Caregiving And Parkinson’s: Laying The Groundwork For The Road Ahead
This 64-minute webinar focuses on laying the groundwork for your care partnership within the first few years of a Parkinsons diagnosis. Skills and resources helpful to care partners in early Parkinsons disease are discussed, as well as practical suggestions, solutions and lessons learned from a Parkinsons disease nurse specialist and a care partner.
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.
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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Physical Therapy For Balance And Gait Problems
Despite altering the dosage of existing Parkinsons medications or adding new medications people with advanced Parkinsons may still have difficulty walking or keeping their balance. For this reason, movement can be a vital part of therapy.
One study showed that exercise and movement training improved balance in people with Parkinsons. Another study on people with mild to moderate Parkinsons showed that both resistance exercises and tai chi can lower the risk of falling.
Ask your doctor which exercises might be appropriate for your loved ones level of symptoms.
|Are you caring for someone with Parkinsons disease?Clickor advice in the comments below.|
Coping With Parkinson’s Disease: A Guide For Caregivers
Parkinson’s Disease is a progressive disorder of the nervous system that affects movement. There is currently no cure for PD, though research is ongoing.
A Disease with Many Faces
Patients with PD and their caregivers face special challenges due to the variable nature of the disease. According to the National Parkinson Foundation, the incidence and severity of the disease can vary from day to day, and even from one time of day to another.
Talking openly and honestly together will help you fulfill your caregiving responsibilities.
This variability can be a source of confusion and frustration for PD patients and their caregivers, and it calls for ample amounts of patience, understanding, and adaptability.
In addition to the ever-changing nature of the disease, here are some other unique challenges facing caregivers for PD patients:
- complicated medical regimens
- underestimation of the severity of symptoms by family and friends
- increasing isolation for patient and caregiver as disease progresses
- difficulty with communication as disease progresses
Help for Caregivers
Tips and Techniques to Aid in Caregiving
In addition to finding a strong support system, there are a number of other things you can do to provide good care for your loved one. Here are a few suggestions:
1) Educate yourself about PD.
2) Be proactive about partnering with medical professionals to aid in treatment.
3) Be a good observer.
4) Handle difficult decisions.
5) Allow your loved one to do what he or she can.
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Team Training Guest Faculty
Each training may have different guest faculty and will feature speakers who are specialists in different areas or disciplines for the Parkinsons care team. You can find the guest speakers on the agenda for each training program.
This training has given me the momentum and framework to go back and make immediate changes in the clinic. This week has increased my enthusiasm to improve our interdisciplinary care and expand our programs.
Care For The Caregiver
Research has shown that as PD progresses, the strain on the care partner or caregiver also increases. While the caregiver is generally focused on providing assistance and support to the person with Parkinsons disease , the caregiver also needs support. Taking time away from caregiving duties, maintaining social connections, and asking for help from others are important steps to help the caregiver cope with their additional responsibilities and stress.1,4
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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.
Caregiving For People Living With Parkinsons
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following : Get prepared, Take care of yourself, Get help , Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.
Preparing for caregiving starts with education. Reading this fact sheet is a good start. More resources are available to you in theResources section of this fact sheet. Early Parkinsonâs 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.
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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.
Managing Advanced Parkinsons Professional Caregiver Training Notes
There was a training program called TULIPS, designed for professional caregivers who have clients with Parkinsons Disease. The program is being revised and is no longer available. But we located an old copy.
Brain Support Network volunteer Denise Dagan recently looked over the TULIPS training for Managing Advanced Parkinsons Disease as the diseases in our community are more similar to advanced PD than early or middle-stage PD.
Here are Denises notes from the training. Interspersed in brackets are a few comments from Denise, whose father had Lewy Body Dementia.
Managing Advanced Parkinsons DiseaseTULIPS: training for better Parkinsons careStruthers Parkinsons Center, Minneapolis, MN
Create back up plans for what to do: if you have an urgent errand if you need home maintenance or repair if you become ill
Section 2 Acknowledging Changing Roles and Relationships
Maintain intimacy through touch, conversation, shared times and humor. When communicating becomes difficult for both speaker and listener, set up hand signals or other gestures to reply to yes/no questions. A speech-language pathologist may provide additional suggestions to enhance communication.
Section 3 Deciding Where to Live
Section 4 Caregiver Self Care
Section 5 Assisting Movement
Section 6 Providing Mealtime Assistance
Section 9 Skin Care
Section 10 If Someone Falls
Section 11 Thinking changes
Section 12 Ideas and Suggestions for Activities
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Get Professional Help With Elderly Care Services
Part of the caregiving journey is recognising when your loved one requires professional help to manage the symptoms and lifestyle changes that come with Parkinsons. At NTUC Health, we help clients with Parkinsons and their caregivers enjoy better quality of life through a wide range of elderly caregiving services.
With our Home Care services, your loved one can benefit from personal care, therapy, nursing and medical services in the comfort of home. We can also help your loved one with personal hygiene, medical escort, diaper changes and other daily care needs.
Did you know that our Home Care nurses are accredited by the Agency of Integrated Care to conduct Disability Assessments? Find out more about how we can help you apply for financial grants like CareShield Life and the Home Caregiving Grant with a Disability Assessment.
Rehabilitation and physiotherapy at our Day Rehab Centres can help with managing early motor symptoms of Parkinsons.
Day Centre for Seniors
At our Day Centres for Seniors, seniors with Parkinsons can receive help with therapy aimed at managing symptoms such as stiffness, impaired balance, slowed movement and other neurological symptoms. They can also benefit from planned group activities in a conducive and safe environment, so that you, the caregiver, can have peace of mind throughout the day.
Client Profile: Senior Day Care Client with Parkinsons
*Example of how we support clients with Parkinsons.
What Type Of Caregivers Can I Expect From The Sapphire Parkinsons Care Program
A medical or non-medical caregiver that has received specialized training and education in the symptoms and characteristics of Parkinsons Disease while learning techniques to specifically meet the needs of those with Parkinsons. Before a caregiver is labeled SPC they must pass a written exam and perform a laboratory competency test to ensure you are receiving a caregiver who is qualified to help those with Parkinsons.*
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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.
Build A Good Relationship
Caring for a loved one with Parkinsons can place a great deal of stress on your relationship. A person you love is changing both physically and mentally, and both of you are needing to adapt.
The Michael J. Fox Foundation recommends keeping communication as open as possible and being flexible with your changing roles. Be aware that some changes, such as new apathy or irritability, is not directed personally at you.
If both you and your loved one are willing, consider consulting a therapist together. You can work through any of the anger, denial, or upset you are feeling, and find ways to keep your relationship healthy and loving.
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Order Karl Sterlings First Book: Parkinsons Regeneration Training: Neuropsychomotor Rehabilitation: An Integrative And Fitness
Available in paperback and Kindle formats on Amazon at: to order
The Parkinsons Regeneration Training Audio Book is available on Audible: to order
While Parkinsons Disease can be debilitating, there is plenty of compelling data to show that exercise is one of the best ways of managing PD symptoms. Studies show that regular exercise can improve gait, grip, balance, stability, strength, and motor control in the PD client.
In addition, this improvement in movement and mobility helps to reduce falls, injuries, and various other complications of the disease in the PD client.
Learn and gain a solid understanding of:
- What is Parkinsons Disease ?
- Who gets Parkinsons Disease?
- What are the symptoms of PD?
- How does PD affect strength, movement, mobility, stability, flexibility, cognitive function, posture, and overall functionality?
- What can people with PD be doing to manage disease symptoms and reduce or eliminate falls and injury?
- How can caregivers, home health aides, and others to help the person with PD?
- Learn how the brain can be retrained to improve and help restore neuromuscular communication, cognitive function, and cognitive function during movement
Through hands on application, learn about specialized tools and optimal exercises that will help the person with PD to improve:
My Parkinson’s Story: The Caregiver
This 12-minute video alternates between an interview with a man and his wife and doctors. The man and his wife share how the challenges his Parkinson’s symptoms have imposed on them, both individually and as a couple. The doctors validate this experience and recommend couples get emotional support and counseling to facilitate communication and encourage getting outside help to ease the caregiving burden, relieve stress and recharge.
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Surgery And Deep Brain Stimulation
Deep brain stimulation is a treatment for Parkinsonâs disease that uses an implantable pacemaker-like device to deliver electrical pulses to parts of the brain involved in movement. The DBS system consists of leads precisely inserted into a specific brain target, the neurostimulator implanted in the chest, and extension wires that connect the leads to the neurostimulator. Though implantation of the system requires a neurosurgical procedure, the treatment itself consists of long-term electrical stimulation. Advantages of DBS include its ability to reduce the high doses of medications , its adjustability , and its reversibility DBS was approved by the Food and Drug Administration as a treatment for PD in 2002 and according to Medtronic , more than 80,000 patients have undergone DBS surgery worldwide.
Typical candidates are those who have motor fluctuations or periods of âoffâ time with troublesome symptoms alternating with periods of âonâ time with good symptom control, and also with possible periods of excessive movement .
Not all patients with Parkinsonâs disease are good candidates for treatment with DBS. Approximately 10â20% of patients considered for possible treatment with DBS include those:
The Progression Of Caregiving In Pd
The role of the caregiver in Parkinsons disease is ever changing, with the demands increasing as the disease progresses and symptoms worsen. In the early stages of the disease, caregivers are helping their loved one cope with the diagnosis and learning how to manage the medications. Caregivers may encourage and support their loved one in completing daily physical therapy exercises and assist them due to their slowness in movement.4
As an individuals disease progresses into mid-stage, the caregivers duties and burden significantly increase. Fatigue and excessive daytime sleepiness may derail daily plans, and frustrations around communication increase.1
In the late stage of PD, caregivers face significant responsibility and challenges. Their loved one may have significant mobility impairments, and caregivers often provide much hands-on assistance. Many people with late stage PD experience freezing episodes, sudden but temporary inability to move. Freezing episodes can contribute to falls, and fall prevention is important in the late stage of PD. Many assistive devices are available to help people with late stage PD with eating, dressing, and walking. Late stage PD may also mean changes to the way a person thinks, including forgetfulness, confusion, and sometimes, dementia. It is important to remember that not everyone experiences all the symptoms of PD, and the role of the caregiver will also vary based on the needs of their loved one.1
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Impact Of Parkinsons Disease
Parkinsons disease is a journey which affects each individual differently. The first symptom is often the shaking or tremor of a limb, especially when the body is at rest. Some may experience tremor on one side of the body or hand. Others may experience tremors on their feet and face. Not everyone with Parkinsons has a tremor. It may take years before there is any disability or significant limitation of daily activities. Other characteristic symptoms of the disease include:
- Rigidity or stiffness of the limbs and torso
- Slow movement or an inability to move
- Prone to falls which may result in fractures
- Slight change in sleep pattern
- Difficulty in swallowing which may need to aspiration pneumonia
- Increasingly smaller, cramped handwriting
How Caregivers Can Help Themselves
The Parkinsons Foundation acknowledges that caregivers need to also take care of themselves. Parkinsons disease caregivers can contact the Parkinsons Foundation Helpline to find information about local support groups and resources by calling 800-473-4636.
Caregivers can also build a self-care plan. Having a plan can help you set aside time to take care of yourself. Remember to include:
- Physical self-care Getting enough movement and rest
- Emotional self-care Working with a mental health professional or writing in a journal
- Spiritual self-care Engaging in prayer, meditation, or gratitude practice
- Sensory self-care Activating the five senses by focusing on your surroundings
- Intellectual self-care Stimulating the brain with art, music, or reading
- Adventurous self-care Trying new activities separate from the daily routine
You are more likely to be able to provide high-quality care for others if youre taking care of yourself as well.
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