How to Adapt Your Home and Lifestyle for Parkinson’s Disease

As a neurological movement disorder, Parkinson’s disease (PD) can cause everything from tremors and instability to sleep issues and cognitive problems. A daunting question following a diagnosis then is: How do I keep myself or my loved one safe and independent, especially in the home?

As a neuropalliative care specialist, Christina Vaughan, MD, helps her patients and families answer that question. In her work, Vaughan helps patients grapple with the reality that medicine can’t yet fix the disease, focusing them instead on managing the symptoms and empowering their independence. Palliative care is about living as well as possible as long as possible in the face of a serious illness.

“Parkinson’s disease is a thief. It robs people of so many things incrementally over time,” Vaughan said. “And we still can't halt progression or prevent it with medications, but what we can do is strategize on how to live fully and remind people of what’s important, while connecting that to what’s possible medically.

Below, Vaughan details a series of options for managing Parkinson’s disease. She stresses that it is only a guide, and that patients should still talk with their care team – including an occupational therapist – about what might work best for them.

Overall tips

It’s easy to get overwhelmed by the amount of changes to make around the house, on top of heading to appointments. My overall advice to adapting a home and life for Parkinson’s disease is:

• Don’t do it all at once: PD is a personalized condition and affects everyone differently. Talk to your doctors, physical therapist and occupational therapist to see what you need at the moment. You certainly do not need to go out and buy everything today.
• Support groups: People have different opinions on this. Some folks say, "I don't necessarily want to go to a support group because I don't want to see what's coming, or I don't want to feel depressed or brought down." The plus side of working with a group of fellow patients is it will help you gather new ideas from people at different stages of their own journey and offer a sense of community.

Lifestyle tips

A goal with Parkinson’s disease is to help people be independent and live their life. In no particular order of priority, I think there are a few broad lifestyle things to consider:

• Establish a routine: A routine is really helpful for a strategic approach to Parkinson’s disease for safety, energy conservation and independence. Things take more time and effort with PD, and a daily task such as bathing can be tiring. But if you are conscious of your routine and recognize you have more energy in the mornings, you can build your hygiene schedule around that to take advantage. The same would go for when you decide to schedule your medical visits or physical therapy.
• Staying connected to living life: We can get so caught up in diagnosing, labeling symptoms and tweaking medications that we lose sight of the big picture. My palliative care background is to ask patients: “What’s most important to you now?”
• Socialization: We know that socialization is critical for many things, particularly in brain diseases. Parkinson's contributes to being in a low dopamine state, and being around friends and loved ones helps generate dopamine.
• Finding new things to experience: Novelty goes hand in hand with socialization and helps with cognition. Seeing new things, having new encounters and experiences are all really important. I remember interviewing a patient who said, "I have hard days, but I also have new days."

Phones and Communication

This is an area where I’ve seen patients either thrive or struggle depending on their setup. Parkinson's disease affects fine motor control, so small touch screens can become really frustrating. There are a few options to consider on this front to ensure you can stay connected and call for help if needed:

• Device size: Look for larger phones, tablets, maybe with styluses that can be easier to manipulate sometimes than smaller smartphones.
• Accessibility settings: There are options on both Apple and Android devices that can help a lot. Increasing text size, enabling voice dictation and typing and adjusting touch screen sensitivity help a lot.
• Amplification devices: Another option to look at is amplification devices for phones because PD can cause a quietness and softness to your voice – hypophonia – that can make it difficult for others to hear you. These can be microphones you wear around the neck so others can hear you more clearly.
• “Dumb phones”: I’ve seen a swing back away from smartphones. Dumb phones streamline the basic things you need a phone to do while being less overwhelming.
• Smart home devices: Voice-activated assistants can be helpful in many ways. You can make phone calls through these devices, set up the lights in your rooms, do medication reminders and even ask for emergency assistance.
• Fall alert systems: Smart watches often now have accelerometers in them that can automatically detect if you fall to alert your contacts or emergency services.
• Emergency contacts: Also make sure you have emergency contacts assigned in your phone no matter what.

Around the house

First off, don’t be afraid to ask your medical provider for a referral to an occupational therapist. These professionals are very helpful in doing home-safety assessments to make personalized recommendations for your home.

• Tools and devices: There’s no shortage of options here. From button hooks and zipper pulls to elastic shoelaces. Velcro or slip-on shoes (with a closed heel) can be really handy, too. Reachers and grabbers can help avoid falls by eliminating having to bend fully over. Other options are magnifying glasses to read, electric shavers to help avoid cuts with tremors and large-grip writing instruments since writing can be a challenge with Parkinson’s disease.
• Grab bars: Very important for areas such as bathrooms, hallways and entryways, as well as on both sides of the stairs. This helps avoid falls but also helps PD patients avoid getting “stuck” in enclosed spaces, which is a common issue.
• Lighting: Make sure that lighting is increased throughout the home. Sometimes people living with PD can have visual-processing issues where their eyes play tricks on them, particularly in shadowy areas. You’ll want to think of motion-activated lighting for overnight bathroom trips and medication access, and nightlights in every room, especially for those you’ll occupy in the evening.

Parkinson's disease can often cause psychosis, a term that includes hallucinations, delusions and illusions. These experiences are difficult, but help is available. In this Q&A, Vaughan explains the risk factors and options for managing these symptoms of Parkinson's disease. 

Furniture and floor basics

With PD, we have to reimagine the relationships with the furniture in our homes.

• Layout: You’ll want to create clear, wide pathways through your house of at least 36 inches and take a look at things like low coffee tables that could be tripping hazards. This can be tricky with how we accumulate things but is vital for safety.
• Flooring: Eliminating throw rugs. That's, again, something that's easily overlooked. Additionally, transitions in flooring between room to room can easily be overlooked. We want to make sure that there aren't major lips or nails that are sticking up, or uneven transitions from rooms.
• Chairs and sofas: Chairs and sofas should be taller and firmer, so they are easier to stand up from. Sometimes people get recliners that have lift assistance. That might be helpful for some people, but we have to make sure the person with Parkinson's can operate the buttons for the recliner.
• Avoid wheels on furniture: These create hazards when standing back up.

Kitchen

Kitchens have a lot of potential areas of concern when it comes to safety, as well as some easy adaptations:

• Safety: An electric kettle with an auto-shutoff, induction cooktops over gas or electric, timer systems for the oven and stove and making sure a fire extinguisher is easily accessible.
• Rocker knives: Really helpful for cutting things, there’s a lot of variety available online. Sometimes pizza knives are helpful, but they don't have that rocker, crescent shaped bottom, which lets you maintain stability while cutting something.
• Storage: Ideally, having items available at waist height so you don’t have to bend or reach far overhead. Open shelving, or clear cabinets, are part of this approach, so you can see before going searching for something. Hooks are excellent for mugs, utensils, pots, making frequently used items easily grabbable. Countertop “Lazy Susans” or rotating shelves can keep things in one place and easy to access. Consider putting your items in smaller containers that are easier to manipulate.

• Labeling: Can’t do open shelving? Grab a label maker. Putting labels on shelves and containers with large print is another easy option to quickly access what you need.
• Other kitchen gadgets: There’s a whole manner of options here. Grip pads for jars, as hand strength can be different. Electric can openers save time and energy. Single-serve coffee makers rather than having to deal with a carafe are particularly helpful. Oven mitts with grips can avoid drops with pans or pots. Soap-dispensing brushes eliminate the need to grip both a sponge and add soap at the same time. Lightweight containers and dishes are easier on the hands. Even countertop dishwashers can help avoid repeated bending over.

Vaughan recommends searching local nonprofits such as Good Health Will for some adaptation tools and supplies.

Bedroom and sleep

Talking about adaptations for the bedroom is critical because Parkinson’s disease can cause all sorts of sleep issues:

• Sheets: Turning in bed with PD can be tricky, so reducing friction with satin or silk sheets, sheet-slippery pajamas or bed clothes.
• Bed rails/canes: These help someone get up from bed easier. They are an L-shaped device that goes under the mattress and sticks up. Overhead trapezes are similar – you see these in hospitals on orthopedic units – and help you maneuver and get up in bed.

• Bed: You’ll want a firmer mattress so it’s easier to stand up, and adjustable beds can help elevate the head for breathing sometimes, or your legs to counteract swelling. Sometimes partners also consider swapping their larger bed for two twins/full beds because PD can commonly have dream-enactment behavior which makes co-sleeping potentially challenging. Also, king beds can be harder to find things to grab onto to get up.
• Commode: Walking to the bathroom in the dark can be hazardous, so you can consider a bedside commode to help with frequent nighttime urination.

Learn more about the complicated relationship between sleep and Parkinson's disease. 

Bathroom

There are slip and fall hazards we have to prepare for in the bathroom for Parkinson’s disease adaptations.

• Toilet: You’ll want to have a raised toilet seat and look at armrests or nearby grab bars.
• Shower: Non-slip mats here and in all wet areas. Chairs and transfer benches are also very helpful.
• Door: Once someone starts using a walker or rollator, you may have to widen the doorway to the bathroom.

Tips for caregivers

Caring for someone with Parkinson’s disease can be overwhelming, but it doesn’t have to be. We want to make sure we shine a light on the good. I mean that in a few ways.

• Honor the good days: It’s easy to get focused on the hard, challenging days. We want to meet people where they’re at and be realistic while taking the good with the bad.
• Foster independence: Let the person in your life with PD do as much as they can, even if it takes longer. Maintaining independence and dignity is crucial. This can be a tough balance between helping versus allowing more independence. Also need to recognize the inherent fluctuations in PD with “good” and “bad” days in terms of function.
• It’s not a sprint: Parkinson’s is a marathon. As someone caring for a loved one with PD, recognize you are human and prioritize your own well-being. Think like you are on a plane and “put on your oxygen mask first”. An empty vessel has nothing to give. Brainstorm with the medical/care team for ways to have some help now or in the future.