How Can I Help Manage My Loved Ones Care
A spouse, adult child or other family members can play a significant role in helping a person with Parkinsons disease stay organised and receive the best care possible.
- Find a movement disorder specialist. A movement disorder specialist is a neurologist with additional training in Parkinsons disease. This specialised doctor is generally on the cutting edge of Parkinsons disease care and can help your loved one build a plan that works best for them.
- Attend doctors appointments with your loved one. Doctors appointments can be overwhelming, and its helpful to have another person along to listen and take notes. A partner may also have a better sense of whether mood symptoms like depression and apathy are a concern. Take a list of questions with you to help guide the appointment and ensure you get all the information you need.
- Stay organised with a calendar that you can take to doctor visits. Note doctor and therapy appointments, the start and stop dates of medicines, and any side effects you may notice.
- Keep a list of all doctors phone numbers and addresses in case of an emergency. Also keep a separate and updated list of all prescription medications, their dosages and instructions and the prescribing provider. Note allergies or medication intolerances as well.
Parkinsons Disease: Resources For Patients And Families
Parkinsons disease affects every patient differently. This information can help you gain a better understanding of how the disease may affect you and your caregivers.
Resources include:
- A handbook on Parkinsons disease
- Links to national Parkinsons organizations
- Exercise resources
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What Kind Of Physical Therapist Do I Need
All physical therapists are prepared through education and experience to treat patients with PD. You may want to consider:
- A physical therapist who is experienced in treating people with neurological disorders. Some physical therapists have a practice with a neurological focus.
- A physical therapist who is a board-certified clinical specialist or who has completed a residency or fellowship in neurologic physical therapy. This physical therapist has advanced knowledge, experience, and skills that may apply to your condition.
You can search for physical therapists in your area with these credentials and clinical expertise through Find a PT, a tool built by the American Physical Therapy Association.
General tips when you are looking for a physical therapist :
- Get recommendations from family, friends, or other health care providers.
- When you contact a physical therapy clinic for an appointment, ask about the physical therapists’ experience in helping people with PD.
- Be prepared to describe your concerns in as much detail as possible, and let the physical therapist know what you would like to accomplish by going to physical therapy.
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Make Daily Activities Simpler
Simplifying your daily activities may help you to save your energy for activities that really demand it. It also may help to adjust your daily schedule so that your routine is less stressful or tiring.
Physiotherapists, occupational therapists, other people who have the disease, and the people who care for them may be good sources of help and support.
Living With Parkinson’s Is Easier With Support
Parkinsons is complex and challenging, as it affects not only a persons physical body but their emotional well-being as well. Adjustment to changing needs, grief, depression and anxiety are all concerns that can be addressed with adequate support. Through PRO, you can access the information and support necessary to deal with times of transition or distress.
Our aim is to strengthen the ability of people to participate constructively in their own or a family members Parkinsons care, as well as live active and full lives.
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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.
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Want More Practical Articles Like This
You can find much more inourEvery Victory Counts®manual.Its 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.Request your free copy of theEvery Victory Countsmanual by clicking the button below.
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Best For Support Group Leaders: Parkinsons Movement Disorder And Alliance
Parkinsons Movement Disorder and Alliance
The Parkinsons Movement Disorder and Alliance is a nonprofit organization that focuses on characteristics like empathy, creativity, resiliency, and shared learning.
It also has a wealth of support and educational services. Aside from online programming and Zoom support groups, this organization also offers various in-person support groups located throughout the country.
Additionally, the organization also offers numerous educational programs like Lunch with Docs, in which individuals can meet with a movement disorder specialist virtually over lunch from the comfort of their own home.
However, what is truly unique about this organization is that it offers free workshops across the country called In Sync for supporting and teaching people interested in developing their skills as a support group leader.
There, people can learn skills and build confidence in designing and leading their own support group for Parkinsons disease or other movement disorders. Leadership experts and healthcare professionals also provide guidance through informational presentations.
What Is Parkinson Disease
Parkinson disease is related to a loss of nerve cells in the brain that produce dopamine. Dopamine and other brain chemicals are normally in balance. They control body movements, thought processes, decision making, moods, and other behaviors.
The exact cause of PD is not yet known. Family history, aging, or exposure to certain toxins may contribute to the onset of the disease. PD is a chronic degenerative disease. This means that it gets worse over time. However, people usually do not die from PD.
The severity and symptoms of PD can vary widely. Some people have the disease for 20 to 30 years. They tend to experience a slow decline in mobility and thinking over a long period of time. Others, for whom the disease progresses more quickly, experience problems with movements and thought processes much earlier .
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Where Do I Start
First, you and your doctor should review how you and those around you are coping with your illness. It is very important to realize that the physical symptoms and disabilities caused by Parkinson’s disease can have a major impact on your mental outlook and health as well as the mental health of those around you.
The biochemical changes occurring in the brain with Parkinson’s disease can lead to depression. Depression is a real part of the disease as much as tremor or slowness of movement. In some people, medical treatment of the depression is necessary.
If you are feeling depressed, your doctor may refer you to a mental health provider who will conduct an assessment, or a review of your mental health. Mental health specialists include family therapists, social workers, psychologists, psychiatrists, and other professionals.
The assessment is used to diagnose the problem and determine the best treatment. You will be asked to describe any symptoms you have had and your medical history. You may be given a question-and-answer survey.
Remember Your Experience Is Unique No Matter How Much The Counselor Knows About Parkinsons
Explain that since Parkinsons affects everyone differently, you would like to describe what PD looks like for you. Consider sharing with the counselor how life has changed since your diagnosis, what your range of motor and non-motor symptoms are and how you manage them. Describe how PD has impacted your identity, relationships, outlook and day-to-day life.
Try making a list of why you are seeking counseling and what you hope to gain from the sessions, so they understand your needs and priorities. If making a list feels too overwhelming, try not to be discouraged the counselor can help you sort out your concerns and goals.
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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.
Reach Out For Support
It can be challenging living with Parkinson’s disease, but you do not have to manage the symptoms alone. If you find yourself feeling discouraged or frustrated, share your feelings with others. Spend time with supportive friends and family members, or consider joining a support group. You might also speak with a counselor to address depression, anxiety or any other mental health issues you experience. By taking care of your mental and emotional health, you will be better positioned to reach your physical health goals.
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Finding A Counselor Well
It is natural to want your counselor to be familiar with Parkinsons, especially if the reason youre seeking support is related to PD. Consider turning to the PD community for recommendations. Ask other people with PD, your healthcare team, support group facilitator, or exercise class instructor if they know of counselors who are familiar with PD.
Keep in mind that many counselors are offering services virtually these days, which can expand the options available to you if a counselor is located too far from home.
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.
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How Much Does In
The fees associated with private in-home Parkinsons support services vary depending on the level of care required. The Australian Government and various state governments offer a number of support packages for those living with Parkinsons disease, including those that fall under the Commonwealth Home Support Program, Home Care Packages, and more.
For more information and to work out a care plan for in-home Parkinsons disease support, get in touch with our friendly team today.
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Recognize Parkinsons Disease Symptoms In A Loved One
Close friends and family members are often the first to notice the symptoms of Parkinsons disease. However, these changes are easily confused with the typical signs of aging, particularly in the early stages.
The symptoms of Parkinsons disease include:
- Tremors or shaking in the hand or jaw
- Jerky, rigid movements
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Whos A Candidate For Dbs
Although DBS is the most common surgery for Parkinson’s disease, it’s not appropriate for everyone.
The procedure seems to help people for whom levodopa has become less effective over time, or for people who have developed disabling side effects from levodopa .
One area of research is exploring whether it’s helpful to employ DBS earlier in the course of the disease while levodopa is still working.
DBS isn’t recommended for people with memory problems, hallucinations, severe depression, poor health, or a consistently poor response to levodopa.
DBS hasn’t been shown to benefit people with other parkinsonisms .
As with any surgery, DBS surgery carries a risk of infection. Because DBS is a brain surgery, there’s also a small risk of brain hemorrhage or stroke.
Are You A Good Candidate For Pd Generation
Anyone with a confirmed diagnosis of Parkinsons disease is eligible to participate in the PD GENEration study. During your initial appointment, the genetic counselor will review your medical and family history, as well as provide a personalized genetic risk assessment and review the genetics of PD. You dont need to be a patient at Ohio State to participate in genetic counseling and the PD GENEration study.
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Treatment Approaches For Mood Disorders
Mood disorders like depression and anxiety can be treated with:4
- A combination of therapy and medicines
Research studies have found that people who receive both therapy and medicine have better outcomes compared to those receiving treatment with just 1 or the other. Drugs for mood disorders often take several weeks to start working. As with all medicines, antidepressants and anti-anxiety drugs have side effects. Possible side effects and the risks and benefits of each drug should be discussed with a doctor.4
Research has shown that depression and anxiety in people with PD may be due to changes in brain chemistry caused by the disease. PD affects the pathways that create the neurotransmitter dopamine in the brain. These same pathways also create the hormonal neurotransmitter serotonin. This regulates mood, appetite, and sleep.1,2,5
Some treatments for mood disorders target serotonin, like selective serotonin reuptake inhibitors . Selective norepinephrine reuptake inhibitors are another class of drugs for depression. People taking these treatments should discuss them with a neurologist who is a movement disorders specialist. They are specially trained and understand which medicines are best for people with PD.1,2,5
Treatment for anxiety may include:1
- Anti-anxiety drugs
What To Expect From A Support Group
Some in-person groups are small, others are large. Some groups meet during the day, while others gather in the evening or even on the weekend. Some in-person groups meet in a community-based setting, like a YMCA, a library, or a church basement, while others may hold meetings in a hospital conference room, a clinic, or a rehabilitation center.
Meanwhile, online support groups also vary in size and in demographics. Some groups have been around a long time, with members who have formed friendships over the years, while others may be relatively new groups with people who are still getting to know each other.
One thing all support groups have in common in this: They want to help people affected by Parkinsons disease.
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Contact Our Rehabilitation Services
For more information, or to request referral forms, please call one of our locations.
Patients are seen for an initial evaluation in which problems with walking, balance, and other activities such as getting into and out of bed, standing up from a chair and negotiating stairs are identified. The patient then returns for hour-long therapy sessions four days a week for four weeks. Specific exercises are completed with the therapist demonstrating and completing exercises with patients with the goal of incorporating LSVT BIG movement into everyday life. The earlier in the disease process we see the patient, the better. The sooner their body gets calibrated to BIG movements, the more the patient can preserve or even improve function. We are also able to help those with moderate and severe deficits.
How Can Physical Therapy Help Parkinson’s Disease
Physical therapy is an important part of a treatment plan for Parkinson’s disease. It aims to help individuals with Parkinson’s disease remain active and independent as long as possible. According to a recent meta-analysis, physical therapy significantly improves symptoms related to motor skills. The Parkinson’s Foundation states that increasing physical activity to 2.5 hours a week or more can help people with Parkinson’s disease maintain their quality of life.
Overall, physical therapy can help with the following:
- Increasing endurance
Because physical therapy improves motor skills and decreases pain, you can expect it to help with many of your regular activities, such as getting up from a chair, climbing stairs and getting into and out of a car.
Physical therapy can also improve other symptoms associated with Parkinson’s disease, such as depression, anxiety and fatigue. Lastly, it can help with other health issues that impair mobility, like joint pain.
Doctors recommend beginning an evidence-based physical therapy program as soon as possible. Exercise can induce neuroplasticity, or the brain’s ability to change in response to behavioral changes. When you begin physical therapy, your brain learns new ways to move and think. Exercise also helps brain cells stay healthy. In other words, physical therapy may slow the progression of Parkinson’s disease.
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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.
How Can An Occupational Therapist Help
Occupational therapists are specialists who promote health and well-being. In PD, their primary objective is to enable patients to participate in the activities of everyday life by working with them to improve their ability to engage in tasks they want to, need to, or are expected to do. In many cases, this may require modifying an occupation or the environment to better support occupational engagement.
These therapists provide assessment, treatment, and recommendations in areas such as:
Occupational therapists may also help with changes in relationship dynamics by promoting the maintenance of normal roles, daily routines, and social habits as much as possible. They provide support to patients to continue working, and serve as a link between a patient and the workplace. Therapists also help with social, recreational, and leisure activities, and driving. .
Parkinsons News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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