….A care partner feels powerless to help her spouse when he makes no effort to try treatments other than medication, like exercising or joining a support group, to help them both live better with Parkinson’s.
…A person living with Parkinson’s is mortified when someone in their local community thinks they are intoxicated when they encounter them in a store. They subsequently refuse to go out, except to medical appointments.
…Another care partner wants to know how to create a “safe space” to communicate with his partner living with Parkinson’s.
These are some of the complicated situations that were addressed during a Parkinson Canada webinar, entitled: Coping with Parkinson’s: Strategies for the Person with Parkinson’s Disease, the Care Partner and Health Professionals. You can replay the November 2017 webinar anytime here.
Social worker and expert presenter Elaine Book offers specific approaches, conveyed with knowledge and compassion, to help anyone coping with the challenges of living with Parkinson’s disease. Working at the Pacific Parkinson’s Research Centre, her presentation contains plenty of real-life examples, similar to the situations noted above.
She begins the webinar describing the feelings that must be recognized and acknowledged by people living with Parkinson’s and their families. You need to understand that you are experiencing changes in every aspect of your life, beyond the physical symptoms of Parkinson’s disease, such as changing family roles, routines, work, financial circumstances, intimacy, and facing an unknown future. The resulting feelings can include shock, fear, anxiety, grief, guilt, shame, anger, and stress.
“As a patient once told me, ‘my place in the world is changing’ and it is important to attend to any unaddressed feelings of loss, grief, anger, stress, and depression,” says Book. “How you manage these feelings does have an impact on managing your symptoms and your life with Parkinson’s.”
Grief usually accompanies loss. “Grieving can be a good process,” says Book. A period of grief is normal and is characterized by good days and bad days.
Depression is more consistently a negative experience. Up to 50 per cent of those with Parkinson’s experience depression, whether it is a neurological symptom of the disease or a result of living with Parkinson’s. “It is often a combination of the two,” says Book. “The good news is that anti-depression medication can be effective in helping you get through a critical period. The sooner depression is addressed, the better, because we know that it also has an impact on the physical aspects of the disease.”
A feeling of shame or stigma is often related to the visible physical symptoms of Parkinson’s such as tremors, an awkward gait, a facial “mask” and slurred or soft speech. Strangers may assume the individual is intoxicated or intellectually challenged. A common reaction is to hide from embarrassment or humiliation, resulting in social isolation.
Book advocates that you continue to do the activities that define you and “dare to share” your diagnosis and educate others about your condition. “Most people will respond positively, perhaps with some questions, as well as offers of assistance,” says Book. “This is your opportunity to raise awareness and that can be empowering, not shameful.”
Stress can also impact physical health. It is the body’s reaction to a change that requires a physical, mental or emotional adjustment in response. It is important to be aware of stress and what is causing it, so that it can be addressed. Individuals with Parkinson’s need more than just awareness about being stressed. They need to find the cause and make adjustments to alleviate it.
“Parkinson’s disease requires a continuous need to cope with the stresses of living with a chronic disease,” says Book.
She also urges health professionals to identify the “invisible” symptoms of living with Parkinson’s and to be aware of the perceived shame and stresses in people living with Parkinson’s disease. A holistic assessment can help identify challenges so that they can be addressed in order to improve the quality of life for all of those affected by Parkinson’s disease.
Book describes different types of coping strategies, including:
- Task-oriented: analyzing the issue or challenge and taking action to solve it.
- Emotion-oriented: attending to your feelings through counselling, a support group, friends and family, or on your own with meditation, yoga, etc.
- Distraction-oriented: engaging in activities, such as exercise, hobbies or volunteering.
Most people make use of all three types of coping strategies. A list of coping strategies and tips is found here, under the heading Manage your Parkinson’s. Book also encourages individuals to focus on their strengths and how they got through challenges in the past. “Write them down,” she says. The handouts include a “strength word list” to get you started.
The presentation also addresses “life hacks,” small things you can do that make life easier, like using liquid soap in the shower instead of bar soap, so you don’t need to worry about grasping it, or using a stand for you mobile phone, so you don’t need to hold on to it when using it, or using bowls with a silicone base, so they don’t slide around on the counter or table.
There is no right or wrong way to cope with Parkinson’s. Each individual’s journey with the disease is different and so will be the ways of coping with its challenges. Book asks people living with Parkinson’s and their care partners to remember that “asking for help is not a sign of weakness, rather it is a sign of strength.”
Book also shares a story illustrating the importance of a positive attitude… A woman wakes up and finds she has three hairs on her head, so she decides to fix her hair in a braid and enjoys a wonderful day. The next morning she wakes to find she has two hairs on her head, so she decides to part them in the middle and goes on to have a fulfilling day. The next morning, she wakes to find just one hair on her head, so she goes with a ponytail and has a lovely day. The next day she wakes to find she has no hair left at all. “Great,” she says, “I don’t have to fix my hair,” and she gets on with her life. Positive attitude goes a long way.
Book encourages people with Parkinson’s to simplify and streamline their lives and to change their expectations. As one individual with Parkinson’s told her, “Parkinson’s has not changed the course of my life, but rather it is now a part of the course of my life.”
At the close of the webinar, other resources are offered to help cope with Parkinson’s, including websites, books and fact sheets. Parkinson Canada offers a series of webinars on its YouTube channel along with a calendar of upcoming podcasts and webinars which can be found here.
Visit www.parkinson.ca for a wealth of information and resources to help people live well with Parkinson’s.
Know that you are not alone. Parkinson Canada staff and volunteers are ready to help. Call our Information and Referral Helpline at 1-800-565-3000 or email your questions to firstname.lastname@example.org.