Living with Symptoms

Living with a PS or ET movement disorder can be difficult, frustrating, and, at times, scary. But certain tips and techniques can make daily life a little easier. In this section, we share strategies for living with symptoms of a movement disorder.

Learn more about strategies for managing:

There are also assistive devices that can help with managing your symptoms.
(NOTE: Symptoms will be listed without regard to PS or ET)

Tremor

What it is: Tremor is the symptom most associated with parkinsonian syndromes (PS) and essential tremor (ET). Many people with PS experience tremor at rest, which means that their arm or leg may shake when it is lying on a surface like a bed or armrest. The shaking is usually slow and rhythmic and typically starts on one side of the body, eventually spreading to the other side.

Tremors can make almost any physical activity more difficult. Certain medicines may help to reduce tremors, but stress and anxiety, as well as frustration from not being able to control movement, can actually make them worse.

How to combat it: Tips for managing a tremor:

  • Use one hand to steady the other for any fine motor activities, such as putting on makeup or buttoning a shirt
  • When doing things like writing, eating, or typing, anchor the elbow of your working hand on the table
  • Wear a soft neck collar for driving
  • Use tools and equipment specially designed for people with movement disorders
  • Sit down to do activities such as brushing your teeth or using an electric shaver
  • Wear shoes with Velcro closures or elastic shoelaces
  • Install a hands-free hair-dryer

Meditation, deep breathing, and relaxation training are also useful to help develop the patience required to do daily tasks in a different way.

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Rigidity (stiffness)

What it is: The muscle tone of someone with PS may be tight and stiff either at rest or when in motion. If you experience rigidity, you may feel stuck and stiff and also appear stiff to other people when you try to move.

Rigidity can affect your ability to sit down, stand up, bathe, and get in and out of bed. One of the best ways to combat stiffness is to move as much as you can.

How to combat it: Here are some tips for dealing with stiffness. Every hour or so:

  • Gently stretch your limbs; hold each stretch for 30 seconds
  • Lean your head from side to side
  • Lift your arms
  • Twist your torso
  • While sitting in a chair, lift your knees and flex your feet and ankles

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Bradykinesia (slow movement)

What it is: Bradykinesia means "slow movement" in Greek. If you are troubled by this symptom, everything you do will be slower. It may take you a lot of time to start and complete a movement such as getting out of bed or lifting a fork to your mouth. In addition, the muscles of your face may appear to move slowly as you change expressions. Your eyes may also blink less than they used to.

How to combat it: With bradykinesia, everyday tasks such as washing, dressing, and eating may require more time. Be sure to schedule this extra time into your day, so that you can get things done and minimize stress. You can also:

  • Walk or move next to someone who is moving more quickly than you
  • Play music with a quick beat while performing the task
  • Pace yourself: do part of the task, take a rest, then continue

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Freezing

What it is: Freezing means that you literally stop in space in the midst of whatever you are doing. Your feet may appear to be glued to one spot. This is particularly common at doorways, curbs, and in front of elevators.

How to combat it: When you want to move but can't, you may feel very frustrated. Stay calm: forcing yourself to move could lead to a loss of balance. Try these techniques to help get moving again:

  • Start yourself up by swaying in place, slowly shifting weight from one foot to the other
  • Take an intentional, large step
  • Step over an imaginary line
    • You can also ask someone to put their foot in front of yours so that you can step over it
    • Try placing an item on the floor, such as a coin, and step over it; a laser pointer could be handy for this
  • If doorways and elevators are a problem, try to look past the doorway, focusing on the destination and not the entrance

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Posture and balance

What it is: It can be difficult for people with PS to stand up straight and maintain an upright posture. The trunk of the body is typically pitched forward. Stumbling or tripping may be common, and it can be difficult to correct balance quickly enough to prevent a fall.

How to lower your risk of falling: Postural instability increases your risk for falling. To lower your risk, try the following:

  • Stand with your feet about 10 inches apart (or as wide as your shoulders); this provides more support and reduces the risk of falling
  • Stride forward with big steps, placing the heel and then the toe down
  • Practice walking to music
    • Keeping a beat can help your steps become regular; it can also be helpful to move to the sound of a metronome, although music is more enjoyable to listen to and may be more motivating
    • Try using an iPod or humming to yourself while you walk
  • Practice marching, picking up your knees with each step

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Facial mask

What it is: Bradykinesia can affect the muscles of the face, just as it does all the other muscles in the body. The typical expression described as a "facial mask" occurs because the muscles aren't moving freely.

How to combat it:

  • Practice in front of a mirror raising your eyebrows, smiling, and frowning
  • Make a "lion face" and roar: this helps to open the mouth wide
  • Watch a funny movie or television show and let yourself laugh (laughter is also an effective stress reducer)

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Sleep problems

What it is: More than 75% of people with parkinsonian syndromes have sleep-related problems. The normal sleep cycle may be disturbed with PS, and it is common to be able to fall asleep but then to wake frequently throughout the night. Other people with this symptom have trouble staying awake during the day and may take many catnaps. Another typical sleep disorder is talking, kicking, or jerking while asleep.

How to combat it: Here are some tips for getting a good night's sleep:

  • Wake up and go to sleep at the same time each day
  • Don't nap during the day—it may make falling asleep at night more difficult
  • Exercise early in the day; this will help to keep you mobile, but it won't increase your energy level
  • Avoid caffeine and alcohol for at least 6 hours before bed
  • Try not to drink too much before going to sleep and remember to use the bathroom before going to bed
  • Don't watch TV or use the computer in your bedroom—the bedroom should only be used for sleep

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Changes in voice and speech

What it is:
A soft voice is characteristic of PS, as is not getting enough variation in volume and emotion. Speaking quickly and crowding words together is typical, as is speaking in a monotone. You may find that your voice often gets softer and your speech is sometimes slurred. This can be due to the stiffening of muscles in the face.

How to combat it:
Here are some tips for vocal symptoms, so you can keep your voice strong and your speech more varied:

  • Take a breath before speaking
  • Use shorter sentences
  • Try speaking louder than you think is necessary
    • Rather than making your voice come from your throat, practice projecting from your belly, as if you were talking to someone across the room
  • Try practicing saying sentences as though you were singing a scale from a high pitch to a low one

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Assistive devices

Occupational therapists suggest using the following devices to help make the tasks of everyday life easier:

  • Hiking sticks, a cane, or a walker with wheels
  • Commode or raised toilet seat
  • Bed rail or handle
  • Additional cushions and pillows for the bed and chairs
  • Shower grab bars and bathing seats
  • Reachers with claw-like extensions
  • Electric shavers and toothbrushes
  • Weighted kitchen utensils
  • Adaptive plates, cups, and eating utensils
  • Velcro shoes, and pants and skirts with elastic waistbands

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