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.
- Standing and Sitting
- Freezing and Falls
- Mealtime and Swallowing
- Safety in the Bathroom
- Safety in the Bedroom
- Travel and Transportation
- Medication Management
- Skin Care
Standing and Sitting
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 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.”
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.
Assistive Devices That Can Help
Adaptive tools and assistive technology — innovative devices designed to improve daily living — can enhance function and wellbeing and foster continued independence.
Mealtime and Swallowing
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.
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.
Safety in the Bathroom
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.
Safety in the Bedroom
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.
Parkinson’s & Sleep
More than 75% of people with Parkinson's disease report sleep disorders as a symptom. Learn tips for managing this symptom of PD.
Travel and Transportation
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.
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.