Diagnosis to 10 Years
If you or a loved one has recently been diagnosed with Parkinson’s Disease, it is unlikely what you envisioned for the future. Feeling overwhelmed or lost is normal as you learn about the condition. Sadness, frustration and denial are common, and most people find the experience of receiving the diagnosis exceptionally challenging.
Perhaps the most important thing to know at this stage, is that most people can live well with Parkinson’s disease for many years with existing therapies, and there is good reason to hope that things will improve further as our understanding of what causes PD and even better treatments are developed.
To begin, we will review common symptoms that occur in the first 5-10 years of PD, and then we will discuss interventions additional to your medical treatment that you might find helpful or wish to engage with.
PD manifests in a variety of different ways, and no two people will experience exactly the same symptoms, so please remember that the information presented here is not aimed as predictive in any way. However, as some problems are quite common, we have covered these in more detail.
Early Symptoms
As discussed on the home page, PD is a slowly progressive neurologic condition, which affects 4 main areas of nervous system function:
Motor Control: How we move.
Mood and Thinking: How we feel, process the world and behave.
Autonomic Control: Semi-automatic or automatic aspects of nervous system control, such as swallowing, bladder, bowel and blood pressure control.
Sleep: How we rest.
Currently, Parkinson’s disease is diagnosed on the basis of specific disorders of motor control, in the absence of structural brain problems (why a brain scan is important) or medications that can cause Parkinson’s-like conditions.
It is likely that at some stage there will be a specific test for the condition – but we are not there yet.
Motor Symptoms
The typical motor symptoms of Parkinson’s disease are slowness of movement, muscular rigidity, tremor and gait (walking) or postural impairment. Most patients will experience a combination of these symptoms, although tremor is minimal or absent in about 25% of people with Parkinson’s disease. Most commonly, motor symptoms of PD affect one side of the body more than the other.
Slowness of Movement
This relates to difficulty initiating movement or progressive reduction in the speed and amplitude of movement with repetitive actions. This may manifest as everyday activities taking more effort and time, with tasks that were once done with ease may become slower and more laborious.
Muscular Rigidity
Muscle rigidity relates to muscle stiffness. This can create a feeling of inflexibility, leading to discomfort and a reduced range of motion, particularly affecting the limbs and trunk.
Tremor
This refers to rhythmic shaking. It most commonly affects one hand or arm, and is usually most evident at rest. Stress or fatigue may lead to a worsening in tremor.
Gait (Walking) or Postural Impairment
This may manifest as reduced arm swing or reduced step length and may be more evident on one side than the other. Postural changes may be characterised by increased stooping.
Motor symptoms generally respond well to medical therapies, and this is particularly consistent in the earlier years of PD.
Pre-Motor and Non Motor Symptoms
We know that the pathologic brain abnormalities that occur in PD, also affect areas of the brain and nervous system that are not involved with the control of movement. This can occur long before movement circuits are affected. In fact, it is now understood that symptoms associated with Parkinson's disease can begin 7 or more years before the motor manifestations.
Mood Changes:
Low mood or anxiety are common manifestations of Parkinson’s disease throughout the course of the condition and can even occur in the earlier years prior to motor symptoms. Sometimes it is only after motor symptoms develop that patients or their treating doctors are able to make the connection that these changes in mental state were in fact, related to Parkinson’s disease all along.
Autonomic Changes
Bladder and Bowel:
Constipation - less frequent stools or difficulty passing stools is a very common symptom of Parkinson’s disease, occurring in 79% or more of people living with PD. Constipation is common even before the development of motor symptoms.
Sleep:
Restless legs and REM sleep behaviour disorder are common pre-motor symptoms of PD. Restless legs is a condition in which people experience an uncomfortable, irritable sensation in their legs, which briefly improves with movement and occurs most commonly in bed.
REM sleep behaviour disorder refers to a condition in which people enact their dreams in their sleep. This can result in hitting their bed partner or throwing themselves out of bed.
These pre-motor symptoms can also persist after the development of motor symptoms. Reassuringly, there are useful medical therapies that can treat these symptoms.
Initial Diagnosis – This Can’t Be Right, Can It?
Receiving a Parkinson’s Disease diagnosis can mark a significant shift in your imagined future and your understood identity. It’s a really big deal. There are many ways people deal with the news, react or cope with such a change. Some people will feel a sense of denial and not wish to talk about or engage with discussions about PD. Others will seek as much information as they can find, and of course many will sit in between. It depends on you, your stage of life and your personality, and there is no perfect response. Whichever way you process the information, it is going to take time.
Right from the beginning there are some simple things that can make a big difference:
Stay Social
We are social creatures, and socialising helps maintain a sense of normalcy.
Exercise
Exercise along with medical therapy are the two cornerstones of the management for early PD. Exercise improves mood, reduces anxiety, is associated with a sense of self-efficacy and is medically proven to improve Parkinson’s symptoms. Interestingly, there does not appear to be a big difference in which exercise you do. If you are already exercising, keep going.
If you have never exercised before or do not do a lot of activity, walking is a great place to start! There are many exercise options available both generally and specifically for Parkinson’s disease. You could look in your local area for a gym, exercise physiologist, personal trainer or physiotherapist and your local Parkinson’s association can provide you with contacts for exercise practitioners with particular interest in PD.
Talk to family and trusted friends
Your family and friends can play a crucial role in your well-being as you navigate Parkinson’s Disease. Of course, only you can determine the level of involvement of your loved ones but including them early on can be immensely valuable.
The people that surround you know your interests, what motivates you, and how to support you best. Having someone who can co-advocate for you—whether by attending medical appointments, helping you seek information, or coordinating care—can make a significant difference.
While discussing your condition with family and friends may feel daunting, keeping PD unspoken can create a heavier burden for both you and them. Open conversations about your symptoms, frustrations, and concerns can help them understand how to support you and remind you that you are not alone in this journey.
Here are some helpful resources for talking to your family about Parkinson’s
Disease:
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Sharing your diagnosis from Shake It Up Australia
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"A practical guide for parents and family members" from the Michael J. Fox foundation
External Support
Of course, not all families are the same, and talking with family and friends may not feel like the right place to start. Either way, having objective professional support outside of your immediate circle can be tremendously helpful.
The following support groups/health professionals may be helpful:
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Your GP
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Psychologist
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PD association related counselling services - e.g. PD NSW offers free telephone counselling
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Local PD support groups; you will be able to track these down online or via social media. This offers the opportunity to meet, share experiences and provide mutual support.
How Long After I Start Treatment Will I Feel Better?
One of the key factors that causes motor symptoms in PD is a reduction in the brain’s ability to produce the chemical dopamine.
Typically, medication therapies in PD work to increase dopamine levels in the brain. These medications are given in a tablet formulation.
Most people start to improve within 2-3 months of commencing dopamine replacement therapy however, maximal benefit can take 6 months or even longer to achieve.
Non-motor symptoms such as constipation or depression may require specific treatments in addition to dopamine replacement therapy. This may be prescribed at the same time as dopamine replacement therapy.
Remember, all of these symptoms are part of the same condition and it's important to treat all of the symptoms to achieve the greatest improvement.
What Can I Do To Improve Things?
There are many different ways that you can empower yourself to live better with PD.
Keep Exercising!
Have we mentioned this before? Exercise is important all through the course of PD. The benefits in PD and in fact whole body health are well established, and this is one of the easiest things that you can do to improve your sense of wellbeing.
Learn Active Coping Styles
Coping relates to how quickly and effectively you can manage stress and return to your regular mental, physical, and emotional state.
Active coping strategies relate to deliberately and actively engaging with barriers or difficulties related to PD Active coping doesn't mean overcoming every challenge, but rather identifying effective strategies to help you manage. This is the opposite of passive coping strategies such as denying that a problem exists or giving up in stressful situations.
In other words, active coping strategies refer to “leaning in” to a problem rather than running away. Here, “leaning in” tends to make the problem feel smaller in the long run, whereas running away, whilst delaying the problem in the short term, can make it feel bigger in the longer term.
Self-Advocacy
Be clear with yourself, your family and your treating clinicians about your goals, your preferences, what compromises are acceptable and what are not. “Active coping strategies” have been shown to enhance self-efficacy and are linked to lower levels of depression and functional impairment.
Maintaining Internal Motivation
In the early years of PD, this may relate more to psychological help and support rather than physical assistance. Many people find accepting psychological support or treatment difficult. Here it may be helpful to remember that depression and anxiety are common biological features of Parkinson’s, affecting about 50% of individuals at some point. Quality of life in Parkinson’s disease is strongly determined by mood. If mood or mental state is poor, your quality of life will be poor… lean in and get help if you need it. Depression and anxiety are some of the most treatment responsive elements of Parkinson’s disease.
Talking with a health professional is a good place to start.
If you would prefer to get some initial phone advice you could use one of the following external resources.
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Fight Parkinson’s support line: 1800 644 189
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Parkinson’s Australia contacts: parkinsons.org.au
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Health Direct Australia: 1800 022 222
Take your medications as prescribed and on time!
Many medications for PD are relatively short acting, meaning that even in the early years of PD, many patients will need to take tablets three or four times per day to achieve the optimal effect. Taking medications on time makes a big difference to how effective the treatment is but it can be difficult to do!
If you carry a phone with you at all times, setting alarms on the phone can be helpful. If not, or if you are hard of hearing, using a smart watch can make a big difference. We are big fans of the snooze function irrespective of the device you use. Optimising the snooze function looks like this..
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Set your alarms to coincide with medication times.
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Ideally, when the alarm goes off - you take the prescribed medication dose.
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If it's not convenient to take your medication at that moment, do not turn off the alarm, rather press snooze. That way you will be reminded to take the dose in 10 minutes instead of when the alarm goes off for the next tablet dose!
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Remember, don’t turn off the alarm unless you have taken the dose!
Constipation
Look after your bowels! Constipation is almost universal in Parkinson’s disease. Addressing constipation is important because it can cause discomfort and impair the absorption of PD medications, leading to poor symptom control and decreased quality of life. There is no one size fits all for managing constipation in PD, but it is rare that a combination of diet and lifestyle factors +/- laxatives don’t make a big difference.
The key is to find a regimen that works for you and stick to it rather than only employing treatment when constipation becomes a problem.
Treatment Options for Constipation in PD
1. Diet and Lifestyle:
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Increase water intake.
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Eat more fibre-rich foods like whole grains and fruits/vegetables (with skin).
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Exercise daily to stimulate gut activity.
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Keep a bowel diary to track movements.
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Respond promptly to urges to use the bathroom.
2. Medications:
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Laxatives can be effective, with various types available that soften stool or stimulate gut contractions. Consult your doctor to find the best option for you.
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Always discuss any lifestyle changes or new medications with your doctor before starting.
Sleep
Interrupted or poor quality sleep is associated with worsening Parkinson’s symptoms and can lead to difficulties with concentration, mood fluctuations, decreased productivity, and memory issues. Sleeping well is crucial!
Your treating team can help to tease out factors that may be contributing to poor sleep including depression and anxiety, restless legs or REM sleep behaviour disorder and initiate appropriate treatment.
For your part, focussing on good sleep hygiene can make a big difference.
Elements of good sleep hygiene include:
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Minimising sleeping during the day to a short nap (20-30 minutes).
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Using your bed for sleep and intimacy only.
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Limiting liquid intake after dinner to reduce nocturnal waking to go to the toilet.
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Reducing alcohol intake.
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Having a wind down routine before you go to sleep (reading, watching TV etc).
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Going to bed at a regular time.
Applying for the National Disability Insurance Scheme (NDIS)
For Australian Readers
If you are under the age of 65 at the time of your diagnosis, or at the time of visiting this website, we strongly recommend that you consider applying for support through the National Disability Insurance Scheme (NDIS.)
The NDIS 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.