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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.
Missed Opportunity In Parkinsons Caregiver Support System
In the study, a quartet of scientists in The Netherlands highlight what they see as a missed opportunity when it comes to delivering support to caregivers.
During the care process, informal carers of persons with gain unique knowledge from their own practical experiences in dealing with the challenges of care. Yet, this relevant and unique knowledge often remains unused, and in fact disappears entirely once the loved one with has passed away, the researchers wrote.
They suggested that former Parkinsons caregivers could act as peers and mentors for current caregivers, sharing their acquired knowledge and expertise. In addition to helping support current caregivers, those once in that role could find it rewarding to share their experiences and feel part of a community.
To assess how this support network setup might be received, the researchers conducted a survey of 141 current caregivers and 15 former caregivers. Most of the respondents were women most current caregivers were partners of someone with Parkinsons, while the former caregivers were about evenly split between partners and children of someone with Parkinsons.
A near majority of current caregivers were offering support both during the day and night help was needed only during day hours for 28% of this group. A majority of the former caregivers had helped to care for a person with Parkinsons for more than 10 years.
Dont Go Through Your Health Journey Alone
You can stay connected to friends and family, plan and coordinate meals, and experience love from any distance.
All of this is ready for you when you start your personal CaringBridge site, which is completely free of charge, ad-free, private and secure. Dont spend another minute alone!
CaringBridge is a wonderful place to share how people are doing.
Carleen C.W.D.
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Daily Exercise And Physical Activity
Doing regular exercise is one form of medication. It will help a person benefit from the symptoms such as tremors, stiff muscles, constipation, and mobility issues. It will further improve the balance and flexibility of a person.
They can even do light-based home activities like gardening, laundry, cycling, and yoga. Playing some games like tennis also helps a person be active and flexible.
In the early stages of Parkinsons Disease, it is advised to go out to gyms and fitness studios and be socially active. People with mild problems can have some therapy sessions and get the right therapy for their issues.
However, it is important to keep an eye on people with Parkinsons Disease as they will risk losing balance or falling.
How Trained Parkinsons Caregivers Can Help
If you are one of the one million people living in the United States who have this chronic ailment, you are aware that the symptoms typically develop gradually over the course of several years. As the condition advances, it is our duty and desire to be there for you and to provide you with Parkinsons care at home.
The expert home care teams provided by All American Home Care are aware of exactly how to work with muscle stiffness and tremors in order to prevent frustration and falls. With the following supportive caregiving services, we are also able to assist those living with Parkinsons disease in maintaining their strength and dignity:
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Options For Parkinsons Disease Care
These burdens can ultimately lead a family caregiver to explore alternatives for Parkinsons disease care. Eventually, many decide to place their loved ones in long-term care facilities, such as assisted living or a nursing home.
Assisted living residents usually receive help with daily tasks, meal preparation, medication management, and escorts to doctors appointments. A nurse is onsite 24/7 and apartments are equipped with emergency call buttons so residents can summon help when necessary.
However, assisted living facilities generally arent equipped to care for people with severe mobility problems or advanced dementia. As a result, your loved one will likely be transferred to a skilled nursing facility once they reach the advanced stages of Parkinsons disease. Unfortunately, the expense of assisted living could quickly deplete their financial resources, limiting your choice of facilities to Medicaid nursing homes.
Nursing homes have their own issues. Even the best facilities tend to be understaffed, and few can provide the level of one-on-one care most people desire for their loved ones. Residents will be competing with each other for staff members limited attention, and those with advanced Parkinsons disease may not be able to communicate in a way that ensures their needs are met. These same issues may also make Parkinsons disease patients more vulnerable to physical or sexual abuse.
Family Caregiver Respite Program
As a family caregiver, it is important that you attend to your own health needs and find ways to engage in activities to aid in stress reduction and self-care. In the face of advancing Parkinsons disease, many caregivers slowly take on increasing responsibilities and have few opportunities for meaningful breaks.
The Family Caregiver Respite Program was created to provide modest financial assistance for the care of Parkinsons patients who require assistance with Activities of Daily Living and cannot safely be left alone. This program reimburses costs for short term care for the Parkinsons patient, while the caregiver receives a break from their challenging role. In order to be eligible for this program you must:
- Be a primary caregiver who resides with a family member with Parkinsons
- Live in the PRO service area
- Provide a description of the financial situation that creates a barrier to obtaining additional care services
Upon completion of The Family Caregiver Respite Program application, approved caregivers will work with our social worker to create a respite plan and explore other resources to support their caregiver role. Funds must be used within 12 months.
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Why Should I Seek Parkinsons Help For Caregivers
During the initial stages of Parkinson’s disease, most patients are self-sufficient and don’t have to make any changes to their lifestyle. However, Parkinson’s is a progressive disease, meaning the symptoms worsen over time. Sadly, although there are plenty of treatment options to help patients manage the condition, there is no way to cure Parkinson’s disease or prevent the symptoms from progressing.
Most people need full-time care when they reach the final stages of Parkinson’s disease. Your role as a caregiver will likely include washing, clothing and feeding your loved one , helping your loved one in and out of a wheelchair, administering medication doses, keeping track of medications and appointments, communicating with healthcare professionals, reporting symptoms and organizing bill payments and legal documents.
The responsibilities of a Parkinsons caregiver can feel overwhelming at times, and caregiver burnout is common in those who are new to the role. Your mental and physical health is a priority, too. Therefore, its important to seek help from the offset so that you have a support system in place.
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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Ethics Approval And Consent To Participate
Respondents provided informed consent for use of their data all data were aggregated and de-identified before receipt. Surveys were conducted in full accordance with the US Health Insurance Portability and Accountability Act of 1996. The study protocol was approved by the Western Institutional Review Board on 3 July 2019. All data were collected according to the requirements of ethics committee approval, including obtaining participants informed consent.
What Are Parkinsons Caregivers Support Groups
Parkinsons caregivers support groups are meetings designed for the family members and loved ones of people with Parkinsons disease . If you live with or care for someone with advanced PD, you may find support groups a great source of comfort and a chance to connect with other caregivers. If someone you love has been newly diagnosed with Parkinson’s, support groups can help you and your loved one come to terms with their condition, seek out information and know what to expect.
Here are some of the benefits of Parkinson disease support groups for caregivers:
- Connection: As a caregiver, you may not have many opportunities to socialize. Attending a Parkinsons caregivers support group is a chance to connect with others who understand your situation.
- Advice: Support groups arent just for emotional support they can also be great for practical advice, especially from others who have been where you are.
- Education: The more you can learn about your loved ones condition, the more you can help them. A support group should provide you with plenty of information and actionable advice both in terms of caring for someone with Parkinsons disease and making sure your own needs are met.
- Knowing you are not alone: Being a caregiver can be isolating at times. Simply knowing you’re not alone can help relieve depression and equip you with coping skills.
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Alzheimers And Dementia Caregiver Center
Here you can find resources that are the closest in proximity to you, staffed by trained professionals that can offer you information or support. The Alzheimers and Dementia Caregiver Center also provides separate support groups for those in early or late stages of dementia and Alzheimers disease.
Beginning Your Journey With Parkinsons
This series of five related web pages encourages new Parkinsons caregivers to build your knowledge base so you can be prepared for the special challenges of caring for someone with Parkinsons. They outline what you can expect with links to information sheets about symptoms, managing caregiver stress, recruiting or hiring help, completing legal documents, getting organized and tips for communicating with the healthcare team.
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Parkinsons Disease In The Elderly
The biggest risk factor for Parkinsons is age. It affects 1% of people above the age of 60. People suffering from this disease may find it difficult to walk and balance, and they may suffer from shaking hands or stiff muscles. There will be some mental and behavioral changes in them.
This disease affects multiple parts of the body and brain. It starts slowly and gets worse over time. The cause of this disease is still not known, but it is believed to be due to genetic and environmental factors.
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.
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Caring For Someone With Parkinson’s Disease
In this 1-hour teleconference, clinical social worker Elaine Book, addresses some of the challenges unique to PD caregiving, by stage of PD. She also talks about management of caregiving responsibilities and self-care. And there are some good tips about communication.
Sadly, only the first 12 minutes of the teleconference was recorded. Fortunately, staff at the Parkinson’s Community Outreach Program attended and took notes of the entire hour.
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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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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Hire Outside Help If You Need It
At some point, you may feel that both you and your support network are stretched thin. Youre tired, and you dont feel comfortable asking friends and family to pick up the slack.
But the yard really needs upkeep. And the house isnt as clean as it should be. And suddenly, it seems, youre totally out of food, as well as the energy to go grocery shopping.
Hiring a gardener, a house cleaner, or a grocery delivery service can help if this is an option for you. Your physical well-being will thank you for it.
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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.
Adapt To The Diagnosis
An essential first step is coming to terms with the diagnosis and understanding that Parkinsons disease is progressive. That means it changes over time, and your role changes with it.
Another important focus in the early days is to consider, along with your loved one, how to share the diagnosis with others so you can prioritize your needs. Dont shy away from being honest with your family.
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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.
When And Where Can I Find Help
Support is a central and protective element that helps overcome daily challenges. Start identifying the people around you and the healthcare system or community resources that can help you.
Ideally, you should start building your support system as soon as you learn about the diagnosis. You may not need help immediately but finding resources will be easier now than the day you become overwhelmed.
If you feel like you can no longer cope with the exhaustion, take a break and let others take care of your loved one. Not everything will be done according to your requirements and methods, but you must learn to let go of certain things so that your health does not suffer.
Asking for help may seem difficult at first but remember that it is neither a sign of weakness nor abandonment of your loved one.
Parkinson Québecs toll-free, bilingual and confidential information and referral line is open Monday to Friday, from 8:30 am to 4:30 pm.
LAppui also offers an information service for caregivers, 7 days a week, from 8:00 am to 8:00 pm. You can reach them by phone at 1 855 852-7784 or by email at [email protected]. A resource directory for caregivers is also available on their website.
Ask those around you for help
Involve family and friends by discussing care options if you are not available or in the case of an emergency.
Create a list of professionals and caregivers in your support system
Open a file at the CLSC
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