Living with Parkinson’s Disease

Parkinson’s Disease is a chronic, neurogenerative disease that mainly affects movement. In addition to medications and surgery, many therapies can help you live a quality life, maintain independence and manage the symptoms and changes that can occur with Parkinson’s.

Where to find help

When searching for help, seek out the services of an occupational (OT), physical (PT), and speech therapist (ST). An OT will help you make environmental and task modifications so you can continue engaging in desired activities. A PT will work on motor function and balance to help you become safer while getting around your home and community. The ST will provide treatment for communication impairments, dysphagia, speech generation, language comprehension, and swallowing difficulties.

These providers will all use your strengths to minimize the effect a disease like Parkinson’s has on your life. If you want to begin one or more of these therapies, you can request a referral from your neurologist or movement disorder specialist. Ask them if they can recommend a therapist who has specific knowledge of Parkinson’s Disease.

You can also contact your state associations, local rehabilitation facilities, or home care agencies to find a therapist. More information can be found on the American Occupational Therapy Association’s website, the American Physical Therapy Association’s website, and the American Speech-Language-Hearing Association’s website.

Environmental adaptations

Adaptations to the home of the person with PD can range from small modifications to major building changes that require construction. The type of modifications a person needs will depend on the stage of their condition. Some of the most common modifications include adding rails to doorways or stairs, removing or leveling threshold strips between rooms, and creating half steps where large steps become challenging. Other major changes for those who use a wheelchair might include widening doorways and installing a stair lift and entry ramps.

The bathroom can present many safety issues. A major change in this room might be to replace a bathtub with a walk-in shower. A simpler remedy might be to purchase a shower chair or tub bench along with a handheld shower hose and handrails to use in the tub. A non-skid bath mat in the tub or shower can also help prevent accidental slips.

For toilet safety, a commode frame, raised toilet seat, or handrails/grab bars may be installed. Individuals should not use a towel rack, toilet paper holder, or sink as a source of stability if they feel physically unsteady. Faucets can be adapted to make them turn on easier. Someone having difficulty in the bedroom may benefit from bed raisers and a bed rail or a handle to help the person roll over and get out of bed. Motion-activated lights are also beneficial.

General environmental adaptations include replacing floor rugs with more stable, affixed carpeting that does not pose a fall risk. You can also replace these rugs with wood, linoleum, or tile flooring, which is safer and easier to move across, especially with a walking aid or a wheelchair. If loose rugs remain due to personal preference, it’s recommended to tack them down.

Keep pathways open throughout and between rooms to allow ease of using canes, walkers, and wheelchairs. You may need to move furniture to create pathways. Standing lamps or tables should be put in areas where they cannot easily topple over.

Choose chairs with stable bases that do not have wheels or swiveling capabilities, since these can cause falls due to loss of balance. Chairs should have firm cushions and sturdy armrests to make getting up easier. Put risers on furniture or consider an electric lift chair to make rising from chairs easier.

Exercise

People with Parkinson’s typically tend to perform smaller movements, including shuffling steps. When walking, it’s advised to practice overexaggerated physical movements, like arm swings and high-knee steps. This helps re-educate the muscles and slows the progression of hypokinesia, which occurs when movements are not as wide-ranging as they should be.

According to the Parkinson’s Society Canada, it is recommended that Parkinson’s patients participate in aerobic activities such as seated or standing exercises using a treadmill, stationary bike, or rowing machine. This can also include walking, swimming, and dancing. Other good forms of activity include tai chi, golf (both for balance), yoga (for flexibility), pilates (for strengthening, endurance, balance, and coordination), gardening, and more. For building strength, you can use weights or TheraBands. Consistency is important, so aim to gradually lengthen your activity or exercise programs. Count the minutes and try to get as close as possible to the 30-60 minute range each day. You may want to try this home routine when going for a walk:

• Walk 20 steps as you normally would.
• Take 20 long steps.
• Take 20 normal steps.
• Swing your arms for 20 steps.
• Repeat this the entire time you walk.

Try to incorporate exercise into your daily routine as much as possible. Use the stairs and avoid the elevator. Lift cans of soup or water bottles to strengthen your arms while moving in different directions with your shoulders, elbows, and wrists. When watching television, do leg exercises. No matter what you do, make sure you are safe. You can find exercise videos on YouTube or contact a physical therapist for an exercise and balance program. These therapists can also help you choose an appropriate walking aide if you need one.

Communication techniques

Here is a home program that some speech therapists recommend to help you speak more clearly:

Deep breathing

Deep breathing will help you project your voice. Sit or stand up straight and take a deep breath through your nose while expanding your ribs and abdomen. When you feel you have inhaled as much as possible, exhale slowly through your mouth. Take 10 deep breaths before progressing to the next exercise.

Pitch glides

Pitch glides will help you maintain your pronunciation. Take a deep breath in then push out from your diaphragm while making an “ah” sound.

Your diaphragm is below the lungs and is the major muscle involved in respiration. Try holding this for 15 seconds. Do this again with the “oo” and “ee” sounds. Practice changing your pitch and alternating between the two sounds every 30 seconds.

Volume control

Practice projecting your voice while reciting the days of the week, months of the year, the alphabet, and so on. Do this while speaking as loudly as possible.

Sirening

This exercise is good for pitch control. Take a deep breath in and exhale as you imitate the sound of a police siren. Repeat the “ng” sound (as it appears in the word ‘sing’) and continue the sound while increasing and decreasing your volume and pitch.

Laryngeal push-ups

There are two types of this exercise: adductory push-ups and abductory push-ups. These are for strengthening your larynx (or voice box) to help with volume and pitch control. For an adductory laryngeal push-up, take a deep breath then exhale saying the “uh” sound as quickly, loudly, and sharply as you can. Try to lengthen your exhale for 6-7 seconds while repeating the sound. Keep the repetitions distinct. For abductor laryngeal push-ups, take a deep breath and exhale while saying “huh” as quickly as you can for 6-7 seconds with distinct sounds in between.

Try to incorporate speech exercises into your daily routine as much as possible. For example, read road signs out loud as you ride or drive. Exaggerate your mouth movements or sing your favorite song regularly.

Seek the services of a speech therapist for a more individualized exercise program. People with the advanced stages of PD may want help choosing a voice amplifier or picture/alphabet board. Therapists will also address any swallowing difficulties you may have.

Assistive devices

There are many assistive aids available to help complete your self-care and home management activities. Before using any assistive aid, be sure to sit in a supportive chair at the table. Look for utensils that have larger, weighted grips since these are easier for someone with tremors to hold. Good Grips and KEatlery brands offer specialized eating utensils. A rocker knife may make it easier to cut food than a standard knife since it utilizes a rocking versus slicing motion. Scoop plates keep food on your plate while lidded cups keep liquid in your cup. Consider using straws, which are typically easier to sip out of.

There are many aids to help you get dressed. Use a large-handled, weighted button hook that helps you grasp buttons and pull them through the hole of a shirt. You can also pre-button a shirt and put it on over your head. Consider magnetic buttons or adaptive clothing that has buttons on the outside that stick to magnets on the inside. Zipper pulls attach a ring to the tiny handle on a zipper to make them easier to grasp while pulling up and down. You can use elastic laces that turn tie shoes into slip-on's.

Consider one of many pen and pencil grips that can be put on your current pen if you need a firmer grip. These grips come in different shapes and sizes. You can use pens with a weighted or built-up grip, which requires less effort to hold the pen and can reduce tremors. You can add the desired weight to some pens depending on your needs. Additionally, the Steady Write pen permanently attaches to a base that stabilizes the hand at an angle to smooth out shaky or poor handwriting. The grip with fingers is held between your knuckles and should be grasped like an ordinary pen.

Using a smartphone may be challenging for someone with Parkinson’s, but there are ways around that. For example, your smartphone can be set up so that it responds to your voice commands. You can take advantage of word prediction software or use speech-to-text on many smartphones. You can set up your cell phone so it will ignore multiple button touches or react only to the first or last place that is touched. You may have to try different settings to see if one or a combination helps you better use your cell phone.

Seek the services of an occupational therapist for a home safety assessment, additional assistive devices, and techniques to minimize the impact of PD symptoms on your daily activities.