By Nessa Weinman
Take a deep breath in, hold, and let it out. Simple exercises and talking with others can help with the intense emotional feelings such as depression. anger. fear and isolation from friends and family. Now take in another deep breath in, hold and let it out with a big sigh. These are just some feelings that may come with news of a Parkinson’s Disease diagnosis or even many year’s after. It’s not unusual for patients to deny their diagnosis, often missing medical visits, refusing to take medications, and even withholding information from family members.
These are very normal human reactions that express the fear of being ill, and the hope that a diagnosis was incorrect.
The emotional and psychological impact of Parkinson’s on the patient, family, and caregiver, is profound. This article will take an in-depth look at the emotional impact of the disease and identify therapies that have been proven to be effective. Everybody is different so there are a range of therapies and with some practice, you will find what works best for you.
The transition from full health to the limitations that come with illness is a difficult journey. Our self-image is altered, and we are likely to question our value to ourselves and others. Nobody wants a neuro-degenerative disease, but there are many treatments available and researchers everywhere are working hard to find even better treatments and a cure.
With good tools, hard work and talking to others, these emotions eventually subside. Deep breath, hold, and let it out slowly. Confronting a new reality takes time and with proper help and guidance, you can begin to make changes that will enhance your ability to live with Parkinson’s and still have a good quality of life.
Let's begin with some basic details about PD and how it manifests as an emotional issue.
The Patient and the Emotions of PD
Parkinson’s Disease, at this moment in time, has no cure, and most patients grow progressively worse over time. Receiving a PD diagnosis, or learning that a beloved family member has it, often triggers an immediate reaction of sadness, or sorrow, in addition to helplessness and even anger.
Some of these emotions may result from the disease itself, rather than an emotional reaction to the news of a PD diagnosis.
“More than 60 percent of people with Parkinson’s experience depression. In fact, you may have experienced it as one of the first symptoms of Parkinson’s, long before you were diagnosed.” (Parkinson’s Association 2014). http://www.parkinsonsassociation.org/about-parkinsons-disease/depression
Emotional distress, whatever the cause, can begin a sort of chain reaction, or spiral effect. For example, a patient showing initial signs of PD is diagnosed with the condition. In the next few weeks sleep disorders appear. Cognition seems slow and fuzzy; concentration declines, and apathy increases.
What this illustrates is that any treatment for PD must include the family. It is too easy to misinterpret emotional symptoms as physical manifestations of the disease.
Working two fronts
There are effective interventions and treatments for PD, and it is imperative that a patient and their family or caregivers realize that any approach must have two "fronts". It must strive to address the actual progression of the disease, as well as the emotional and mental impact it has on everyone involved.
Let’s take take a look at a list of indicators and symptoms of the emotional toll of PD:
· Depression - According to the Michael J. Fox Foundation "at least half of all Parkinson’s patients suffer from clinical depression at some point."
· Anxiety - The intensity of PD forces many patients to worry about issues far outside of their control. This leads to anxiety. Patients worry about being a burden, about taking falls or being unable to move, they worry about loss of memory, and so much more.
· Apathy - PD is often accompanied by a seeming sense of apathy, making it appear that the patient does not care or is indifferent about many things. Often this is a very serious misunderstanding on the part of the family or caregiver as the appearance of “laziness” is often due to the impact of the disease and not a controlled response.
· Insomnia - Many patients find sleep very challenging and are often up at all hours of the night and morning. Moving in bed is more difficult, getting comfortable takes effort. However, chemical changes in the brain can also affect the ability to enjoy normal sleep as well. This is a big problem because if you don’t sleep well it’s likely to worsen your Parkinson’s symptoms the next day.
· Hallucinations – For some, chemical or neurological changes can cause hallucinations. First talk to your neurologist and there may be a change of medication recommended. Complications such as prolonged insomnia, fatigue, and progression of the disease may also lead to hallucinations.
· Mood swings - The gradual loss of physical independence can force some to become increasingly reliant on others. This can create irritability, sadness, anger, and may manifest in mood swings due to feelings of guilt or frustration. Fear is also a common reaction, and "the patient may slowly become more dependent, fearful, indecisive and passive. They may talk less often, withdraw from family and friends and become less active even when encouraged to move about. They may feel lonely as they isolate themselves and as friends become more distant." (APDAA, 2014)
· Slow thinking and/or short-term memory loss - Depression is often a major factor with the slowing of thought and memory impairment. However, it is only a contributor and it is the degenerative nature of PD that leads to slower and hazier thinking as well as memory loss.
· Fatigue - This is a physical symptom but also an emotional one. In his book "Brain and Behavior: Coping with Parkinson's disease" author Dr. Joseph Friedman identified fatigue as one of the biggest struggles for more than half of the patients interviewed. This fatigue was difficult to measure or track and led many patients to lose interest or motivation in everything from routine tasks to beloved hobbies.”
These non-motor symptoms of PD occur alongside the physical manifestations. However, you must realize that family members are not excluded from the emotional costs simply because they do not have PD.
Family members, serving as caregivers also face a tremendous amount of emotional strain. They may become frustrated, depressed or anxious, as well as fatigued, angry, overwhelmed, and deeply saddened.
Family members watch as a loved one becomes more dependent on others, losing interest in things that once brought joy. They may fight, or argue with the patient to keep up healthy routines and exercise plans. Patience is very important as coping can take time.
Clearly, navigating through the emotional challenges of PD is something that no patient or family should do without proper resources, information, and support. In fact, the same list of experts and professionals as those offering treatment and therapy may be a first line resource.
Getting help
Accept that PD absorbs a lot of your physical and mental energy, but you can find a path to family wellness. It is never easy to accept just how much is going to be asked of everyone in the family, but trying to resist help only increase the emotional impact. Instead, it is far better to take the most obvious "next steps":
·Find ways of daily group exercise. A patient with PD must be encouraged to keep moving every day. A healthy way for a family to overcome some emotional challenges of PD is to exercise together every day or on a regular basis. This allows a caregiver to get a break from being the "pusher" if the patient is unwilling to exercise, plus it will allow the entire family to interact in a healthy and enjoyable way.
"Parkinson’s disease requires a great deal of energy, and can greatly increase one’s stress level. Both the patient with Parkinson’s as well as their family members will more effectively manage the disease when we recognize their individual and collective needs for extra support."
Think of the PD diagnosis as something that requires a team effort. Every single member of the team is important to their overall success by focusing on the importance of wellness and emotional health for the patient and the family.
You may be unable to halt PD in its path, but you can prevent it from wreaking emotional havoc in the lives of those you love. Work with professionals as well as with each other, and you will find hope and a “new normal”.
Works Cited
American Parkinson's Disease Association Arizona. The Emotional Impact of Parkinson's Disease.APDAArizona.org. 2014. http://apdaarizona.org/parkinsons-articles-videos/the-emotional-impact-of-parkinsons-disease/
Michael J. Fox Foundation. Anxiety and Depression with Parkinson's Disease. MichaelJFox.org. 2014. http://www3.parkinson.org/site/DocServer/What_You_and_Your_Family_Should.pdf?docID=186
These are very normal human reactions that express the fear of being ill, and the hope that a diagnosis was incorrect.
The emotional and psychological impact of Parkinson’s on the patient, family, and caregiver, is profound. This article will take an in-depth look at the emotional impact of the disease and identify therapies that have been proven to be effective. Everybody is different so there are a range of therapies and with some practice, you will find what works best for you.
The transition from full health to the limitations that come with illness is a difficult journey. Our self-image is altered, and we are likely to question our value to ourselves and others. Nobody wants a neuro-degenerative disease, but there are many treatments available and researchers everywhere are working hard to find even better treatments and a cure.
With good tools, hard work and talking to others, these emotions eventually subside. Deep breath, hold, and let it out slowly. Confronting a new reality takes time and with proper help and guidance, you can begin to make changes that will enhance your ability to live with Parkinson’s and still have a good quality of life.
Let's begin with some basic details about PD and how it manifests as an emotional issue.
The Patient and the Emotions of PD
Parkinson’s Disease, at this moment in time, has no cure, and most patients grow progressively worse over time. Receiving a PD diagnosis, or learning that a beloved family member has it, often triggers an immediate reaction of sadness, or sorrow, in addition to helplessness and even anger.
Some of these emotions may result from the disease itself, rather than an emotional reaction to the news of a PD diagnosis.
“More than 60 percent of people with Parkinson’s experience depression. In fact, you may have experienced it as one of the first symptoms of Parkinson’s, long before you were diagnosed.” (Parkinson’s Association 2014). http://www.parkinsonsassociation.org/about-parkinsons-disease/depression
Emotional distress, whatever the cause, can begin a sort of chain reaction, or spiral effect. For example, a patient showing initial signs of PD is diagnosed with the condition. In the next few weeks sleep disorders appear. Cognition seems slow and fuzzy; concentration declines, and apathy increases.
What this illustrates is that any treatment for PD must include the family. It is too easy to misinterpret emotional symptoms as physical manifestations of the disease.
Working two fronts
There are effective interventions and treatments for PD, and it is imperative that a patient and their family or caregivers realize that any approach must have two "fronts". It must strive to address the actual progression of the disease, as well as the emotional and mental impact it has on everyone involved.
Let’s take take a look at a list of indicators and symptoms of the emotional toll of PD:
· Depression - According to the Michael J. Fox Foundation "at least half of all Parkinson’s patients suffer from clinical depression at some point."
· Anxiety - The intensity of PD forces many patients to worry about issues far outside of their control. This leads to anxiety. Patients worry about being a burden, about taking falls or being unable to move, they worry about loss of memory, and so much more.
· Apathy - PD is often accompanied by a seeming sense of apathy, making it appear that the patient does not care or is indifferent about many things. Often this is a very serious misunderstanding on the part of the family or caregiver as the appearance of “laziness” is often due to the impact of the disease and not a controlled response.
· Insomnia - Many patients find sleep very challenging and are often up at all hours of the night and morning. Moving in bed is more difficult, getting comfortable takes effort. However, chemical changes in the brain can also affect the ability to enjoy normal sleep as well. This is a big problem because if you don’t sleep well it’s likely to worsen your Parkinson’s symptoms the next day.
· Hallucinations – For some, chemical or neurological changes can cause hallucinations. First talk to your neurologist and there may be a change of medication recommended. Complications such as prolonged insomnia, fatigue, and progression of the disease may also lead to hallucinations.
· Mood swings - The gradual loss of physical independence can force some to become increasingly reliant on others. This can create irritability, sadness, anger, and may manifest in mood swings due to feelings of guilt or frustration. Fear is also a common reaction, and "the patient may slowly become more dependent, fearful, indecisive and passive. They may talk less often, withdraw from family and friends and become less active even when encouraged to move about. They may feel lonely as they isolate themselves and as friends become more distant." (APDAA, 2014)
· Slow thinking and/or short-term memory loss - Depression is often a major factor with the slowing of thought and memory impairment. However, it is only a contributor and it is the degenerative nature of PD that leads to slower and hazier thinking as well as memory loss.
· Fatigue - This is a physical symptom but also an emotional one. In his book "Brain and Behavior: Coping with Parkinson's disease" author Dr. Joseph Friedman identified fatigue as one of the biggest struggles for more than half of the patients interviewed. This fatigue was difficult to measure or track and led many patients to lose interest or motivation in everything from routine tasks to beloved hobbies.”
These non-motor symptoms of PD occur alongside the physical manifestations. However, you must realize that family members are not excluded from the emotional costs simply because they do not have PD.
Family members, serving as caregivers also face a tremendous amount of emotional strain. They may become frustrated, depressed or anxious, as well as fatigued, angry, overwhelmed, and deeply saddened.
Family members watch as a loved one becomes more dependent on others, losing interest in things that once brought joy. They may fight, or argue with the patient to keep up healthy routines and exercise plans. Patience is very important as coping can take time.
Clearly, navigating through the emotional challenges of PD is something that no patient or family should do without proper resources, information, and support. In fact, the same list of experts and professionals as those offering treatment and therapy may be a first line resource.
Getting help
Accept that PD absorbs a lot of your physical and mental energy, but you can find a path to family wellness. It is never easy to accept just how much is going to be asked of everyone in the family, but trying to resist help only increase the emotional impact. Instead, it is far better to take the most obvious "next steps":
- Take therapy and possibly seeing a psychiatrist for the patient is a vital first step. The high rate of depression and anxiety in PD patients means that antidepressant medications may be an important part of the adjustment process and a key to keeping the patient's quality of life as high as possible.
- ·Additionally, the common problems with poor sleep can be addressed through medication regimens too, and this is also going to ensure a much better outcome for the patient and family.
- ·A licensed mental health professional can assist in dealing with many problems. Though individual therapy is highly recommended, remember too that family therapy is one way to ensure that communication is clear, no misunderstandings are occurring, and that feelings are vented in a safe and productive environment.
- ·Finding support groups is another next step. Both the patient and their family or caregivers need to be able to overcome frustrations, confusion, social isolation, and depression, and there is nothing like a support group full of "others" going through the same experiences to reduce stress, create wellbeing, and offer encouraging words and advice.
- ·Create opportunities for care breaks. Respite from round the clock care is essential to any caregiver's wellbeing. A household or family in which one person serves as the primary caregiver must be organized enough to give that person some "down time" on a regular basis.
·Find ways of daily group exercise. A patient with PD must be encouraged to keep moving every day. A healthy way for a family to overcome some emotional challenges of PD is to exercise together every day or on a regular basis. This allows a caregiver to get a break from being the "pusher" if the patient is unwilling to exercise, plus it will allow the entire family to interact in a healthy and enjoyable way.
"Parkinson’s disease requires a great deal of energy, and can greatly increase one’s stress level. Both the patient with Parkinson’s as well as their family members will more effectively manage the disease when we recognize their individual and collective needs for extra support."
Think of the PD diagnosis as something that requires a team effort. Every single member of the team is important to their overall success by focusing on the importance of wellness and emotional health for the patient and the family.
You may be unable to halt PD in its path, but you can prevent it from wreaking emotional havoc in the lives of those you love. Work with professionals as well as with each other, and you will find hope and a “new normal”.
Works Cited
American Parkinson's Disease Association Arizona. The Emotional Impact of Parkinson's Disease.APDAArizona.org. 2014. http://apdaarizona.org/parkinsons-articles-videos/the-emotional-impact-of-parkinsons-disease/
Michael J. Fox Foundation. Anxiety and Depression with Parkinson's Disease. MichaelJFox.org. 2014. http://www3.parkinson.org/site/DocServer/What_You_and_Your_Family_Should.pdf?docID=186
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