone think of the nonmotor symptoms that frequently precede the onset of motor signs.  Yet, these nonmotor symptoms increase in the number of symptoms and severity throughout the course of PD.  In the past, neurologists also focused on the motor features of PD.  We now know that nonmotor features become increasingly bothersome to our patients and have significant impact on quality of life. 

The nonmotor symptoms of PD reflect the global involvement of the nervous system.  While past efforts to treat PD revolved around the substantia nigra and dopamine, scientists now realize that PD encompasses many brain functions and neurotransmitters. 

One of the earliest symptoms of PD can be REM sleep behaviour disorder (RBD). This is characterized by vivid dreams and sleep enactment During REM sleep, we should be paralyzed and unable to act out our dreams.  In some PWP, sleep paralysis does not occur and so, the dreams are acted out.  Bed partners often describe, “he was shouting at his old business partner” or “she was running away from something frightening”.  This can result in injury to the bedpartner or PWP.  Treatments include ensuring that medications that can worsen RBD are stopped or minimized, other existing sleep disorders like sleep apnea are treated and safety measures. 

On the opposite side of RBD, is daytime sleepiness.  This can affect up to 55% of PWP.  In its mildest form, it can be annoying but in severe forms, can make operating a car or machinery dangerous.  Daytime sleepiness can also cause social withdrawal.  Ensuring that sleep is adequate at night, that medications that worsen daytime sleepiness (dopamine agonist more than levodopa) or cause sedation (pain medications and some antidepressants) are optimized. 

Apathy is described as lack of motivation resulting in decreased goal-directed behavior and characterized by reduced interests or emotions.  Apathy is frequently mistaken for depression by families or alternatively, contrariness on the part of the PWP.  It is a great source of conflict between spouses and PWP.  Apathy is a common feature of the changes in personality for PWP based on changes in how the brain functions.  We are learning more about apathy through special radiology tests.  Apathy is often associated with cognitive decline both clinically and in special radiology tests.  Treatment can be behavioural (making routines) and recently, medications that improve thinking and memory have improved apathy although this is an early stage of research. 

Many nonmotor symptoms are due to involvement of the autonomic nervous system.  This part of the nervous system controls “automatic” function such as heart rate, blood pressure, bowel function and bladder function.  Problems with blood pressure result in early supine hypertension (high blood pressure) and standing hypotension (low blood pressure).  This can result in feeling faint, actually fainting or fatigue and fluctuation in the clarity of thinking.  Measuring blood pressure first thing in the morning both lying down and then after standing 3 minutes is important.  If the blood pressure falls more than 20 mmHg or the standing blood pressure is less than 90 mmHg systolic, treatment will need to occur.  Simple treatments can work such as drinking enough water, checking blood pressure pills and timing.  Other measures such as wearing pressure stockings or stomping your feet before standing can help increase blood pressure.  If these non-pill methods don’t work, using specific medications to raise blood pressure may be necessary. 

Swallowing is often affected for PWP.  If we wait until someone is choking on water or food, we will miss opportunities to make drinking and eating safer.  Bedside tests can be helpful such as swallowing tablespoons of water to check for swallowing effort or coughing.  The gold standard for swallowing remains a special x ray where the speech language pathologist will give various consistencies of liquids and solids for you to swallow.  The x-ray allows the radiologist and speech language pathologist to assess how your swallowing works and make recommendations to improve safety.  Another possible test is endoscopy where a probe that has a camera is inserted in your throat, again with the goal of watching how you swallow. 

Simple treatments for swallowing include reducing distractions during eating (we are all guilty of watching TV during dinner sometimes or having a lively debate while trying to swallow), avoiding foods like dry, crusty bread or nuts and instead using nut butters, taking a few sips of water after swallowing each bit to lubricate your mouth and help the food go down, cutting food in small pieces and chewing thoroughly before swallowing. 

Finally, constipation is a nearly universal problem for PWP.  Daily bowel movements are possible for PWP and the sooner you start to address it, the better.  There are a number of dietary changes that you can make to improve your bowel routine:  Drink lots of water, eat high fibre foods and more legume and beans (high in digestible fibre).  By contrast, using psyllium may worsen constipation as psyllium relies on normal bowel function in order to work.  PWP have slower moving bowels and therefore, for psyllium to work, you would have to drink a ton of water!  Exercise also improves bowel function.  As an added benefit, exercise is great for PWP so get moving!  If these are not successful, try PEG 3350 once up to 4 times/day.  If necessary, Senokot, a laxative, can be helpful.  For those with more severe constipation (no bowel movement for 3 days), they may want to discuss with their clinician trying Dulcolax.   

This is just a snapshot of some of the nonmotor symptoms that can impact the daily life of someone living with Parkinson’s.  Not all of them require a new medication and making changes in daily routines, sometimes just small changes, can improve quality of life. 

Janis M. Miyasaki, MD, MEd, FRCPC, Director, Parkinson and Movement Disorders Program and Co-Director, Neuropalliative Care. Dr. Miyaski has spoken at past World Parkinson Congresses and will be speaking on Palliative Care and Parkinson’s in May at the WPC Virtual Congress.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®