Parkinson's disease: symptoms, diagnosis and essential care
According to the World Health Organization, Parkinson's is the second most common neurodegenerative disease, just after Alzheimer's, and affects around 10 million people worldwide.
In Portugal, it is estimated that this disease affects around 20,000 people and is more common among men.
Key points of the article
- In this article we explain, in simple terms, the symptoms and how the diagnosis is made
- Recommended therapies and daily care
- The disease in younger people
- Adaptations at home
- Support services in Portugal
What is Parkinson's disease?
This disease results from a reduction in dopamine levels; when this reduction occurs, the brain cells that produce it die. Dopamine is responsible for muscle activity in our brain, and when it is reduced, the body's movements are affected.
When symptoms appear, it usually means that between 60 and 80% of the dopamine-producing cells have already been lost.
Who is most affected?
It is more common after the age of 60 and slightly more common in men, but it can appear at younger ages.
Young-onset Parkinson's
When the diagnosis occurs before the age of 50, it is referred to as young-onset Parkinson's. It may progress more slowly, but with a higher early risk of fluctuations in the effectiveness of medication, involuntary body movements and specific challenges (work, family, long-term planning).
Motor symptoms
- Bradykinesia: slower voluntary movements
- Resting tremor: involuntary movements at rest that may involve various parts of the body such as the hands, arms, legs or chin (not all patients have this symptom)
- Muscle stiffness: limbs and trunk that feel "stuck", a lack of flexibility in both the limbs and the joints
- Changes in balance and walking (postural instability, short steps, "freezing").
Non-motor symptoms
- Reduced sense of smell
- Sleep disorders (including "acting out dreams"/RBD)
- Neuropsychiatric symptoms: depression, anxiety, apathy, hallucinations
- Autonomic dysfunction: a drop in blood pressure on standing, urinary/sexual problems.
These symptoms can have a greater impact on quality of life than the motor ones and sometimes precede them by years.
Progression of the disease
The speed of progression varies greatly from person to person, as do the symptoms. Doctors usually use the Hoehn and Yahr scale to measure the progression of the disease over time.
Stage 1: Early
Symptoms are milder and do not interfere with daily activities; the tremor appears on only one side of the body. Those around the person may notice changes such as: posture, loss of balance and loss of facial expression.
Stage 2: Bilateral
Symptoms tend to worsen, affecting both sides of the body. There is difficulty walking and a worsening of posture; the person remains independent but may find it harder to carry out daily tasks.
Stage 3: Moderate Postural Instability
This is the intermediate stage of the disease; it causes a loss of balance and slower movements. Falls become more common; the person remains independent but symptoms begin to affect everyday activities such as eating and dressing. There may be "freezing" of gait, difficulty walking in a straight line or even standing up.
Stage 4: Severe Postural Instability
Symptoms are severe and limit quality of life; support may be needed to stand up. The person cannot live alone and needs assistance to carry out daily activities.
Stage 5: Dependent on others for movement
This is the most debilitating stage; stiffness in the legs may make walking impossible. A wheelchair may be needed, or the person may be confined to bed. The person may experience hallucinations and delusions. Round-the-clock care is required.
Diagnosis and medical follow-up
At an early stage the diagnosis can be harder, as the symptoms are more subtle. In older adults, it tends to be more complicated because the symptoms resemble those of ageing, such as: slower movements, loss of balance, a stooped posture and muscle stiffness
Treatment and recommended therapies
Depending on the patient's clinical profile and the stage they are at, treatments and therapies may include:
- Specific medication
- Deep Brain Stimulation (DBS): a surgical option in selected cases with motor fluctuations/resistant tremor, after specialist assessment
- Structured physical exercise: around 150 min/week of moderate to vigorous activity is recommended (aerobic, strength, balance/agility, stretching), preferably guided by physiotherapy. Exercise improves both motor and non-motor symptoms
- Physiotherapy/occupational therapy: gait and balance training, strategies for "freezing", energy for everyday life; following European guidelines
- Speech therapy: LSVT LOUD (voice) and LSVT BIG (range of movement) programmes have evidence of benefit
- Management of non-motor symptoms: sleep, mood, constipation, pain – combining adjustment of medication, lifestyle measures and specific therapies.
Daily care and quality of life
- Medication at the right time (use alarms/organisers)
- A predictable routine, with breaks and tasks broken into simple steps
- Sleep: sleep hygiene and safety if there are behaviours during sleep
- Nutrition: hydration, fibre for constipation; some patients benefit from avoiding protein around the levodopa dose (a medication that may be taken if recommended)
- Daily exercise (even short sessions) and socialising
- Warning signs: falls, sudden confusion, marked hallucinations, choking/aspiration pneumonia — seek medical care.
How to adapt the home for someone with Parkinson's
- Remove loose rugs and cables, clear hallways, good lighting (night lights)
- Bathroom: grab rails, a shower chair, a non-slip mat
- Bedroom: a bed at a safe height, easy access to the light, a clear path to the toilet
- Anti-fall/"freezing" strategies: floor markings and positioning furniture for wide strides
- An assessment by an occupational therapist/physiotherapist for personalised adaptations.
Support services available
There is a range of support available, from associations to means of transport and support networks.
The important thing is that neither the carer nor the patient feels alone during this process.
- APDPk – Associação Portuguesa de Doentes de Parkinson (the Portuguese Parkinson's Disease Association): information, support groups, training for carers and rehabilitation services (neuro physiotherapy/speech therapy)
- Young Parkies: an association whose aim is to support people with young-onset Parkinson's. Made up of doctors, researchers, carers, therapists and patients.
- Estatuto do Cuidador Informal (the Informal Carer Statute): rights, support measures and recognition (Social Security/Gov.pt)
- Rede Nacional de Cuidados Continuados Integrados (RNCCI, the National Network for Integrated Continued Care): teams and units offering physiotherapy/occupational therapy and continued care (accessed by clinical referral)
- Non-emergency patient transport (SNS): provided with a medical prescription when clinically justified; there are rules on exemptions. Alternatively, you can turn to specialist private services, such as Ambula, which provides non-emergency patient transport with comfort, safety and professional support
SNS 24 and Health Care: guidance and access to the public network.
A testimony from someone living with the disease
Joana Mesquita, diagnosed at the age of 26, says that when she was diagnosed she felt as if "everything collapsed, the ground gave way beneath my feet"; however, she explains that "the ideal is to live life as if there were no tomorrow; when something as fleeting as this happens to us, that is when we realise just how small we are." Listen to the full testimony.
Pedro Dias Ferreira, who was diagnosed at the age of 33, says he felt fear at first but that, over time, accepting the disease is important: "Accept that it is part of you, you will learn to live again. It is not the end of the world." Read the full testimony.
Living with dignity and proper support
With the right diagnosis, an individualised clinical plan, regular exercise and simple adaptations at home, it is possible to maintain independence and quality of life for many years. Activate your network (family, APDPk, health team) and ask for support early — caring well also means caring for those who care.
The content of this blog is for information only. It does not replace a medical diagnosis or treatment. Always consult a health professional.
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