Communicating With Your Loved One
Parkinson’s disease can make verbal communication very difficult for your loved one. That can get in the way of your ability to care for their needs. Here are some ways that can help you better understand your loved one.
- Talk to your loved one face-to-face. Look at them as they are speaking.
- In the case of advanced disease, ask questions that your loved one can answer “yes” or “no.”
- Repeat the part of the sentence that you understood.
- Ask your loved one to repeat what they have said, or ask them to speak slower or spell out the words that you did not understand.
National Parkinson Foundation: “Caring for Someone with PD” and “For Those Who care For People With Parkinson’s.”
PDCaregiver.org: “Welcome to Care – for CareGivers of People with Parkinson’s.”
Take Care Of Yourself
Probably one of the most important, and sometimes difficult, things caregivers can do is to take care of themselves. This includes maintaining mental and physical health by making and keeping your own medical and dental appointments. As a caregiver, it is important to keep your job whenever possible as it provides not only financial help and possibly insurance coverage, but also a sense of self-esteem. Join a support group for caregivers if possible. Support groups help you meet people who are going through what you are going though, vent frustrations, give and receive mutual support, and exchange resource information and coping strategies. Whenever possible get your sleep, take breaks, make and keep social activities, and try to keep your sense of humor.
Medicines For Parkinsons Disease
Medicines can help treat the symptoms of Parkinsons by:
- Increasing the level of dopamine in the brain
- Having an effect on other brain chemicals, such as neurotransmitters, which transfer information between brain cells
- Helping control non-movement symptoms
The main therapy for Parkinsons is levodopa. Nerve cells use levodopa to make dopamine to replenish the brains dwindling supply. Usually, people take levodopa along with another medication called carbidopa. Carbidopa prevents or reduces some of the side effects of levodopa therapy such as nausea, vomiting, low blood pressure, and restlessness and reduces the amount of levodopa needed to improve symptoms.
People living with Parkinsons disease should never stop taking levodopa without telling their doctor. Suddenly stopping the drug may have serious side effects, like being unable to move or having difficulty breathing.
The doctor may prescribe other medicines to treat Parkinsons symptoms, including:
- Dopamine agonists to stimulate the production of dopamine in the brain
- Enzyme inhibitors to increase the amount of dopamine by slowing down the enzymes that break down dopamine in the brain
- Amantadine to help reduce involuntary movements
- Anticholinergic drugs to reduce tremors and muscle rigidity
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Help Them Feel Normalcy
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 with your loved one, dont constantly remind them that they have a chronic disease. Talk about other things like their favorite new movie or book.
Living A Full Life With Parkinson’s
Living with Parkinsons can affect the way you carry out a broad range of everyday activities, from working and driving, to simply eating and brushing your teeth. But by making some small changes in your lifestyle and also in your approach to activities, you can maintain independence and continue many of your usual routines. It is possible to maintain a good quality of life, simply by embracing change.
There is no doubt that a positive outlook, along with determination to overcome obstacles and focus on what you can do, will help you adapt to living with Parkinsons and, given time and an optimistic attitude, you will be able to continue to pursue the activities and relationships that make your life enjoyable and meaningful.
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Sex Sensuality And Intimacy
Parkinsons can bring with it physical and emotional changes that may challenge the sexual and intimate side of relationships and this may result in a less active and enjoyable sex life. There are professionals who can help you overcome such difficulties and offer lots of help and advice.
See also Intimacy, sex and sensuality.
Diagnosis Of Parkinsons Disease
There are currently no blood or laboratory tests to diagnose non-genetic cases of Parkinsons. Doctors usually diagnose the disease by taking a persons medical history and performing a neurological examination. If symptoms improve after starting to take medication, its another indicator that the person has Parkinsons.
A number of disorders can cause symptoms similar to those of Parkinsons disease. People with Parkinsons-like symptoms that result from other causes, such as multiple system atrophy and dementia with Lewy bodies, are sometimes said to have parkinsonism. While these disorders initially may be misdiagnosed as Parkinsons, certain medical tests, as well as response to drug treatment, may help to better evaluate the cause. Many other diseases have similar features but require different treatments, so it is important to get an accurate diagnosis as soon as possible.
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Suggest They Join A Support Group
A Parkinsons support group will allow your loved one to share their thoughts and feelings with others who are experiencing the same thing. This may help reduce loneliness and isolation.
Your loved one may learn about treatment options and resources that have helped others in the group, and make new friends in the process. Support groups also usually welcome the families and friends of people with Parkinsons.
The Five Stages Of Parkinsons Disease
When a person is diagnosed with Parkinsons disease, doctors often use a scale to determine the stage at which theyre currently suffering. The Hoehn and Yahr scale has been used since 1967, and it allows patients to describe their motor symptoms on a scale of 1 to 5.
Additionally, the Unified Parkinsons Disease Rating Scale can be used to determine a persons current stage. According to the Parkinsons Foundation, this scale is better because it takes into account not only a persons motor symptoms, but also their non-motor symptoms like mood, cognition and social problems.
Heres a breakdown of each stage of Parkinsons disease:
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How To Talk To A Loved One About Parkinsons Disease
These are some strategies that can be helpful while talking to a loved one about Parkinsons disease:
- Check in regularly: Check in on the person regularly to ask them how theyre feeling and coping.
- Use empathetic language: Parkinsons disease can affect a persons ability to go about their daily life. The person might find it challenging to do things they once did easily. This can be difficult and frustrating for them. Try to be empathetic when you speak to them, so they feel supported.
- Offer assistance: As Parkinsons disease progresses, the person may not be able to drive, cook, clean, or care for themselves. Offer them your assistance and let them know they can count on you.
- Encourage them to settle their affairs: If your loved one is in a position to make important decisions, it can be helpful to encourage them to settle their affairs.
What Parkinsons Has Taught Me
COMMUNICATION IS ESSENTIAL: In spite of the issues that often make living with Parkinsons a nightmare for Dennis and for me, he and I daily talk about his feelings and mine. Because of this, we constantly make a point of communicating straight up. We dont hide our feelings and opinions from each other. I dont tell other people about what its like living with the disease that I dont tell him directly. He doesnt try to cover up his disappointment in what he can and cant do. Because we communicate, we are able to laugh a lot about things such as breaking glasses or slopping food or typing on a computer. Laughter helps us both deal with frustration and anger and fear.
FLEXIBILITY IS A GIVEN: There is nothing that a person has planned that cant be postponed or changed. Nothing.
PATIENCE IS MANDATORY: Its a lot easier for a healthy person to do things for a person with physical challenges than to wait while they do it for themselves. I am healthy. I could play the role of superwoman. I dont. I encourage Dennis do as much as he can for himself. If it takes him three hours to sweep the walk, so be it. If he needs salt, he gets up and gets it. Dennis has always taken pride in contributing to the well-being of our household. He deserves to participate. It is my belief that if I take over all the responsibilities for running our lives, I will eventually make him weaker and more dependent. This is not a good situation for either of us.
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How To Help Someone With Parkinsons Stay Mobile
A very common symptom of Parkinsons is freezing. This happens when a person is walking or moving and suddenly experiences extreme rigidity and an almost complete loss of movement as if their feet are glued to the floor. When this happens, prompting can help your loved one become unstuck. Ask them to pretend that they are stepping over an imaginary line or object on the floor, or even encourage them to rock very slowly and gently from side to side to help them get moving again. If freezing is a common occurrence for your loved one, consider purchasing a specialty mobility device like a walker or rollator that is equipped with a laser pointer. When freezing occurs, they can simply press a button to project a laser line on the floor and use it as a visual cue to help them continue moving.
Massage therapy for Parkinsons patients can alleviate stress and relieve spasms, tremors, rigidity and muscle cramps. Heating pads also soothe aching muscles, and menthol pain relieving gel does wonders for stiff joints, but never use both together.
Exercising can be difficult at first but very beneficial for those living with PD. Encourage your loved one to do hand exercises like squeezing a rubber ball for short periods of time throughout the day to help reduce tremors and to keep hands and fingers strong and flexible. Even short daily walks and a mild fitness routine can keep muscles, tendons and joints strong for as long as possible.
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.
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Dont Neglect Your Health
Many aspects of caring for a loved one are stressful, and if your own stress level is ratcheting up, you need to step back and get help for yourself. Keep up with regular physical checkups and follow your doctors advice if you need treatment for any ailments. And dont make a habit of putting off important tests for the sake of your loved one.
This care includes your mental health. If you begin to have feelings of intense frustration, talk to your doctor there are probably treatments that can help. And consider respite care or home help if you cant get family and friends involved.
Stage Four: Symptoms Are Severe And Disabling And You Often Need Assistance To Walk Stand And Move
Stage Four Parkinsons disease is often called advanced Parkinsons disease. People in this stage experience severe and debilitating symptoms. Motor symptoms, such as rigidity and bradykinesia, are visible and difficult to overcome. Most people in Stage Four arent able to live alone. They need the assistance of a caregiver or home health aide to perform normal tasks.
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Talk About What Youre Going Through
Yes, it feels crummy when you lose the ability to do certain tasks. These things happen, and when they do, your partner wont mind assisting you. They love you. Its human instinct to want to protect and care for your loved ones. Doing things to help others is incredibly fulfilling. Thats why your friends and family wont mind helping you out when your partner is unavailable. They love you too.
Home Safety Considerations For Parkinsons Disease
Mobility problems are common symptoms of Parkinsons disease, therefore maximizing the safety and accessibility of a patients home is a top priority. Since seniors with PD often use mobility aids like canes, walkers, rollators or wheelchairs, wide, clear pathways in rooms and hallways are important. The following home elements can make it difficult for a person with limited mobility to get around their home safely.
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Living With A Husband Who Has Parkinsons
For the most part, living with Parkinsons is like having a third person with you at all times. Imagine having someone with you who takes control randomly and changes his mind at will. Its stressful. The major issue I have found living with Parkinsons is its unpredictability.
In terms of our lives, I am most challenged by my inability to plan. I never know how Parkinsons will impact my husband. Dennis can be doing something fairly normal, such as having dinner or watching television. Then, suddenly, he cant walk. Sometimes his is even frozen in place. He can be ready to go to a football game one minute and unable to get out of the car the next. He can enter a party with enthusiasm looking energetic and lively and find that he has to leave the festivities a half hour later hardly able to navigate out the door. Our lives have become a best guess scenario in terms of how Dennis body will perform at any given time.
This unpredictability is often misunderstood by people who dont know Parkinsons symptoms or appreciate the complexity of the disease. I understand their confusion and sometimes disbelief. It is difficult to accept that a person with Parkinsons who looks healthy enough one when he entered the room lacks the control to buck-up, push through or hold on a minute.
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.
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Getting Dressed With Parkinsons Disease
Dressing someone with Parkinsons disease may become a time- and labor-intensive task as their motor skills and strength wane. In addition, muscle stiffness and painful muscle cramps can make dressing difficult and unpleasant. Whenever possible, replace buttons or zippers with Velcro or magnetized fasteners. Opt for loose-fitting clothing, which is easier and more comfortable to get on and off. An extra-long shoehorn can help with putting on shoes while seated. One of the most important things for a caregiver to remember when providing assistance with dressing is to go slow and set aside plenty of time for this activity of daily living .
The Importance Of Establishing Parkinsons Prevalence Numbers
Parkinsons Prevalence estimates will help the Parkinsons Foundation attract the attention of federal and state government as well as the pharmaceutical industry to the growing need and urgency in addressing PD. This is an important first step to better understanding who develops PD and why.
The next phase of this study will be to determine the rate of PD diagnosis or incidence, how that has changed over time and what is the rate of mortality among those affected by PD. Determining the prevalence and incidence will allow the PD community to effectively advocate for additional money and resources necessary to support Parkinsons research.
Parkinsons Foundation Prevalence Project numbers highlight the growing importance of optimizing expert Parkinsons care and treatment for people with Parkinsons, which would help future caregivers and ease the strain on health and elder care systems.
By supporting this study, the Foundation works to better understand Parkinsons with the goal of solving this disease. Establishing these numbers and using them to educate PD communities and influence legislation will help the foundation provide tailored resources, outreach and advocacy to the underserved PD populations across the nation. The entire published study is available in the Parkinsons Foundation scientific journal, npj Parkinsons Disease.
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Caregiving & Helping Others
Parkinsons disease can be emotionally difficult for caregivers, but it also has its rewards.
Here are some strategies that can be helpful while caring for a person with Parkinsons disease:
According to a 2018 study, the cognitive symptoms of Parkinsons disease had a greater emotional impact on loved ones and caregivers than the physical symptoms. As the dementia progresses, carers may experience a sense of grief and loss, as they feel their loved ones are not themselves anymore.
Tips For Yourself As A Caregiver
While caring for someone with Parkinsons disease, its also important to care for yourself. These are some tips that can be helpful:
- Allow yourself time to process your emotions: Your loved one may not be the only person struggling to accept their diagnosis and prognosis. You may feel like youre in an alternate reality, where your whole world has turned upside down. Take the time you need to process your emotions so that you can stabilize yourself and be a source of support for them.
- Set realistic goals:Caregiving can be stressful and take a lot of work. It can be helpful to set realistic goals for yourself and determine your limits.
- Forgive imperfections: There may be times when youre unable to do everything you planned to or as well as you hoped to. Be kind to yourself accept that youre human and everything may not always be perfect.
- Explore community resources: It can be helpful to locate medical services, support groups, and other community services for your loved one as well as yourself in advance before you need them.
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