Coping With Parkinson's Disease

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Parkinson’s disease is a progressive health condition that has no cure. Fortunately, several treatment options can help manage the symptoms of this condition, often for a long time. In fact, the average life expectancy of a person with Parkinson’s disease is approximately the same as for people who do not have this condition.

However, the symptoms of Parkinson’s disease can make daily living activities difficult and require several stages of adjustment. While everyone’s experience of this condition is unique, these strategies may help people living with Parkinson’s disease cope physically, emotionally, and socially.

Emotional

Being diagnosed with Parkinson’s disease can be distressing for you and your loved ones. You may experience a range of emotions, including shock, disbelief, denial, anger, sorrow, frustration, and fear.

These are some strategies that can help you cope emotionally with the diagnosis as well as the changes in your physical and cognitive abilities caused by Parkinson’s disease:

  • Educate yourself about the condition: Learning about the condition can help you prepare yourself mentally for the stages ahead. It can also help you take an active role in your health so that you can work with your healthcare providers and caregivers to optimize your treatment.
  • Spend time with family and friends: Sharing your feelings with your loved ones, spending time with them, communicating what you need, and accepting their support can help you cope with the condition.
  • Set realistic expectations: Setting realistic expectations and focusing on your abilities rather than your disabilities can give you a sense of control and help you cope with the distress and frustration you may experience as daily activities become challenging.
  • Seek therapy: Therapy can help you work through the emotions you’re feeling and accept the diagnosis. It can also help you confront the prospect of death and help you resolve any relationship conflicts.

These strategies can also help your loved ones cope with your diagnosis and your condition. 

Physical

Parkinson’s disease is a movement disorder characterized by tremors, stiff muscles, and slow movements. These symptoms can make routine activities like bathing, grooming, dressing, using the toilet, eating, walking, and driving difficult. They can also increase your risk of falling or injuring yourself.

These are some steps you can take to cope with the physical symptoms of this condition:

  • Stay active: Be as mentally and physically active as possible. Exercise as much as you can to help improve your strength, balance, and flexibility. Engage with mentally stimulating activities to help prevent cognitive decline.
  • Take your time with daily tasks: Routine daily tasks can take longer than they used to, so plan ahead and give yourself enough time to complete them. If you’re on medication, it can help to wait until your medication is working well before you attempt challenging activities. 
  • Simplify dressing: Adaptive clothing tools such as zipper pulls, button aids, long-handled shoehorns, sock aids, and dressing sticks can make dressing easier. It may also be helpful to opt for elasticated or velcro closures on your clothes and shoes instead of buttons and zippers. You can sit down while bathing, grooming, or getting dressed, instead of standing. As the condition progresses, you may need someone to help you with these tasks. 
  • Use a mobility aid, if needed: If you have difficulty with coordination, balance, or movement, your healthcare provider might suggest using a mobility aid such as a cane, walker, or wheelchair. Using it regularly can help provide the support you need and prevent falls.
  • Make your home more accessible: As movement becomes difficult, it can be helpful to keep electrical switches and daily use items within reach, install a railing on your bed for support and use chairs and toilet seats that are raised.
  • Take steps to prevent falls: You can take steps to prevent falls, such as clearing the floor of rugs and obstacles, installing grab bars and anti-skid mats in the bathroom, keeping lights on at night, avoiding stairs, wearing footwear with a good grip, and avoiding loose clothing that could trip you up.

A physical or occupational therapist can evaluate your condition and suggest steps to improve your mobility, reduce your risk of falling, and help you maintain your independence for as long as possible.

Social

As Parkinson’s disease progresses, it can affect your daily routine and your ability to work, manage your home, and maintain a social life. It can be difficult to adjust to your limitations and accept these changes to your lifestyle. 

The support and assistance of your friends and family can go a long way in helping you accept and cope with your new reality. It can also be helpful to seek out community resources and support groups. Support groups, in particular, can offer valuable information, experience, and advice that can help you and your loved ones with a wide range of issues.

Resources & Organizations

These are some organizations that offer resources and support for people with Parkinson’s disease:

Caregiving & Helping Others

Parkinson’s disease can be emotionally difficult for caregivers, but it also has its rewards. 

Here are some strategies that can be helpful while caring for a person with Parkinson’s disease:

  • Maintain a routine: Keeping to a fixed routine and serving meals at the same time every day can help the person know what to expect at each time of day.
  • Reduce sensory distractions: Eliminating distractions like background noise and patterned or repetitive decor can help reduce symptoms like confusion, memory loss, and difficulties with visual-spatial orientation.
  • Communicate calmly: Speak to the person calmly and patiently. Avoid moving a lot or speaking to them sharply, as they may respond with aggression or impatience if they’re unable to find the words they’re looking for to express themselves. If they’re not responsive, avoid speaking about them as though they’re not there.
  • Maintain a bond with them: If you’re caring for a loved one, make it a point to demonstrate your affection for them. While caring for a person with a terminal illness can often feel like work, it’s also important to maintain a bond with them and seek out small joys in your relationship, such as singing songs and telling jokes.
  • Explore community resources: It can be helpful to locate community resources before you need them. The speed at which Parkinson’s disease progresses can vary for each individual, so identifying services and resources like visiting nurses, home health aides, and hospice institutions in advance can help you be prepared for when you need them.
  • Monitor symptoms and side effects: Parkinson’s disease can lead to dementia and make it hard for the person to care for themselves or participate in their care. Their healthcare provider may need feedback from loved ones and caregivers about the patient’s symptoms and side effects of their medication.
  • Determine your limits: Caregiving can be physically and emotionally draining, so determine your limits and prioritize self-care

According to a 2018 study, the cognitive symptoms of Parkinson’s disease had a greater emotional impact on loved ones and caregivers than the physical symptoms. As the dementia progresses, carers may experience a sense of grief and loss, as they feel their loved ones are not themselves anymore.

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  1. Lawson RA, Collerton D, Taylor J-P, Burn DJ, Brittain KR. Coping with cognitive impairment in people with Parkinson's disease and their carers: a qualitative study. Parkinson's Dis. 2018;2018:1362053. doi:10.1155/2018/1362053

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