5 Years to 15 Years
For most, but not all people living with PD, the early years are characterised by fairly consistent control of motor symptoms. Over time, this tends to change slowly, such that control of motor symptoms becomes more inconsistent. This variability is called motor fluctuations. This may be accompanied by intermittent, excessive and involuntary movements termed dyskinesia. Motor fluctuations and/or dyskinesia develop in about 10% of people living with PD per year from the time of medication initiation.
These motor changes can also be accompanied by changes in other domains including speech, swallowing, bladder and bowel function, blood pressure, mood and cognition. Fortunately, there are excellent treatment options for many of these changes.
In this section, we will first review common symptoms that 5-15 years post diagnosis, followed interventions that that you might find helpful and wish to engage with.
PD manifests in a variety of different ways, and no two people will experience exactly the same symptoms, so please do not consider the information presented here as predictive. However, some problems are common, so we’ve tried to cover these in a little more detail.
Motor Changes: How We Move
Motor Fluctuations
Motor fluctuations relate to variations in the control of physical symptoms of PD throughout the day. These fluctuations are often described as ‘on’ and ‘off’ periods. During ‘on’ periods, symptoms like tremors, rigidity, and bradykinesia may improve, allowing for better mobility and function. Conversely, ‘off’; periods can result in worsened symptoms, making movement slow and challenging.
Initially motor fluctuations tend to be linked to the medication cycle, occurring most commonly toward the end of each medication. This situation is often responsive to changes in medication.
Over time however, some people notice that the relationship between motor fluctuations and medication dosing becomes less clear. This demands a different set of therapeutic interventions as discussed below.
Dyskinesia
Dyskinesia refers to involuntary movements and can affect any part of the body. Most commonly, dyskinesia affects the head, neck and upper limbs. In some individuals, the trunk and legs can be involved. When dyskinesias first appear, they are often imperceptible to the person experiencing them, and only recognised by family members or friends. Over time, dyskinesia can worsen. For some patients they can cause functional impairment or pain.
Gait and balance changes
In association with motor fluctuations, many patients may experience changes in their gait. Typically gait impairment occurs in “off medication” periods and may include taking smaller steps, moving more slowly or freezing episodes which are characterised by a feeling that feet are stuck to the ground. These symptoms can be especially noticeable in crowded places like shopping centres, train stations, or airports, and you might find it challenging to walk or turn in smaller spaces like the kitchen or bathroom.
In addition to changes in gait, many people experience changes in balance. Gait changes can also be associated with changes in postural reflexes causing a decreased ability to make quick movements to correct or steady oneself in the event of becoming unbalanced. This can result in a worsening unsteadiness and a greater risk of falls. Dyskinesia, when severe, can also be a contributor to imbalance and falls.
Medical management of motor fluctuations and dyskinesia
Initially, motor fluctuations and dyskinesia tend to be responsive to changes in tablet therapy. New medications may be introduced in a layered fashion by your Neurologist with the view of maximising symptom control.
Over time however, this strategy may become less effective, particularly when motor fluctuations and dyskinesia become uncoupled from medication timing. In this instance, a second tier of more invasive therapies may be considered. These include apomorphine, Duo-dopa or Deep Brain Stimulation which can be very effective in helping with the control of fluctuations and dyskinesia when this can no longer be achieved with tablet therapy.
Cognitive Changes: How We Think
Impaired ability to ‘multi-task’
Multi-tasking refers to doing more than one thing at the same time. After 5-15 years of PD, some individuals may experience more difficulty with this. For example, needing to concentrate harder to juggle multiple tasks on a computer or difficulty maintaining a conversation whilst preparing a meal.
Medication side effects can play a role here. If you feel that medications are making you feel foggy or drowsy, it’s a good idea to speak with your treating doctors, as modifications in medication can often be helpful.
Impulse Control Disorders
Medications that increase activation of the dopaminergic system, particularly dopamine agonists can be associated with an excessive pursuit of pleasurable activities. Examples include hypersexuality, gambling, excessive spending. These difficulties are common and dose dependent (ie the higher the medication dose the more likely and severe this side effect can be). Some people are very susceptible to this, whereas others are not at all. This difference may relate in part to genetic factors.
Impulse control disorders tend to become major problems when they are concealed, which people will often do because the difficulties relate to very personal aspects of people’s lives or behaviours that they feel embarrassed about. It is critical to speak to your doctor about this. Often there is a perfectly acceptable medication alternative that is not associated with these problems.
Unaddressed impulse control problems can cause a lot of disruption and even destruction of social relationships. Getting on top of this problem as quickly as possible is key.
Mood Changes: How We Feel
Mood and Apathy
Low mood and anxiety are common features of Parkinson’s disease and can become problematic throughout the course of PD.
Worsening control of motor symptoms can often be a challenging time from an emotional and psychologic viewpoint, even if good motor control is achieved with a change in medical therapy.
Depression (loss of pleasure in activities that you enjoy) or anxiety may develop in this context and compound physical symptoms. Remember, depression and anxiety are some of the most responsive of PD symptoms to treatment and important to discuss with your doctor.
Apathy refers to a loss of enthusiasm and concern. It can occur in the context of depression or as a symptom on its own. Apathy affects up to 40% of people with Parkinson's and can reduce your engagement with social circles, daily activities, and your general enthusiasm for things you normally enjoy.
Naturally, this can mean you may be less likely to engage with many of the self-help strategies that empower people living with PD. Thankfully, there are many strategies to help manage apathy. Your doctor can work with you to create a personalized treatment plan that includes healthy lifestyle changes, such as improving sleep, diet, and exercise.
Dopa dysregulation syndrome
Dopamine replacement therapies are generally prescribed in PD to control motor symptoms. Dopamine is however a feel-good neurotransmitter. Consequently, fluctuations in motor performance are often accompanied by similar fluctuations in mood. A particular problem that can arise, particularly when patients are self-medicating is that medications start being consumed in response to how a patient feels rather than how they move. This can lead to a situation, much like any addiction, of medication overuse.
If this is a problem for you, speak to your doctor. The less established the situation is, the easier it is to treat.
Medication side effects
As progression of motor symptoms demands more treatment, medication side effects can become increasingly troublesome. Teasing out what is a symptom of PD and what is a side effect can be difficult – your treating team can help you with this.
Autonomic Changes: Bladder and Bowel, Swallowing
Bladder and bowel
Constipation is a common problem all throughout the course of PD. It is caused by slowed gastrointestinal motility and decreased physical activity. These changes can lead to discomfort and reduced medication absorption compounding motor fluctuations and dyskinesia. Effective management may involve medication adjustments, dietary changes and increased physical activity. Management principles are similar to those of early PD.
Bladder issues may include increased frequency, urgency, and nocturia (night time urination), as well as difficulty fully emptying the bladder. These may be compounded by anatomic issues such as prostate enlargement in men or uterine prolapse in women. Talk to your GP or Neurologist about this – there are many therapies that can help.
Swallowing difficulty
Some patients report a degree of swallowing difficulty, with a sense of food intermittently going down the wrong way causing coughing or a sense of coughing. Swallowing impairment tends to be more prominent in the “off” medication state.
Timing your meals with “on” periods can be helpful here as can a variety of behavioural modifications around eating.
Here again, alterations in medication can be helpful. Discuss this with your medical team.
Speech Changes
Speech and communication impairment can become evident at 5-15 years post PD diagnosis. These can include a softer voice, imprecise articulation, word finding difficulty or even a feeling of getting off topic. Sometimes your family and friends may notice this before you do.
Speech issues naturally have a very strong correlation with quality-of-life changes. Speech impairment can impact social interactions with your community and loved ones and impact your sense of identity, autonomy and ability for self-advocacy.
Alterations in medication can sometimes be helpful for speech particularly if speech difficulty is more prominent in “off” medication states or associated with dyskinesia. Your medical team can help with this.
Speech pathologists can provide exercises and valuable tips for your ongoing management or link you in with peer groups such as ParkinSong (yes, singing can definitely help!)
See linked helpful information regarding speech changes in Parkinson’s Disease from Speech Pathology Australia
Sleep Changes
Motor fluctuations can occur during the day but also overnight with off medication periods causing sleep disruption. Off medications symptoms can be associated with restless legs, REM sleep behaviour disorder difficulty rolling over or getting out of bed and generalised discomfort.
Medication changes can be helpful here – talk to your doctor.
Coping With Parkinson’s Disease – Managing Motivation
As Parkinson's progresses and symptoms evolve, you might find coping strategies like self-promotion and social interaction becoming more challenging. It’s a good time to reflect: Do you feel you are withdrawing? Has your motivation changed?
Active coping styles (also see Page D-10 yrs)
Active coping involves taking intentional steps to manage barriers related to PD. This can include modifying your environment, seeking information and advocating for yourself. It’s about identifying challenges and working to change what you can.
Strategies to consider:
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Set Realistic Goals: Break tasks into smaller, achievable steps. If exercising feels daunting, aim for a short walk to the mailbox or stand up from your chair during TV breaks.
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Establish a Routine: Daily routines can provide structure and reduce unpredictability. Incorporate regular exercise, medication, meals, and social activities into your schedule.
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Engage in Enjoyable Activities: Find activities that you love, whether it’s boxing, dancing, outdoor walks, painting, or joining a book club.
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Seek Support: If you’ve been avoiding social interactions, consider sharing this page with a loved one, messaging a friend, or looking for local activities or exercise groups.
Remember, it is okay to reach out for help as you navigate these changes.
Empowerment Strategies
Feeling empowered in your own life, particularly in the context of managing Parkinson’s means having a sense of control and confidence in your choices and actions regarding your emotional and physical health. It involves recognising your capabilities and maximising your strengths, rather than ignoring challenges. Empowerment helps you pursue your goals and navigate challenges with resilience.
In this next section, you will find management strategies and tips that can increase your sense of empowerment, independence and self-efficacy.
Gait and balance
Medication adjustments and physiotherapy interventions are the cornerstones of medical management of gait and balance difficulties. An easy place to start working on your walking pattern is to go to local parks or open spaces and practice larger, smoother movements. Whether it’s a 45-minute walk outside, walking to your mailbox and back, or simply increasing your distance between streetlights, keep moving!
If you are feeling as though you don’t know what to implement next into your exercise regime for gait and balance training – seek a review with a physiotherapist. Their role in this instance is to educate you on the evidence-based interventions that assist with PD management but also help you navigate exercises that are safe, relevant and manageable for you. (Link to exercise page)
Maintaining compliance and motivation with exercise can be hard. A great tip is asking a friend or a family member to exercise with you. Camaraderie goes a long way in supporting exercise. Not only will it keep you motivated but it is a great way to boost your mood. You might just want to walk together to a local café, meet at a park or join a group exercise class such as PD Warrior or Parkrun. You may want to try a variety of different social options for exercise to see what works best for you.
Improve your ability to multi-task safely. Multi-tasking impairment is common after 5-15 years of PD, and increases the risk of falls. Multi-tasking however, is a trainable skill. Your Physiotherapist or exercise physiologist will be able to advise training strategies that are appropriate to your physical symptoms and falls risk.
Speech and communication
When speech and communication begin to be impacted, an important step is being assessed by a Speech Pathologist. Not only can they help with suggestions for swallowing and safe eating and drinking, but they can also help to establish a plan to improve communication.
A Speech Pathologist’s management may include voice exercises and programs, swallowing exercises or modified diets. There are even peer singing groups for people with PD (yes, singing can help!) that provide not only an opportunity to use your voice as loudly as possible, but also help you access support from people in a similar situation.
For more information on speech and swallowing changes in Parkinson’s disease, visit these resources from Speech Pathology Australia and Fight Parkinson’s:
Mood Boosters
Mood boosters
Depression, apathy and anxiety are common in PD and can significantly impact your engagement with positive activities or your support system. Discussing medication options with your Neurologist or GP is an important step, but there are many additional ways you can help to lift your mood and regain a sense of control, autonomy and engagement in your life.
Exercise
Exercise could be mentioned in every single stage and facet of managing PD. Not only is exercise crucial to your physical symptom improvement, but it is also an effective intervention for depression. (Link to mindfulness/exercise page). Activities like aerobic exercise, dance, yoga, or tai chi have been shown to be beneficial, but any activity that gets you moving is a worthwhile pursuit.
Connection
Other vital and controllable mood boosters include socialisation and human contact. Ensuring you maintain some points of contact with family, friends, medical team or even organised support structures can alleviate the burden of mood fluctuations and isolation.
Activities
Include things that you enjoy in your daily routine, this could be things like listening to music, podcasts or audio books, playing board games, engaging in a new course/hobby, gardening or cooking.
Change of scenery
Spending time outdoors or even at a friend or family's house is a powerful way to boost mood and enhance well-being. Think of ways you or your loved ones could facilitate this – visiting a local café, driving with a friend or family member to a nature reserve, park, gallery, library, coastline or go for a bush walk.
The motherhood stuff
A healthy diet , managing constipation, good sleep hygiene and taking your medications on time all make a big difference. In fact, these lifestyle interventions can become increasingly important in the 5-15 year period from diagnosis where medication regimens become more complicated and symptom control becomes more variable. Click on the links for information covered in the 0-10 year section for information on this.
Relationship Challenges
Relationship challenges
Couples coping with Parkinson’s Disease (PD) often face challenges as the dynamics of their relationship shift. Partners without PD may feel they’re taking on a “carer” role, while those with PD may struggle with feelings of being a burden or losing independence. Recent studies have outlined the concepts of Communal strength and Perceived Partner Responsiveness as important contributors to coping with PD within a relationship.
Communal strength
This refers to the motivation to respond to your partner’s needs. When one partner is diagnosed with PD, their ability to care for the other may change. Both partners can foster understanding and support despite these challenges.
Partner responsiveness
Feeling cared for and understood by your partner can significantly impact health outcomes and relationship satisfaction. Simple open communication can be valuable, and is a great way to avoid misunderstandings about how each partner is feeling.
Information Source
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Zhang JF, Wang XX, Feng Y, Fekete R, Jankovic J, Wu YC. Impulse Control Disorders in Parkinson's Disease: Epidemiology, Pathogenesis and Therapeutic Strategies. Front Psychiatry. 2021;12:635494. doi:10.3389/fpsyt.2021.635494
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Prange S, Klinger H, Laurencin C, Danaila T, Thobois S. Depression i Patients with Parkinson's Disease: Current Understanding of its Neurobiology and Implications for Treatment. Drugs Aging. Jun 2022;39(6):417-439. doi:10.1007/s40266-022-00942-1
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Kim R, Lee TL, Lee H, Ko DK, Jeon B, Kang N. Effects of Exercise Depressive Symptoms in Patients With Parkinson Disease: A Meta-analysis. Neurology. Jan 24 2023;100(4):e377-e387. doi:10.1212/wnl.0000000000201453
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Champagne ER, Muise A. Responsiveness and Relationship Satisfaction Couples Coping With Parkinson's Disease: A Pilot Study. Psychol Rep. Apr 2022;125(2):804-821. doi:10.1177/0033294121998032