Volunteer To Help Out
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.
How Does Parkinsons Affect My Loved Ones Mental Health
Parkinsons disease affects a persons mental health in a few different ways. It has direct effects on the brain, and it causes stress because its a chronic disease. Other side effects, like sleep loss, can affect a persons emotional health.
Also, Parkinsons medications can wear off suddenly and lead to off periods where motor symptoms abruptly worsen, which might have your loved one feeling frustrated.
Its possible that your loved one may feel self-conscious about their disease and its symptoms, too. Depression and anxiety are two of the most common symptoms of Parkinsons disease.
Up to two-thirds may have anxiety. These disorders can negatively affect your loved ones quality of life.
Dementia may occur with Parkinsons disease, especially in its later stages. This can lead to trouble remembering, paying attention, and using language correctly.
Less often, people with Parkinsons will have hallucinations, or seeing or hearing things that arent real. Psychosis is a side effect of certain medications used to treat Parkinsons.
Most people who have Parkinsons disease are aware of this side effect and may ask for changes in medication when hallucinations occur. Often, adjusting medications eliminates the hallucinations.
It may be hard for you to deal with some of your loved ones personality and behavior changes. Though it can be hard for you to understand just what theyre going through, try to be compassionate.
Caregiver Corner: When Communicating With Your Loved One Is Threatened By Parkinsons Disease
Communication is a vital way we connect, build and maintain relationships. It is scary when your loved one begins to have communication issues due to Parkinsons disease that may threaten your bond. The good thing is it doesnt have to be that way.
Reviewing some cognitive and communication changes that someone with PD may experience as the disease progresses, your loved one might:
- Have difficulty concentrating or expressing thoughts in a timely manner
- Have difficulty finding the right words
- Have difficulty following a conversation with numerous people in a room talking
- Have forgetfulness and difficulty with retrieval of learned information
- Have embarrassment with motor changes that are prohibiting them from forming words
Understanding some of those common changes is a start. From there, we as the caregivers must be mindful of our communication style and adjust as our loved ones PD progresses.
The key to effective communication is the ability to listen. As a caregiver, you must use techniques that provide an open non-threatening environment. Your listening behavior can either enhance and encourage communication or shut it down. Communication is the Second Pillar of Activities and Engagement, the ability to listen effectively is the foundation of that pillar.
There are two types of communication: verbal communication and non-verbal communication.
Verbal communication – Here are some basic tips for success:
You May Like: Can Parkinson’s Run In The Family
Tips For Coping With Speech Difficulties
- Exercise your voice by reading out loud or singing every day.
- Drink enough water, avoiding shouting and rest your voice when it is tired.
- Train your voice like an actorsit and stand with good posture, do exercises for articulation, breathing and projecting the voice.
- Get feedback from friends and family members about how others perceive your speech develop a cue or code word you can use in public to make you focus on speaking clearly.
- If you have soft speech, use tools such as a voice amplifier , placed on your shirt, and on the telephone . Ask an occupational therapist about other tools.
- Make eye contact with the person to whom you are speaking.
- Reduce background noise.
- Socialize in small groups or one-on-one.
- If you experience a facial masking, use feeling words to communicate your emotions . Use practice physical gestures to help convey emotions.
- Determine which times of day your speech is best. Plan social engagements around those times.
Even in the early stages of PD, many report that their voices are too soft, causing others to ask them to repeat themselves. Other people with PD may have a gruff or hoarse quality to their voice. Try these strategies:
Page reviewed by Dr. Chauncey Spears, Movement Disorders Fellow at the University of Florida, a Parkinsons Foundation Center of Excellence.
For more insights on this topic, listen to our podcast episodeImportance of Early Detection of Swallowing Disturbances.
Help Them Feel Normal
A disease like Parkinsons can interfere with the normalcy of someones life. Because people may focus so much on the disease and its symptoms, your loved one may start to lose their sense of self. When you talk to your loved one, dont constantly remind them that they have a chronic disease. Talk about other things like their favorite new movie or book.
Also Check: What Is The Life Expectancy Of Someone With Parkinson’s Disease
Whats The Benefit Of Joining A Caregiver Support Group
Parkinsons disease affects more than just the person who has the disease. It can have a ripple effect on the whole family.
As a caregiver for someone with Parkinsons, its important to have patience with them and yourself. The role can become overwhelming if you dont care for yourself at the same time.
A caregiver support group is a place where you can get any concerns off your chest. Youll be surrounded by people who understand what youre going through, and who can offer support and advice.
In-person and online Parkinsons disease caregiver support groups are available through organizations like these:
Spoken And Unspoken Words
The production of language has also been studied in Parkinsons, but such studies are hampered by the difficulty to know if a problem in language production depends on processes inherent to production, or fail because of an incorrect understanding in the first place.
Studies, however, show that Parkinsons patients use language with simpler syntax and lower information content than healthy individuals. Such difficulties seem to arise at later disease stages since non-demented and mildly impaired patients do not show these features.
An aspect of speech production that might take its social toll is the tendency of Parkinsons patients to make pauses that are prolonged and often inappropriately timed. Since a pause often signals that it is another persons turn to speak in a conversation, patients might find that others often interrupt their speech. The use of incorrect verbs is also frequent among Parkinsons patients, and verbal fluency is often impaired.
This fluency more often affects semantic content, rather than phonetic, indicating that working memory involving meaning is more affected than memory involving phonetics. There is evidence that these problems in language are linked to each other, and more importantly, to the level of cognitive deficits, and tend to worsen as the disease progresses.
Also Check: What Are The Four Cardinal Signs Of Parkinson’s Disease
Educate Those You Know
. That way, your loved ones are more likely to remember what you have told them and perhaps feel less overwhelmed. For example, one way to bring up the issue of facial masking is to look at photo albums. Find a photo of yourself with a blank stare or stiff smile, show it to your family and discuss masking.
Respond to questions. A family member or friend might unintentionally raise this issue for you by asking, Are you angry about something? Unless you truly are angry, use the opportunity to say, No, but thanks for asking. Parkinsons disease can make me look this way because the muscles in my face are stiff.
Speak up. If you find yourself becoming annoyed because it seems as though everyone is asking you to repeat yourself or people seem to be ignoring you, step back and assess the situation. Then simply explain to people that Parkinsons disease may restrict your voice volume and ask them to let you know when you need to speak louder.
Exercise your sense of humor. If you cannot speak as quickly and clearly as you did in the past, your friends and family will certainly notice but may be too apprehensive to bring up the issue with you. They may try to help by finishing your sentences or even speaking on your behalf. Sometimes using humor is a good way to deal with this situation.
Impulsive And Compulsive Behaviour
Some patients who take dopamine agonists can experience problems controlling impulsive or compulsive behaviour .
Impulsive behaviour refers to the inability of patients to resist carrying out certain activities, some of these activities could be harmful to themselves or others. In many cases, this behaviour is out of character.
Compulsive behaviour refers to an overwhelming urge to act in a certain way to reduce the worry or tension this urge produces. This behaviour can be expressed in a number of ways, including addictive gambling, impulsive shopping, binge eating and hypersexuality.
Nurses who suspect a patient might be experiencing compulsive or impulsive behaviour should discuss the issue with the patient and the patients neurologist or GP as soon as possible.
Read Also: Can Parkinson’s Run In The Family
Support Groups And Parkinsons
A support group is not a substitute for the support of family and friends but can provide an opportunity to:
- make new friends and enjoy the social opportunities support groups offer
- extend your support team which can make it easier to get the help you need, when you need it
- provide support for your carer and close family
- minimise feelings of isolation and having to cope with Parkinsons alone
- learn about clinical trials and opportunities to participate in them .
If youre unsure, it may be useful to attend one or two meetings before you commit to joining a group. Talk to members to find out more about what the group offers and any aspects that are of particular interest to you. Remember that almost everyone is apprehensive about going first time, but if after several meetings you dont feel comfortable then see if there is another local group as no two groups are the same.
The Parkinsons association in your country may be able to provide contact details for local groups. Your care team may also have suggestions or you could look in your local library, local newspaper, or on the Internet.
If there isnt a group in your area then you might want to consider setting one up. Your national Parkinsons association may be able to provide helpful information on starting a new group.
Problems With Speech And Voice
If you experience problems with your speech and voice you may find your speech sounds slurred or unclear, or that you speak more quickly than before. You may also find you have to slow down to make yourself understood. It can also become harder to control how quickly you speak.
Your voice can also change. It may sound:
- unsteady and flat
- difficulty putting enough power into your movements
Speech and language therapists are healthcare professionals who can provide assessment and advice on all aspects of communication, from facial expression and body language to speech and communication aids.
Clinical guidelines recommend that your GP, specialist or Parkinsons nurse should consider referring you to a speech and language therapist with experience of Parkinsons when youre in the early stages of the condition.
This is important because you may not notice changes to your speech and communication if they are subtle. But a speech and language therapist can uncover any issues, help you manage them and stop them becoming worse.
You may find it helpful to have regular check-ups. This will allow your speech and language therapist to monitor whether there are any changes with your speech. If there are, they can recommend specific exercises or programmes to help you.
Another recommendation in the guidelines is that youre given equipment to help you communicate if you need it .
Medication such as levodopa may help improve how loudly and clearly you speak.
Also Check: What Color Is The Ribbon For Parkinson’s
Q: How Does A Person Know Which Is The Best Aac Device For His Or Her Problem
A: Deciding on the best AAC device is a team approach. The individual should consult their doctor and SLP for options. They also should have a comprehensive evaluation with an occupational therapist who specializes in AAC. During this evaluation they will be able to try out various devices to determine which device works best for their individual needs. They will also receive education on the pros and cons of the available options. It is highly recommended that they include their family and/or caregivers as part of the team so that everyone understands the potential benefits and pitfalls of each option.
Q: When Should A Person With Pd Who Has A Communication Barrier Consider Using An Aac Device
A: They should consider a device when they cannot be understood, cannot make their needs known, feel isolated because of their speech difficulties, or overall cannot participate in communication with familiar and unfamiliar listeners. If an individual feels that their challenges with speaking have impaired their ability to participate in medical decisions, talk to their family members or friends, or overall negatively affect their quality of life, then a referral to an occupational therapist or speech language pathologist who specializes in AAC needs to be considered. When we work with a person with PD, we are doing it in conjunction with a speech language pathologist to make sure that all of their communication needs are being met.
Read Also: Parkinson Awareness Ribbon Color
How Do I Care For Someone With Parkinsons Disease
Parkinsons disease is a progressive neurodegenerative disease that demands proper care for the patient. Since it adversely affects the motor abilities of the patient, a caregiver is extremely important who can take care of the patient. The major aim of the caregiver should involve-
Quality of Life: The caregiver plays an important role in maintaining the quality of life of the patient with Parkinsons disease.
Appointments: The caregiver should be responsible for keeping a track of all the appointments with the doctor.
Medicines: The caregiver has to make a note of all the medications prescribed to the patient by the doctor and give him those medicines from time to time.
Exercise: The caregiver should be aware of the general health of the patient. The patient should have a balanced and healthy diet and exercise regularly. This should be checked by the person who takes care of the patient.
Knowledge: The caregiver should make attempts to educate himself about the signs and symptoms of the Parkinsons disease along with the treatment protocol and the progression of the disease.
Understanding: The love and care offered to the patient by the caregiver can help him deal better with the mental turmoil accompanying the Parkinsons disease.
How Parkinsons Could Affect Your Partner/spouse
When you are married or involved in a committed relationship, Parkinsons disease is something that happens to both of you.
Having Parkinsons can change the dynamics of the relationship, the family, and both partners career roles and responsibilities.
In addition to the movement symptoms associated with Parkinsons, non-motor symptoms such as depression, anxiety, and sexual dysfunction can occur. It is not unusual for relationships to become strained due to the stress of being diagnosed or living with PD. Sometimes, the biggest challenge is to remain open to one another at a time when you may feel more inclined to shut down. If you can find the courage to be honest and vulnerable with one another about your fears and worries both now and in the future, your partnership may become stronger than before.
If you find that you are having trouble communicating about the changes that may be occurring in your life and your relationship, it may be wise to work with a relationship counselor who can help you identify new or better ways of communicating and problem-solving together. Visit our new Young Onset Resource Guide for information and organizations that may be able to help you address relationship issues.
APDA Publications
- Valentines Day Marriage show (Podcast
You May Like: Is Parkinson’s Hereditary Or Genetic
How To Best Communicate
Parkinsons disease can interfere with your ability to communicate for reasons that have nothing to do with education or intelligence. Muscle rigidity in your throat and chest can cause your voice to become difficult to hear. Internal tremors, stiff face and throat muscles, as well as some medications, can cause slurring of words.
Certainly, your voice and body language are a big part of your life. And anything that impacts your ability to communicate with others can have a significant effect on your relationships. Early on, you might not experience rigidity in your muscles, but most people seem to develop this symptom as the disease advances. This is referred to as masking because your facial expression appears to be locked in place, as if you were wearing a mask.
As time goes on, Parkinsons will affect your ability to control your body movements. As a result, you run the risk of being misunderstood or worse yet, being labeled impatient, anxious or even drunk. To avoid these misunderstandings, it is important to discuss these issues with the people you encounter. Let them know about the ways Parkinsons disease affects your body and your ability to communicate. This is an investment that can be made at every stage of the disease.
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.
Read Also: Parkinson Disease Inherited