Parkinson's Disease Guide

PARKINSON’S DISEASE GUIDE

HELPFUL INFORMATION & RESOURCES TO GUIDE YOU THROUGH A DIAGNOSIS

It is estimated that by the beginning of 2021, there will be 930,000 to one million people living with Parkinson’s disease (PD) in the United States. By 2030, that number is expected to rise to 1.2 million. Around 60,000 people are diagnosed with the disease each year.

As we continue to work towards a cure, it is important to focus on ways to continue to improve quality of life as we live with PD.

What You Need to Know About Parkinson's Disease (PD)

By definition, PD is a progressive nervous system disorder that affects the area of the brain that controls movement. Brain changes caused by the disease can affect a person's gait, facial expressions, posture, and, as it progresses, can begin to interfere with memory and the ability to make sound judgments. Parkinson's is the second most common age-related neurodegenerative disease after Alzheimer's disease. In fact, according to the Alzheimer's Association, PD affects nearly 2% of older adults over the age of 65, accounting for just under one million cases. The symptoms of Parkinson's can look different on each person, depending on when the diagnosis occurs within the progression of the disease.

Causes & Risk Factors

While researchers are still gathering data on PD, we do know that there are several factors that increase the risk of developing the disease.

According to the Mayo Clinic, several factors may play a role in the cause of PD: Genes: There has been evidence of specific genetic mutations directly relating to PD but it is rare to develop them unless PD is present in many family members.

Environmental Triggers: It is possible that some toxins or environmental factors could contribute to getting PD, however, the risk is small. Researchers have also noticed changes in the brains of people with PD and believe they could hold important clues to the cause of PD. It is a current focus in research.

Lewy Bodies: Microscopic markers of PD in brain cells are called Lewy bodies. It is believed they hold an important clue to the cause of PD. Alpha-synuclein: One natural protein found in the Lewy bodies, called Alpha-synuclein, clumps up within the Lewy bodies and cannot be broken down by cells. These may also hold a clue to PD. The Mayo Clinic also mentions the following risk factors for PD: Age: It is rare for young adults to be diagnosed with PD. On average it develops mid to late in life around age 60 or older.

Heredity: While your risk many increase if you have a close relative with the PD, the risks are actually still quite small unless many relatives in your family have PD. Sex: Men tend to develop PD more than women.

Exposure to Toxins: An ongoing exposure to herbicides and pesticides could slightly increase your risk of PD.

Symptoms of Parkinson's Disease

Those with PD can experience both motor and non-motor symptoms. The first signs of Parkinson's are often so subtle that they may go unnoticed. As the disease progresses, symptoms tend to get worse. Here are some of the most common symptoms according to the Mayo Clinic.

• Tremors in the face, legs, arms, and hands: Tremors, which usually appear as shaking in the limbs, hands, or fingers, are very common among Parkinson's patients. Some people might experience hand trembling while resting or rubbing between the forefinger and thumb.

• Rigidity: Muscle stiffness can occur in any part of the body and become painful if it lasts for long periods of time. Many people who experience rigidity have a limited range of motion and trouble walking.

• Slowness: Parkinson's can cause delayed movements and make basic daily tasks hard to complete. Other symptoms include walking with shorter steps or dragging your feet while walking.

• Loss of automatic movements: Unconscious movements such as blinking, smiling, and swallowing becomes more difficult as the disease progresses.

• Changes in speech: Some individuals with PD experience changes in their speech such as hesitation, softness, quickness of speech, or slurring words.

Related Health Conditions

Those who have been diagnosed with PD may experience other health concerns. These issues usually arise after the disease has progressed. These are some of the most common health conditions related to PD according to the Mayo Clinic: DEMENTIA Of those diagnosed with PD, nearly 50 percent to 80 percent may experience dementia symptoms.

Most adults who develop a dementia are diagnosed 10 years after the onset of Parkinson's disease.

Along with the typical symptoms of PD, some people with Parkinson’s related dementia have reported changes in memory, muffled speech, visual hallucinations, depression, daytime drowsiness, and anxiety.

DEPRESSION AND EMOTIONAL CHANGES These are common problems for individuals in any stage of the disease, but can be more prevalent for those who have been newly diagnosed. Other emotional changes such as fear, anxiety, and loss of motivation are common and can be treated with a variety of therapies such as music therapy, art therapy, pet therapy, as well as medication.

SLEEP DISORDERS/DISTURBANCES Those with PD often have trouble falling asleep and staying asleep through the night. Rapid eye movement, which involves acting out your dreams, is also common for those with the disease.

These sleep disorders can cause fatigue, especially later in the day. Doctors and healthcare providers can prescribe medications to assist in managing these disturbances.

BLADDER AND CONSTIPATION Some people with PD report issues with controlling their bladder and having difficulty urinating.

Constipation also accompanies PD due to the slowing of the digestive tract.

CHANGES IN BLOOD PRESSURE People often have a change in blood pressure due to PD which occurs because the body does not react the way it would naturally when you change position, eat, or exercise. Some medications may affect blood pressure so it's not uncommon to feel lightheaded due to a sudden drop in blood pressure.

PAIN Because of the changes in the brain, PD patients often experience pain. This pain can be felt all over the body or concentrated in certain areas.

The 5 Stages of Parkinson’s Disease

The stages of PD may vary from person to person. The stages listed below are a guideline of what one might experience; however, everyone experiences symptoms differently. Other concurring illnesses or environmental factors may impact a person’s progression.

STAGE ONE Mild symptoms tend not to interfere with daily activities. A person may start to show subtle changes in posture, walking, and/or facial expressions.

STAGE TWO While the person may still be capable of living alone, symptoms will begin to progress. They may experience tremors, rigidity, and other movement symptoms on both sides of their body.

STAGE THREE This is considered to be mid-stage. Individuals may experience a movement slowdown and loss of balance, making them a higher risk for falls. The individual should still be able to remain quite independent although they may need assistance with dressing and eating.

STAGE FOUR At this stage, symptoms tend to significantly affect day to day activities. While individuals may be able to stand unaided, they may benefit from assistance with walking, such as a walker. To ensure the individuals remain safe, work with the care team to assess for safety in the home.

STAGE FIVE At this stage, this individual will need 24/7 care. Mobility is compromised and adaptive equipment such as a wheelchair may be needed. Assistance with all personal care will be needed. During this stage, connection, companionship, and comfort are key.

Treatment Options

In the absence of a curative treatment to PD, there are some treatments designed to help manage the symptoms and assist in living life with intention. Traditionally, exercise and therapies are standard treatment options that help with improving flexibility and balance, while reducing rigidity.

Music, arts, and dance can also be beneficial for social engagement and symptom management. Treatments also include medications that can further assist with tremors, stress, and sleep. Because there is a lot we do not understand about Parkinson's disease, there are many clinical trials designed to gather more information. These trials include testing new treatments, such as medications, surgery, or therapies on existing PD patients in hopes of creating a new curative treatment option.

Care Partners – Who Should be on Your Team?

Primary Care Partner: First on your list and most important is finding a trusted person who can accompany you to doctor’s appointments and be an advocate for you. This care partner is an integral part of your care as they may be able to recognize changes in your symptoms that you may have missed and can assist with conveying the latest updates to your care team. This person will provide essential support as you move through the progression of the disease.

Movement Disorder Specialist: This is a neurologist who has been specifically trained to manage PD. The earlier you can start this relationship, the better. This way, you can work as a team to know what you can expect and create the best plan for your future.

Nurse: A nurse can help by keeping an eye on all your overall functions such as the intake of fluids and fiber. They can assist you in maintaining goals of independence by suggesting helpful techniques and safety measures.

Physical Therapist: Working with a physical therapist will ensure you can continue to maintain or increase mobility. Evidence shows that continued physical activity on a daily basis and strengthening can assist with symptom management.

Occupational Therapist: An occupational therapist can assist in creating a safe environment in your home. They will assess overall functioning, offer solutions, and show techniques for successful living.

Speech Therapist: Speech difficulties vary from person to person but a speech therapist can help you maintain as many communication skills as possible. There are evidence-based programs that can assist a person in strengthening their voice and maintaining their capabilities, including swallowing. They can also help with technology and assistive devices in addition to teaching you how to conserve energy.

Social Worker/Geriatric Care Manager: A social worker or geriatric care manager can be invaluable as you navigate this disease and its progression. They are great to turn to when you have questions regarding how to find legal advice, and/or address issues with insurance claims and much more.

Pharmacist: Your pharmacist works with your doctor to make sure medicines are delivered on time and in the correct quantities.

Neuropsychologist: A neuropsychologist specializes in the relationship between your brain and your behavior. They will help establish a baseline for your symptoms so it is easier to understand how the disease is progressing.

Palliative Care: Palliative care is used to provide comfort and symptom management for an individual living with PD. This can be provided at any age and stage of an illness, and can include pet therapy, music therapy, music therapy, art, and so much more.

Sharing the Diagnosis with Others

It’s completely normal to have questions regarding when and how you share your diagnosis with others. However, as the disease progresses, it’s important to have a support system in place including friends and family who are aware of what is happening. You have the ability to choose who you want to tell and how to tell them. Here are a few tips to help you share the news when you are ready.

• Think about who you want to share your diagnosis with first. You might want to choose those you feel closest to or who you spend the most time with.

• Go slowly. Sharing your diagnosis can be emotional. You don’t have to talk about everything in one sitting. This can happen over time.

• Have resources available — it can assist friends and family in learning more about the disease with those that will be supporting you.

• Let people support you, but also be sure to tell them how you want to be supported. If you want to be supported in certain ways, like help with doctor’s appointments, grocery shopping, or cooking meals, it’s important to express this to your friends and family.

Living with Parkinson’s Disease: Wellness

Living with Intention: Make the most of each day. Set goals and discuss with those you are closest to what you want your life to look like, and find ways each day to make that happen.

Socialization: Remaining engaged and social is very beneficial to your overall health. How you socialize and how often may change, but the important thing is to stay connected.

Physical Pain Management: Speak with your health care professional when there is pain and when and if it persists. These professionals can create a plan of care to best assist you and your daily functioning.

Intimacy: Relationships and the ability for intimate connection may change due to PD, as a result of many aspects of this disease. Maintain an open line of communication with your spouse or partner, as well as a medical professional.

Diet/Nutrition: A healthy diet is always beneficial. Speak with your medical provider or a nutritionist to discuss the best course of action for you. Eating lots of fruits, vegetables, and grains will keep added fiber in your diet which will help minimize constipation, dehydration, and other effects from medications.

Exercise: Movement is important for PD. Remember the old adage “move it or lose it”? It is important to do your best to continue with daily activities such as going shopping, doing the laundry, or even vacuuming as it helps delay symptoms and keeps you strong.

Occupational Therapy: Helps to alleviate symptoms or find new ways to accomplish daily tasks. Reach out to an occupational therapist to help you build new skills and cope with the changes that are occurring.

Complementary/Alternative Therapies: Everyone experiences PD differently and what works for one person may not work for another. Many therapies including everything from art, music, acupuncture, and more have helped alleviate PD symptoms.

Mental Health Depression/Anxiety: Major life changes, such as a new diagnosis, can lead to a variety of feelings, including depression and anxiety.

Psychotherapy/Counseling/Mental Health Specialists: Staying connected with a doctor, therapist and your support networks can assist you as you move through these changes.

Improve Quality of Life

Positive lifestyle changes may slow the progression of PD and alleviate symptoms.

Improve your quality of life through:

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SLEEP: Sleep can be impacted as the disease progresses. Consistent sleep is valuable to recharge your batteries, give you energy, and revitalize you.

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EXERCISE FOR ENERGY: Don’t ease up on exercise upon diagnosis. Keep as active as you can for as long as possible. It will help you maintain a sense of balance, keep you flexible, and help ward off depression and anxiety.

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HOME SAFETY: As the disease progresses, your home may need some adjustments to make it safer. Work with professionals such as an Occupational Therapist and Geriatric Care Manager to advise on and install handrails in the bathroom, removed area rugs that could slip, and be sure you have proper lighting.

HEALTHY DIET: Making changes to your diet can have immediate positive effects on your overall health. Eating well helps you feel better both physically and mentally. Eating a high fiber diet will also assist in alleviating constipation and dehydration.

Planning for the Future and Care Planning: Do you need Assisted Living?

Learning how to navigate life as the disease progresses can be difficult. As part of the diagnosis, the biggest challenges can be managing overall health and wellness including managing medication appropriately, getting enough exercise while remaining flexible, and managing stress and anxiety.

While some people living with the disease may wish to remain at home with a caregiver, other options, like assisted living, can provide additional support and peace of mind for the caretaker.

Here are a few ways assisted living communities can help manage the symptoms of Parkinson's disease: Health and Wellness: An interdisciplinary clinical team is provided at most assisted living communities, and can assist in symptom management of PD while minimizing adverse effects.

They can also provide individualized care planning, help with medication administration, provide nutritionally balanced meals, and ensure appropriate hydration.

Socialization: Staying engaged with other people offers important health benefits. Socializing with others creates a sense of belonging, reduces loneliness and depression, and alleviates stress and anxiety and allows you to have fun!

Exercise and Fitness: Exercise can slow down the progression and help enhance motor function.

Assisted living communities offer daily group exercise classes, individual fitness programs, and physical, occupational, and speech therapies to help reduce the loss of motor function and increase flexibility.

Managing Stress and Anxiety: Unmanaged stress and anxiety can actually make PD symptoms, like tremors and rigidity worse. Assisted living communities can help manage stress through holistic services including counseling and psychological services, music therapy, art therapy, pet therapy, aromatherapy and so much more.

Legal, Finances, and Insurance

Ensure that you work with the care team to discuss long term care, legal and financial needs.

Working with an elder care attorney and financial planner can be a great start for this advanced planning, and simplify things as the disease progresses, when addressed earlier in the disease.

Support Groups

There are also support groups that cater specifically to those with PD, and sharing symptoms and solutions can provide much-needed solace. This is a great option for those interested in socializing, and building community while living with PD.

At InspĪr we have curated an environment that supports a philosophy of intentional

living. Our holistic, personalized and integrative approach to health and wellness combines evidence-based complementary modalities that nurture mind, body and spirit with a highly skilled interdisciplinary team of professionals and caregivers who are laser-focused on achieving optimal wellbeing for each resident. Our expert caregivers are available for your family member to assist with personal care, such as dressing, bathing, and grooming.

From lending a hand to more comprehensive support – such as medication oversight – we provide a welcomed level of peace of mind to families.

SEEKING ADDITIONAL HELP — RESOURCES:

In addition to this guide, we encourage you to use other resources to help you through this process.

Many provide support groups, share stories, offer links to the latest news, and provide more specific details on treatment options, clinical trials, services, and more.

www.parkinson.org

www.movementdisorders.org

www.apdaparkinson.org

www.parkinsonsresource.org

www.mayoclinic.org

Robert and John M. Bendheim Parkinson & Movement Disorder Center https://www.columbianeurology.org/ patient-care/movement-disorders

www.michaeljfox.org

www.hopkinsmedicine.org

https://www.mountsinai.org/locations/ parkinson-movement-disorder-center

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