After your Parkinson's disease (PD) diagnosis, you may ask, "How quickly will things change?" It's normal to want to know what to expect. There's no way to know exactly how quickly your condition will progress.
Most people have slow-progressing Parkinson's. In fact, it can often take 10 or 15 years, or even longer, before Parkinson's reaches the later stages. But it's also possible that your PD won't reach a later stage for 20 years.
Only about 1 person out of 5 with Parkinson's has the fast-progressing type. So it's possible you could see your symptoms worsen more quickly. But you can prepare and help your loved ones prepare, too.
PD is a progressive condition, and eventually, your treatments can stop working. That's true regardless of how fast or slow the condition progresses.
Explore how to build a care team and the types of care that can keep you comfortable. And find out which treatments can help support your quality of life as long as possible.
Signs of Advanced-Stage Parkinson's Disease
Parkinson's has five stages, each with different symptoms.
Challenges in advanced Parkinson's disease often include:
- Frequent falls
- Serious stiffness (You may need help standing or walking.)
- Serious difficulty swallowing (dysphagia)
- Dementia
- Persistent hallucinations
- Excessive daytime sleepiness
- Serious constipation
- Mood changes
- Feeling of urgency to pee (urinate) more often
These changes can be hard on you and your caregivers. But planning for your care as your disease progresses helps both you and your loved ones.
Building a Supportive Care Team for Advanced Parkinson's Disease
As your condition progresses, your caregiver may need outside help. This can help keep them rested, and from burning out.
You and your caregiver can tap into your larger network, including:
- Family members
- Social network
- Other local resources, if you haven't already
Enlist friends and family
A great first step is to identify someone who you can call in an emergency. If your caregiver becomes ill or unable to help you, you'll need a backup plan.
Next, consider whether someone could give a couple of hours a week to help you out. This way, your primary caregiver can visit a friend, go to a social activity, or just have time to rest.
If possible, aim to assemble a team of people who could take turns or at least serve as an extra backup when your main caregiver needs help.
Tap into your community
Community-based and faith-based organizations may also have resources for you. These organizations may offer aid at low or no cost.
Organizations close to home may also have volunteers who can run errands for you or provide basic care. Reach out to see what's available in your community.
Consider private care
If you hire private care, think about what type of caregiver you need. You can ask questions like:
- Do you only need someone around to keep you safe?
- Do you need someone for light housework?
- Do you need a health care professional?
Seek trained or experienced people
Try to look for someone who's trained or has experience if you need help with bathing, eating, or other personal care.
Your hospital's social work department is a good place to ask for help. Social workers are tapped into what's available locally. They may know of people or organizations that you aren't aware of.
If you know of others in your community who've had similar needs, ask them, too. Word of mouth is a great way to find trusted people and resources.
What Is Rehabilitative Care for Advanced Parkinson's Disease?
Rehabilitation, or rehab, can help you improve and get physically stronger. Since Parkinson's disease progresses, rehabilitative care can help you maintain or improve your:
- Day-to-day function
- Independence
- Quality of life
- Physical abilities
Benefits of rehabilitative care
Rehabilitative care in later-stage Parkinson's disease can bring important benefits, such as:
- Fewer hospital stays
- Avoiding falls
- Less choking
- Lower chance of getting infections
Staying out of the hospital as much as you can for as long as you can is another goal of rehab.
One study found that rehabilitative care helped patients with advanced Parkinson's disease stay at home longer, lowering their risk of nursing home care. The program included six weeks of care in a hospital, followed by a support program at home over two years.
Start rehabilitative care early
Many people with Parkinson's disease may not get rehabilitative support until the illness has progressed quite far. But many experts believe earlier rehab can help, even rehabilitation right after a diagnosis.
Ask your care team about rehabilitative care and what you can do to get started.
What Is Palliative Care for Advanced Parkinson's?
Palliative care is sometimes called "hospice," but they're actually two different branches of medicine. Hospice can care for you at the end of life, but palliative care aims to support you through all the stages of your illness.
You can start palliative care at any time after a life-changing diagnosis like Parkinson's disease.
Why get palliative care?
According to the World Health Organization, palliative care can improve your and your family’s quality of life. It can help you face physical, psychological, social, and spiritual challenges that may come with a life-threatening illness.
One study found that palliative care may improve quality of life for people with Parkinson's, and those that got palliative care also had:
- Fewer serious symptoms
- Fewer hospital visits
- Less grief, psychologically
- Filled out advance directives more often
Filling out your advance directive can also help you outline your end-of-life choices and ensure the type of care you'd like to get.
Where to get palliative care
There are many ways to access palliative care, including in your:
- Home
- Health care facilities
- Outpatient clinics
How can palliative care help?
Palliative care can help you with medications, treatments, and devices. You can also get mental and spiritual support with this type of care.
Palliative care team
Your palliative team may be large, with members that change depending on your needs at the time.
Ask if there are palliative care professionals in your community who are specially trained in Parkinson's disease.
The Parkinson's Foundation has a palliative care program that trains specialists and teams. Look for people who trained at the Parkinson's Foundations Centers of Excellence across the country.
Covering Costs for Parkinson's
The cost to treat and care for a progressive condition can add up. But many insurance policies cover rehabilitative and palliative care.
Some services are also covered by:
- Medicare
- Medicaid
- Department of Veteran Affairs
If you're having trouble finding out about what you qualify for, ask your health care team about getting a social worker to help.
Advocate for your health and find support
You're not alone. Your family and loved ones can help and support you as you navigate Parkinson's disease. Appoint a loved one to speak up for you if you can't.
You or your loved one can let your care team know about any challenges or unmet needs you're facing.
Write down questions and any change in symptoms. This can help you or your loved one remember what to ask your health care team.
You're at the center of your health care plan. Share your goals with your loved ones and your health care team.
Ask for support ahead of time and look for a local Parkinson's Foundation chapter near you. It's a great place to find help and resources.
Show Sources
Photo Credit: Westend61/Getty Images
SOURCES:
Annals of Palliative Medicine: "Palliative care for Parkinson's Disease."
Cleveland Clinic: "Parkinson's Disease Medications."
Clinics in Geriatric Medicine: "Palliative Care for Parkinson Disease."
Davis Phinney Foundation for Parkinson's: "Advanced Parkinson's: Symptoms, Complications, and Care Strategies."
Frontiers in Neurology: "Combined multidisciplinary in/outpatient rehabilitation delays definite nursing home admission in advanced Parkinson's disease patients."
NPJ Parkinson's Disease: "Progression subtypes in Parkinson's disease identified by a data-driven multi cohort analysis."
Parkinson's Foundation: "Stages of Parkinson's," "Rehabilitation Care and Parkinson's: Start Early and Assess Often," "Research Study Makes Case for Palliative Care Early in Parkinson's Treatment," "Getting Outside Help."
Parkinson's UK: "Therapy for Parkinson's."
Stanford Medicine: "The Parkinson's Journey: Understanding Progression."
World Health Organization: "Palliative care."
