Management of PD​

Table of Contents

Medication

Your drugs do one or more of the following:

Increase the amount of dopamine in the brain

Act as a dopamine substitute, stimulating the parts of the brain where dopamine works

Block the action of other factors (enzymes) that break down dopamine

What medication will I take and when will I start?

When you receive your diagnosis, you and your specialist will make a decision about whether to start treatment straight away or wait until your symptoms progress. Medication in early onset might be delayed if symptoms are very mild and they are not impacting on your daily life.

When you start medication, you will be given specific instructions on when to take it and if it is to be taken with or without food.  This information is important to ensure the medication’s effectiveness.

You may be prescribed levodopa, dopamine agonist or a MAO-B inhibitor. Which medication you take depends on how much your symptoms affect you and other factors such as your age and your lifestyle. Most people find they tolerate their treatment well and will return to their specialist for review. This is when your specialist or Parkinson’s nurse will increase or decrease the doses or frequency, or add new drugs, until your symptoms are as well-managed as possible.

Before leaving the clinic you should get the contact details of your Parkinson’s nurse or the clinic’s phone number in case you have any problems with side effects. It is important that you are aware of any changes you are experiencing and it might be helpful to keep a log of this for the first couple of weeks.

Every person with Parkinson’s has a different experience of the condition, so your specialist, Parkinson’s nurse or pharmacist will work with you to find the best combination of treatment that is best for you as an individual.

Finding the best drug, dose and timing won’t happen straight away. Your treatment regime will usually need adapting as your Parkinson’s symptoms change over the years.

Planning a medication routine is something that should be a joint decision between you and your healthcare professionals. If you are prescribed medication, make sure you ask about what you are taking, when to take it, and any side effects.

Like any drugs, medication for Parkinson’s can have side effects. This means that some things you may think are Parkinson’s symptoms could be side effects of your medication.

Below we have listed some side effects that are important to be aware of. Medication affects everyone differently; it is important to follow the instructions and never to suddenly stop taking your medication without medical advice.

People who experience impulsive and compulsive behaviours can’t resist the temptation to carry out an activity – often one that gives immediate reward or pleasure. Behaviours may involve gambling, being a ‘shopaholic’, binge eating, internet usage or focusing on sexual feelings and thoughts. This can have a huge impact on people’s lives including on family and friends.

Not everyone who takes Parkinson’s medication will experience impulsive and compulsive behaviours, so these side effects should not put you off taking your medication to control your symptoms.

If you have a history of behaving impulsively you should mention this to your GP, specialist or Parkinson’s nurse.

Asking your specialist to make changes to your medication regime or adjusting the dose that you take is the easiest way to control impulsive and compulsive behaviours. So if you are experiencing this side effect, tell your healthcare professional as soon as possible to avoid the problem getting worse.

Some Parkinson’s medications can make you very sleepy. Sometimes this happens suddenly and without warning. Make sure you know what safety precautions you need to take – if you can drive, for example.

Sometimes it can be hard to know whether your sleep problems are part of the condition or whether they are a side effect of your Parkinson’s medication. It’s important to talk to your healthcare professionals to find out the cause of these problems.

There are some Parkinson’s medications that can make your blood pressure fall very quickly, causing you to feel dizzy or faint, particularly if you have had low blood pressure in the past. Increasing the amount of liquid you drink can help. Your specialist or Parkinson’s nurse will be able to prescribe medication to ease this side effect and give you other tips, so be sure to speak to them for more advice

Speech & Language Therapy in the Management of Parkinson’s

Assess, diagnose and manage any difficulties in the areas of;

  • Speech
  • Language
  • Voice
  • Swallowing
  • This can involve; formal diagnosis using standardised tests, subjective assessment and/ or
    diagnostic therapy

Please note, all of the below do not affect all clients or to the same level or at the same stage post
diagnosis.

  • Mumbled, imprecise or unclear words (dysarthria).
  • Reduced rate of speech
  • Rapid rate of speech.
  • Stammering and stuttering (dysfluency or palilalia).
  • Reduced facial expression.
  • Reduced volume of voice (hypo-phonia).
  • Difficulty word-finding or structuring sentences.

 

  • Dysarthria occurs when the muscles you use for speech are weak or you have difficulty controlling them.
  • Dysarthria often causes slurred or slow speech that can be difficult to understand.
  • Dysarthria in Parkinson’s disease can be characterised by
    • monotony of pitch and loudness,
    • reduced stress,
    • variable rate,
    • imprecise consonants,
    • a breathy and harsh voice.
    • This is articulatory and phonatory impairment.
    • SLT will assess
    • the muscle function
    • Perform a perceptual speech assessment
    • Gain the client’s and next-of-kin’s perception of their speech

Be aware of how you sound. Monitor the clarity of your speech.

  • When do you sound better or worse? Is it fatigue or medication related?
  • Eliminate background noise when engaging in conversation (turn off the television, radio etc).
  • Use a loud, clear voice.
  • Over-articulate your words.
  • Reduce your rate of speech.
  • It is a speech disorder that can resemble neurogenic stuttering/ stammering.
  • Associated with PD and other Parkinsonian conditions, palilalia presents as an involuntary repetition of
    syllables, words or phrases with increased speed and decreased volume and clarity.
  • Often similar to tremor, this can be exacerbated when nervous, in new environment and/ or timing of
    medications.
  • Pacing- subtle taping of finger or hand to regulate your speed of speaking. A pacing board may be
    used.
  • Controling breath support- taking slow, calm, relaxed breaths and making sure you have enough breath
    for speaking.
  • Reducing rate of speech- this is the most effective strategy in improving all areas of speech.

  • Speech and voice impairments are common among those living with Parkinson’s. As many as 90% of
    people with Parkinson’s experience difficulties such as “hypophonia” (soft speech) or a more monotone,
    raspy or breathy voice (Duffy, 2005).
  • One reason is directly related to the disordered motor system that accompanies PD, including rigidity,
    slowness of movement and tremor. For example, the poor muscle activation that leads to bradykinesia
    (slow movement) and hypokinesia (small movements) in the limbs can translate to the muscles involved
    in speech. These problems with muscle activation can result in reduced movements of the respiratory
    system (reduced breath support), larynx (reduced vocal loudness) and articulation (reduced clarity of
    speech).
  • Another cause of speech and voice impairment in PD is a change in sensory processing that is related to
    speech. It is believed that people with PD may not be aware that their speech is getting softer and more
    difficult to understand. When people in this situation are asked to bring their voice to normal loudness,
    they often feel as though they are shouting, even though they are perceived by listeners to be speaking
    normally.
  • Keep your vocal chords moist and lubricated. Sip plenty water throughout the day.
  • Do not shout.
  • Avoid making sound effects with your voice.
  • Do not cough and clear your throat, instead swallow and take a drink of water.
  • Have periods of voice rest, particularly if demand on your voice is high.
  • Avoid environments with smoke, fumes, strong odours or chemicals.
  • Avoid cough sweets and lozenges.
  • Slow down, speak, clearly and slowly (see slide on dysarthria).
  • *Amplifier- may be used in loud environments (e.g.- public speaking, teaching etc)
  • Lee Silverman Voice Treatment.
  • TARGET: Vocal Loudness (amplitude) These strategies are consistent with the most effective, evidence-based strategies for learning and
    neuroplasticity (the brain’s ability to change).
  • MODE: Intensive Dosage and High Effort.
  • Intensive and high-effort treatment that encourages people to achieve more by always working harder
    (e.g., “louder, longer”). Sessions are delivered one-on-one and tailored to your individual communication
    goals.
  • CALIBRATION: Generalization
    •  “Recalibrating” sensory feedback so people recognize their new, louder voices are within normal limits.
      This increases the likelihood that people with PD will feel comfortable with and use their louder voice at
      home, work and play.
  • 1 session per day 45-60mins.
  • 4 sessions per week 
  • 4 weeks 
  • Home-work and carry-over activities.
  • Hierarchy-
    • Loud, clear ‘Ah’.
    • Word lists.
    • Phrase lists.
    • Personally relevant phrases.
    • Paragraph reading
    • Generalise to conversation.

Cognition is a general term that refers to the mental abilities that we use to process information and apply
knowledge. These mental processes allow us to perform daily functions such as paying attention, solving problems,
and remembering where items are and how to do certain tasks. When people typically talk about cognition, they
often focus on “memory,” but “memory” is only one aspect of cognition.

  1. Attention and working memory:
    •  Attention is the ability to selectively focus on a particular aspect of one’s environment, often while ignoring competing stimuli. In PD,
      people may find it difficult to concentrate on a conversation or reading a book. It may be challenging to talk to someone while
      walking and maintaining balance.
    • Working memory refers to the memory process of temporarily storing information in one’s mind and manipulating it over a short
      period. Mental arithmetic is one example of working memory function. These cognitive processes are often linked to alertness.
      Sleepiness and sedating medications can impair attention and working memory function.
    • These cognitive processes involve the frontal and parietal lobes in the brain. Working memory also involves the basal ganglia and
      dorsolateral prefrontal cortex, regions affected in PD.
  2. . Executive function:
    • Executive function includes the ability to plan, organize, initiate, and regulate goal-directed behaviour. These activities may include
      multitasking, solving problems, starting new tasks, and switching tasks. Executive function involves the prefrontal cortex of the brain
      and the dopamine system, which are affected in PD. Executive dysfunction is one of the most common cognitive changes reported
      in PD.
  3. Memory: invokes learning and remembering information. Memory can be classified into different processes and
    types.
    • immediate (seconds-minutes),
    • short-term (minutes-days)
    • long-term memory (days-years).
    • There also is memory for facts, concepts, or events (called declarative memory).
    • Memory for how to do certain tasks like tie our shoes or ride a bicycle (called procedural memory) as well as working memory
      (described earlier).
    • Declarative memory typically involves the hippocampus or temporal lobe of the brain, whereas procedural memory often involves the
      frontal areas and basal ganglia.
  4. Language:
    • Language abilities include naming objects, generating words, comprehension, and verbal concepts. The most common language
      problem in Parkinson’s Disease is finding the “right” words. People with Parkinson’s disease also tend to speak less overall (in addition to
      softer voice) and use simpler speech.
  5. Visuospatial function:
    • These abilities tell us where things are around us in space, give us a spatial map of our environment, and involve our sense of direction.
      Visuospatial functions allow us to estimate distance and depth perception, use mental imagery, copy drawings, or construct objects
      or shapes. Examples include being able to give someone directions to your house by tracing the route in your mind, avoiding
      obstacles in one’s path, and putting together a puzzle. These abilities rely on the parietal lobe of the brain.
  • Maintenance Tasks and Activities:
  • Cross words 
  • Word searches
  • Reading books, magazines and newspapers.
  • Brain-storming 
  • Maintenance Tasks and Activities:
  • Cross words
  • Word searches
  • Reading books, magazines and newspapers
  • Brain-storming
  • Word association games and puzzles
  • Writing lists, notes, letters and emails
  • Word association games and puzzles
  • Writing lists, notes, letters and emails
  1. Dysphagia is a term which means any interference to food, drink or saliva as it travels from the mouth to 
    the stomach.
  2. Aspiration is where diet, fluid or saliva particles enter the airway (trachea).
  3. It is usually marked by a cough (overt aspiration) or can be silent.
  4. Dysphagia occurs in Parkinson’s due to reduced oral muscle function and reduced oral and pharyngeal
    (throat) sensation.
  5. Poor postural and breath support can worsen the situation.
 

Signs of dysphagia: Contact your local SLT.

  • Difficulty chewing certain foods
    ◦ Avoidance of foods you once loved
    ◦ Coughing or choking during or immediately after mealtimes
    ◦ Eye-tearing or discomfort when eating or drinking
    ◦ Wet and gurgly breathing or voice when eating or drinking.

 
  • Slow rate of intake of all diet and fluid.
  • Good supportive posture when eating or drinking.
  • No speaking when eating or drinking.
  • Avoid distractions at mealtimes.
  • Do not over-stuff your mouth.
  • Following seeing a SLT, you may be prescribed a modified diet or fluid.
  • Complete regular, careful oral hygiene to reduce oral infection and risk of aspirating this bacteria or
    fungus (oral thrush). 
  • A drink to accompany all diet.
  • Do not lie down immediately after eating or drinking. Remain upright approx. 20minutes following a
    meal.
  • Weighted cutlery or cups/ mugs may help regarding tremor at mealtimes.
 

  1. HSE- via your local Primary Care Team. Your GP, Public Health Nurse,
    Clinical Nurse Specialist or Consultant may refer to your local service.
    This is a free service and waiting times vary throughout the country.
  2. Private Speech and Language Therapy- make sure the therapist you
    choose is registered and familiar with working with Parkinson’s Disease. 
  3. In acute setting when having a neurological review or as an inpatient.
    ◦ Associations and support groups- local groups often hire SLTs to
    complete therapy activities with their members.

Sleep and the Management of Parkinson’s

  • REM sleep behaviour (RBD)
  • Daytime sleepiness
  • Insomia
  • Restless leg syndrome
  • Exposure to natural light early in the morning and in the afternoon
  • Exercise in the morning/early afternoon (exercise is good for muscle tone, tiring you to sleep at night, good for cognition)
  • Exposure to twilight
  • Dim the lights in the evening
  • No heavy meals/alcohol right before bedtime
  • No stimulants (coffee) in late afternoon/evening
  • Dark room, Quiet room, Cool room, Comfortable bed
  • No blue light/screens before bed, no television in bedroom
  • Reduce liquid/fluid intake before bedtime, reduce need for trips to toilet
  • If required, put a commode near bed to prevent falls
  • Cognitive therapy
  • Exercise
  • Meditation
  • Light therapy
  • Talk to GP about sleep symptoms
  • In the future Chronobiology may be part of the treatment.

Mouth and dental issues

Some people with Parkinson’s may have problems with their mouth and dental health.

A healthy mouth will help you to chew, taste, swallow and speak properly. Strong, healthy teeth allow you to enjoy your choice of food.

Parkinson’s symptoms and Parkinson’s medication might cause some problems with your dental and mouth health (sometimes called oral health).

These can include:

  • dry mouth
  • difficulty swallowing
  • drooling
  • difficulty in controlling dentures
  • difficulty cleaning your teeth
  • increase in tooth decay.

 

Dry mouth (xerostomia)

Saliva is really important for good mouth health:

  • It helps you taste your food.
  • It lubricates food to help you swallow. 
  • It is antibacterial and has enzymes to help you eat and digest food.

Without enough saliva you may experience a dry mouth. A dry mouth can lead to higher rates of tooth decay and gum disease. It can increase your risk of getting tooth decay in the exposed roots. It may also cause dentures to become loose and hard to control.

A dry mouth can also increase the damaging effects of sugar on your teeth. Because of this it is important to watch what you eat and when you eat.

Some Parkinson’s drugs can reduce the flow of saliva to your mouth. Tell your dentist if you experience this as they can discuss options which might help. They may ask you what drugs you take, so take a list of your medication to your appointments.

Tell your GP, neurologist or Parkinson’s Nurse too as they may be able to prescribe different treatments that may not cause this problem. Saliva substitutes are also available. You can ask your dentist or local pharmacist about them.

The following tips may help reduce dry mouth.

Do:

  • try to take frequent sips of water
  • chew sugar-free gum
  • use lip salve to protect your lips if needed
  • remove dentures at night to give your mouth a chance to recover
  • eat a healthy, balanced diet

If you are thinking about changing your diet, a dietitian will be able to help you. You can ask your GP about this.

Don’t:

  • smoke – it makes the dryness worse
  • use mouthwashes that your dentist or doctor have not prescribed – they may contain alcohol, which can increase dryness
  • suck sugary sweets to increase saliva – this will increase decay and other mouth problems
  • sip sugary drinks between meals – this will also increase decay and other mouth problems

Burning Mouth

Some people with Parkinson’s complain of a burning mouth feeling. This can be due to a dry mouth or taking levodopa. If you experience this, speak to your dentist or health professional.

Swallowing difficulties

If you have Parkinson’s you might experience swallowing difficulties because your jaw and face muscles have weakened. This can also affect how well you can chew.

 

Drooling is common for people with Parkinson’s. You may experience this because you cannot swallow as well as you used to.

Drooling happens if you swallow less because saliva pools in your mouth and may overflow from the corners of your mouth.

Drooling can lead to a sore mouth and your posture might make it worse. Those who have a stooped, head-down position can find it hard to seal their lips. This can make it harder to control saliva flowing from the mouth. So it’s important to speak to your health professional for the right help and support.

You can also try these simple exercises at home in front of a mirror to try help prevent drooling. They’ll help you become more aware of what your lips are doing and how tight you need to hold them closed to keep saliva in.

  • Close your lips as tightly as possible and hold for a count of 4, relax, then repeat 5 times.
  • Smack your lips together.
  • Stretch your lips in a wide smile, hold for a count of 4 and relax.

In addition, you can try aids to help you to remember to swallow. For example, a device with a timer that prompts you to swallow. Your Parkinson’s nurse can help you find a device that is right for you. A speech and language therapist may also be able to help.

It is important to visit the dentist regularly. This will identify and treat issues quickly and prevent them from getting worse.

Your dentist will advise you how often you need a check-up. Get any specific problems looked at between appointments.

There are cleaning techniques and equipment that can make good dental and mouth health easier if you have Parkinson’s. For example, a toothbrush with a bigger handle may give you a better grip. Ask your dentist for advice on what is right for you.

If you’re unable to get to your dentist, ask if home visits may be possible. Many dentists do them or they can refer you to a colleague who does. Alternatively, they can give you information on how to get help.

Will my Parkinson’s mean I need to see a specialist dentist.

It’s important to tell your dentist that you have Parkinson’s and how it affects you.

Most dentists will be able to treat people at all stage of the condition.

But tell your dentist about issues you experience because of Parkinson’s. For example, you may find you move a lot during an appointment if you have a tremor or dyskinesia.

Meeting your neurologist

Most people living with early onset Parkinson’s disease see their neurologist every three to six months initially, then every six to 12 months. However, if you are experiencing severe symptoms or have issues with your treatment, more frequent visits may be required. As Parkinson’s is a complex disease, which can be difficult to diagnose – particularly in early onset – it can go undiagnosed for quite some time. 

Due to the range of symptoms, and an individual’s response to medication, treating Parkinson’s can be complex. Being prepared before visiting your neurologist will help you to get the most out of your appointment. It is a good idea to write questions down or complete the following checklist to help you to remember everything you want to ask or tell your neurologist. 

You can either fill out the form online and then send it to your email or right click to save it to your PC ready for printing. There are a lot of symptoms included on the checklist that not everyone experiences. It may be helpful to keep a copy of form you complete for your own record.

Questions to help you get the most from your visit to your Neurologist

Before an appointment:

  • Complete a list of all of your current medications – including medication you take for other conditions. Include other routine medications like anti-inflammatories, blood pressure and cholesterol medications, and even vitamin and mineral supplements. Also include the number of times per day you take your medication.
  • It may be helpful to make notes of your symptoms a week or two before your appointment with your neurologist. In addition to Parkinson’s symptoms, include any other health complaints that may or may not be related – particularly your moods. Sometimes a video may capture a symptom that can be difficult to describe. It is important to note other changes since your last visit like such as surgeries, changes in health or your living situation.
  • If not completing the questionnaire, prepare a list of questions and concerns you would like to address during your appointment. Rank them in order of importance to you, so if you run out of time you will at least have covered off the most significant questions.
  • If possible, have somebody accompany you to the appointment. It is useful to have another set of ears who can later compare notes with you to confirm or clarify your understanding of the information that you received.
  • Both you and your appointment partner should make notes during the session to ensure a complete record of the information. If you ask permission, you may also be able to record the discussion on your smartphone.

After your appointment:

  • Be sure you understand your treatment plan and any changes made to it, particularly medication changes. If new medication has been added, be sure you know what the medication is supposed to do, how much to take and when. Ask about potential side effects and what to do if they occur. Also have your prescription renewed so you do not have to go back to your GP for renewal.
  • If you don’t understand something, it is important to ask. Don’t be afraid of asking a ‘silly question’ or asking your neurologist to explain something in a different way. Your relationship with your neurologist is likely to last a long time so full disclosure and trust are important.
  • If possible, make an appointment for your next visit.

Before you leave your appointment:

  • As soon as possible after your appointment, compare notes with the person that accompanied you. This helps to establish a common understanding of what was discussed and recommended for you.

Exercise

We all know how important exercise is to our overall health. When you are living with Parkinson’s disease, staying active can actually help slow the progression of the condition. Many of the symptoms associated with Parkinson’s can also be better managed with exercise. Find an activity you like as there’s more chance you’ll stick with it. Regular exercise can help improve your strength, balance, posture and flexibility, and keep your heart and lungs healthy.

How can exercise help people with Parkinson’s?

The right exercise can help people with Parkinson’s remain physically activity and reduce discomfort from pain and other symptoms affecting mobility. Exercise done in a group setting can contribute to living a more sociable and active lifestyle, and help improve sleep. It can even assist with issues that many people don’t talk openly about, such as constipation or problems with mood. 

Many people with Parkinson’s also talk of exercise as a way of taking back some control in order to manage their symptoms, with some going as far as to say it helps them “fight back” against the condition. It is recommended to do at least 2.5 hours of exercise per week.

What is the best type of exercise for Parkinson’s?

As Parkinson’s affects everyone differently, there is no one perfect exercise to suit everyone. Professionals recommend varying the types and intensity levels of the exercise you do. This approach will help you to stay active in a way that works for you and your condition. 

If your symptoms are mild, focus on vigorous exercise such as gym sessions, running, cycling, tennis, circuit training or high-intensity workout classes. There are now many online classes that are a good option for people who are motivated by sticking to a schedule.

You may choose a form of exercise that targets specific symptoms, like balance or strength, or take a more general approach to improve your overall health and well-being. Exercises such as yoga, tai chi, pilates and table tennis are ideal for improving strength, balance, mobility, coordination and flexibility. Taking regular brisk walks and gardening are also good forms of exercise.

Remember, the best type of exercise for you is one that helps you to feel good, and remain as fit and well as possible so you can manage everyday life. 

It is important to do a variety of exercises that will work on the upper and lower body for strength and flexibility. Balance exercises are also beneficial for the management of Parkinson’s disease. Talk to a physiotherapist or your health professional who knows about Parkinson’s for more advice and to plan the right exercise for you, especially if you’re just getting started.

Check out these videos of some of our members talking about how exercise helps them manage Parkinson’s.

Nigel likes kayaking and makes good use of the lakes close to his home. He finds the exercise beneficial for improving upper body strength and flexibility.

Parkinson’s hasn’t stopped Paddy from cycling. A keen cyclist for many years, he finds getting out on his bike helps him stay strong and keep his balance in check.

Yvonne started power-lifting a few years after being diagnosed with Parkinson’s. She finds it great for upper body strength.

Fiona enjoys year-round sea swimming. She says it’s helpful for tackling muscle stiffness and staying fit.

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