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Dont focus on the what-ifs. Theyll defeat you most every time. Do focus on now. It may seem like a tremendous struggle at the moment, but things could be worse. Today may be one of the harder days, but when the clock strikes 12, its a new day. Something wonderful could be ahead, waiting to happen. Your patient may turn into a pumpkin! Dont lose hope.
If you dont have one already, get a sense of humor. Without one, youll often despair. Find something funny in every day. You need to laugh.
Get yourself into a support group locally or online. You may not think you need it, but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
You need your friends. Dont alienate them by thinking you can do this by yourself. Accept their invitations to help. Accept an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, or cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may see your need better than you can.
Try to think ahead. Your loved ones mental faculties may not be so great anymore. A daily schedule may be useful, with a reminder for doctors appointments, visitors, special occasions, etc.
Parkinsons Disease And Caregiving
Early Parkinsons disease usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.
Host: Inland Caregiver Resource Center, Colton, CA
No information is available about the recording of this webinar.
Tuesday, December 6, 4pm
Expertly Trained In Parkinson’s Disease Care
Senior Helpers Parkinsons Care Program is a specialized training program for our caregivers created in conjunction with leading experts from the Parkinsons Foundations Centers of Excellence network. This program, the first of its kind in the in-home senior care industry, is designed to provide our caregivers with the expert training and education necessary to create personalized care plans for individuals living with Parkinsons disease.
Parkinsons is a progressive condition, which means your loved ones care needs will change as the disease advances. At first, you may just need some assistance with running errands, but that might evolve to include assistance with personal care and activities of daily living. There is not a one-size fits all approach to care, which is why Senior Helpers works with each of our clients to develop a care plan unique to their specific needs.
Senior Helpers caregivers are educated and trained on:
- How Parkinsons disease advances and changes
- Techniques and strategies to identify and manage the motor and non-motor symptoms of Parkinsons
- Home safety and fall prevention
- Diet and nutrition
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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.
What To Expect When A Loved One Has Parkinsons Disease
Parkinsons disease is a progressive neurological disorder that causes a gradual loss of muscle control. Although the disorder generally occurs in elderly people, it is occasionally seen in younger adults. In fact, roughly 5-to-10% of all Parkinsons disease cases occur before the age of 50.
Parkinsons disease usually evolves in five distinct stages:
It is important to remember that Parkinsons disease affects each patient differently. While some may remain in Stage 1 for years, others advance quickly. Some people might even skip one more stage of disease progression entirely.
There is no cure for Parkinsons disease, but prescription medications, deep brain stimulation, and certain therapies will usually alleviate or lessen symptoms. A healthy diet and regular exercise can also help people with Parkinsons disease improve muscle strength and balance.
While Parkinsons disease itself is not fatal, its debilitating effects do increase the potential for deadly complications. Because swallowing issues may cause aspiration of food or liquids into their lungs, pneumonia is the most common cause of death among people with Parkinsons disease. Worsening mobility and balance problems also increase their risk for fatal falls.
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Zoom Session Parkinsons Caregiver Support Group
While these sessions will not occur in-person, Theresa Stern, Neuroscience Institute Director, is available by phone and email to offer you support and guidance at 378-5022 or . Thank you for your understanding as we observe a period of social distancing to ensure everyones health and well-being.
Designed to help caregivers come to a better understanding of Parkinsons disease, participants learn tools for providing care, communicating with loved ones and taking better care of themselves. It also provides the opportunity to discuss questions and concerns with listeners who share their experiences. For more information, please call 378-5022.
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Top 10 Ways A Care Partner Can Support Someone With Parkinsons Disease
In this 1-hour webinar Yazmil Soriano, Care Advisor with the Parkinson’s nonprofit, Neuro Challenge, offers tips for caring for a person with Parkinsons disease . Although the ten “ways” are very high level concepts such as communication and journaling, many specific tips are shared as part of the ten concepts.
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Can Bike Rides Reduce The Signs Of Parkinsons
According to some research, people who ride bikes at least three days a week can reduce the symptoms of Parkinsons. Riding a bike is as effective as taking medications to ease the symptoms.
So people who are physically active and ride bikes are many fitters and have few symptoms. They will need fewer medications and have few health complications related to the lungs, heart, and vessels.
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Caregivers And Parkinsons Hallucinations
Hallucinations are imagined sights, sounds, smells, or sensations that occur when someone is awake. Sometimes that person may be aware of the hallucination and have whats called insight, but it is also common for them not to know what theyre experiencing. Visual hallucinations, the most common type among people with Parkinsons, occur in as many as 75 percent of people with the condition.
Its important for caregivers to know what they can do to manage their own stress related to a loved one whos having hallucinations. People with Parkinsons may have hallucinations caused by infection, simultaneous use of multiple drugs, or brain changes from Parkinsons or another type of dementia, such as Lewy body dementia.
The first step in coping with hallucinations is to talk with your loved ones neurologist and health care team. Conducting a medical workup can determine if the hallucination was triggered by side effects from a medication, such as levodopa, or by an infection, such as a urinary tract infection. Treating the underlying infection may improve the hallucinations.
Hallucinations are more common in dim or dark lighting, so caregivers can help minimize them and the associated stress they cause by maintaining bright lighting when someone with Parkinsons is awake. Reassuring someone whos having hallucinations can be more calming than telling them theyre wrong about what seems real to them.
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Parkinsons Foundation Care Partner Program
This series of eight free, self-paced, online courses is recommended for anyone caring for a person living with PD. The aim is to promote awareness, create actionable strategies for self-care, develop clear networks for support, and provide relevant tools to empower Care Partners. Create an account or sign in with LinkedIn, Facebook, or Google. Chrome web browser is required.
Preparing For Your Role As Caregiver
Your role as a caregiver will change as your loved ones disease progresses. People with late stage PD need more assistance with everyday activities than those in early stages of the disease. Learn about the disease and how it progresses to create a plan for care, including what outside assistance you may need and when. While learning about PD, remember that each person has their own unique experience, and not everyone experiences every symptom.2
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At This Time All Support Groups Are Only Available Remotely Via Zoom
PWP support groups provide opportunities for participants to share personal experiences and feelings, coping strategies, or firsthand information about medication, exercise, or other treatments. Each group is led by a facilitator with Parkinsons or a caregiver. If you are unsure if a support group is right for you, or if you have any questions about one or more of these groups, please call 250-360-6800, or email us at and we will connect you with the group facilitator to learn more.
The following support groups are maintaining their monthly meetings via Zoom. Please contact us by phone or email to register.
This group is for people living with Parkinsons.
Meets monthly on the SECOND Tuesday
1:30 pm 3:00 pm
Communicating With Your Loved One
Parkinsons 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.
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Last But Never Least: Caring For Yourself
In my experience as a clinician, I have seen the PD caregiver become consumed in caring for the patient. Its true that theres a lot to do for your loved one, but many caregivers do not take enough time to focus on their own needs. Studies show that women caregivers who do not take care of themselves have more health problems than women who do. If you are a caregiver who forgets to take care of yourself, here are some tips to keep in mind:
- Get prepared. Be realistic. Determine how much you can do yourself and what type of outside support is needed
- Take care of yourself. Get help. Dont try to do it alone. Include neighbors, friends, and others in the community
- Foster your relationship. Communicate. Make sure to maintain your relationship with the person with PD. Quality relationships can help reduce caregiver depression and improve physical health
Rachel Schindler, MD was previously a physician/scientist who lead the strategy for Neuroscience in the Clinical Sciences group at Pfizers Global Innovative Pharmaceuticals Medicines Development Group. She is the founder and former Director of the Neurobehavior and Memory Disorders Center at University Hospital at Stony Brook.
Develop A Support Group
Caring for a loved one can be deeply satisfying. Its a chance for your family to draw together as you face the challenges of Parkinsons disease head-on.
However, providing emotional and physical care for someone with an illness can become stressful and, at times, overwhelming. Balancing your personal life with caregiving can be difficult. Many caregivers will face periods of feeling guilty, angry, and abandoned.
Of course, you dont have to experience this alone. Support from other family members or professionals can help:
- reevaluate approaches to treatment
- offer new perspective on the caregiving relationship
Ask your doctor or your local hospitals health outreach office for contact information for a Parkinsons disease caregiving group. The person youre caring for will likely also benefit from being part of a support group.
Support groups allow for open communication with other people facing the same struggles. These groups also provide an opportunity to share suggestions, ideas, and tips among the group members.
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Parkinson Education Program For Community Caregivers
The Parkinson Education Program for Community Caregivers is an introductory 8-module online educational series offered by Parkinson Society Southwestern Ontario. This program is for caregivers who provide care to individuals living with moderate to severe Parkinsons disease . The target audience is caregivers working in community settings e.g. home health care, retirement homes, long-term care homes, and hospitals, caring for those living with Parkinsons disease.
How Time Consuming Will It Be
Caregiving can be a full- or part-time role. Your time investment depends on how much help your loved one needs and how much responsibility youre willing to take on.
If you already work full-time or have children at home, you may need to delegate some of the caregiving duties to other family members, friends, or a paid caregiver. Do an assessment of the persons needs and calculate how much work you can handle.
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Who Gets Parkinsons Disease
Parkinsonâs disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimerâs disease. Estimates regarding the number of people in the United States with Parkinsonâs range from 500,000 to 1,500,000, with 50,000 to 60,000 new cases reported annually. No objective test for Parkinsonâs disease exists, so the misdiagnosis rate can be high, especially when a professional who doesnât regularly work with the disease makes the diagnosis.
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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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.
Meal Preparation And Nutrition
Eating a healthy diet is important for those with Parkinsons disease. A clean and nutrient dense diet is critical because it helps strengthen muscles and bones while reducing muscle atrophy and excess fat accumulation. Home Care Assistance can help prepare healthy meals that will provide your loved one the nutrition he or she needs to maintain optimal health and vitality in his or her later years.
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What Does This Mean For Me
It is possible to live well with PD despite the physical and/or cognitive changes that come with the disease progression. PD is often considered a family disease because of the effect it may have on the persons family and friends. Being a Caregiver is an important role and most often performed by the spouse, or an adult child. In the early and middle stages of the disease, the role is often described as a partnership. The care partner and the person with PD have a dynamic relationship as both adjust to sharing duties and working together. In the later stages of the disease, caring for someone with PD may become physically and emotionally draining. It is important for Caregivers to remember that it is okay to ask for help, and to acknowledge that one person cannot do it alone. Caregivers often feel empowered and supported by staying engaged in social activities, building a strong backup team, and attending support groups.
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