Parkinson Non-Motor Symptom Tips (Detailed Version)
- ALI NAEIMI
- Nov 17, 2024
- 13 min read
Non-motor symptoms can also affect your day-to-day life. Many of these problems remain untreated, as people often do not realize that these changes are linked to Parkinson's disease.
Sleep problems are widespread in Parkinson's: trouble staying asleep (insomnia), REM sleep behaviour disorder, daytime sleepiness, and restless legs.
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 cannot sleep again. Insomnia is mainly caused by changes in the brain brought on by Parkinson's disease, and sometimes, Parkinson's medications (selegiline if taken in the evening). Other causes: pain, stiffness, trouble changing position in bed, or tremor
For many people, medications may not be the best solution. Healthy sleep hygiene can help you get better sleep. Sleep hygiene tips:
Regular bedtimes and wake-up times should be part of a daily routine.
Avoid bright light during daytime hours, especially in late afternoon
Exercise during the day.
Avoid caffeine after 4 p.m. (Caffeine in the morning and at lunch is fine.)
Use your bed for sleep and sex only.
Avoid naps during the late afternoon.
Don't watch the clock. If you cannot sleep for more than half an hour, stay in bed, get up and do something relaxing (e.g. soft music, meditation, light reading) and try to sleep again later.
REM sleep disorder may cause you to act out your dreams. You may shout, talk, punch, kick, or fall out of bed during this stage. You may end up injuring yourself or your bed partner. This often happens in the early morning when people sleep most REM. Typically, your body is paralyzed during REM sleep, which keeps you from acting out your dreams. With REM-sleep behaviour disorder, this normal paralysis is lost. You may not require any treatment if your REM sleep disorder is mild. Consider using bed rails and pillows. You may even need to lay out mattresses beside your bed. If your movements become violent, you may need to sleep apart from your partner until your REM sleep disorder is under control.
Pharmacologic Treatments:
Melatonin is available over the counter. Usually, it does not have many side effects.
Clonazepam often makes a big difference in REM sleep disorder; however, it causes daytime sleepiness and poor concentration.
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. You may have sleep attacks (a sudden desire to sleep) if you have intense sleepiness. This can happen while eating, working, walking or reading. You may even have sleep attacks while driving. Sleepiness is often a side effect of Parkinson's medications.
Try drinking extra coffee or tea during the day (avoid these drinks in the evening).
Poor night-time sleep can make you sleepy during the day
Your doctor might lower the strength of your Parkinson's medication, which can bring back some movement problems.
Your doctor may also ask you to take medication that makes you more alert (e.g. modafinil or Ritalin). Common side effects of this medication are headaches, weight loss and nausea.
Restless legs syndrome (RLS) refers to the urge to move your legs to stop a difficult-to-describe uncomfortable feeling. Moving your legs provides some comfort for a short period. 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.
The cause of restless legs syndrome is not understood. However, evidence suggests that low iron levels in the brain may be to blame, especially in areas of the brain where dopamine is used for smooth movements. Medications for Parkinson's can change the pattern of RLS, such as moving it earlier in the day and making it more severe. Restless legs can be associated with certain chronic conditions, including kidney failure, nerve damage in the legs, pregnancy and certain medications.
If your RLS is mild, you might find that a short walk around the room or reading can help.
Try to avoid caffeine, nicotine and alcohol at bedtime.
Dopamine medications (Levodopa, pramipexole or Mirapex, and ropinirole or Requip), GABA medications (gabapentin (Neurontin) and pregabalin (Lyrica).
Iron supplements - Your doctor may suggest checking the iron levels in your blood. If your iron levels are low, taking iron supplements will help.
Constipation and bowel problems: having less than three bowel movements a week or bowel movements that are very difficult to pass. It may be painful. It may need to strain. You feel as if you cannot empty them. 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, take the laxatives noted above and speak to your doctor.
Constipation is part of Parkinson's disease. It happens when the nerve cells that control bowel movements in your gut die. Some people with Parkinson's can lose control of their stool. However, as constipation is part of the disease, medications are usually not the cause. Constipation is often the first symptom of Parkinson's. Some people may notice it years before having any movement problems.
Drink lots of water (at least six glasses a day).
Eat foods with rich fibre, such as bran fibre, whole wheat products, prunes and prune juice, lentils and beans, and Dried apricots.
Moderate exercise (e.g. brisk walking, swimming, and gardening).
Take bulking agents (e.g. Metamucil) or stool softeners. These can be found at your local pharmacy and bought over the counter.
Take Senna. This mild laxative often helps. It is a natural herb that can be bought over the counter in pill form or as a tea.
Your doctor may recommend other prescription laxatives, such as powders (Lax-a-day, Peg-a-lax) and liquid medication (Lactulose).
Bladder problems: The brain controls the bladder muscles, and those brain centres can be affected by Parkinson's disease. So, bladder problems are part of the disease process.
Over-active (hyperactive) bladder. Urinate very often (every 2 hours or less), bladder several times at night to go to the bathroom.Underactive (hypoactive) bladder: having trouble starting to urinate and feeling that your bladder is not empty after urination.
Follow a routine bathroom schedule. Go to the washroom at regular times during the day.
Take note of the closest washroom. This is important if you are out or in a new environment. Take note of the nearest exit, especially if the washroom is not closed.
Avoid large amounts of liquids and caffeine before bedtime.
Your doctor may suggest anticholinergic medications (Oxybutynin, Tolteridone). Myrbetriq helps with urgency. Desmopressin - a nasal spray that can help with nighttime urination by keeping your body from making urine. Dopamine medications - Sometimes, the medicines you are taking for movement problems can help bladder problems
Feeling faint (sudden drop in blood pressure):
A drop in blood pressure (orthostatic hypotension). Dizziness, Light-headedness, Confusion, Headache, Shoulder and/or neck pain, blackout and fall. Falling blood pressure is part of the disease process. This happens when nerve cells in body areas that control blood pressure aren't working correctly. Although certain Parkinson's medications can make this problem worse, they are not the cause.
Avoid standing up too quickly.
Raise the head of your bed when you sleep. You can do this by putting a book or blocks under your legs. (It has to be the whole bed; extra pillows don't 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 substantial meals can lead to a blood pressure drop).
Be extra careful when standing up after eating.
Wear compression (or support) stockings. These help keep blood from pooling in your legs. Compression stockings can be found in your local pharmacy.
If you are taking high blood pressure medications or other medications that can lower your blood pressure, the first step would be to reduce the strength of these medications. If necessary, your doctor will ask you to stop taking them.
Most people with severe blood pressure drops will need medication, such as Domperidone, Fludrocortisone, Midodrine, Pyridostigmine (Mestinon)
Changes in sexuality are common. Changes can range from a lower (or sometimes higher) sex drive to problems with having an orgasm. Men may find it challenging to obtain or maintain an erection. Women may have less interest in sex or have trouble reaching orgasm. It is also possible for your sex drive to go up after starting dopamine medications. Changes in sexuality can be part of the disease process, as this is caused by dying nerve cells.
Regular exercise helps
Speak with your partner to decide what is best for your relationship.
If sex interests you or your partner, talk to your doctor.
If you are a man, your doctor may suggest medications like Sildenafil (Viagra) or tadalafil.
If you are a woman, your doctor might suggest hormone medication to help with sex drive.
Leg swelling: 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 Parkinson's medications (e.g. dopamine medications). Amantadine medication can sometimes cause colour changes in your legs, along with swelling.
Wear compression (or support) stockings.
Sit with your legs raised. You can prop them up with a pillow.
Parkinson's leg swelling is usually not dangerous.
Heavy sweating: suddenly sweating, even with no exercise. Heavy sweating usually happens during "off" periods. It also can occur during dyskinesia.
Avoid hot or humid environments.
Avoid heavy physical activity in the heat.
Wear clothing that is suitable for the weather.
Pain: Arthritis, lower back pain that causes pain. If you have unexplained pain, especially in the muscles, this may be Parkinson's pain. You may feel Stiffness, cramps, spasms or other muscle pain.
Stretch your muscles.
Have a massage.
Take a warm bath.
Many people have pain during "off" periods (times when the medication is not working well). Your doctor may increase the strength of your medications or change the timing.
If the pain continues, your doctor may suggest you take other pain medications.
Drooling: A buildup of saliva can lead to saliva leaking out of the mouth.
Saliva may pool in your mouth if mild; very little will come out. If you are more serious, you may always have to wipe the sides of your mouth and chin. You may feel your body is making too much saliva, but this is not the case. Instead, drooling happens because your mouth is moving less. This means you are not naturally swallowing your saliva, which builds up in your mouth. Drooling is generally more bothersome than dangerous.
However, it is possible to choke on saliva.
GUM Chewing gum or sucking on hard candy can help(a reminder to swallow).
Medications taken for Parkinson's often lessen drooling.
If drooling is still a problem, your doctor may recommend atropine. One drop of this medication under the tongue can lower how much saliva you make.
Also, it has been suggested you have botulinum toxin (Botox) injections into the saliva glands.
Choking: there is a chance that food can go down the wrong passage and end up in your lungs. This can lead to pneumonia (lung infection). For this reason, speak to your healthcare team if you notice this happening. To avoid choking:
Take extra care to make sure your mouth is apparent before talking.
Chew your food well before trying to swallow.
Eating different textures (e.g. soft or liquid) of foods may help.
Take small bites. Avoid large mouthfuls.
Do not rush your meals.
Medications that treat Parkinson's movement problems can sometimes help with swallowing.
Swallowing therapists (speech therapists or occupational therapists) can help.
For very serious swallowing and choking problems, some people will need feeding tubes to eat appropriately.
Double vision is when you see two of the same thing. This is not a very common Parkinson's problem. Most often, you might have double vision while reading usually caused by underactive eye muscles..
You may need to see an eye specialist.
Your doctor may also strengthen the dose of your medications.
Medications taken for Parkinson's movement problems (levodopa, pramipexol) can help with double vision. They do this by increasing eye muscle movement.
Changes in mental ability and mental health: On its own, this does not mean you have dementia or any other thinking and attention problems. Mild cognitive impairment does not typically seriously affect your day-to-day life. Dementia refers to a much more serious failing of memory and thinking skills that affects day-to-day activities. This mostly happens in the later stages of Parkinson's disease and older people. Changes in mental ability happen as the disease spreads into the parts of your brain that control attention, thinking and memory. Medications used to treat sleep and anxiety problems in Parkinson's (e.g. atropine, oxybutynin, nortriptyline, sedatives) can sometimes cause attention, thinking and memory problems. They might even make them worse.
To prevent dementia:
Healthy eating Exercise
Controlling your blood pressure. (Neither too high nor too low)
Keeping your mind active
Quick and early treatment of diabetes or high cholesterol
Changes in mental ability & health
Medications, such as rivastigmine (Exelon), galantamine (Reminyl) and donepezil (Aricept)
If you are starting to have more serious memory problems, make sure that:
A trusted caregiver has power of attorney.
You can make these arrangements with a notary. In case you are no longer able, a power of attorney will give this person the right to speak for you, arrange your finances, pay your bills and more. Without a power of attorney, the government often must get involved.
You will not be able to change your will if you have severe attention, thinking or memory problems.
Mood and anxiety problems: If you are depressed, you may not be able to experience joy. Life may feel 'flat.' Things may not give you the same pleasure as before. You may always feel tired (although this is possible even in an everyday mood).
Apathy is the feeling of no interest or indifference to things or life. You may not be interested in doing new things. You might stop hobbies you once enjoyed or not want to carry out your daily routines. Apathy may be part of depression but can also be a separate problem. Often, family members feel very frustrated by this.
If you have anxiety, you may find yourself worrying about everyday things, even things that you should not feel anxious about. Some people have bursts of anxiety called "panic attacks." 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. You are breathing just fine. This feeling will pass when your medications kick in again. Living with Parkinson's disease can certainly lead to stress and sadness.
Speak with a psychologist or another mental health professional.
Cognitive behavioural therapy has been shown to help depression, although they have not yet been proven to help depression in Parkinson's.
Dopamine medications (e.g. pramipexole, ropinirole, rotigitine) that help treat movement problems can also improve depression and apathy in some people.
Depression medications (e.g., nortriptyline, Paxil, citalopram) that are used to treat depression in people without Parkinson's also probably work for people with Parkinson's.
Staying connected with friends and family, as well as exercise, can help.
Hallucinations and delusions: Hallucinations and delusions usually happen after years of having the disease. They may be caused in part by your medications. You may not need treatment for very minor hallucinations. Either way, no matter how minor or severe these problems might be, discussing them with your healthcare team is essential. Hallucinations mean hearing or seeing things that are not there. Hallucinations differ from feeling disoriented, having vivid dreams, or having false beliefs. You might notice a spot on the floor or the wall that moves or looks like an insect. If the hallucinations worsen, you may see animals or people. Delusions are false beliefs that are not based on reality or fact. Delusions may happen after you have started hallucinating. They can be related to what you are seeing and be a way that you 'make sense' of it. Examples of common delusions are believing that other people are living in your house, that a spouse is cheating or that something has been stolen. Delusions usually only happen in the late stages of Parkinson's. If hallucinations are a problem, your doctor may try lowering the strength (dose) of some of your medications. If this worsens your movement problems or does not help, your doctor may prescribe new medications (e.g., quetiapine or Seroquel; clozapine or Clozaril).
Trouble controlling impulses (also called impulsive, uncontrolled behaviour (ICDs)) include:
Excessive gambling, Hyper-sexuality, Binge eating, Compulsive shopping, and Carrying out pointless tasks over and over again.
Certain dopamine medications (Pramipexole (Mirapex), ropinirole (Requip) and Rotigotine patch) are most likely to cause you to have trouble controlling your impulses. Since this is usually a side effect of medication, your doctor will lower the strength (dose) of your medications. Sometimes, though, when medications are stopped or adjusted, your movement problems can become worse. If this happens, your doctor may suggest other medication changes.
Make sure that your family and friends are aware that this could be the problem. Ask them to watch out for the signs. This way, they can ensure that your healthcare team is aware and that you can get the help you need.
Changes in taste and smell: Almost all people with Parkinson's will have changes in their ability to smell, and 1 out of 3 people will have no sense of smell. You may also notice changes in taste, as your sense of smell is directly linked to taste. People do not often see these changes immediately as they come on slowly. Generally, this is not a dangerous problem. 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. Since you may be unable to smell dangerous odours, ensure your smoke detectors are installed and always in good working order. There is no treatment for changes in taste or smell.
Nausea usually begins when starting a new medication. It typically goes away on its own with time, even if you stay on the medication. Sometimes, nausea can be caused by slow stomach emptying, which is caused by a disease affecting nerve cells in the stomach. You may also have a stomach ache and/or feel bloated.
Please note that certain nausea medications used by people without Parkinson's (e.g. Stemetil or Maxeran) can make your movement problems worse. For this reason, always speak to your doctor before trying a new medication.
Taking your medications with meals (or a small snack) may help relieve nausea. However, this can slightly reduce the absorption of certain medications, such as levodopa.
Your doctor may prescribe domperidone (Motilium) medication. Domperidone blocks the effects of dopamine in your stomach and intestines without blocking its benefit in your brain.
Weight changes: 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.
Suppose you feel the urge to binge eat (and gain weight). In that case, this may happen after starting certain medications (e.g. pramipexole (Mirapex), ropinirole (Requip) and the retigabine patch). This is because these medications are likely to cause you to have trouble controlling your impulses.
Try taking your meals during "on" times.
You will find it easier to use utensils, and you may also have less difficulty swallowing.
Try high-calorie foods (even sweets are allowed!)
Drink liquid diet supplements (Boost, Ensure)
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