Occupational therapy and advanced Parkinson’s: What to expect

As Parkinson’s disease progresses, your daily routines and support needs may evolve. You may notice new difficulties with movement, thinking, or completing familiar tasks. In advanced stages, you may find yourself relying more on your caregivers for help.

A personalized occupational therapy plan can meet you where you are. By taking a goal-oriented approach, occupational therapy can complement advanced Parkinson’s disease treatment and give you practical ways to stay safe, maintain independence, and manage changes in your abilities over time.

How occupational therapy can help

Occupational therapists can suggest ways to adapt your daily activities — from getting out of bed to making dinner — and manage symptoms of advanced Parkinson’s.

“We really look at the person, the environment, and the occupations — the activities that we need to do every day,” says Joni Kamiya, an occupational therapist based in Oahu, Hawaii.

With advanced Parkinson’s, you may face multiple issues, she says, so the focus of occupational therapy should be on finding ways to support your overall functioning.

Introducing practical strategies for daily living

Advanced Parkinson’s often entails progressive motor and cognitive symptoms — such as slowed movements and memory problems — which can affect daily life and relationships.

Over time, you may notice it has become more challenging to get dressed, shower, or brush your hair. An occupational therapist can recommend adaptive clothing or tools, bathroom modifications, and grooming techniques that accommodate individual needs.

They can also teach you how to break down physical tasks into smaller, more manageable steps, use reminders and labeling systems, and enhance safety by recommending mobility aids, safe transfer methods, and home adaptations to reduce tripping hazards.

Finally, an occupational therapist can help you continue to participate in the activities you enjoy, such as socializing or engaging in hobbies. Examples include recommendations for communication aids to facilitate chatting with friends, as well as suggestions for ergonomic tools for gardening and improved lighting for reading.

Understanding your goals

Kamiya believes that effective occupational therapy should be grounded in your goals. Specifying those goals from the start can help your therapist find the best ways to approach any challenges.

For one of her clients, who has advanced Parkinson’s, his goal was to be able to feed himself. His symptoms, including severe dyskinesia, involuntary muscle movements, made the task extremely difficult, causing him to lose a lot of weight.

Kamiya decided to try something new: she put his feet down and held them down. As she did that, the involuntary movements in his upper body stopped.

She then constructed what she calls “weighted shoes” by stacking phone books, securing them with tape, and adding straps so he could slide his feet in.

Her idea worked.

“His arm movements decreased miraculously,” she says.

Combined with some other simple adjustments, the adaptation enabled him not only to feed himself but also to regain 20 pounds.

Additional positive outcomes followed.

“It was a life-changer because he liked to go out with his friends every once in a while, and he was able to go out with his friends, have a meal outside, and not feel so embarrassed that he had to be fed,” Kamiya says.

Advice for finding the right occupational therapist

Kamiya stresses the importance of specialized expertise in occupational therapy. In other words, do your best to find someone who has treated other people with Parkinson’s.

Kamiya recommends asking direct questions when considering a prospective occupational therapist. For example, you can inquire whether they have experience treating people with Parkinson’s or if they’re certified in neurological interventions.

If you’re not satisfied with their answers, you may want to continue your search. “Because you might find the person who can really help you live a better life,” says Kamiya.

Preparing for an appointment

To get the most out of your appointment with an occupational therapist, it helps to come prepared. Consider these steps:

• Clarify your goals: Ask yourself what you want to accomplish, and be ready to communicate your goals to the therapist. This way, they will know better how to help you.
• Prepare a list of questions: “When you go in [with a list of questions] you can get the answers you want,” says Kamiya.
• Gather relevant medical information: Bring a list of medications you take for managing your Parkinson’s symptoms, therapy notes, and any information on adaptive equipment you currently use.
• Consider bringing a caregiver: Your caregiver can offer valuable insights into your daily routines and learn new strategies to support you.
• Be prepared to advocate for yourself: Your needs matter, and speaking up helps your therapist tailor the plan to your specific needs.

Living with Parkinson’s can become increasingly challenging, especially in its more advanced stages. Occupational therapy can offer you the tools to help manage symptoms, maintain your autonomy, and continue to find meaning and fulfillment in daily life.