Living and Coping with Parkinson's Disease

Over time, the symptoms of Parkinson’s become more pronounced. A mild tremor becomes more bothersome and more noticeable. Difficulties may develop with cutting food or handling utensils with the affected limb. Eventually, bradykinesia (slowness in movement) becomes a significant problem and also tends to be the most disabling symptom. Slowness may interfere with daily routines, such as getting dressed, shaving or showering, and these activities may go from being “quick 5 minute tasks” to taking an hour or more.
In addition, symptoms may initially be restricted to one limb, but usually they will spread over time to the other limb on the same side. For example, from left arm to left leg, or right arm to right leg. Eventually, the symptoms will gradually spread to cover both sides of the body.

As the disease progressed and the symptoms become worse, it is important for patients to talk with their doctors so that optimal and appropriate treatment can be provided.
At this stage, treatment cannot totally abolish symptoms, but it can reduce the symptoms and enable the patient to manage their symptoms, function independently, and make the appropriate adjustments to the disease.

Patients are aware of the progressive nature of the illness and this can become a source of great anxiety and concern. It is not uncommon for patients to over-monitor themselves and their symptoms, compare themselves to other Parkinson Disease patients whom they may meet (length of diagnosis, level of symptoms, etc.), and avoid situations such as support groups, where they may see patients who are worse off than they are. Concern about the progression of the disease and the ability to continue working and operating independently are often voiced.
In this section, we discuss the following:

 Tremors
 Moving and Walking with Care
 Avoiding Falls
 Dressing
 Speaking
 Coping with Parkinson's

12.1 Tremors
Tremors may be the least disabling symptom of Parkinson’s, but they can often be the most embarrassing for the patient. Patients try and hide the tremors by keeping their affected hand in their pocket, behind their back, or holding onto something. As a result, tremors may be more psychologically distressing than any physical limitation that it imposes. Your doctor will be able to help you manage the tremors.

12.2 Moving and Walking with Care
Parkinson's disturbs your sense of balance and physical coordination, making it difficult to walk normally. While it is important to get regular exercise, it is equally important not to push yourself too hard or further endanger your health by falling.
If you are walking and you notice yourself shuffling or freezing up, there are several things you can do to get moving again:
 Slow down and check your posture - it is best to stand up straight with your back straight and your head directly above your hips and your feet 8 to 10 inches apart.
 Practice taking long steps and exaggerate lifting your legs and swinging your arms.
 If you become stuck in place, an occurrence known as freezing, rock gently from side to side or pretend that you are stepping over an object on the floor.

12.3 Avoiding Falls
In the later stages of Parkinson's, you may fall more easily because the disease is affecting the balance and coordination centers of your brain. This may mean that you can be thrown off balance by just a small push or bump. The following will help:
 Take up exercises that help improve your balance, such as Tai Chi, as they can help improve your balance and strength. Tai Chi originated in China more than 1,000 years ago, and slow, graceful movements to relax and strengthen muscles and joints.
 Remove all area rugs from your home, and secure any lose steps or flooring that may cause you to trip and fall. Ensure floors are uncluttered, electrical cords are tucked away, and that passageways are wide enough to comfortably walk down.
 Install handrails, especially along stairways.
 Install grab bars around your tub and beside the toilet.
 Make sure you can reach the telephone from your bed and carry a cordless phone with you during the day so you don't risk having a fall while rushing to answer the phone.

12.4 Dressing
Dressing can be the most frustrating of all activities for someone with Parkinson's. The loss of fine motor control makes it hard to button and zip clothes, and the other symptoms caused by Parkinson's make it hard to step into a pair of pants or shoes. The following suggestions may help:

 Allow plenty of time so you don't feel rushed.
 Place clothes near to where you are dressing so they are within easy reach.
 Choose clothes that you can slip on easily, such as sweat pants, simple dresses or pants with elastic waistbands.
 Look for clothes and shoes with velcro fasteners, or replace buttons and zips on existing clothes with velcro.

12.5 Speaking
Even in the early stages of Parkinson's disease, your voice may become very soft or hoarse. In later stages, you may experience slurring. To communicate more easily:

 Practice reading out loud at home, focusing on your breathing and on having a strong voice.
 Face the person you're talking to, and deliberately speak a little louder and slower than you think is necessary.
 Speak for yourself - don't let others speak for you.
 Consulting a speech-language pathologist, who is trained to treat people with Parkinson's disease, may also help a lot.

12.6 Coping with Parkinson's
Living with any chronic illness can be difficult, and it's normal to feel angry, depressed and discouraged at times. In addition to the symptoms caused by Parkinson's, the disease also presents an additional range of problems because it can cause chemical changes in your brain that cause you to feel anxious or depressed.
Also, the medications and drugs used to treat Parkinson's can also cause depression and other mental changes, along with a range of nasty side-effects.
Furthermore, Parkinson's can be profoundly frustrating, particularly in the later stages of the disease when simple, every-day tasks take longer to accomplish, and walking, talking and even eating become more difficult.

The following suggestions may help you deal with the stress and frustration of living with Parkinson's:

 Research. Learn all you can about your illness. Understand your enemy, and what it is trying to do to you. Your local library, medical books, and the internet can be great sources of information. Find out how the disease progresses, ask about your prognosis for the future, and find out what your treatment options are, along with their side-effects. The more you know, the more pro-active you can be in your own care, and the more control you will have.
 Pace Yourself. Recognize that you cannot be as active as you were in your twenties, and learn to step back from work and delegate activities onto others.
 Be Proactive. Although you may often feel anxious or discouraged, don't let others - including your family and your doctors - make important decisions for you. Take an active role in your treatment.
 Friends and Family. Maintain a strong support system with your friends and family. Strong relationships are crucial in dealing withchronic illnesses. Friends and family are your best allies, and if they understand what you are going through, then they will be more accommodating and sympathetic to your situation, and they will also know what support you will need.
 Join a Support Group. Support groups aren't for everyone, but for many people, they can be a good resource for practical information about Parkinson's disease. You may also find that you develop lasting bonds with people who are going through the same experiences as you. Support groups also exist for the families of people with Parkinson's disease. To learn about support groups in your community, talk to your doctor, a Parkinson's disease social worker or a local public health nurse. Or contact the National Parkinson Foundation.
 Minimize Stress. A diagnosis of Parkinson's Disease does not mean that you have to stop working. Many people with the disease continue to hold either full- or part-time jobs. But you may need to approach work differently. Start by breaking your job into individual tasks. Then consider whether your symptoms will affect your ability to perform each task. Create a schedule that allows you to do the most challenging assignments when you're at your peak. You may be able to change to working part-time or even change jobs to ensure that you can cope with your work. Although you may not feel comfortable talking about your illness, it is always best to be candid with your supervisor. That way, they know what the score is and can work with you to make the adjustments necessary to meet your needs.
 Your Partner. Maintain good communication with your partner, because it is important that they know what the score is and understand what you are going through. Parkinson's may change your life and the lives of your loved ones in a number of ways, so it is best to talk honestly about these changes. You may longer be able to work full time, and this may cause financial issues. As your symptoms worsen, or the side-effects of medication worsen, you will need additional time to perform tasks and additional care. You will also need to let your partner know when you need help and when you don't. Sometimes couples experience sexual problems, such as movement problems, impotence (men), and decreased libido (women). But these problems can often be helped or reduced. Discuss them with your doctor. Most important, try to talk frankly about your feelings and concerns. Repressed feelings can be harmful to your immediate well-being and long-term health, as well as harmful to your relationship with your partner.
 Be honest with your Family. If you have children, don't try to hide the diagnosis from them. They will usually sense when something is wrong in the family, and the anxiety and fear of not knowing is often worse than knowing the truth. In addition, children will want to help out where possible, and feel reassured that you are receiving proper care and treatment. Answering your children's questions honestly can help them cope.

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