How To Talk To Someone With Parkinson’s

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There Are Invisible Symptoms Of Parkinson’s

As anyone with Parkinsons knows, not all symptoms are visible. Tremors are the most widely known symptom, but it is far from the only one.

Too often, acquaintances tend to downplay the severity of a disease when they cant see the full story. But, thats exactly the problem – they cant see the full story. Nor have they earned the right to hear it.

Brene Brown, a leading researcher on shame and vulnerability, reminds us that only our inner circle of those who have confided in us have earned the right to our vulnerabilities. Never forget that. A kinder way to broach the subject might be to say: You look well today, but Im guessing there might be more going on beneath the surface. How are you?

Simplifying Activities Of Daily Living For Parkinsons Patients

Many aspects of daily life that we take for granted become increasingly difficult for someone who is living with Parkinsons. Movement symptoms like weakness, tremor, rigidity, balance problems and bradykinesia become especially pronounced in the middle and later stages of the disease. Medications used to treat PD, such as carbidopa-levodopa, dopamine agonists, MAO B inhibitors and anticholinergics, can also have bothersome side effects like dyskinesia , lightheadedness, drowsiness, hallucinations and confusion that interfere with daily routines. Fortunately, there are assistive devices and adaptations that can help patients maintain their quality of life and make caring for someone with Parkinsons easier for family caregivers.

Exercise And Healthy Eating

Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood and relieving stress.

There are many activities you can do to help keep yourself fit, ranging from more active sports like tennis and cycling, to less strenuous activities such as walking, gardening and yoga.

You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.

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Learn More About How Parkinsons Affects Families & Relationships

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Its jam-packed with up-to-date information about everything Parkinsons, plus an expanded worksheets and resources section to help you put what youve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

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What Emergency Type Devices Should A Person With Parkinsons Disease With Speech And Voice Problems Have At Hand

To preparing for emergencies:

• Use an intercom system or baby monitor to alert others that there is an emergency.
• Use bells or buzzers if you are not able to speak. Use “codes” that signify urgency. For example, a tinkling bell might mean, “I’d like company,” while an air horn might mean there’s an emergency.
• Carry a cell phone that is equipped with pre-programmed numbers. Preprogram all of your telephones so they can automatically dial the necessary emergency number.
• Sign up for a “Life Call” button service if you spend time alone. Pressing a button on a device usually worn on the wrist or around neck signals a service company that alerts loved ones and/or your local emergency service.

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Living With Parkinson Disease

These measures can help you live well with Parkinson disease:

• An exercise routine can help keep muscles flexible and mobile. Exercise also releases natural brain chemicals that can improve emotional well-being.
• High protein meals can benefit your brain chemistry
• Physical, occupational, and speech therapy can help your ability to care for yourself and communicate with others
• If you or your family has questions about Parkinson disease, want information about treatment, or need to find support, you can contact the American Parkinson Disease Association.

What Is Parkinson’s Disease And Why Do I Have It

Ask your doctor to explain Parkinson’s. In short, it’s a disease that causes loss of brain cells that produce dopamine. That’s a brain chemical important for movement. This happens gradually over time. As dopamine levels go down, symptoms increase. Keep asking for details until you understand the disease and what it does.;

Figuring out why you have it, though, is not likely. That’s because what causes Parkinson’s is pretty much a mystery. Doctors do know that it’s more common after age 60.;

Also, if others in your family have Parkinson’s, you might have inherited some genes that put you at risk. But genes alone are not the whole problem. Only about 1 in 4 people with Parkinson’s has a family history of it. Doctors think the cause may be genes along with something in the environment that triggers the disease.

Even though you might not get a firm answer, you should talk about this with your doctor. It’s a question most everyone has. It’s worth discussing.;

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Stay On Top Of Insurance

If you were always the one who handled questions of insurance coverage, great but if not, you may want to familiarize yourself with the terms of your health insurance. Youll need to know details about if and to what extent your plan covers prescriptions, therapy sessions and other unexpected items.

Related Diagnosis: Lewy Body Dementia

Current research is helping to differentiate dementia related conditions in relationship to Parkinsonâs disease. Doctorâs use a 12-month arbitrary rule to aid in diagnosis. When dementia is present before or within 1 year of Parkinsonâs motor symptoms developing, an individual is diagnosed with DLB. Those who have an existing diagnosis of Parkinsonâs for more than a year, and later develop dementia, are diagnosed with PDD.

In the simplest terms, Lewy bodies are abnormal clumps of proteins that develop in nerve cells. Cholinesterase inhibitors, medications originally developed for Alzheimerâs disease, are the standard treatment today for cognitive DLB and PDD symptoms. Early diagnosis is important, as DLB patients may respond differently than Alzheimerâs disease patients to certain drug, behavioral, and dementia care treatments.

This challenging, multi-system disorder involving movement, cognition, behavior, sleep, and autonomic function requires a comprehensive treatment approach to maximize the quality of life for both the care recipient and their caregiver. It is very important to pay attention to symptoms of dementia and to search for an expert clinician who can diagnose the condition accurately.

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Eating With Parkinsons Disease

Specially designed eating utensils for Parkinsons patients feature padded or built-up handles to help facilitate the eating process. Individuals who have difficulty controlling the fine motor skills necessary for eating and drinking may also benefit from weighted utensils and cups. Knives with a curved blade can allow PD patients to cut their own food with a rocking motion instead of the traditional sawing motion that may be more challenging. Serving meals in bowls or on plates with high lips or sides can make it much easier for patients to scoop food onto utensils and encourages self-feeding. Dishware with non-skid rubber bottoms can be helpful as well.

Read:Dysphagia: How to Help a Loved One Eat and Drink Safely

Prescription medications may also cause side effects like dry mouth, so it is very important to always encourage your loved one to sip on liquids during meals and throughout the day. This will help facilitate eating and swallowing and ensure they stay hydrated.

Foster A Good Relationship

Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.

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If I Have Parkinsons Disease What Kind Of Speech And Voice Problems May I Experience

If you have Parkinsons disease, some of the voice and speech difficulties seen include:

• Softened voice. Reduced volume to your voice.
• Speaking in an unchanging pitch .
• Having a hoarse or strained quality to your voice.
• Having a breathiness to your voice. Breathiness in the quality of your voice that is easily heard by your listeners. It takes more effort and energy to speak. You run out of gas as you speak.
• Trouble clearly and easily pronouncing letters and words.
• Tremor in your voice.
• Using short rushes of speech.
• Loss of your facial expression.

If you have Parkinsons disease, you may not be aware of the problems with your spoken communication. Changes in the quality of your voice may be the first sign of speech problems followed by the inability to have fluid speech and clear and distinct speech sounds. Speech problems that are severe enough to reduce your ability to be easily understood usually do not occur until later in the course of Parkinsons disease.

Be Honest With Each Other

A trap some caregiver-patient partners can get into is one person becoming the nurse while the other is demoted to helpless patient. Thats not productive and can end up being harmful if, for example, the caregiver takes on responsibilities that the person with Parkinsons is perfectly capable of doing.

As a caregiver, try to start an open dialogue for tough conversations with your loved one where you come to an agreement about when the loved one truly needs help.

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Single And Living With Pd

Living alone when you have Parkinsons disease can be very difficult and lonely. Searching for someone with whom to share your life with PD can be even more difficult and lonely. If you have a close friend, co-worker or therapist who is willing to do some role-playing with you, it can help you to identify how and when to tell a date or potential mate/partner.

For Family Friends And Carers

Communication difficulties also affect family, friends and carers. Problems can be frustrating to deal with and misunderstandings may arise. The following suggestions may help when communicating with someone who has Parkinsons:

• Be patient and give them plenty of time to collect their thoughts and communicate. Dont walk away while they do this.
• Dont interrupt and finish their sentences for them.
• Talk normally, without shouting or sounding stressed or impatient.
• Make sure you are both in the same room and can see each other.
• Listen carefully and turn off any distractions such as the radio or television.
• If you dont understand something, ask them to repeat it louder and slower. Dont pretend that you have understood if you havent.
• Encourage them to engage in a conversation but without putting them under pressure.
• Reassure them if they have difficulty communicating. A simple squeeze of the hand can be very calming and encouraging.

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What Symptoms Can I Expect

To diagnose Parkinson’s, doctors look for at least two of these four symptoms:;

• A type of shaking, called tremor
• A slowing down of movement, called bradykinesia
• A lack of balance, called postural instability
• A type of limb stiffness, called rigidity

Over time, you may develop all four. You may also have trouble with walking, talking and swallowing. People with Parkinson’s also sometimes develop , skin problems, and . They also may have trouble sleeping.;

Ask what your doctor thinks you should expect, and when. Knowing what to expect will help you put a plan in place for the future.

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How To Be A Good Spouse When They Have Parkinsons

July 28, 2020 by Zach Galati

Being a good caregiver to someone with Parkinsons can be a difficult job. If the person you are giving care for is your spouse then this can be like tiptoeing on eggshells. So, I wanted to share some of the tips and tricks I have learned from being a caregiver to a spouse with Parkinsons over the last few years. These tips have helped our marriage not only avoid breaking down but have helped our marriage flourish.

Making sure they take medications

Something helpful I do for my spouse is to remind him to take his medications. We set up alarms on his smartphone so that he is reminded when to take his medication. We bought weekly pill boxes with 3 compartments per day and set them up a week at a time. This makes it really easy to see if my spouse has taken their medication or needs help remembering. I can also encourage my spouse on days when taking medication can feel like too much of a chore.

Assisting them in getting to the doctors

Depending on where your spouse is at, they may not be able to get themselves to their doctors appointments. I usually drive my spouse to the doctors office or hospital, and he has agreed for me to come into his appointments with him. I usually jot down notes of what is said to make sure we dont forget, and we can talk it over again when we get home. However, arranging someone else to come and give them a ride to the doctors is also a great way to help out your spouse and give them less to worry about.

The Basic Elements Of Exercising With Parkinsons

There are four core elements of exercise that are important for people with PD:

Including all four of these elements in your exercise regimen is ideal .

Aerobic activity or high-intensity exercise may be particularly important for Parkinsons and general health

High-intensity exercise has been formally studied in PD with impressive results. The Study in Parkinson Disease of Exercise Phase 2 enrolled 128 people with early PD, who were not yet on dopaminergic medication into three groups:

• a high-intensity treadmill exercise group, in which people exercised at 80-85% of their maximum heart rate
• a moderate-intensity treadmill exercise group, in which people exercised at 60-65% of their maximum heart rate
• a wait-list control group

After six months, the high-intensity group had essentially no change in their motor scores, whereas the control group had a three-point worsening of their motor scores.

Currently, the SPARX3 trial is enrolling participants and underway. This trial is similar to SPARX2, but with a goal of studying many more participants.

Forced exercise

Cognitive challenges in exercise

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How Should Caregivers Discuss It

Caregivers are often the first people to see non-movement symptoms. If youâve noticed changes, speaking up is the first step to getting someone with Parkinsonâs the help they need.

• Remind them about the Parkinsonâs connection. They may not link their non-movement experience with Parkinsonâs disease. They may write off their depression, sleepiness, or fatigue. Showing them the link between brain changes and these symptoms helps them see it isnât their fault.
• Talk to their doctor. Itâs best to discuss it together. You can let the doctor know on your own. But, because of privacy laws, they may not be able to respond in detail.
• Consider getting written consent. In many cases, doctors canât discuss someoneâs health information without their approval. You may want to get a written consent form that lets you speak freely to the doctor on your own.

Parkinsonâs Foundation: âCognition: A Mind Guide to Parkinsonâs Disease,â âHow to Talk with Your Family About Parkinsonâs,â âNon-Motor Symptoms,â âTelling Family About the Diagnosis.â

Michael Okun, MD, medical director, Parkinsonâs Foundation; executive director, Norman Fixel Institute for Neurological Diseases, University of Florida.

The Michael J. Fox Foundation for Parkinsonâs Research: âNavigating Cognitive Changes in Parkinsonâs Disease.â

Next Step in Care: âHIPAA: Questions and Answers for Family Caregivers.â

What Are The Complications Of Parkinson Disease

Parkinson disease causes physical symptoms at first. Problems with cognitive function, including forgetfulness and trouble with concentration, may arise later. As the disease gets worse with time, many people develop dementia. This can cause profound memory loss and makes it hard to maintain relationships.

Parkinson disease dementia can cause problems with:

• Speaking and communicating with others
• Problem solving
• Forgetfulness
• Paying attention

If you have Parkinson disease and dementia, in time, you likely won’t be able to live by yourself. Dementia affects your ability to care of yourself, even if you can still physically do daily tasks.

Experts don’t understand how or why dementia often occurs with Parkinson disease. Its clear, though, that dementia and problems with cognitive function are linked to changes in the brain that cause problems with movement. As with Parkinson disease, dementia occurs when nerve cells degenerate, leading to chemical changes in the brain. Parkinson disease dementia may be treated with medicines also used to treat Alzheimer’s disease, another type of dementia.

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