In this blog post, we are going to cover the non-motor symptoms of Parkinson’s disease, how you can recognise them, the strategies to help you manage them, and when you should get more help.
What are the non-motor symptoms of Parkinson’s?
Along with tremor, stiffness and slowness of movement, you may experience other changes with Parkinson’s disease. These changes are known as nonmotor symptoms.
Many of these symptoms go untreated, as people often do not realize that these changes are linked to Parkinson’s disease.
Sleep Problems
Sleep problems are very common in Parkinson’s. They are usually related to changes in the parts of your brain that control sleep. The most common problems are trouble staying asleep (insomnia), REM-sleep behaviour disorder, daytime sleepiness, and restless legs syndrome.
Insomnia
Insomnia is when you find it hard to fall or stay asleep. Most of the time, people with Parkinson’s have trouble staying asleep, more than falling asleep. People often find that they fall asleep quickly, but then wake up too early and are not able to sleep again.
Not taking Parkinson’s medication when you need it can also cause insomnia. This is because stiffness and trouble changing position in bed, pain or tremor can make it difficult to sleep.
Why does this happen?
Insomnia is mainly caused by changes in the brain brought on by Parkinson’s disease. However, some Parkinson’s medications can also cause insomnia.
What can you do?
Creating healthy sleep habits can help you get better sleep.
Below are some healthy sleep tips:
- Maintain a regular bedtime and wake time as part of a daily routine.
- Spend a lot of time in the sunshine during daytime hours, especially in the late afternoon.
- Try to get as much exercise as you can during the day.
- Avoid caffeinated drinks after 4 p.m.
- Use your bed for sleeping only; avoid reading or using any devices in bed.
- Try and avoid taking naps during the late afternoon.
- If you cannot sleep for more than half an hour to an hour, do not stay in bed. Instead, get up and do something relaxing. For example, you can listen to relaxing music or some light reading, then try to sleep again later.
It is important to work on forming healthy sleep habits. If you are still having trouble, speak to your doctor about other treatment options.
REM–sleep disorder
There are 5 stages of sleep. REM (rapid eye movement) sleep is one of these stages. Most dreaming takes place during REM sleep.
During REM sleep, your body is paralysed to keep you from acting out your dreams.
With REM-sleep behaviour disorder, this normal paralysis is lost.
For this reason, REM-sleep disorder may cause you to act out your dreams. You may talk, shout, laugh, kick, or even fall out of bed during this stage. This most often happens in the early morning when people have the most REM sleep.
Many people may have noticed that REM-sleep disorder started even before having any Parkinson’s movement symptoms.
What can you do?
If your REM-sleep disorder is mild, you may not need any treatment.
If you become very active during sleep, you will need to consider bed safety.
Use bed rails and pillows to keep you safe and as still as possible. You may even need to layout mattresses beside your bed if you find that you fall out of bed frequently. If your movements become violent, you may need to sleep apart from your partner until your REM-sleep disorder is under control.
Key Points:
- 1 out of 3 people with Parkinson’s has REM-sleep behaviour disorder. It often starts even before having any Parkinson’s movement problems.
- REM-sleep disorder may cause you to act out your dreams (e.g. talking, kicking, punching, screaming), which can sometimes lead to injuries.
- If REM-sleep disorder becomes a problem, speak to your doctor.
Daytime sleepiness
Daytime sleepiness refers to feeling sleepy or sleeping too much during the day.
If you have mild sleepiness, you may fall asleep when you are inactive. If you have intense sleepiness, you may have “sleep episodes”.
During an episode, you will have a sudden desire to sleep. This can happen while eating, working, walking or reading. You may even have a sleeping episode while driving.
Why does this happen?
There are many reasons why you might feel sleepy. Some reasons are listed below:
- Parkinson’s disease causes changes in brain areas that control alertness. If you have had Parkinson’s for a long time, this is the most likely reason that you feel sleepy.
- Sleepiness is often a side effect of Parkinson’s medications.
- Poor night-time sleep can make you sleepy during the day (However, this is usually not the problem, as most sleepy people with Parkinson’s actually sleep more than normal)
What can you do?
Make sure you are getting enough exposure to the sunshine/light during the day. You don’t have to go further than your garden, or you can take a short walk around your neighbourhood. If you need an extra boost, you can try drinking extra coffee or tea during the day, but it’s very important to avoid these drinks from 4 p.m.
Always avoid driving or operating heavy machinery if you feel even slightly sleepy.
Key points:
- 1 out of 3 people with Parkinson’s feels sleepy during the day
- This can happen while eating, working, walking or reading.
- Always avoid driving or operating heavy machinery if you feel even slightly sleepy.
Restless legs syndrome
Restless legs syndrome (RLS) refers to the uncontrollable urge to move certain parts of the body, in particular the legs, in order to try to stop an uncomfortable feeling. Moving your legs provides some comfort for a short period of time.
Typically, RLS happens when you are sitting or lying down. It tends to be worse in the evening and at night. For this reason, you may have trouble falling asleep.
Why does this happen?
RLS affects 1 to 2 out of 10 people with Parkinson’s. (Interestingly, 1 out of 10 people who do not have Parkinson’s also have RLS.)
RLS can be affected by the medications used for Parkinson’s disease. Parkinson’s medications can change the pattern of RLS, for example moving it earlier in the day, or making it more severe.
What can you do?
If your RLS is mild, you might find that a short walk around the room, or reading for a while can help. Also, try to avoid caffeine, nicotine and alcohol at bedtime.
Problems with bodily functions: Constipation and bowel problems
Constipation is defined as having less than 3 bowel movements a week, or bowel movements that are very difficult to pass. This problem affects 3 out of 4 people with Parkinson’s disease.
Constipation is usually easy to recognize. Bowel movements may be painful. You may also need to strain. Other than the difficulty of moving your bowels, you may also feel that you are not able to completely empty them. You may also not feel that you can completely relax the muscles that hold in bowel movements.
On the other hand, some people with Parkinson’s can lose control of stool. This is, however, not at all common, even after many years of having the disease.
Constipation is often the first symptom of Parkinson’s. Some people may notice it years before having any movement problems.
Why does this happen?
Constipation is part of Parkinson’s disease. It happens when the nerve cells that control bowel movements in your gut weaken. This slows down how food matter passes through your bowels.
Sometimes, constipation can become worse when taking medication. However, as constipation is part of the disease, medications are usually not the cause.
What can you do?
You can manage your constipation by doing the following:
- Drink lots of water (at least 6 to 8 glasses a day).
- Eat foods that are rich in fibre, such as:
- Bran fibre
- Whole-wheat products
- Prunes or prune juice
- Lentils and beans
- Dried apricots
- Do some moderate exercise (e.g. brisk walking, swimming, and gardening).
- Take stool softeners. These can be found at your local pharmacy and bought over-the-counter.
- Take Senna (Senokot) – This mild laxative often helps. It is a natural herb that can be bought over the counter in pill form, or as a tea.
If you regularly have constipation, it is generally safe to take these medications every day.
Although constipation is usually not harmful, very severe constipation can block (obstruct) your bowels. This can lead to other more serious health problems. For this reason, if you have gone 1 week without a bowel movement, speak to your doctor.
Key points:
- Constipation affects 3 out of 4 people with Parkinson’s disease.
- It is the most common first symptom of Parkinson’s. You may have noticed it many years before you had any movement problems.
- To manage constipation, drink water, eat fibre, exercise, and use stool softeners, or safe laxatives.
- To avoid other health problems, be sure to speak to your doctor if you have gone 1 whole week without a bowel movement.
Bladder problems
Bladder problems affect 1 out of 3 people with Parkinson’s. The most common problem is an over-active (hyperactive) bladder. An overactive bladder can cause you to:
- Rush to the bathroom due to not being able to hold it in
- Urinate very often (every 2 hours or less)
- Get up several times at night to go to the bathroom
With Parkinson’s, some may also experience an underactive (hypoactive) bladder. This is not at all as common as an overly-active bladder. If you have an underactive bladder, you can:
- Have trouble starting to urinate
- Feel that your bladder is not entirely empty after you urinate
Why does this happen?
The bladder muscles are controlled by the brain and those brain centres can be affected in Parkinson’s disease. So, bladder problems are part of the disease process.
What can you do?
You can manage your bladder by doing the following:
- Follow a routine bathroom schedule
- Go at regular times during the day. This will help if you have overactive bladder.
- Avoid large amounts of liquids and caffeine before bedtime.
Key points
- Bladder problems affect 1 out of 3 people with Parkinson’s.
- The most common problem is an over-active (hyperactive) bladder.
- An overactive bladder can cause you to:
- Rush to the bathroom when you are not able to hold it in
- Urinate every 2 hours or less
- Get up several times at night to go to the bathroom
- You can manage your bladder by following a regular bathroom routine and keeping note of the closest washroom when you are out.
Feeling faint (a sudden drop in blood pressure)
Some people may feel suddenly faint when they stand up. This faintness is caused by a drop in blood pressure. This is called hypotension. Blood pressure drops affect 1 out of 3 people with Parkinson’s.
A sudden drop in blood pressure can cause any of the following:
- Dizziness
- Light-headedness
- Confusion
- Headache
- Shoulder and/or neck pain
Why does this happen?
Falling blood pressure is part of the disease process. This happens when nerve cells in areas of the body that control blood pressure aren’t working properly. Although certain Parkinson’s medications can make this problem worse, they are not the cause.
What can you do?
You can manage blood pressure drops by doing the following:
- Avoid standing up too quickly.
- Raise the top of your bed when you sleep. You can do this by putting a book or blocks under the legs. It needs to be the whole bed as extra pillows will not help.
- Drink plenty of water to make sure you are well hydrated.
- Watch what you eat. Be sure you are taking enough salt in your meals. Avoid heavy meals (as very large meals can lead to a blood pressure drop). Be extra careful when standing up after eating.
- Wear compression socks. These can help by supporting healthy blood flow. These help keep blood from pooling in your legs. You can purchase compression stockings at your local pharmacy.
Key points:
- Feeling faint is caused by a sudden drop in blood pressure. This is known as hypotension. Blood pressure drops affect 1 out of 3 people with Parkinson’s.
- This usually happens when changing position, typically, when moving from standing up to sitting or lying down position.
Leg swelling
Leg swelling is a common problem for people with Parkinson’s. When this happens, your lower legs become bigger.
Why does this happen?
Many non-Parkinson medications (e.g. heart medications) or other health problems can cause leg swelling. So, it should not be assumed that leg swelling is related to Parkinson’s. However, legs can also swell as a side effect of some Parkinson’s medications.
What can you do?
You can manage leg swelling by doing the following:
- Wear compression socks. These can help by supporting healthy blood flow. These help keep blood from pooling in your legs. You can find these in your local pharmacy.
- Sit with your legs raised by propping them up with a pillow.
- If the problem persists, speak to your doctor so that they can review your medication to find the cause.
Heavy sweating
You may find yourself suddenly sweating, even with little to no exercise. Or, you may notice heavy sweating after only mild exercise.
Heavy sweating affects 1 in 3 people with Parkinson’s.
Why does this happen?
Heavy sweating usually happens during periods where medication may be wearing off. It can also happen during dyskinesia, as in many ways, these extra movements are a form of exercise for your muscles.
What can you do?
To help limit how much you sweat:
- Avoid hot or humid environments.
- Avoid heavy physical activity in the heat.
- Wear clothing that is suitable for the weather.
Key Points:
- Heavy sweating affects 1 in 3 people with Parkinson’s.
- It can also happen when you have dyskinesia (increased movements), as in many ways, these extra movements are a form of muscle exercise.
- To help limit how much you sweat: avoid hot or humid environments; avoid heavy physical activity in the heat; wear clothing that is suitable for the weather.
Choking and trouble swallowing
Some people may notice more difficulty in swallowing. This can happen while eating or drinking, or simply swallowing saliva. If it is mild, you may not notice this at all. If more serious, you may have trouble eating. You may also choke on food.
Problems with swallowing usually happen at later stages of the disease.
Why does this happen?
The action of swallowing is in fact very complex. You need a high level of muscle coordination to swallow. Many areas in the brain are responsible for it. Swallowing problems are part of the disease process. This happens when nerve cells in the areas of the brain that control swallowing don’t work well.
What can you do?
Try the following to help manage trouble swallowing:
- Chew your food well before trying to swallow.
- Take small bites. Avoid large mouthfuls.
- Do not rush your meals.
To avoid choking:
- Take extra care to make sure your mouth is clear before talking.
- Eating different textures (soft or liquid) of foods may help. (Discuss this with your doctor before making any diet changes)
Changes in mental ability and mental health
Some people may have some trouble with attention, thinking and memory. (This is known as mild cognitive impairment.)
MCI is a condition in which an individual has mild but measurable problems with memory, language, thinking or judgment that are noticeable to the person affected and to family members and that are greater than normal age-related changes.
It is perfectly normal to have occasional memory lapses and to lose things. It is normal to forget why we have gone upstairs, or to come back from a shopping trip without the very thing we went for. It is normal to have to search our brain for a name, sometimes. Our normal memory may suffer from impaired function through inattention, information overload or mild depression from time to time.
Dementia is a syndrome affecting higher functions of the brain. There are a number of different causes. Cognitive decline, specifically memory loss alone, is not sufficient to diagnose dementia. There needs to be an impact on daily functioning
Keep in mind that forgetting some information sometimes is normal as we age. On its own, this does not mean you have dementia or any other thinking and attention problems.
Common cognitive problems include:
- Paying attention or concentrating (trying to focus on what you are reading)
- Following a complicated conversation, or solving complex problems
- Planning events (organising a busy day)
- Forming thoughts quickly
- Properly perceiving/interpreting things you see
- Remembering events or details of events
Why does this happen?
Changes in mental ability happen as the disease starts to spread into the parts of your brain that control attention, thinking and memory.
What can you do?
Speak to your doctor if memory and decision-making problems start to affect your daily routines.
Key Points:
- Not all Parkinson’s patients get cognitive troubles.
- Common changes include problems with memory, planning, attention, and slowing of thoughts.
- Be sure to tell you doctor about all the medications you are taking. Some medications can sometimes cause attention, thinking and memory problems or make them worse.
- Forgetting some information sometimes is normal as we age.
- On its own, this does not mean you have dementia or any other thinking and attention problems.
Mood, Anxiety, and Apathy
Mood and anxiety problems affect 1 out of 3 people with Parkinson’s.
If you are depressed, you may not be able to experience joy. Things may not give you the same pleasure as they once did before. You may feel tired all the time (although feeling tired can happen even with normal mood).
If you have anxiety, you may find yourself worrying about everyday things, even things that you should not feel anxious about (e.g. your doctor’s appointments!) Some people have bursts of anxiety called “panic attacks”.
Apathy is the feeling of no interest or indifference to things or life in general. You may not be interested in doing new things. You might stop hobbies that you once enjoyed, or not want to carry out your day-to-day routines. Apathy may be part of the depression, but can also be a separate problem. Often, family members can feel very frustrated by this.
Depression and anxiety can sometimes begin before you have any movement problems.
Why does this happen?
Living with Parkinson’s disease can certainly lead to stress and sadness. However, depression may also be caused by changes in areas of the brain that affect mood.
Panic attacks and anxiety can also happen during periods when your medications wear off. When your medications wear off, the muscles in your chest wall can tighten. Your body may sense this as being squeezed. When this happens, you may feel short of breath. While this may be unnerving, do not worry as this feeling will pass when your medications kick in again.
What can you do?
The support of your friends and family can make a big difference in preventing or managing the effects of depression and anxiety.
As much as you can, keep yourself active and engaged with others.
In some cases, you may find it helpful to speak with a psychologist or another mental health professional. Certain types of psychological therapy (such as cognitive behavioural therapy) have been shown to help depression.
Key points:
- Mood problems affect 1 out of 3 people with Parkinson’s.
- This happens when Parkinson’s disease affects areas of the brain that control mood.
- Depression and anxiety can sometimes begin before you have any movement problems.
- Anxiety can occur during periods when your medication wears off, and can give you the false impression that you are having trouble breathing.
- Staying connected with friends and family, as well as exercise, can help.
- Speak to your doctor if you are having mood problems.
Changes in taste and smell
Almost all people with Parkinson’s will have changes in the ability to smell, and 1 out of 3 people will have no sense of smell at all. You may also notice changes in taste, as your sense of smell is directly linked to taste.
People do not often notice these changes right away as they can gradually appear over time. You may notice that you have difficulty making sense of smells. You may also have trouble telling two smells apart. Others may notice that their food tastes bland or they aren’t able to smell the strong odours that other people around them can.
Why does this happen?
Loss of smell is part of Parkinson’s. This is caused by dying cells in areas of your brain that control your sense of smell. Changes in smell often happen years before you notice any movement problems.
What can you do?
You might notice a loss in appetite. It is important to continue eating a full and balanced diet all the same.
Also, since you may not be able to smell some dangerous odours, be sure that your smoke detectors are installed and are always in good working order.
Unexplained changes in weight
Many people with Parkinson’s notice changes in their weight. In general, weight loss is more common than weight gain. It is common for people with advanced disease to lose weight despite eating more.
Why does this happen?
We still do not understand the exact reasons for Parkinson’s weight changes. It could be related to nausea which is caused by your medications. It can also be caused by dyskinesia (increased movements). That said, weight changes can be seen even if you do not have dyskinesia or nausea.
What can you do?
Try taking your meals during “on” times (when the medication is working well). You will find it easier to use utensils and you may also have less difficulty swallowing.
If you require additional support or would like to speak to a member of our medical team, please feel free to contact us or fill in the “Ask us a question” found on this page.