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What To Say To Someone With Parkinson’s Disease

Make Sure You’re Aware Of The Other Early Signs Of Parkinson’s Disease

Keep Moving with APDA: What Does the Science say About Walking & Parkinson’s Disease?

Stooped or hunched posture isn’t the only early sign of Parkinson’s to keep an eye out for. Ahmad says that tremors, slowed movement, rigid muscles, and a reduction or loss of smell can also be early symptoms of the disease. According to the Parkinson’s Foundation, you may also experience small handwriting, trouble sleeping, trouble walking, constipation, a low voice, and dizziness. If you notice any of these signs, make an appointment to talk to your doctor.

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APDAExercise & Parkinson’sWhat types of exercise are best for people with Parkinsons disease?

In last weeks blog, we addressed the reasons why it is vital for people with Parkinsons disease to exercise, including improving particular motor and non-motor symptoms such as impaired balance, gait disorders, depression, and cognition.

Today, we will tackle another important question what types of exercise are most beneficial to help people with Parkinsons disease improve their quality of life? Well also address several specific types of exercise designed for people with PD and some tips on how to get started with an exercise program. 

They Mistake Objects For People Or Animals

The most common symptoms of Parkinsons related psychosis are visual illusions and hallucinations, says Dr. Barrett. These can start out mild, with the person looking at an object but seeing something else. For example, they might mistake a lamp for a human or think the mailbox is a deer. These are early, minor hallucinations that may evolve to be more bothersome or pervasive, says Barrett.

What Causes Parkinson’s Disease

In the very deep parts of the brain, there is a collection of nerve cells that help control movement, known as the basal ganglia . In a person with Parkinson’s disease, these nerve cells are damaged and do not work as well as they should.

These nerve cells make and use a brain chemical called dopamine  to send messages to other parts of the brain to coordinate body movements. When someone has Parkinson’s disease, dopamine levels are low. So, the body doesn’t get the right messages it needs to move normally.

Experts agree that low dopamine levels in the brain cause the symptoms of Parkinson’s disease, but no one really knows why the nerve cells that produce dopamine get damaged and die.

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Well This Column Is Taking A Turn

6 Things You Should Say to Someone With Parkinson

Instead of the things you shouldnt say, I want to share five things that you cansay to people with Parkinsons.

Make sure that your comments are encouraging, informative , or bring lightness or humor to the situation.

If youd like to make a positive difference in the life of a Parkinsons patient, try my following suggestions of things to say that may change their day for the better.

  • IsthereanythingIcandoforyou? You might be surprised at what a person with a chronic illness may need help with. Tasks from toenail clipping to folding laundry can be difficult with Parkinsons.
  • HowcanIprayforyou? Parkinsons isnt just about the symptoms. A person with any disease must also deal with the normal chaos of life. A prayer may be what is needed. And why wait to do it before you go to bed? Praying with someone right there and then is often welcomed.
  • Youlooksonicetoday. Compliments can be a rare commodity to a patient when they feel stiff and twisted up. The smallest observation can make a big difference. For example, Your nails look so pretty, or That haircut looks good on you.
  • Here, letme helpyouwiththat. We want to be independent, but our level of self-reliance is waning gradually. Offers of assistance are usually met with gratitude rather than resistance.
  • Ienjoyyourcompany. People with Parkinsons can feel as though their life lacks a sense of purpose. Knowing that someone wants to spend time with them can make all the difference to their day.
  • ***

    Who Gets Parkinson’s Disease

    About 1 million people in the United States have Parkinson’s disease, and both men and women can get it. Symptoms usually appear when someone is older than 50 and it becomes more common as people get older.

    Many people wonder if you’re more likely to get Parkinson’s disease if you have a relative who has it. Although the role that heredity plays isn’t completely understood, we do know that if a close relative like a parent, brother, or sister has Parkinson’s, there is a greater chance of developing the disease. But Parkinson’s disease is not contagious. You can’t get it by simply being around someone who has it.

    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.

    What Not To Say To Someone With Parkinsons Disease

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    We all do itwe all say that thing, putting our foot in our mouths, and then immediately regret it. We tend to do it more often when we dont know what is acceptable to say and ask. Every diagnosis, Parkinsons included, has its own vocabulary and no-no’s when it comes to communication.

    The good news is that youre reading this! Thats a great first step. Read on to see what weve found are key questions to avoid when talking with someone with PD.

    There Are Invisible Symptoms Of Parkinson’s

    Caring For Someone With Advanced Parkinson’s Disease

    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?

    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.

    Support For People With Parkinsons Disease

    Early access to a multidisciplinary support team is important. These teams may include doctors, physiotherapists, occupational therapists, speech therapists, dietitians, social workers and specialist nurses. Members of the team assess the person with Parkinsons disease and identify potential difficulties and possible solutions.There are a limited number of multidisciplinary teams in Victoria that specialise in Parkinsons disease management. But generalist teams are becoming more aware of how to help people with Parkinsons disease.  

    Incidence Of Parkinsons Disease

    Its estimated that approximately four people per 1,000 in Australia have Parkinsons disease, with the incidence increasing to one in 100 over the age of 60. In Australia, there are approximately 80,000 people living with Parkinsons disease, with one in five of these people being diagnosed before the age of 50. In Victoria, more than 2,225 people are newly diagnosed with Parkinsons every year.

    Volunteer To Help Out

    What Not to Say to Someone With Parkinsons Disease

    Everyday responsibilities like shopping, cooking, and cleaning become much more difficult when you have a movement disorder. Sometimes people with Parkinsons need help with these and other tasks, but they may be too proud or embarrassed to ask for it. Step in and offer to run errands, prepare meals, drive to medical appointments, pick up medications at the drug store, and help with any other day-to-day tasks they have difficulty with on their own.

    Symptoms Of Parkinsons Disease

    The type, number, severity and progression of Parkinsons disease symptoms vary greatly. Every person is affected differently they may not get every symptom. 

    Some of the more common symptoms are:

    • resting tremor
    • rigidity
    • blood pressure fluctuation 
    • constipation. 

    People living with Parkinsons for some time may experience hallucinations , paranoia   and  delusions . These symptoms are able to be treated so have a talk with your doctor.

    Learn More About How Parkinsons Affects Families & Relationships

    Much more can be found in a powerful new edition of Davis Phinney Foundations free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinsons and the family along with tools care partners may find useful along their caregiving journey.

    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.

    Request your copy of the new Every Victory Counts manual by clicking the button below.

    Find Someone To Talk To

    Connection is vital to living well with Parkinsons disease . You are not alone. It is important to find someone you can talk to. Caring for your emotional health is as important as addressing yourphysical symptoms. A Parkinsons diagnosis can bring on a flood of emotions, including anger, grief and denial. Successfully navigating those feelings requires support. Be open and honest about your experience with PD.

    Be Honest With Each Other

    What is Parkinson’s Disease?

    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.

    Drug Therapy And Research

    If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.

    Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.

    Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.

    Be Sure Medications Are Taken

    This is crucial: If your loved one is forgetting his or her medicine, he or she may not be functioning as well as possible.

    To avoid making mistakes or having to bug or nag your loved one, develop a tool you both agree works, such as a smartphone reminder or a hard-to-miss wall calendar. Being consistent with medication can make a difference in both of your lives and lifestyles.

    Tips For Living With Hallucinations

    It is important for people with PD to talk about hallucinations with their family and care team, because they are manageable and can be troublesome if not treated. Discuss all possible symptoms with your doctor, no matter how minor, rare or bizarre you may think they are.

    • Good lighting and stimulating activities in the evening can help keep hallucinations at bay.
    • While a hallucination is occurring, caregivers can help their loved one by reassuring them that they will be safe and validating their partners experience. For example, say, Ill take the cat outside instead of arguing that there is no cat.

    How To Communicate With Your Loved One Who Has Parkinson’s

    6 Things You Should Never Say to Someone with Parkinsons ...

    If you are caring for a loved one with Parkinsons disease, you are probably familiar with two of the hallmark physical symptoms: tremors and impaired gait.

    Unfortunately, the disease also affects a person’s ability to communicate, which can be frustrating for both caregivers and your loved one with Parkinsons.

    As with many aspects of caregiving, the more you know, the better you can handle challenges. Improving communication with people who have Parkinson’s is possible.

    Which Types Of Exercise Are Best For Parkinsons

    It is important to state upfront that there is no one best type of exercise for people with PD. It is most important to choose an exercise regimen that you enjoy, and will continue to do.

    However, beyond doing exercise that you will stick with, there are some additional concepts to consider when designing an exercise program for someone with PD. 

    Causes Of Parkinsons Disease

    At present, we do not know the cause of Parkinsons disease. In most people there is no family history of Parkinsons Researchers worldwide are investigating possible causes, including: 

    • environmental triggers, pesticides, toxins, chemicals
    • genetic factors
    • combinations of environment and genetic factors 
    • head trauma.

    Parkinson’s Patients Had Less Caffeine In Their System Than Those Without Iteven When Susceptible

    Researchers compared 188 people who had been diagnosed with Parkinson’s disease with 180 people without it. In each group, some members had the LRRK2 gene mutation that puts someone at higher risk of developing the disease but doesn’t guarantee that symptoms will develop. This set researchers out to test whether or not other factors affected the onset of Parkinson’s.

    The team measured the caffeine levels in each person’s blood, with 212 participants from across both groups also providing information on their daily caffeine intake habits. Results found that those carrying the LRRK2 mutation that had been diagnosed with Parkinson’s had 76 percent less caffeine in their systems than people without the diseaseand also were found to drink 41 percent less caffeine per day than participants who were not diagnosed with the disorder. In addition, those with Parkinson’s but who were not carriers of the mutation had 31 percent lower levels of concentration in their bloodstream.

    Choosing The Right Exercise Class For Parkinsons

    Living with Parkinson’s Disease: A Survivor’s Guide!

    When trying to find an exercise class to join, it can be hard to know which ones to try because there are many different types of classes that are marketed to people with PD. When you are evaluating a class, it is important to remember the following:

    • It is the components of the exercise class that are important . You do not need to specifically do boxing or dance if you can achieve these elements of exercise in other ways.
    • The instructor should have expertise in PD. APDA offers a training for fitness professionals which helps them better understand how to create exercise programs best suited for people with PD.
    • The ratio of class members to instructors should be low enough to maintain safety.
    • The class should be adaptable for people of different abilities and mobility. Many classes will offer seated options or other modifications.

    It may take a few tries to find the types of exercise that suits you best so dont give up! Feel free to try different classes in your area to see what types of exercise appeal to you. It can also be motivating to take classes together with a friend or family member. You can hold each other accountable, and also have some fun together. As you find classes you enjoy, you can incorporate those modalities into your exercise schedule. For help in finding classes in your area, you can contact one of our Chapters or Information & Referral Centers. There are also many virtual classes that you can join from home.

    Caring For Someone With Parkinsons Disease

    Parkinsons disease, like any chronic disease, affects families as well as individuals.

    Close family members often take on the role of caregiver as the disease progresses and, in many ways, are as constrained as the person with Parkinsons disease. Carers can find themselves in a role that may increasingly isolate them from work, family and social activities as they dedicate themselves to care giving. While they may take on the role willingly, the fact is they too have suffered significant loss in terms of opportunities and the future they may have planned.

    Carers need factual, credible information and support as much as the person afflicted by Parkinsons disease. They need someone to talk to about their feelings as much as they might need practical advice. Caring appropriately for someone doesnt always come naturally and carers may need to learn new skills. Communication and negotiation skills are particularly important in order to balance the needs of both carer and the person with Parkinsons disease. Carers also need to look after their own health by getting enough sleep and exercise and prioritising some time for themselves.

    Parkinsons NSW can help with all this by providing information about the disease, counselling and access to support groups. Please call the InfoLine on 1800 644 189

    Tremors Are Not The Only Symptom Of Parkinson’s

    Most people dont know much about Parkinsons disease beyond the tremors, so it makes sense that they associate PD with tremors. If you can, just give your friend or loved one some space, and if they want to talk about this with you, they will. Or, you could bring it up gently. Ive noticed you dont have tremors. If youre open to it, Id be curious to hear more about your experience with Parkinsons. This puts the subject in their court, letting them answer when and if they choose.

    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.

    Experts Say You Should Try To Maintain An Upright Posture

    Things you should never do (or say) to someone with ...

    Per the Parkinson’s Foundation, having a stooped posture can have adverse effects, so it’s important to try to maintain good, upright posture. The foundation says bad posture can lead to neck and back pain, a loss of flexibility, and being off balance and potentially falling. Additionally, “stooped posture reduces your ability to take deep breaths, which impacts your ability to speak clearly and loudly. Stooped posture also reduces eye contact,” the organization notes. Since Parkinson’s can also cause you to speak more quietly and to have reduced facial expression, this can make it even harder to communicate.

    The Parkinson’s Foundation suggests using a mirror to check your posture throughout the day, changing positions often, taking movement breaks, getting back or neck cushions, and trying tai chi.

    RELATED: For more health content delivered straight to your inbox, .

    They Hear Noises Or Voices That Arent There

    People with Parkinsons related psychosis commonly report hearing footsteps, a shutting door, or creaking in the house that others dont hear, says Barrett. These auditory hallucinations are less common than visual hallucinations, but sometimes they occur in tandem, especially in those with more severe psychosis.

    What Type Of Healthcare Professional Helps People With Speech Problems From Parkinsons Disease

    If you have speech and voice problems, see a speech-language therapist. Your primary healthcare provider can help you find a therapist in your local area. Some speech-language pathologists have specialized training that focuses on training people with Parkinsons disease to amplify their voice. This is called the Lee Silverman Voice Treatment.

    Speech-language therapists are specifically trained to diagnose and treat speech, language and swallowing disorders. If you have Parkinsons disease, a speech-language pathologist can help you:

    • Maintain as many communication skills as possible. Teach you techniques to conserve energy, including using nonverbal communication skills.
    • Introduce you to assistive devices and techniques to help improve your communication.
    • Recommend exercises to help you improve muscle strength and movements needed to improve your speech and communication options.

    Drinking More Caffeine Can Help Reduce Your Risk Of Developing Parkinson’s Disease

    It may be the morning wake-up ritual for most, but it turns out your cup of coffee or tea might be boosting more than just your energy levels. In a study published in the September 2020 online issue of the medical journal Neurology, tests found that patients with a genetic mutation that predisposes them to Parkinson’s disease were less likely to show signs of the disease’s onset if they drank more caffeine.

    The Basic Elements Of Exercising With Parkinsons

    Parkinson Disease and Driving: Do We Know When to Say When?

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

  • Aerobic e.g. brisk walking, stationary cycling activities that get the heart pumping
  • Strengthening e.g. using weights or resistance bands to improve muscle strength
  • Balance e.g. tai chi, dance to help you be more steady on your feet
  • Stretching e.g. mat exercises, yoga to provide flexibility
  • 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.

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