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Parkinson’s Disease: Comprehending the Challenges and the Choices
According to the National Parkinson Foundation, after Alzheimer’s disease, Parkinson’s is the most common neurodegenerative disease.
The Parkinson’s Disease Foundation reports that as many as one million Americans suffer from Parkinson's, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig's disease.
Approximately 40,000 Americans are diagnosed with Parkinson's disease each year. This number does not reflect the thousands of cases that go undetected.The chances of being diagnosed with Parkinson’s increase with age, but an estimated 15 percent of patients are diagnosed before the age of 50.
What is Parkinson’s? • Parkinson's disease belongs to a group of conditions called motor system disorders. These disorders are the result of a loss of dopamine-producing brain cells. • Parkinson’s usually impacts people over the age of 50. Early symptoms of Parkinson’s are subtle and occur gradually (although for some the symptom progression is faster).
What is Parkinson’s? • As our bodies and brains age, it is normal for all of us to slow down; however, the four major symptoms of Parkinson’s are not a normal part of aging: • Rest tremor of a limb (shaking with the limb at rest) • Slowness of movement (bradykinesia) • Rigidity (stiffness, increased resistance to passive movement) of the limbs or trunk • Poor balance (postural instability)
How is Parkinson’s diagnosed? • Diagnosing Parkinson’s involves a variety of tests, some of which rule out several other conditions. • There are currently no blood or laboratory tests proven to help in diagnosing Parkinson’s. • Therefore, diagnosis is usually based on medical history and a neurological examination. • The disease can be difficult to diagnose accurately. • Doctors sometimes request brain scans or laboratory tests in order to rule out other diseases.
How is Parkinson’s diagnosed? • Diagnosing Parkinson’s involves a variety of tests, some of which rule out several other conditions. • When at least two of the four major symptoms are present, and especially if they are more evident on one side of the body than the other, a Parkinson’s diagnosis is usually made, unless there are atypical features suggesting an alternative diagnosis.
The first signs of Parkinson’s might be… • Mild tremors – this is the most recognized symptom that usually causes people to seek medical help • Difficulty getting out of a chair • Speaking too softly • Handwriting is slow and looks cramped or small
The first signs of Parkinson’s might be… • Losing track of a word or thought • Feeling tired, irritable or depressed for no apparent reason • The very early stages of Parkinson’s may last for an extended period of time before more classic and obvious symptoms begin to appear, such as constant trembling
As a caregiver, you might notice early on that your loved one… • Lacks facial expression and animation (known as "masked face") • Does not move his or her arms or legs normally • Seems stiff, unsteady or unusually slow
A number of other symptoms may accompany Parkinson’s… • Some are minor; others are not. Many can be treated with medication or physical therapy. No one can predict which symptoms will impact an individual patient, and the intensity of the symptoms varies from person to person and includes: • Difficulty with swallowing and chewing • Speech changes
A number of other symptoms may accompany Parkinson’s… • Urinary problems or constipation • Skin problems • Sleep problems • Dementia or other cognitive problems • Sudden drop in blood pressure when the person stands up from a lying-down position • Muscle cramps and sustained muscle contractions that cause forced or twisted positions • Pain • Fatigue and loss of energy • Sexual dysfunction
Distinct Parkinson’s Symptoms • As Parkinson’s symptoms become more pronounced, walking, talking and completing small tasks can become more difficult. • The shakes and tremors associated with Parkinson’s may also interfere with daily activities. • Utensils pose a particular challenge. • Holding objects to read also becomes increasingly difficult.
Distinct Parkinson’s Symptoms • Although symptoms may begin on one side of the body… • As Parkinson’s progresses, the disease eventually affects both sides of the body. • Even after the disease involves both sides of the body, the symptoms are often less severe on one side than on the other.
Seek medical attention if a change in a loved one’s behavior is noticed.
Is there treatment for Parkinson’s? • At present, there is no cure for Parkinson’s, but a variety of medications can provide dramatic relief from the symptoms. • In some cases, surgery may be appropriate if the disease doesn't respond to medication.
Is there treatment for Parkinson’s? • Obtaining assistance from a home care agency can provide caregiver respite or allow a Parkinson’s patient to remain at home if a family member is not available for care.
People who receive treatment often experience improvement in their overall medical condition and realize a better quality of life.
Patient Challenges • In addition to adapting to their body’s new behaviors, patients may also have a difficult time adjusting to the new psychological challenges they are presented with: • Persistent high levels of anxiety • Intrusive thoughts
Patient Challenges • Body self-absorption • Hypersensitivity • Social withdrawal • Inability to tolerate frustration • Anger • Depression Contributed by Mariann Di Minno, RN, MA, and Michael J. Aminoff, MD, DSc, of the Parkinson’s Disease Clinic and Research Center at the University of California, San Francisco on Parkinson’s progression and presented by The National Parkinson Foundation.
Understanding the Five Stages of Parkinson’s (according to WebMD) • Stage 1: During this initial phase of the disease, a patient usually experiences mild symptoms. These symptoms may inconvenience the day-to-day tasks the patient would otherwise complete with ease. Typically these symptoms include the presence of tremors or shaking in one of the limbs. • At this stage, friends and family can usually already detect changes in the Parkinson's patient including poor posture, loss of balance, and abnormal facial expressions.
Understanding the Five Stages of Parkinson’s (according to WebMD) • Stage 2: In the second stage of Parkinson's disease, the patient’s symptoms are bilateral, affecting both limbs and both sides of the body. The patient usually encounters problems walking or maintaining balance. The inability to complete normal physical tasks becomes more apparent.
Understanding the Five Stages of Parkinson’s (according to WebMD) • Stage 3: Stage 3 symptoms of Parkinson's disease can be rather severe and include the inability to walk straight or to stand. There is a noticeable slowing of physical movements in Stage 3.
Understanding the Five Stages of Parkinson’s (according to WebMD) • Stage 4: This stage of the disease is accompanied by severe symptoms of Parkinson’s. Walking may still occur, but it is often limited, and rigidity and bradykinesia are often visible. During this stage, most patients are unable to complete day-to-day tasks, and usually cannot live on their own. The tremors and/or shakiness that take over during the earlier stages, however, may lessen or become non-existent for unknown reasons during this time.
Understanding the Five Stages of Parkinson’s (according to WebMD) • Stage 5: The last or final stage of Parkinson’s disease usually takes over the patient’s physical movements. The patient is usually unable to take care of him or herself and may not be able to stand or walk during this stage. A patient at Stage 5 usually requires constant one-on-one nursing care.
Making Life Easier for Those with Parkinson’s. According to Parkinson’s Hope, these simple home improvements can create a more “Parkinson’s friendly” home:
Simple “Parkinson’s Friendly” Improvements • In the bedroom, avoid space heaters and electric blankets as they are potential fire hazards and include: • a firm chair • a footstool • a bedrail • a nightlight
Simple “Parkinson’s Friendly” Improvements • In the bathroom, utilize: • a shower chair • rubber mat(s) • handrails • a nightlight
Simple “Parkinson’s Friendly” Improvements • In the kitchen, clean spills immediately and employ: • a rubber mat • accessible counter space for use while seated • an electric jar opener • a food processor – for chopping, since tremors can make using a knife dangerous • self-closing cabinets
Simple “Parkinson’s Friendly” Improvements • In the office, avoid extension cords and make use of: • a firm chair • a large button phone
Simple “Parkinson’s Friendly” Improvements • In the garage, minimize clutter and incorporate: • a cordless phone in case a fall occurs and help is needed • handrails
Simple “Parkinson’s Friendly” Improvements • Outside, repair pavement cracks, pick up tools/hoses, install extra lighting and consider: • handrails • a ramp
Advice • First-hand advice from a daughter of a Parkinson’s patient, according to My Parkinson’s Patient: • Hand rails—“We put banisters in key locations throughout the house. They were very tasteful and helped to steady Dad. Once he even pulled himself up from a fall using one of the hand rails.”
Advice • Walkers, Wheelchairs, and Canes—“They make life a little less of a struggle.” • Shirts—“When it became difficult to dress Dad, and especially when he became bedridden, we cut his shirts up the back, from the bottom to about 3 to 6 inches below the neckline. We slipped the shirts easily over his head, and this gave a dressed look for when family and friends visited. Dad preferred this to hospital gowns.”
Caregiver Tips • Parkinsonshope.com provides the following tips for caregivers: • Assist with daily activities and therapies by encouraging the patient to stay active with simple exercises, like walking or gardening. • If balance is a problem, ask the patient’s doctor about seated exercises. • Check with the patient’s doctor to find out if other group activities or exercise programs, such as yoga or massage, may be beneficial for the patient.
Caregiver Tips • If the patient is involved in physical therapy, speech therapy, or other exercise programs, try to assist the patient with his or her exercises. • Create a safe home for your Parkinson’s patient. • Help with the patient's treatment program. • Support the patient in eating a healthy diet by encouraging the patient to enjoy a balanced diet rich in whole grains, fruits, vegetables, and calcium. • As a caregiver, learn basic first-aid techniques.
Words of Wisdom • Words of Wisdom from the Michael J. Fox Foundation for Parkinson’s Research on Caregiving: • Every close relationship has an element of caregiving. • You should not need special medical training to take care of your loved one except during advanced stages of his or her disease.
Words of Wisdom • Early on, loved ones will need understanding and emotional support. • Along the way, you will be helping with the tasks of daily life that may become difficult or impossible for your loved one. • One exception: If the Parkinson’s patient has trouble swallowing food, it may be useful or even life-saving to learn how to use the Heimlich maneuver to dislodge food stuck in the throat.
Finding Support • The National Parkinson Foundation sponsors support groups throughout the United States for people and families living with Parkinson’s disease. Contact your nearest NPF Center of Excellence for a list of support groups in your area. • Call ElderCare at Home for more information on how we can assist a Parkinson’s patient to live comfortably at home.
Finding Support • Take care of yourself. Your health is important to you and to the patient! Get enough rest, eat a healthy diet, and engage in regular exercise. • Try talking about how you’re feeling with a close friend, family member, or counselor. Observing a patient go through the stages of Parkinson’s disease can be stressful.
You have options. • Many people with loved ones suffering from Parkinson’s are unaware of the options available to them—like in-home care. People have choices when it comes to Parkinson’s care. Loved ones can remain safe and comfortable—at home. • Call ElderCare at Home for more information. • West Palm Beach . . . . . . . . . 561.471.3122Delray Beach/Boca Raton. . . 561.367.9676Toll-Free . . . . . . . . . . . . . . . . 800.209.4342 • www.eldercareresourcecenter.com
Resources: • My Parkinson’s Info • National Institute of Neurological Disorders and Stroke • National Parkinson Foundation • Parkinson’s Disease Foundation • Parkinson’s Hope, parkinsonshope.com • WebMD