10 Years to 20+Years
Motor and non-motor symptoms both progress as time goes on. Whilst motor symptoms may be the dominant concern in the 5-15 year period post diagnosis, non-motor symptoms can become increasingly burdensome after 10-20+ years. However, there is considerable variation. For some, particularly those with younger onset Parkinson’s disease, motor (physical) symptoms may remain the major symptom concern, particularly in the earlier years of this time window. For others, more notably, those with older onset Parkinson’s disease, non motor symptoms including alterations in bladder and bowel, blood pressure and cognition may become increasingly troublesome.
If you’ve landed here directly after reading the introduction page, you may find it helpful to read the 5-15 years section before proceeding, noting that many of the difficulties of the earlier years may persist or become more prominent in the 10-20+ year period post diagnosis.
In this section, we will focus on common symptoms that occur 10-20+ years post diagnosis, and then we will review interventions that go beyond just that of medical treatment. Carers often need to play an increasing role after 10-20+ years of PD.
This section is written with this in mind. 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 in any way, however, we have covered some problems that are common in a little more detail.
Motor Changes: How We Move
Many of the motor changes noted over the first 5-15 years persist and become more prominent in the 10-20+ year period post diagnosis. In addition to increasing variability and unpredictability of motor control, some patients will find that some of their symptoms have become less responsive to medication. This is particularly notable for changes in gait, balance and posture.
“On” freezing
Freezing of gait (FOG) or 'sticky feet'; refers to a sense that one or both feet are stuck to the ground. It occurs most commonly on gait initiation, such as when trying to walk after rising from a chair, in narrow spaces or crowded surrounds. Up to 80% of individuals with 15+ years of PD may face this challenge. Many individuals will experience what is referred to as “on” gait freezing.
This is when people feel “on” – such that they feel they are moving with less impediment or tremor is less marked, but they continue to freeze. “On” gait freezing may be an intermittent phenomenon initially but can become more consistent over time. “On” gait freezing does not respond well to first tier (medication) or second tier therapies (Duo-dopa and Deep Brain Stimulation) but can still be improved by physical therapies and gait aids.Freezing of gait is not only frustrating, but a common cause of falls.
Loss of “righting reflexes”
Our nervous system has multiple overlapping processes for maintaining balance or “righting” ourselves when we are off balance to reduce the risk of falling. After 10+ years of PD, these ‘righting reflexes’ diminish in efficacy. Loss of these reflexes are a significant contributor to falls.
Many people will find that their righting reflexes are better in the “on” medication state and both first tier and second tier therapies can be helpful in improving righting reflexes for a time. As years progress, righting reflexes can however become less responsive to medical treatments. Even at this challenging stage, physical interventions and gait aids can provide significant benefit.
Postural changes
Whilst mild stooping of posture is a common feature of Parkinson’s disease, even from the early years, more marked postural abnormalities can become evident after 10 years. These include leaning to one side, twisting and forward bending at the waist. These may be completely, partially or non-responsive to medical therapies. Exercises can remain helpful.
Falls
Falls are common 10+ years post diagnosis in PD, with 45% to 68% of individuals reporting falls each year. Freezing of gait, loss of ‘righting reflexes’, postural changes, variations in blood pressure and impulsivity all contribute to falls post 10 years in PD. Falls can be associated with significant injury, loss of confidence, progressive disability and impaired quality of life. Fall prevention is a critical part of PD management 15+ years post diagnosis.
In addition to medical strategies, exercise and physical interventions play a major role – see interventions below. Falls can instil a fear of movement, increase feelings of disability and, in some cases, lead to serious injuries.
Cognitive and Behavioural Changes: How We Think
Cognitive changes
Cognitive changes are increasingly common around 15,+ years post diagnosis of PD and can sometimes occur even earlier. Early cognitive changes in PD relate to a loss of mental flexibility, which can manifest as difficulty managing multi-tasking. For people still working, maintaining concentration and mental performance can feel increasingly effortful.
Planning and organisational ability can become impaired, causing difficulty with sequencing activities such as preparing a meal with multiple ingredients and components. Later, cognitive changes may involve other thinking domains such as problem solving and memory. These later changes can be accompanied by the development of hallucinations and delusions. Hallucinations are most commonly visual such as a misperception that an inanimate object is a person or more florid experiences such as seeing groups of people talking together. The understanding that the vision is imagined (insight) rather than something real can be retained or absent.
Hallucinations can also be accompanied by unfounded beliefs (delusions), which can often have an element of paranoia such as pathologic jealousy - when a person with Parkinson’s disease thinks incorrectly that their partner is having an extra-relationship affair. Cognitive and perceptual abnormalities tend to occur gradually in PD. Many of these symptoms are responsive to medical therapies and it is important to discuss with your treating team. When cognitive and perceptual changes occur suddenly, it is often due to a reversible systemic cause such as a urinary tract infection. Prompt medical review is important in these circumstances.
Behavioural changes
Changes in behaviour may occur in relation to the natural progression of Parkinson’s disease and can also vary with individual medication doses. Some patients may be irritable and apathetic ‘off medication’ versus euphoric and impulsive ‘on medication’. These variations in behaviour can occur with or without background changes in a person’s overall behaviour, which can include apathy or impulsivity.
Both non-PD illnesses and medications can play a major role in both driving and improving behavioural changes in PD at 10-20+ years.
Discussing cognitive changes in Parkinson’s disease can be confronting, but it's an important topic to address. A variety of cognitive and neuropsychiatric symptoms can arise as PD progresses, affecting both individuals and their caregivers. Fortunately, there are a number of therapies and interventions that can be associated with improvement.
Mood And Emotions: How We Feel
Depression and anxiety are common throughout the course of PD, and may become more common in later PD. Depression relates to loss of enjoyment of activities that were once found pleasurable. Depression can be accompanied by increasing isolation, fatigue, sleep disturbance such as early morning waking and weight changes.
Depression and anxiety have major adverse effects on quality of life and are often under diagnosed in more advanced PD. Fortunately, depression and anxiety are two of the most medically treatable aspects of PD – there is no need to suffer in silence. It’s a good idea to discuss your feelings with your treating medical team. In addition to medical therapies there are many non-medical interventions that are effective on their own or in combination with medical treatment. More detail is provided about these interventions in other sections.
Changes in cognition, behaviour, mood and emotion in Parkinson’s disease is a lot to deal with, both as a patient and a carer. You are not alone in this. Teasing out these symptoms is routine work for Neurologists, Neuropsychiatrists and Aged Care physicians. Not only are there many medical interventions available, but a host of psychosocial and support options. Whilst managing these symptoms can be a ‘work in progress’, substantial improvements can be achieved. See the empowerment section on this page.
Speech and Swallowing
Speech and swallowing changes
As PD progresses, speech may become increasingly impaired. Patients may experience a reduction in speech volume and clarity, making them more difficult to understand. This may be more marked in the off medication state, and can become less responsive to medication, much like FOG, as Parkinson’s progresses. Sometimes this can be accompanied by difficulty in finding the correct word or loss of the train of thought.
Swallowing can also become impaired with PD progression. Loss of regular reflex swallowing can result in drooling. Voluntary swallow impairment can be associated with coughing and chest infections. In addition to optimising PD medication regimens, speech can be improved by well evidenced exercise programs. Food consistency and changes in meal time behaviour can make a big difference to swallowing comfort and safety. Please see the empowerment section below. Botulinum toxin can also be effective for drooling – you may wish to discuss this with your Neurologist.
Autonomic Control
Bladder and bowel
Bladder dysfunction or lower urinary tract symptoms are very common in more advanced PD. More than 50% of people with advanced PD experience significant bladder symptoms, the most common being an overactive bladder resulting in urgency and urinary frequency. Other symptoms may include nocturia (frequent urinating at nighttime), or difficulty fully emptying the bladder. These difficulties can be compounded by anatomic problems such as prostate enlargement in men and uterine prolapse in women. Review by a Urologist or Gynaecologist can provide important insights to relative contributors to urinary difficulty and optimal treatment.
Constipation remains a common problem all the way through the course of PD. Constipation is uncomfortable and can have profound effects on the absorption of medications that improve control of Parkinson’s symptoms. Constipation can be a contributor to the severity of urinary symptoms, so much so that one of the most important interventions in managing bladder dysfunction is the effective management of constipation.
Constipation management principles in more advanced PD are similar to those of early PD. Constipation treatment requirements vary from person to person, and may also change slowly over time. Management of constipation requires perseverance - sometimes you need to try a variety of medications to get the combination right. Working through this is almost universally worthwhile. Good management of constipation and urinary symptoms can have a profound impact on both motor symptoms and quality of life. See empowerment section for other interventions that may be helpful.
Blood pressure
Variabilities in blood pressure tend to become more prominent as PD progresses, particularly at 10+ years. These variations relate to both changes in blood pressure regulation and the medications used to treat PD.
Variations in blood pressure may occur through the day and night and in response to changes in posture. Notably, variations can be inconsistent, present on one day but not another. Whilst dehydration and intercurrent illness can play a role in blood pressure variability, variation may also occur spontaneously.
Postural hypotension refers to a drop in blood pressure on standing. This may be particularly troublesome due to its potential contribution to the risk of falling. Variations in blood pressure can be managed both by alteration in PD medications and the addition of adjunctive medications – talk to your doctor about this.
Sleep
Sleep quality can be affected by many factors after 10+ years in PD. These include discomfort from physical symptoms, need to pass urine frequently, side effects from medications and potentially additional conditions such as sleep apnoea. Careful medical review can be helpful here. There are some simple interventions that you can also make around sleep hygiene which are covered below.
Quality Of Life And Interventions
Empowerment in advancing PD
Disability associated with progressive motor and non-motor symptoms in PD can have profound psychosocial effects, reducing a person (or their carer’s) sense of control, autonomy, dignity and sense of self.
In this section, we suggest strategies that may assist in fostering a sense of agency, autonomy and identity through changing your environment and enhancing emotional and physical well-being through enhanced connection with your loved ones and community.
Tips for FOG and falls:
When it comes to maintaining a sense of autonomy over your body – reducing falls can be one of the most overt challenges. Dealing effectively with gait challenges is of course essential from a safety perspective, but also for maintaining quality of life. Falls can affect enjoyment and engagement in daily activities, creating a fear of movement that can be difficult to overcome.
Observe patterns:
Notice when freezing occurs most frequently. It might happen during turns, in crowded areas, or while multitasking, like walking and talking. Understanding these patterns can help to implement helpful strategies.
What can help?
While some falls may be unavoidable, there are steps that can be taken to reduce the risk:
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Medical Review: Inform your GP or neurologist about any falls. They can assess contributing factors and adjust medications as needed. Being open with your care team is vital for effective management and support.
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Home Setup: Evaluate the home environment for clutter or obstacles that may hinder movement. Discuss with family or friends about clearing pathways or making spaces more accessible. Occupational therapists can provide safety assessments and recommend modifications like installing rails or assistive equipment in the bathroom or kitchen.
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Exercise: You’ve likely heard it before: exercise is essential! No matter how small the effort—whether it’s simply moving in a chair—every bit of movement helps manage fall risks. Consider scheduling an assessment with a physiotherapist or exercise physiologist to guide you on safe ways to exercise.
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Mobility aids: A physiotherapist can also determine if a walking aid would be beneficial. It’s common to resist using aids, thinking, “I don’t want that frame!’ The truth is walking aids are intended to improve mobility and safety, not impede you! They can dramatically improve safety both at home and outdoors, boost confidence and increase the ease of outings or visits with family and friends.
Speech and communication
When speech and communication begin to be impacted, an important step that can help is being assessed by a Speech Pathologist. Not only can they help with suggestions for swallowing and the safety of eating/drinking, but they can also help establish a plan to improve communication.
A Speech Pathologist’s management may involve adaptive communication devices (boards, keyboards, dictation phone apps), 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 express your voice as loudly as you can, but also 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:
Managing motivation
It’s natural to feel that maintaining motivation to “live well” with Parkinson’s is unrealistic at times. This frustration can stem from burnout or apathy, but it’s important to remember that struggling with motivation doesn’t define you. PD creates barriers, but we can work to overcome them, even in small ways! Start by setting realistic, personalised goals or helping your loved one establish these goals. If dance classes or support groups do not resonate, that is perfectly okay.
Focus on activities that inspire interest and are achievable, perhaps those activities that were enjoyed before the diagnosis.
Consider simple goals like:
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Staying in touch with friends and family.
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Listening to favourite music or podcasts.
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Attending a boxing class or following an exercise video.
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Meditating once or twice a week.
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Reviewing challenges with the health care team.
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Connecting with others in similar situations.
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Enjoying some time outdoors.
Which goals you choose doesn’t matter. What’s important is that they are achievable for you! Let go of the pressure to meet expectations and instead focus on what brings you joy and fulfillment.
Mood boosters
In addition to all the medical options available for improving mental state, there are plenty of non-medical options which can help – here are a few:
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Exercise: You guessed it – exercise is a vital component! Exercise not only releases endorphins, but it also enhances the feeling of control of the body which can in turn, increase mood in PD. Activities like aerobic exercise, dance, yoga, or tai chi can be beneficial. If these feel overwhelming or unachievable, even gentle movements or deep breathing can help!
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Connection: Socialising can be a wonderful bulwark against helplessness or isolation, and can take many forms. Family and friends are a great place to start. Some find PD support groups to be a source of comfort. Others prefer community or special interest groups. Increasing social outlets and connections can really improve mood.
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Activities: Implementing additional activities in a daily routine that are more enjoyable can help to boost mood. Think of things like listening to podcasts or audio books, painting, pottery, gardening, puzzles, chess, board games. Refer to our activities section (link) for more ideas.
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Change of scenery: A change of scene can be a wonderful thing! Spending time outdoors or even at a friend or families house is a powerful way to boost mood and enhance well-being. Think of ways you or your loved ones could facilitate this – can you visit a local café with friends? Can you have lunch at a family members house?
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 10-20+ year period 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.
Relationships and Carers
Managing relationship changes
As Parkinson’s disease progresses, motor changes are easily recognised, but important emotional and relationship shifts can also occur. You and your partner may face challenges as the dynamic of your relationship changes. Disability associated with progressive motor and non-motor symptoms often leads to a greater reliance on the caregiving partner, which can simultaneously increase the stress of the partner without PD and affect the autonomy of the person with PD.
Some strategies that may help:
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Discuss things openly. This can help to ‘clear the air’ and avoid misunderstandings
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Consider activities that you can do together.
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Consider professional support. These could be through Parkinson’s.
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organisations, other organisations that support relationships eg Relationships Australia, your GP, or other mental health practitioner.
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As a carer try not to ‘take over’. Whilst this sometimes feels like the easier option, it often has negative impacts on the relationship.
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Be willing to accept outside help – this can be from family, friends, through government funded support organisations or private agencies.
Make sure the carer is cared for
Being a carer is a tough job. Carer stress and burn-out is a very real phenomenon and however resilient you are, you are not immune! Asking for time out or help is difficult to do, often accompanied by feelings of guilt or inadequacy. This is all completely understandable, but its important to remember that we all have our limits!
Our almost universal experience in seeing thousands of couples manage with PD is that what’s good for the carer is almost always good for the person living with PD. The less hassled and stressed you are, the better job you will do as a carer – that is the reality.
Tips for carers:
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Keep exercising: you need to exercise as well. With or without PD, exercise has clear mental health benefits.
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Maintain some “me” time: we all need a bit of time for ourselves. A little bit of separation keeps relationships fresh!
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Accept help!: Caring for someone with advanced PD can truly be a 24 hour a day job. In these situations, the joyous parts of relationships can become lost in the day to day grind. Accepting outside help, for example cleaning or showering and dressing assistance, can free up energy to focus on the emotional parts of your relationship.
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Consider respite stays to facilitate a break: Many nursing homes and hostels offer short stay respite options so that carer’s can get a break.
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Get away: Going on a holiday or finding a change of scene can do wonders for your energy levels.
NDIS
For Australian Readers
If you are under the age of 65 at the time of your diagnosis, or the time of your visiting this website, we strongly recommend that you consider applying for support through the NDIS.
The NDIS or National Disability Insurance Scheme is an Australian Government scheme that provides support and funding for people with documented chronic health conditions who are under the age of 65. This includes people diagnosed with Parkinson’s disease.
The funding provided may cover sessions with different Allied Health specialities such as Physiotherapy, Occupational Therapy, Exercise physiology and Speech Therapy. It also allows funding for other supports such as transport or workplace assistance if deemed necessary to maintain current employment or support any changes.
NDIS also offers local area coordinators that can assist in your application or pointing you in the right direction.