Advanced Parkinson’s disease (PD) often complicates the daily activities a person with living with Parkinson’s. Below we highlight how care partners can help their loved ones adjust to these changes.
When at home, make sure your loved one uses a chair with sturdy arm rests and a stable base. Avoid soft, low seating or upholstery such as velour or velvet, which can make it more difficult to move.
Tips for helping your loved one safely sit and stand:
Remind them to scoot their hips forward to the edge of the chair when attempting to get up.
Check that your loved one’s feet are placed firmly underneath before standing. You may need to help with proper foot placement.
Use cues like “nose over toes” to provide a goal for leaning forward and transitioning to a standing position.
Avoid pulling arms or legs when helping them stand.
Use chairs with arm rests. Ask them to put both hands on the arm rests and lean forward before sitting. The backs of both legs need to be against the seat before attempting to sit. This helps maintain smooth, controlled motion and avoids “crash landings,” which can be dangerous.
Use a transfer belt to lift your loved one if your loved one cannot get up independently. This often makes aiding safer (for both of you) and easier. These belts can be purchased at a medical equipment store.
Remind your loved one to continue to use their walker when turning to sit down.
Walking
Walking changes are common in Parkinson’s and can become more difficult to manage as PD progresses. Tips for helping your loved one to walk safely:
Avoid distractions when walking. Attempts to do more than one thing at the same time make walking and balance more difficult.
Remind them to take big steps. People with PD often need reminders, or “cues,” to take long steps as automatic motions become more difficult to perform. Keep cues short and simple, for example, “Big steps.” People with Parkinson’s often take smaller steps, which are more unstable than bigger steps.
Watch out for pets in the home. Pets provide physical and mental benefits, but they can also be a tripping hazard. Work with your pets so that they learn not to spend too much time “underfoot.”
Freezing
People with Parkinson’s sometimes experience “freezing” episodes (feeling like your feet are glued to floor). Freezing is a significant cause of falls, so it is important that you understand what is happening and what you can do to support your loved one.
Avoid tight turns when possible. Instruct your loved one to make wider turns as freezing often happens while turning around in close quarters.
Count aloud or clap a rhythmic beat can sometimes help, some care partners will even put on music that is in the style of a “march” when their loved one is frozen.
Try a visual cue. Some people respond better with a visual cue, such as asking them to step over your foot.
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Even with safety precautions in place, sometimes falls occur. It is important to have a back-up plan before a fall happens.
Consider how you’ll access help in the event of a fall.
Do you need an emergency call button or other system installed in your home to summon help?
Do you have a friend, relative or neighbor who is able to help?
It is important to learn a safe method for helping your loved one up from the ground to avoid injury to both of you. Work with a physical therapist to prepare steps to follow in case a fall occurs.
Breathe and communicate calmly to keep your loved one safe.
Take time to make sure they are not injured. Allow them time to rest, as needed, before trying to get up.
Encourage the person to scoot to a solid piece of furniture or another object they can use to help pull themselves up.
A transfer belt can provide you with a firm grip to aid the person get up. Work together and make sure everyone is aware of the plan before starting to get up.
If you determine that it is unsafe to help the person up without more assistance, call for help. As you wait for help to arrive, make your loved one as comfortable as possible.
Advanced Parkinson’s frequently causes difficulty with eating and drinking because of movement and swallowing problems. Making some adjustments to mealtime can help your loved one eat and get the nutrition they need.
Keep posture upright. Use small pillows or cushions to keep posture as upright as possible, which can help with the eating process.
Utilize adaptive tools. Utensils and cups, including curved and/or built-up forks and spoons, rocker knives, plate guards, nosey cups and covered cups. An occupational therapist can help determine what types of adaptive equipment might work best.
Choose a pleasant, quiet environment without a lot of distractions.
Place the plate and cup on an elevated tray if your loved one has neck immobility or vision changes.
Protect clothing with a neck napkin, apron or other protective garment.
Consider changes in vision that may make it more difficult for your loved one if the color of the food is the same color as the dish. Consider using dark dishes when serving light-colored foods, and light dishes when serving dark foods.
Cut food into bite-size portions.
Some foods are difficult to eat because of swallowing issues or motor symptoms. Make sure to serve foods that are easy to eat.
Avoid tough, dry or crumbly textures that might be difficult to swallow.
Cut food into smaller “finger food” portions to maximize independence.
Choose foods that are easier to chew and swallow. For example:
Lean hamburger or beef stew (avoid steak)
Baked or broiled fish
Eggs (a good source of protein with many ways to serve them)
Cooked vegetables
Soft fruits such as berries and melons
Rice, whole grains and beans
Gravies, sauces or butter (moisten foods for easier swallowing)
Hydration is important for your loved one with PD. To help ensure they are drinking enough fluids:
Aim for 48 to 64 ounces of liquid daily. This means six to eight glasses of liquid per day. One easy way to increase daily liquid intake is to drink a glass of water with each Parkinson’s medication dose.
Encourage sips of liquid between solid foods.
Shorten the length of straws by cutting off part of the bottom to decrease the volume of liquid consumed through the straw at one time.
Serve foods with higher liquid contents, such as fruits, vegetables, Jell-O, and yogurt.
It is not uncommon for people with PD to have a low appetite or to eat very little at each meal. To address this:
Schedule mealtimes when medications are working best.
Serve small, frequent meals if your loved one experiences weight loss, low blood pressure or fatigue or feels full quickly.
Always give food or medications when your loved one is seated in an upright position. It is not safe for them to swallow when they are reclined or lying down. Remind them to stay upright for 30 minutes after each meal to prevent aspiration.
Weight loss is common for people with more advanced Parkinson’s. Difficulty swallowing, feeling full or bloated and improperly fitting dentures are all potential reasons. Address weight loss with your loved one’s medical team.
Encourage them to eat more frequently. Switch from three meals to five or six smaller meals a day.
Drink a high calorie nutritional beverage between meals. Even four ounces twice a day will add calories.
Increase caloric intake through food and drinks.
Switch to a higher fat milk, such as 2% or whole milk.
Serve 100% fruit juices instead of water.
Add butter, nut butters, gravy, sauces and/or avocado to meals.
Serve fruit canned in syrup or frozen with sugar.
Serve vegetables with cheese spreads, sour cream, dips, salad dressings or sauces.
Offer drink supplements that are high-calorie, not high-protein.
Make a smoothie or milkshake, using bottled or powder supplements, whole milk, along with fruit or syrups for flavor.
Prepare pudding with 2% or whole milk, and top with crushed graham crackers or whipped cream.
Offer ice cream or frozen yogurt, topped with syrup or fruit.
Advancing Parkinson’s can make getting dressed a more challenging activity, where care partners often need to help. Changes to clothing and the dressing routine can improve safety and reduce frustration.
Dressing tips for care partners:
Ensure adequate time for dressing. Stress can make PD symptoms worse, so your loved one may not be able to help as much if you are rushing.
Dress at the right time. Consider waiting to dress until your loved one’s PD medications are working and they are more mobile.
Be prepared. Gather all necessary clothing items before beginning to dress to eliminate multiple trips to the closet or dresser.
Choose the right clothes. Opt for clothes that is soft and stretchy with an elastic waistband, front openings and bras that hook in the front. Tube socks may be easier to put on than dress socks. Explore more clothing tips.
Offer choices. Giving your loved one a voice in a process that may make them feel discouraged can make a big difference. For example, ask them to choose between a red or blue shirt.
Encourage participation in physical movement. Allow your loved one to be involved in the dressing process as much as possible. Find ways to encourage extra arm or leg movement for your loved one during dressing to keep muscles flexible. This also builds range of motion and flexibility exercise into the daily routine.
Stay safe while dressing. When possible, ask your loved one stay seated or lying down while putting on pants, socks and shoes. This will help reduce loss of balance and falls, and help you reduce back strain.
Bathing, using the toilet, personal hygiene and grooming are basic activities of daily living that advanced Parkinson’s can make more challenging. The following tips will help make these activities easier, and safer, for you and your loved one.
People with Parkinson’s may experience bladder problems. Creating a regular bathroom schedule can help decrease accidents during the day and prevent the sudden need to use the bathroom.
Make sure your loved one gets close enough to the toilet seat with body properly aligned before attempting to sit down. Marking the floor with colored tape may help to signal proper foot placement during the transfer.
Have moist, flushable hygiene wipes available in addition to toilet paper to achieve proper cleaning after toileting.
Help them wash their hands, even if from a seated position.
Consider buying incontinence pads if the person with Parkinson’s has accidents during the day. Larger pads can be placed on the bed if incontinence is a problem at night. Read pad labels and packaging to determine sizing.
Bathing is a private and personal part of a daily routine. In addition to these tips, ask your loved one how you can help make them most comfortable.
Make the room warm and gather all necessary supplies before you turn on the water.
Ideally, use a walk-in shower with handheld nozzle, grab bar and tub bench with a back rest for safe bathing.
Consider a tub bench that extends over the side of the tub, if a bathtub is the only option.
Use a non-slip mat to decrease falls risk.
Adjust the water temperature before they enter the bath. Use warm water and gentle water pressure.
Wrap your loved one in a robe or towel after bathing. Make sure skin is dried thoroughly. Powders and lotions should be used to ensure good skin care.
Consider a bed bath if immobility prevents getting into a tub or shower. Make sure the water is warm and the person is covered to only expose the portion of the body being washed and dried. Raise bed height, if possible, to help save your back.
Use hand sanitizer, antibacterial soaps and moist towelettes throughout the day to maintain hygiene.
For many, shaving is a piece of independence they can maintain. Try to respect your loved one’s wishes about shaving. When they choose to shave:
Use an electric razor
Rinse the skin well with a wet washcloth and pat dry.
Apply a soothing lotion; aftershave astringents are often too harsh for older skin.
Dental care is especially important for people with PD because of issues with drooling and swallowing. Follow these tips to help your loved one maintain good oral health.
Gather needed supplies in advance such as a soft toothbrush, fluoride toothpaste, small basin for rinsing and dental floss picks. An electric toothbrush may be used.
Choose a place that is comfortable to brush. The kitchen or dining room may be better than the bathroom.
Brush teeth twice daily. Be patient and verbalize each step in the process.
Parkinson’s can create many challenges to getting a good night’s rest, both for you and your loved one. If your loved one is not sleeping well, it is highly likely that your sleep will be disrupted as well.
Consider these tips when creating ideal sleeping arrangements:
Choose a bed that is comfortable and conducive to sleep.
Consider twin beds or sleeping in separate rooms to ensure better rest for both of you. Consider using a call button, alert system or monitor if sleeping in separate rooms.
Use a firm mattress to make rolling and movements easy to perform. Avoid water beds or excessively soft mattresses that hinder your loved one’s ability to roll or move.
Get a half side rail or bed pole for the person with Parkinson’s to use as a sturdy hand grip when rolling or when trying to get into and out of bed.
Make moving in bed easier by using a piece of slippery, satin-based fabric through the middle third of the bed, so it fits under the person’s shoulders and hips. Avoid flannel sheets and nightwear that add friction.
Remove the top sheet; instead, use a lightweight comforter to allow your loved one to move more easily and prevent feet from becoming tangled.
Hospital beds can be used to adjust more easily. They can be raised during dressing and bathing and lowered as the person tries to get up.
Provide cues to help the person with Parkinson’s properly align their body when getting into bed.
Make sure the backs of both legs are against the bed before sitting down.
Help them bring their legs up as they lay down, trying to stay in good alignment.
Avoid having the person attempt to crawl into bed by placing a knee on the mattress. This makes it difficult to achieve necessary alignment.
Transitioning from bed to standing can be difficult, and even nerve-wracking, especially if the person with PD is experiencing “off” time. A physical therapist can help teach proper techniques to safety practice bed transfers.
When aiding out of bed, it is usually best for them to start on their back, looking up at the ceiling.
Bend their knees, allowing feet to rest firmly on the mattress. If the person with Parkinson’s has a lot of morning stiffness, move the knees side to side from this position to help them become more flexible and ready to get up.
Help them onto their side. Have them reach across the body to grasp the side rail or bed pole for better leverage.
Once on the side, help them get their feet off the bed and begin to push up on the side rail or bed pole, moving to a seated position.
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More than 75% of people with Parkinson's disease report sleep disorders as a symptom. Learn tips for managing this symptom of PD.
Leaving the home for appointments, family events or other activities can be difficult for a person with advanced Parkinson’s. These outings are often necessary, and can add to quality of life, so it is important to consider methods that promote safety and decrease care partner stress.
Try to schedule appointments when the person with Parkinson’s is rested and PD medications are most likely to be working well.
If endurance allows, schedule a few appointments on the same day, especially if they are located in the same clinic or medical complex.
Pack a small bag with medication, liquids, snacks and/or incontinence pads if you will be away from home for a while.
See these tips in action, with our videos: Travel and Transportation Part 1 and Part 2.
Make sure the person with Parkinson’s moves close to the car with proper body alignment, turning to sit down safely on the seat before moving legs into the car.
Place a slippery satin-based fabric square or cushion on the car seat to make it easier to move and get positioned.
Get adaptive equipment to make car travel easier:
A portable handle can be slid into place to serve as an arm rest, allowing “push off” during transfers.
A seat belt hand grasp allows the person to reach across and grab the belt to pull it across the body more easily.
A seat belt extender can make the seat belt easier to align and lock into place.
Practice putting your loved one’s walker or wheelchair into the trunk or back seat of your vehicle before the day of the outing to make sure you know how to lift it safely. Electric wheelchairs or scooters are generally not portable enough to be stored in a standard car trunk, which may limit the ability to use them outside the home.
Consider getting a foldable walker and wheelchair for outings. Transport chairs are lighter and more portable than standard wheelchairs but are not designed for continual use. A physical therapist can help you find the right items and show you how to use and lift them.
Getting medication on time is key to managing Parkinson’s at any stage, but especially in advanced Parkinson’s. PD medications are scheduled at a particular time of day to try to avoid a “wearing-off” effect before the next dose.
Some PD medications, like carbidopa/levodopa (Sinemet), only last for three to five hours (or less), and then symptoms usually return, making it harder to move. Help your loved one stick to medication timing by keeping everything organized.
Keep an updated list (name, dose, frequency and purpose of the medication). Download our Medication Form and share it with your doctors.
Set up medications in a weekly pill box with a secure lid.
If taking medication four times a day or less, you can purchase a weekly pill box with four compartments per day. Try to find one with a removable strip for each day, so the day’s medications can be easily carried with you when you leave home.
If dosing is more than four times daily, consider purchasing seven weekly pill boxes, using one box for each day. Tape over the days of the week and write down medication dose times.
Place all medications into pill boxes, including over-the-counter medications.
Some pharmacies can package medications and will send them to your home on a monthly basis. All medications are organized into individual packets labeled with medication day, date and time to be taken. Check with your pharmacy to see if they provide this service.
Store all medication bottles and pill boxes in a secure place where they will not be mistaken for food.
Set a reminder for pill times. A smart phone works well and is easily programmable. When the alarm rings, provide the medication right away.
When away from home, carry your loved one’s daily pills with you. A long wait at an appointment, heavy traffic or other delay could mean that the next dose is needed before you get home.
If you loved one takes an MAO-B inhibitor (rasagiline, selegiline), talk to the PD doctor before adding new prescriptions or over-the-counter medications. Some over-the-counter medications may not be safe. Ask the doctor about cold medications.
Caution: Do not suddenly stop PD medications.
Parkinson’s Medications 101
For detailed information about the different types of medications used to treat Parkinson’s movement and non-movement symptoms, utilize these free resources.
An often-overlooked symptom of Parkinson’s is the effect on skin. People with PD have an increased risk of developing melanoma, a type of skin cancer linked to sun exposure. The person with Parkinson’s may also have more difficulty changing position, which can result in skin breakdown.
Avoid hot, mid-day sun and seek shade when outside. Be sure to apply sunscreen and a sunhat.
Help your loved one change position every two hours. If your loved one is in a wheelchair, get a cushion to lessen the risk of pressure sores. See an occupational or rehab therapist to make sure the right cushions are used.
Check skin regularly for redness, blisters and/or open sores. Report any changes promptly to their doctor.
Avoid skin contact with plastic coating and tapes from incontinence products; these can irritate the skin.
Use lotion to prevent dryness.
Consider an eggcrate or alternating pressure mattress pad to reduce pressure points.
