Creating A Treatment Plan
Sometimes It All Gets Too Much
Its easy to get frustrated and upset your parent isnt able to enjoy the things they once did. Its a difficult period of adjustment not just for your parent but for you also. You can dwell on the ifs if wed got them diagnosed earlier would their Parkinsons be as bad, if wed managed their symptoms better we could have prevented the progression but its just not the case.
Trevor sometimes believed hed been wrongly imprisoned and asked us to help him escape. It was awful. There will always be times that test you, that are painful for you and your family but the best you can do for your parent is be present and join them in their reality.
Take time to look after yourself too. If youre not coping talk to someone who can help you come to terms with your parents health issues. Asking for help is something more people should do theres no failure in admitting that you need support.
Parkinsons UK is the leading support and research charity for those living with Parkinsons across the UK. For more information on Parkinsons you can call their helpline 0808 800 0303 or email
Stability Of Coping Styles Over Time
Three years after baseline, the role of the different coping styles remained largely the same at first glance, though there was a range suggesting that some coping styles changed less than others. Using Humor as a coping style is the most stable of all, and is arguably a disposition that is deeply embedded in the personality . These findings thus seem to support a dispositional theory of coping and could be interpreted in line with the only previous longitudinal study that has examined coping in relation to progression of PD . According to this theory, a repertoire of coping strategies is developed and consolidated through early life and, like personality, it remains relatively stable from adulthood and onwards , although this would not hold for an empirical proof from a more differentiated perspective. Thus, there is evidence in the literature that if confronted with a new situation, such as the progression of a chronic disease, coping strategies that do not appear helpful any longer may be changed .
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Study Research And Learn
As a caregiver, you must educate yourself and understand what Parkinsons Disease is, and understand its symptoms. Having basic background knowledge will provide you with the foundational knowledge to provide the necessary care. A quick internet search will provide credible sites and scientific literature on PD.
The first step for learning to cope with caregiving roles is to know just exactly what you are in for. Not only will this help you be more compassionate and empathetic towards your loved ones struggle, but it also comes in handy when it comes to balancing your schedule, making time for their appointments, taking note of their medications, and setting aside the needed time to do whatever they need help with.
Managing Stress And Anxiety In Pd
Anxiety in PD may need to be treated with medication in order for a person to regain his/her quality of life. The medications used for anxiety are typically the same medications used for depression in PD and these include selective serotonin reuptake inhibitors such as sertraline and paroxetine and selective serotonin and norepinephrine reuptake inhibitors such as venlafaxine. Occasionally, a group of medications called benzodiazepines, can be used to treat the anxiety of PD.
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Reduce Your Stress Levels
Stress will only make Parkinsons disease much worse, which is why you must learn to manage your stress levels successfully. As a result, you can take greater control of your emotional, physical and mental health. Try to create a stress-free daily routine, and ensure you set time aside in your day to relax and unwind either alone or with your loved ones.
Managing Anger And Irritability In Parkinsons As A Caregiver
Informal caregivers particularly family members often play a significant role in helping and caring for loved ones with Parkinsons. Research has shown that caregivers are especially affected by caring for someone dealing with cognitive and mental dysfunctions from Parkinsons. These caregivers report higher caregiver burden and lower overall well-being and quality of life than caregivers of people with PD without significant cognitive impairment. Many caretakers of people with Parkinsons experience anxiety and depression.
The stress of caregiving is a common topic of conversation on MyParkinsonsTeam. One member wrote, My wife has Parkinsons. It is hard to deal with all her ups and downs. We are both exhausted.
Another member wrote about her husband with Parkinsons: His dementia is hard. He is emotional at times, angry at times, and is not aware where he is at times. One member said, My husband has Parkinsons, dementia, diabetes, and a bad heart. It is getting more and more difficult to give him his medications, as he gets very angry and does not take them.
Its important to remember that anger and irritability in people with Parkinsons is often a part of the disease. It is not your fault.
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Demographics Functional Limitations Cognitive Functioning And Pd Severity
Data on demographics included age and sex. Functional limitations and dependence on mobility devices were assessed dichotomously by a trained rater using a combination of interview and observation as part of the Housing Enabler instrument . This included the following 14 items: difficulty interpreting information visual impairment blindness loss of hearing poor balance incoordination limitations of stamina difficulty in moving head reduced upper extremity function reduced fine motor skills loss of upper extremity function reduced spine and/or lower extremity function dependence on walking aids dependence on wheelchair. Global cognitive functioning was clinically assessed using the Montreal Cognitive Assessment . PD severity was clinically assessed according to Hoehn and Yahr . The HY includes five stages: HY I HY II HY III HY IV and HY V . For analyses of coping styles in relation to PD severity, we defined three different HY subgroups with respect to their courses of disease: those that remain at stages HY 12 from baseline to follow-up , those that decline from HY stages 12 at baseline to HY 3 or worse at follow-up , and those that are already at HY 35 at baseline .
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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Identifying And Treating Depression
Between 17 to 50 percent of patients with Parkinsons have depression. Depression and Parkinsons have so many similar-looking symptoms that it is hard to tell the difference between them.
Its important to note, however, that depression is not a reaction to the disability. Rather, it seems to be related to the degeneration of specific neurons in Parkinsons disease itself.
Typical symptoms include:
Use Assistive Devices For Self
Over time, Parkinsons can make your self-care tasks difficult and so you should get ready for that.
For example, your body will be stiffed in the morning and therefore getting started your day will be slower than normal. Performing tasks like taking a shower, getting dressed, and taking shoes on, will take more time than usual.
Hand tremor is another problem that you will experience time to time. It is especially problematic in eating food. Similarly, Parkinsons can also affect the way you walk. Your walk will be slower than normal and sometimes stepping forward can be hard.
Using assistive devices can help you to perform these self-care tasks easily. There are many products available on the market that are specially designed for Parkinsons patients. Some of the most effective products that you may need include tremor spoon, weighted utensils, and walking stick.
Disclaimer: The information shared here should not be taken as medical advice. The opinions presented here are not intended to treat any health conditions. For your specific medical problem, consult with your health care provider.
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Emotional Aspects Of Parkinsons
It is important to examine the various emotions that a person living with Parkinsons disease can undergo in living daily with the condition. The emotional factors that affect your loved one can be both internal and external. Some changes that occur can be directly due to the disease process, which causes an alteration in brain chemistry. Other emotional changes are influenced by external factors and the persons reaction to those factors.
Having a chronic neurological condition is stressful, and people react to stress in different ways. Some see it as a challenge and others see it as a problem. Parkinsons disease has a significant impact on family and friends and can create many emotions. These emotions include:
DENIAL/DISBELIEF
Denial, a feeling of shock and disbelief is a common reaction, especially at the time of initial diagnosis and early in the disease process. Since PD can have a subtle onset before an actual diagnosis is made, people often attribute symptoms to other causes. People also sometimes report a general feeling of uneasiness or an anxious, depressed feeling prior to diagnosis. When a diagnosis is finally made, it can come partially as a relief, but there is often shock and fear of the future.
DEPRESSION
Depression is one of the most common reactions to Parkinsons disease, occurring in roughly 50 percent of clients. Some doctors feel that depression may actually be part of the disease process. PD medications can also cause depression in some patients.
Off Periods And Medication Effects
One of the complications of PD is that medication effects can wear off throughout the day, leading to a re-emergence of PD symptoms, often described as off periods.
The key to managing the off periods often lies in timing. Many people who have PD can observe trends in physical function throughout the day. You can keep track of your symptomatic changes throughout the day with a diary, and work with your healthcare provider to adjust your medication schedule for optimal function during the times when you need it most.
The medications that are used to treat PD can produce physical side effects as well. You might begin to experience writhing movements and other involuntary movements that are often described as dyskinesias. Often, medication adjustments can help reduce dyskinesias.
Many people who have PD find that getting regular exercise can help in regaining some physical control. Exercises such as dancing, , swimming, and other challenging skill-based physical activity can help build better motor controleven if you start in your 70s or later.
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Coping With Parkinsons Disease: Emotional Challenges
Coping with Parkinsons disease is challenging for many reasons. Alongside the physical symptoms of PD and the changes your body goes through, the diagnosis of a chronic, progressive illness can take its toll emotionally. There is also a clear link between Parkinsons disease and mental health issues like depression and anxiety not to mention sleep problems. For all of these reasons, a reliable support system is crucial during Parkinsons disease, but you may also wish to learn some coping strategies of your own. Here are some tips for coping with Parkinsons disease.
Taking Care Of Yourself Emotionally
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Activities Of Daily Living
There are many things a person does every day without even thinking about it such as bathing, brushing teeth, walking, turning in bed, signing checks, cutting food. When a person is diagnosed with Parkinson’s, it can eventually make all of these things more difficult. The following tips are meant to be helpful and raise awareness of adjusting to some of the difficulties with PD.
Falling
- Remove throw rugs and low-lying obstacles from pathways inside and outside your home.
- Use a cane when necessary.
- Avoid using stepladders or stools to reach high objects.
- Stop walking or sit down if you feel dizzy.
- Install handrails, especially along stairways.
- Slow down when you feel yourself in a hurry.
- Before rising from your bed or bath, pause for a moment in a sitting position.
Sensory complaints
- Stretch every day, especially before exercising.
- Exercise daily to build stamina.
- Warm baths and regular massage will help relax tired muscles.
- When your hands or feet get cold, wear gloves or warm socks.
- Don’t overdo physical activities know your limits and stay within them.
Turning in bed
Sleep problems
Dressing
Hygiene
Walking
Swallowing
Freezing
Tremor
- Perform difficult tasks when you feel well and when your medication is working effectively.
- Relax. Sit down from time to time, relax your arms and shoulders, and take deep breaths.
- Get a regular massage.
- Ask your physical therapist or doctor to recommend a stretching and exercise program.
- Avoid caffeine and alcohol.
- Get plenty of rest.
Speech
How To Cope With Parkinsons As A Caregiver
Research from the National Alliance for Caregiving shows that when caregivers are asked what they want, the majority respond saying they want information about coping with being a caregiver. This information takes several forms, including knowledge about Parkinsons disease , comfort with the caregiving role and managing stress.
The following tips can help you cope:
- Forgive yourself for not being perfect. From the day your loved one was diagnosed your world has been turned upside down. Your daily routine will change, as may your personal standards of housekeeping and other tasks. Accept your own humanity.
- Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.
- Determine your limits. What is your comfort level providing care? Some caregivers feel they can provide care at home as long as others in the family can put up with the disruptions.
- Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.
- Seek out joy in your relationship with your loved one. Your hands-on duties, such as dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
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Complex Parkinson’s Disease And Palliative Care
Complex Parkinson’s disease is defined as the stage when treatment is unable to consistently control symptoms, or the person has developed uncontrollable jerky movements .
These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, under the supervision of a doctor with a specialist interest in Parkinson’s disease.
As Parkinson’s disease progresses, you’ll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.
When there’s no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making the end of a person’s life as comfortable as possible.
This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family.
Palliative care can be provided at home or in a hospice, residential home or hospital.
You may want to consider talking to your family and care team in advance about where you’d like to be treated and what care you wish to receive.