Empowering individuals living with Atypical Parkinson’s involves a multifaceted approach.
This approach includes education, lifestyle adjustments, and building a strong support system. Together, these elements help individuals improve their quality of life and face the challenges of Atypical Parkinson’s with resilience and optimism.
Understanding Atypical Parkinson’s
Atypical Parkinson’s or Parkinson’s plus conditions are a group of rare neurological disorders that share some symptoms with Parkinson’s disease but have distinct features and typically a more rapid progression. They also often do not respond well to standard Parkinson’s medications. These disorders include Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal Degeneration (CBD), and Dementia with Lewy Bodies (DLB).
Each condition has its own set of symptoms, which may include balance problems, stiffness, difficulty with movement, and cognitive changes. Diagnosing atypical parkinsonisms can be challenging and may require specialised testing and evaluation by a neurologist or movement disorder specialist familiar with these conditions. Treatment focuses on managing symptoms and improving quality of life, often involving a multidisciplinary approach tailored to individual needs.
We aim to empower individuals navigating Atypical Parkinson’s by shedding light on the conditions within this spectrum, their unique symptoms, and strategies for effective care. See Parkinsonisms & other movement disorders page.
Key motor and non-motor symptoms
Like Parkinson’s, individuals with Atypical Parkinson’s may experience parkinsonisms including tremors, bradykinesia (slowed movement), and rigidity.
Atypical Parkinson’s often involves autonomic dysfunction, speech and swallowing difficulties, cognitive impairment, and balance problems.
Diagnosing Atypical Parkinson’s
Common atypical conditions include Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Dementia with Lewy Bodies (DLB) and Corticobasal Degeneration (CBD).
Unlike idopathic or genetic Parkinson’s, these conditions often progress more rapidly, present a broader range of symptoms, and have a more profound impact on daily life.
Atypical Parkinson’s can be challenging to diagnose due to the absence of early abnormalities on scans. Diagnosis relies on clinical evaluation based on symptoms and medical history. Clear indicators against a Parkinson’s diagnosis include challenges with ataxia, dyspraxia, eye problems, and slurred speech. Levodopa trials may be required for accurate diagnosis, with a proper trial period before ruling out Parkinson’s.
Tips for daily living
Adopt a holistic approach to managing symptoms. Focus on physical, mental, and emotional well-being through a combination of medications, therapies, and lifestyle adjustments.
Engage in activities that stimulate both the mind and body, such as physical exercise, cognitive exercises, and artistic pursuits. This can help enhance overall quality of life.
Utilise adaptive devices to maintain independence. From walking aids to speech assistance devices, technology and tools are available to support daily activities.
Maintain good nutrition to support overall health. Consider consulting with a dietitian to address specific dietary needs and challenges associated with Atypical Parkinson’s.
Schedule regular check-ups with healthcare professionals, including neurologists, physical therapists, and speech pathologist, to monitor the progression of the condition and adjust management strategies accordingly.
Building a support system
Empower yourself and your support network with knowledge about Atypical Parkinson’s. Attend educational workshops, join support groups, and stay informed about the latest research and emerging treatments.
Foster open communication with healthcare providers, caregivers, and family members. Share your experiences, concerns, and preferences to facilitate collaborative care.
Address the emotional aspects of living with Atypical Parkinson’s by seeking counselling or participating in support groups. Emotional well-being is an integral part of overall health.
If you are a caregiver, take time for self-care, attend caregiver support groups, and ensure you have access to the necessary resources and information to provide the best care possible.
Forms will need to be filled out by your GP or neurologist for many things once diagnosed. It will save time and money if you can prepare for your appointments and bring everything along with you including asking for a letter confirming your diagnosis and documents for:
- Driver’s licence holders must report a medical condition. The forms are found on your state or territory’s driving authority’s webpage.
- Insurance needs proof of diagnosis for trauma and other claims. They may have special forms to fill out so contact them directly.
- NDIS or Support at Home applications will need a proof of diagnosis letter and reports by treating therapists on the impacts of Parkinson’s on your quality of life
If someone cannot go along with you to the appointment, see if your care partner can ring and listen in on speaker.
Other supports to think about
- Friends and family can be a part of your support network along with others in your support groups.
- Advance care planning and financial counselling can be part of early discussions with social workers.
- Neuro-ophthalmology for those experiencing eye issues.
- Urologists for continence and sexual dysfunction issues.
- Gastroenterologist for chronic constipation.
- Continence specialists bladder and bowel issues.
- Gynaecologists/obstetricians/menopause specialist depending on your life stage.
- Palliative care is a care approach that helps people with Parkinson’s and care partners.
