parkinson’s disease: comprehending the challenges and the choices

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Parkinson’s Disease: Comprehending the Challenges and the Choices

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Page 1: Parkinson’s Disease: Comprehending the Challenges and the Choices

Parkinson’s Disease:

Parkinson’s Disease:

Comprehending the Challenges and the Choices

Comprehending the Challenges and the Choices

Page 2: 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.

Page 3: Parkinson’s Disease: Comprehending the Challenges and the Choices

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.

Page 4: Parkinson’s Disease: Comprehending the Challenges and the Choices

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.

Page 5: Parkinson’s Disease: Comprehending the Challenges and the Choices

What is Parkinson’s?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).

Page 6: Parkinson’s Disease: Comprehending the Challenges and the Choices

What is Parkinson’s?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)

Page 7: Parkinson’s Disease: Comprehending the Challenges and the Choices

How is Parkinson’s diagnosed?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.

Page 8: Parkinson’s Disease: Comprehending the Challenges and the Choices

How is Parkinson’s diagnosed?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.

Page 9: Parkinson’s Disease: Comprehending the Challenges and the Choices

The first signs of Parkinson’s might be…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

Page 10: Parkinson’s Disease: Comprehending the Challenges and the Choices

The first signs of Parkinson’s might be…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

Page 11: Parkinson’s Disease: Comprehending the Challenges and the Choices

As a caregiver, you might notice early on that your loved one…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

Page 12: Parkinson’s Disease: Comprehending the Challenges and the Choices

A number of other symptoms may accompany Parkinson’s…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

Page 13: Parkinson’s Disease: Comprehending the Challenges and the Choices

A number of other symptoms may accompany Parkinson’s…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

Page 14: Parkinson’s Disease: Comprehending the Challenges and the Choices

Distinct Parkinson’s SymptomsDistinct 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.

Page 15: Parkinson’s Disease: Comprehending the Challenges and the Choices

Distinct Parkinson’s SymptomsDistinct 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.

Page 16: Parkinson’s Disease: Comprehending the Challenges and the Choices

Seek medical attention if a change in a loved one’s behavior is noticed.

Page 17: Parkinson’s Disease: Comprehending the Challenges and the Choices

Is there treatment for Parkinson’s?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.

Page 18: Parkinson’s Disease: Comprehending the Challenges and the Choices

Is there treatment for Parkinson’s?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.

Page 19: Parkinson’s Disease: Comprehending the Challenges and the Choices

People who receive treatment often experience improvement in their overall medical condition and realize a better quality of life.

Page 20: Parkinson’s Disease: Comprehending the Challenges and the Choices

Patient ChallengesPatient 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

Page 21: Parkinson’s Disease: Comprehending the Challenges and the Choices

Patient ChallengesPatient 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.

Page 22: Parkinson’s Disease: Comprehending the Challenges and the Choices

Understanding the Five Stages of Parkinson’s (according to WebMD)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.

Page 23: Parkinson’s Disease: Comprehending the Challenges and the Choices

Understanding the Five Stages of Parkinson’s (according to WebMD)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.

Page 24: Parkinson’s Disease: Comprehending the Challenges and the Choices

Understanding the Five Stages of Parkinson’s (according to WebMD)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.

Page 25: Parkinson’s Disease: Comprehending the Challenges and the Choices

Understanding the Five Stages of Parkinson’s (according to WebMD)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.

Page 26: Parkinson’s Disease: Comprehending the Challenges and the Choices

Understanding the Five Stages of Parkinson’s (according to WebMD)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.

Page 27: Parkinson’s Disease: Comprehending the Challenges and the Choices

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:

Page 28: Parkinson’s Disease: Comprehending the Challenges and the Choices

Simple “Parkinson’s Friendly” ImprovementsSimple “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

Page 29: Parkinson’s Disease: Comprehending the Challenges and the Choices

Simple “Parkinson’s Friendly” ImprovementsSimple “Parkinson’s Friendly” Improvements

● In the bathroom, utilize:► a shower chair► rubber mat(s)► handrails► a nightlight

Page 30: Parkinson’s Disease: Comprehending the Challenges and the Choices

Simple “Parkinson’s Friendly” ImprovementsSimple “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

Page 31: Parkinson’s Disease: Comprehending the Challenges and the Choices

Simple “Parkinson’s Friendly” ImprovementsSimple “Parkinson’s Friendly” Improvements

● In the office, avoid extension cords and make use of: ► a firm chair► a large button phone

Page 32: Parkinson’s Disease: Comprehending the Challenges and the Choices

Simple “Parkinson’s Friendly” ImprovementsSimple “Parkinson’s Friendly” Improvements

● In the garage, minimize clutter and incorporate:► a cordless phone in case a

fall occurs and help is needed

► handrails

Page 33: Parkinson’s Disease: Comprehending the Challenges and the Choices

Simple “Parkinson’s Friendly” ImprovementsSimple “Parkinson’s Friendly” Improvements

● Outside, repair pavement cracks, pick up tools/hoses, install extra lighting and consider:► handrails► a ramp

Page 34: Parkinson’s Disease: Comprehending the Challenges and the Choices

AdviceAdvice

● 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.”

Page 35: Parkinson’s Disease: Comprehending the Challenges and the Choices

AdviceAdvice

► 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.”

Page 36: Parkinson’s Disease: Comprehending the Challenges and the Choices

Caregiver TipsCaregiver 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.

Page 37: Parkinson’s Disease: Comprehending the Challenges and the Choices

Caregiver TipsCaregiver 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.

Page 38: Parkinson’s Disease: Comprehending the Challenges and the Choices

Words of WisdomWords 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.

Page 39: Parkinson’s Disease: Comprehending the Challenges and the Choices

Words of WisdomWords 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.

Page 40: Parkinson’s Disease: Comprehending the Challenges and the Choices

Finding SupportFinding 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.

Page 41: Parkinson’s Disease: Comprehending the Challenges and the Choices

Finding SupportFinding 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.

Page 42: Parkinson’s Disease: Comprehending the Challenges and the Choices

You have options.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 . . . . . . . . . 561.471.3122

Delray Beach/Boca Raton. . . 561.367.9676Toll-Free . . . . . . . . . . . . . . . . 800.209.4342

► www.eldercareresourcecenter.com

Page 43: Parkinson’s Disease: Comprehending the Challenges and the Choices

Resources: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