The emotional impact of Parkinson's
Receiving a Parkinson's 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 condition itself, rather than an emotional reaction to the news of a 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). Emotional distress, whatever the cause, can begin a sort of chain reaction, or spiral effect. For example, a patient showing initial signs of Parkinson's 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 Parkinson's must include the family. It is too easy to misinterpret emotional symptoms as physical manifestations of the condition.
Working two fronts
There are effective interventions and treatments for Parkinson's, and it is imperative that a patient and their family or caregivers realise 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 look at a list of indicators and symptoms of the emotional toll:
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 Parkinson's 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 – Parkinson's 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 condition 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 condition 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.
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 Parkinson's 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” 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 Parkinson's occur alongside the physical manifestations. However, you must realise that family members are not excluded from the emotional costs simply because they do not have Parkinson's. 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 Parkinson's 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.
Accept that Parkinson's 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 will only increase the emotional impact. Instead, it is far better to take the most obvious “next steps”:
Seeking therapy and possibly seeing a psychiatrist is a vital first step. The high rate of depression and anxiety in Parkinson's 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 around 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. Not only will this person benefit from therapy with a professional, but they should also have time to just go out and forget about the pressures and worries at home.
Find ways of daily group exercise. A patient with Parkinson's must be encouraged to keep moving every day. A healthy way for a family to overcome some emotional challenges of Parkinson's 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 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 condition when we recognise their individual and collective needs for extra support.”
Think of the Parkinson's 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 Parkinson's 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”.
With great thanks to Nessa Weinman, of Parkinson's Community LA for permission to reproduce this article