LIVING WELL WITH PARKINSON’S DISEASE
The following article contains information from the Parkinson’s Foundation web site at Parkinson.org:
Living with Parkinson’s or caring for someone battling the disease presents many challenges for maintaining a good quality of life. Basic activities of daily living like personal care, getting dressed, preparing meals and transportation can become frustrating, but these tips that address safety can also make things easier for you or your loved one.
- Bathtubs and shower stalls should have at least two handrails to hold onto as you get in and out. These should be professionally installed when possible.
- Never use the towel bar, soap dish or faucet as a handrail.
- If you do not have access to a shower and use a tub for bathing, install a tub rail for support and safety when getting in and out of the tub.
- If you sit on a tub transfer bench or shower chair while showering, use a handheld showerhead.
- Lower your hot water temperature to less than 120 degrees.
- All bathtubs and shower stalls should have a non-skid rubber bath mat.
- All bathroom rugs should have a rubber backing. Try kitchen rugs instead of bath rugs, as they tend to be thinner.
- Don't use bar soap! It is slippery and hard to hold and can leave a slippery film on the floor that you could slip on. Use pump soaps instead.
- Install a shelf in the tub or shower area so you do not have to bend to pick up items. Shelving works best when items can be stored between the level of the shoulders and knees.
- If you are alone, make sure you can call for help if you need it. Take your cell phone with you, or your medical alert device if you have one.
- Sit down to brush your teeth, shave or dry your hair. This will help prevent falls and conserve energy.
- Use an electric razor.
- Use an electric toothbrush.
- Use a hands-free hairdryer that can be mounted on a vanity.
Most falls take place in the bathroom because of difficulty getting on and off the toilet and in and out of the tub; difficulty seeing due to poor lighting; slipping on wet surfaces; tripping on throw rugs; or getting dizzy while standing from the toilet to the sink.
- Use an elevated toilet seat or installing a sturdy toilet frame to provide stability and help you get up safely and with less effort.
- Install grab bars near the toilet, tub and shower: no location should require use of towel racks, faucets or soap dishes as grab bars.
- If getting up at night to use the bathroom is problem, limit evening fluids 2 hours before bedtime.
- Keep a nightlight on in the bathroom in case you do have to use the bathroom at night.
- Double void: Wait a few minutes on the toilet after you’ve gone. Try going again to make sure your bladder is completely emptied.
- Consider using an incontinence product such as a pad or shield to help if you are prone to accidents. We all have modesty concerns, but privately wearing these products is better than publicly having an accident.
- Allow plenty of time for dressing. Hurrying can lead to stress, and stress can make PD symptoms worse.
- Consider waiting for a time to dress when your medications are working well and you have the best mobility possible.
- Do a few stretching exercises before getting dressed to “warm up” muscles.
- If one arm or leg has more stiffness, put this limb into the sleeve or pant leg first.
- Sit down when dressing. Choose a chair with firm support and arms.
- Don’t sit on the edge of the bed to dress—this can lead to loss of balance and falling.
- Use a footstool to make it easier to put on shoes and socks.
- Choose clothing styles and fabrics that make dressing easier.
- Avoid velour and similar fabrics, which can create more friction with other surfaces and make it hard to dress or move during the day.
- Wear non-skid socks instead of bathroom slippers, which can slide off your feet.
- Wear lightweight, supportive shoes with Velcro closures or elastic shoelaces, which make it easier to put on and take off shoes.
- Velcro can be sewn into existing clothes (replace buttons with Velcro closures). Or you can buy clothing designed for easier dressing from adaptive clothing catalogs.
- Elastic shoelaces and “lace locks” allow for tightening shoes without tying.
- Continue physical activities such as gardening and housework as you are able.
- Walk with a friend or family member.
- Attend a community exercise program.
- Move around frequently: If you watch TV, walk during commercials.
- Choose a reclining chair back, which is helpful if you have to make posture changes, have low blood pressure or you need to rest during the day.
MOBILITY – GETTING AROUND
If you experience freezing of gait, there are laser canes and walkers available. These have a laser that projects a line to help cue your steps. U-Step has a laser cane with a triangular rubber tip that is more stable than a standard rubber tip and is easy to put down correctly.
- Use a straight cane with a rubber tip.
- Handgrips should be comfortable and be adjusted to the correct height for best support.
- Hiking sticks or poles are also helpful and can help you keep a better posture while walking. Be sure to consult a physical therapist to determine whether these devices are safe for you.
- Avoid tripod canes or quad canes (those with three or four-point bases). People with PD tend to have difficulty using these types of canes. They provide less stability, as all points don’t touch the ground at the same time.
- Get a walker with four wheels or more for better stability and easier turning.
- Large wheels, swivel casters and hand brakes provide the most stability.
- Walkers with built-in seats and baskets can be especially helpful.
- Avoid four-post walkers, or standard walkers; they can cause a loss of balance.
- Schedule an appointment with your occupational or physical therapist to find out which chair best meets your needs.
- Have a lightweight wheelchair, or a lightweight travel model to lift in and out of the car.
Use adaptive utensils, including those with built-up handles, weights, and swivels. You might want to keep a separate set that you bring to restaurants, to make dining out easier. Swivel utensils (usually spoons) help avoid spills when you scoop up your food. A newer technology is the Liftware device, which has a stabilizing handle to counteract tremor, steadying the hand. It is available with spoon and fork attachments. While it is a more expensive option, it can make it easier to scoop up food and bring it to the mouth.
FREEZING & FALLS
Nearly 40 percent of people with Parkinson’s fall each year. Falls in PD occur mostly when turning or changing directions and are often related to a freezing episode. Freezing creates a danger of falling because the beginning and end of a freezing episode are unpredictable.
The unpredictability of freezing, along with efforts by well-meaning companions to force the person with PD to move, may cause loss of balance and falls.
Tricks to help you get over a freezing episode
- Shift your body weight from one leg to another.
- Listen to rhythmic music, and step with the beat.
- Step over an imaginary line in front of you.
- Use a mobile laser device that creates a line for you to step over.
The incidence and severity of PD symptoms vary from day to day, and even from one time of day to another. It takes skill and patience to know when to assist with a task and when to simply allow the person more time to do the task independently. Caregivers must closely observe the person with Parkinson’s over time to detect and respond helpfully to subtle changes in motor function (how we move) and mood (how we think and feel).
The person you care for might not be aware of his or her changing abilities. Understanding of health risks (such as falling) may not have “caught up” to his or her actual level of risk and impairment. Friends and family members who have infrequent contact with the person with Parkinson’s often underestimate the severity of symptoms as well as your level of caregiver burden. Providing physical care to someone with advanced PD, such as re-positioning or helping with bathing, can be exhausting and even cause physical injury to the caregiver.
Help is available! Family caregivers need some alone time to be effective in helping keep a loved one safe, and maintain their own quality of life. Sometimes just a few hours a day or even a few hours a week of help from an experienced, compassionate caregiver from Visiting Angels can make a huge difference in terms of both caregiver and care recipient happiness and safety.
Visiting Angels offers assistance with personal care, meal preparation, light housekeeping, errands, transportation and shopping, at affordable rates from a couple of hours to 24/7 care.Call 329-9475 or visit visitingangels.com/sussexde