Caring for someone with Parkinson's disease is a balancing act between encouraging independence and being available for assistance, between tending to the physical needs and offering psychological support to your loved one. In our latest blog article, we explore the visible and invisible challenges someone with Parkinson’s may face. From there, we discuss treatment and care for Parkinson's disease and offer practical caregiving tips to promote emotional resilience and overall well-being.
Table of Contents
Understanding Parkinson's Disease
Parkinson's is a neurological disease primarily affecting movement. Typical symptoms include shaking or trembling of the hands and feet, stiffness of the limbs, neck and shoulders, difficulty balancing and coordinating, and slowness in movement. People with Parkinson's usually experience symptoms on one side of the body first, then gradually on both sides.
In Singapore, Parkinson's disease is the second most common neurodegenerative condition, after Alzheimer’s disease. The prevalence of Parkinson's increases with age. It is estimated that 1-2% of seniors over the age of 65 years have it, but for the age group of 85 and above, the ratio is approximately 4-5%. Men are at a higher risk of developing the condition compared to women.
Although most people recognise Parkinson's by physical symptoms such as shaky hands or a shuffling style of walking - which is often referred to as tremor by medical professionals, it is important to note that there can be other non-physical challenges. People with this disease may have to deal with sleep problems, digestive issues, difficulties in talking, mood changes, memory decline and cognitive challenges. The progression and severity of symptoms can vary from person to person.
On the other hand, not all tremors indicate Parkinson’s. They can also be caused by stroke or a brain injury. If you notice the symptoms in yourself or a loved one, do not attempt to self-diagnose and self-medicate. It is best to consult a doctor for a proper evaluation and treatment plan.
Parkinson's disease is not immediately life-threatening and most people can maintain a normal lifestyle after being diagnosed with Parkinson's. However, its chronic and progressive nature means that it often slowly gets worse over time and may reach a life-changing stage at some point. There is no cure for Parkinson's at the moment, but medications and therapies are available to help you manage your symptoms and improve your quality of life.
Early Signs of Parkinson's
In the early stage of Parkinson's, symptoms are often mild and don’t interfere with daily life. You may experience slight tremor, subtle stiffness in the arms, legs or body. Loved ones may notice less facial expression, and they may comment that you look like you are in a serious or sombre mood when you actually are not.
There are a variety of signs and symptoms in the early stage of Parkinson’s, which often require keen observation to spot. Here are some common early signs of the disease:
- Uncontrolled tremor while at rest, often starting with a hand or fingers
- Stiffness in the body, arms or legs
- Trouble falling asleep and staying asleep through the night
- Slight difficulty moving or walking, the feet look like they are “stuck to the floor”, the arms do not swing as much as they usually do.
- Other symptoms such as reduced facial expression, changes in handwriting, loss of smell, softer voice or slurred speech, stooped posture, increasing trouble with gait and balance, and sudden movements during sleep.
These early symptoms can be easily missed or attributed to old age. You may not notice how you walk or swing your arms or maintain your posture. However, if you recognise the signs or someone points them out to you, do not delay visiting a doctor for an assessment. Early detection is crucial as treatment is more effective in the early stage of Parkinson’s.
It is also important to note that experiencing one or a few of the above symptoms does not always mean you have Parkinson’s disease. Other conditions can mimic similar symptoms. For example, involuntary tremor can be caused by a stroke or a condition called “essential tremor”. Stiffness in the body can be due to arthritis or muscle strain, while sleep disturbances can be due to sleep apnea or insomnia. Balance problems can be caused by a variety of factors, such as inner ear disorders, vertigo, a vision problem, or loss of muscle mass due to ageing - a common phenomenon among the elderly known as sarcopenia.
Occasionally, what looks like a symptom of Parkinson’s is just a normal part and parcel of life. For instance, tremor or shaking after vigorous exercise or when someone is stressed is normal. Twitching or jerking at the start of sleep is common (but sudden movement during sleep may indicate Parkinson’s).
In all cases, it is crucial to seek professional advice as early as possible when one or more symptoms are “suspicious” or concerning to you. Doctors are equipped to assess your symptoms accurately, determine the underlying cause and help you get the appropriate treatment.
Diagnosis of Parkinson's
In Singapore, if you or a loved one suspects Parkinson's disease, you can visit a general practitioner (GP) or a family doctor for an initial assessment. The GP doctor may refer you to a Parkinson’s specialist for confirmation. The specialist is a neurologist specialising in movement disorders.
Diagnosis of Parkinson’s disease is based on medical history and observations of symptoms. Blood tests and scans may be ordered to rule out other causes. The doctors attending to you will also conduct physical and neurological examinations to determine if Parkinson's is definitive and how severe it is. Since each person’s experience with Parkinson's is different, the diagnosis will help with a tailored treatment plan for them.
Following a diagnosis, your GP usually continues to be your main contact for long-term management of the condition.
Treatment of Parkinson's
Like other chronic diseases, the goal of treatment for Parkinson’s is to manage symptoms and help you maintain your quality of life. There is no known way to eliminate the condition or reverse its course. Doctors often recommend a combination of three treatment modalities - medication, physical activities and therapies. Although the general approach is the same for all patients, your care plan is always tailored to the specific symptoms you experience and your response to the treatment.
Pharmaceutical Treatment
Medications aim to improve the brain’s ability to control movement, such as levodopa, carbidopa, dopamine agonists, MAO-B inhibitors and anticholinergics. The specific medications and dosages are customised to each patient and may need adjustments according to its effectiveness on the individual. Inform your doctor of other treatments you are undergoing, so the doctor can take into account their potential interactions when devising your treatment plan.
It is essential to take medication precisely as prescribed, monitor your symptoms and report any side effects you experience to your doctor. This helps to ensure that symptoms are managed in an optimal way while side effects can be minimised.
Physical Activities
Challenges in muscle control, balance and coordination may dampen your enthusiasm to exercise, but making an effort to exercise pays off. Research shows that complimenting medications with regular physical activities is beneficial in managing Parkinson's. Aim for at least 2.5 hours of moderate-intensity aerobic physical activity weekly, combined with strength training twice a week.
Useful types of physical activities for individuals with Parkinson's include:
- Aerobic exercise, such as walking, swimming, or cycling
- Strength training using weights or resistance bands
- Flexibility exercises, such as yoga and stretching routines, can increase flexibility and reduce stiffness.
- Exercises such as tai chi, yoga, pilates and dancing can help to improve balance and coordination.
Having an exercise buddy or joining an activity group is a great way to stay active, build social connections, and commit to working out regularly while having a good time. It also helps you feel safer, knowing that someone is immediately available in cases of falls or other issues. In Singapore, seniors have a wide variety of options to choose from. You can join one of the free workout classes that are regularly organised across Singapore from your Healthy365 app, or walk and earn rewards with the National Step Challenge.
We recommend a range of free and low-cost activities for the elderly to stay active in Singapore here, check it out!
Therapies for Parkinson’s
Some symptoms caused by Parkinson’s can significantly interfere with daily life and need to be managed with therapies.
For all patients, physiotherapy is often beneficial to improve mobility, avoid falls or stay independent safely. In addition to physiotherapy, other types of therapies can help with different symptoms. For example, a Parkinson’s patient facing difficulty with speaking, swallowing or drooling may need speech therapy. Those with depressive symptoms may want to seek out psychotherapy to overcome their negative thoughts and feelings. Individuals who have challenges performing daily tasks such as bathing, dressing, and feeding may need a different type of therapy called occupational therapy.
Talk to your doctor about your symptoms and ask for advice on how therapies can help you manage them. Based on your needs, your doctor will suggest the most suitable therapy and facilitate the necessary referral.
Subsidies for Treatment of Parkinson’s in Singapore
Parkinson's is one of the 23 chronic diseases covered in the national Chronic Disease Management Program (CDMP). You can now enjoy subsidies of up to 87.5% for your medications with no dollar cap and requirement for cash copayment. If you are a CHAS card holder and have signed up for Healthier SG, you can use either Healthier SG Chronic Tier or CHAS Chronic Tier, whichever benefits you more. Make sure you consult your GP to decide which framework is better suited to your medication needs.
Unique Challenges in Dealing with Parkinson's
Parkinson’s is challenging for both patients and their caregivers to deal with because there is much more to the condition than meets the eye. These “invisible” challenges can be just as impactful as the physical symptoms, if not more so, because they are less understood and often go unrecognised. It is crucial to be aware that everyone’s experience is unique, and their challenges are multifaceted.
Invisible Physical Symptoms
Besides the visible tremor, poor muscle control can lead to digestive and bladder issues such as abdominal pain, constipation, and faecal and urine incontinence. Sleep disturbances are also common, resulting in restless nights, daytime sleepiness, and overall fatigue. Lack of sleep can exacerbate other daytime symptoms, making it essential to address sleep quality as part of the overall care plan.
Pain is another common symptom that up to two thirds of people with Parkinson’s have to endure. Parkinson’s is associated with more than one type of pain, including muscle pain due to stiffness and rigidity, pain from cramps and spasm (known as involuntary muscle contractions), and burning or shooting sensation of pain due to a trapped nerve (known as neuropathic pain).
Pain can be managed with appropriate physical activity, physiotherapy, pain relief medications, massage and other complementary therapies. However, if left unmanaged, pain can significantly affect your quality of life. It is advisable to discuss with your GP or specialist about your pain for an assessment and recommendations of treatment.
Invisible Emotional and Mental Challenges
Approximately 40-50% of people with Parkinson's experience depression, and anxiety is also prevalent. These emotional symptoms can profoundly impact the quality of life of both the person with Parkinson's and their caregivers. The challenge is that it can easily go unnoticed and undiagnosed.
Another less visible aspect of Parkinson's is cognitive changes and memory decline. Some people with Parkinson's disease may develop dementia later in the course of the disease. This can manifest as memory loss, confusion, impaired judgement, increased difficulty with language, and changes in mood or behaviour. Research suggests that prevalence of dementia in Parkinson's disease is close to 30%, which is 4–6 times higher than the same age group without Parkinson’s. However, not everyone with Parkinson's disease will develop dementia. Learn more about dementia in our expert interview here.
By recognising and addressing the less apparent aspects of Parkinson's, you can offer care and support to your loved one in a more meaningful way. Helping your elderly keep track of symptoms that are not easily perceived by them is also crucial to ensure treatment is timely and effective.
Tips for Daily Care and Support
Caring for a loved one with Parkinson's disease calls for a delicate balance between providing necessary support in daily activities and preserving their independence and dignity. Caregiving needs to be performed with empathy and the understanding that an elderly loved one with Parkinson’s doesn’t want to be a burden to their family. As the disease progresses, they often still want to maintain autonomy and have their choices and preferences.
As such, daily care doesn’t mean doing all the daily activities for the person with Parkinson’s. Instead, it involves providing the necessary assistance for a loved one to perform their daily tasks, creating a safe and accessible home environment for them to freely move around, and engaging in regular conversation about their feelings and challenges. Below are a few suggestions:
Assisting with Daily Activities
The role of the caregiver is to encourage independence in personal care tasks but be available to assist when needed. This means being patient and allowing extra time for a loved one to move and complete a task. To address coordination issues, you may look for utensils with large handles for easier grip, use non-breakable tableware, and guide your seniors to choose clothes that are easy to wear.
Improving Mobility
Physical activities are an essential part of the treatment plan. However, your loved one may lose interest in going out and exercising due to the symptoms of Parkinson's they have to deal with. Find time to go for a walk or take up gentle exercise like tai chi and yoga to maintain flexibility and balance. You can also work with a physiotherapist to derive a personal workout plan, until exercising becomes a habit again and your loved one can join their friends. Ask your doctor if mobility aids such as canes or walkers are necessary and obtain them. You can get up to 90% subsidy for approved assistive devices using Seniors’ Mobility and Enabling Fund (SMF) (means testing is required).
Modifying Your Home for Safety and Accessibility
A safe home encourages the elderly person to move around, promotes their independence and reduces the risks of falls and injuries. It is crucial for all seniors, more so for people with Parkinson’s. We have detailed the importance and ways to make your home senior-safe here. You can tap into HDB’s EASE scheme to get up to 95% subsidy to retrofit your HDB unit for seniors’ safety (no means testing is required).
Being Available for Emotional Support
It is crucial to safeguard the mental health of a loved one with Parkinson’s. Make time to talk to your loved one regularly, over a meal or during a walk together. Listen attentively for their feelings and challenges, and offer reassurance without immediately jumping to solutions. You can also consider joining support groups such as Parkinson Society Singapore (PSS) to meet people who share your journey. If you are working and pressed for time, check out our curated ideas to keep your elderly socially engaged here.
Palliative Care for Parkinson's
As Parkinson’s often progresses slowly, Parkinson's patients may not need palliative care in the early stage of the disease, especially if they are healthy and don’t have other health issues. However, symptoms tend to progressively worsen over time. Coupled with comorbidities, complications can arise, causing debilitating symptoms such as pain, infection, falls and injuries, immobility, cognitive decline and difficulty managing one's medications, among other problems.
This is when you may want to consider palliative care. With its comprehensive approach to address the physical and psychological needs of both the patient and family, palliative care can greatly relieve discomfort and improve a patient’s quality of life, as well as that of the family. The relief of pain and discomfort offered by palliative care can considerably improve your loved one’s well-being. Find out more about palliative care and if it is for you from our guide to palliative care in Singapore here.
Besides pain and symptom management, the palliative care team can be your companion in various aspects of your journey with Parkinson’s. Their support can include advance care planning (ACP), advance medical directive (AMD), and other terminal care concerns. Learn why advance care planning matters in our previous blog article; how to initiate a conversation about end-of-life matters with a loved one, and how to find compassionate care for the final chapters of a loved one here.
Takeaway Message
Managing Parkinson's disease extends far beyond addressing the tremors that often characterise the condition. It involves a comprehensive approach to confronting both the physical and emotional battles that come with the diagnosis. With the right awareness, regular communication and follow-up with a healthcare provider, and the appropriate care and support at home, both patients and caregivers can navigate this path more effectively. In the face of Parkinson's, let us make care, compassion and resilience our guiding lights.
About Ninkatec
Ninkatec provides home-based management of chronic diseases including Parkinson’s disease and palliative care. Our team of doctors, nurses and caregivers are guided by professionalism, empathy, and compassion. Count on us to help manage the home care needs of your elderly loved ones. We are only a WhatsApp, phone call or enquiry away.
