Coping with the severe motor and non-motor symptoms of Parkinson’s is a non-stop challenge. According to specialists Gila Bronner and Orna Moore, one of the first steps when dealing with these complicated issues is to understand how the disease affects communication and intimacy within personal relationships
“When my son visits with his children, I’m happy. Soon, however, the noise my grandchildren make while running around the house makes me nervous. My tremor gets worse and I have to leave the room. They think that I don’t like their visits, but they are wrong. How can I tell them the real reason I am sad, when I can’t even tell them about my Parkinson’s?”
This is just one example of how Parkinson’s can impact on the family relationships of people who live with the disease. Here’s another: “We recently told our five-year-old granddaughter about my disease. Last week, when she saw the tremor, she took the shaking hand and said: ‘Parkinson! Parkinson! You are bad! Stop shaking!’ Our eyes were filled with tears of excitement and happiness, and we felt we are not alone.”
Clearly, intimacy and communication are vital ingredients for a good life for people with Parkinson’s (PwPs) and their families. But this is sometimes easier said than done. So what is intimacy and how can we communicate our feelings better?
What is intimacy?
Intimacy plays a central role in the human experience and doesn’t only refer to sexual or erotic events. There is a basic need in everyone’s life for intimacy – namely a need to belong, to be close to others and to be loved. This need may be satisfied within an intimate relationship (including friendships), dating relationships, spiritual relationships, and family and marital relationships. At the same time, each person will have different intimacy needs. Meanwhile, if you struggle with the demands of everyday life then this can negatively affect your intimacy needs, and if you are not open about this fact then your family members may not notice your problems, which could lead to other intimacy issues. One thing’s for sure, however: Parkinson’s often raises questions and concerns regarding relationships and intimacy.
What is communication?
Communication is the sharing of ideas, information and feelings – both verbally and non-verbally. It is the way we let other people know about our ideas and feelings. It is what you say, how and when you say it – but also what you don’t say. It is your facial expression, gestures, posture and your vocal tones.
Communication is the key to free and warm expression, caring and love, and is essential in maintaining a good relationship and a good quality of life
Communication is the key to free and warm expression, caring and love, and is essential in maintaining a good relationship and a good quality of life. Good family communication involves being both an active listener and a thoughtful speaker. Different perceptions and expectations in the family can lead to confusion and frustration. Parkinson’s has the potential to seriously affect communication and impact on family relationships.
Intimacy and communication in Parkinson’s disease
Communication is the most effective way to deepen intimacy in relationships – in the family, with a spouse, with friends or when at work. Every aspect of life improves when we become better communicators. People who are open to sharing their feelings, thoughts and ideas without the fears of being misunderstood can achieve real intimacy in their relationships.
Yet this is where Parkinson’s comes in. Dealing with any chronic illness demands communication. PwPs and their families often have numerous questions regarding the disease and its treatments – but they also need to intimately share their fears, thoughts and feelings. They need communication skills, which can be decreased due to the stressful and multi-dimensional environment that the disease creates.
Parkinson’s can lead to emotional, family, social, financial and vocational dysfunction, and its psychosocial effects – the non-motor symptoms – may be more devastating and disabling than the motor symptoms. Since the disease’s symptoms are often debilitating and unpredictable, couples may find their expectations for themselves and each other forced to change unexpectedly.
Improving intimate communication in the family
Maintaining intimate communication in a relationship will have a positive impact on the long-term effects of Parkinson’s – especially at the time of diagnosis when PwPs and their families are forced to adapt to a future that includes a degenerative illness. People are not always used to disclosing feelings or sharing problems, but it must be acknowledged that Parkinson’s gives a ‘second chance’ – an opportunity to change behaviours that lead to open communication with significant family members.
Intimate communication offers PwPs and their families a social network that provides strong emotional attachments and helps to fulfil a universal need of belonging and the need to be cared for. To experience intimacy, people must allow loved ones into their mind, body, soul and heart. In short, good communication isn’t something that just happens. But you can make it happen!