A Parkinson's diagnosis creates a ripple effect. Your diagnosis affects your partner, family, friends and acquaintances. Being open about your feelings, symptoms and concerns can help keep relationships strong and get you the support you want or need.
Many people prefer not to talk about their Parkinson's disease (PD), but those who are able to discuss it openly seem to find it less burdensome. A Parkinson's diagnosis rarely affects just one person. Knowing that a loved one has been diagnosed with PD can be difficult for family and friends. It is important to recognize that while the symptoms of Parkinson's may be yours and yours alone, the emotional repercussions can be much more widespread. Communication ensures that misunderstandings are kept to a minimum. Sharing your experience with Parkinson's disease helps everyone concerned.
Check out our Guide for the Newly Diagnosed which offers tips for navigating a new Parkinson's diagnosis.
Spouse or Partner
Think of you and your partner as a team, just as you do in other areas of your life. The truth is that neither of you can know, at the outset, what this diagnosis will mean for you individually or as a couple. You may have friends or family members with Parkinson's disease, but your experience may be quite different.
If your partner wasn't with you at the time of diagnosis, be honest about what the doctor had to say. By dealing with the disease together, you and your partner may actually find that your relationship grows stronger.
Regardless of your children's ages, your focus should be on reassurance. If your symptoms are even slightly noticeable, all but the youngest children are probably already concerned, whether they have said so or not. The older the child, the more open you often can be. However, age is not the only factor to consider. A more mature child at any age can deal more easily with being told about a diagnosis of Parkinson's disease. And there is a delicate balance between presenting the reality of PD as a progressive, incurable disease while focusing on your symptoms at the moment — which may be mild — and the optimistic truth that scientists are speeding toward breakthroughs more rapidly than ever.
There is nothing wrong with, or misleading about, stressing a positive outlook to either yourself or your child. At the time of diagnosis, much is uncertain about how your disease will progress. A diagnosis of Parkinson's can feel overwhelming. Yet, taking a positive attitude toward learning about and how to cope with the disease can go a long way in making your Parkinson's easier — both physically and psychologically — for you and all the people concerned about you.
Oddly enough, telling a teenager may be more difficult than telling a younger child. Teenagers' worlds are already full of complex emotional and physical change as they develop into young adults, and their relationship with a parent can often seem strained and puzzling. Be forthright and open to questions, and honest in your answers. If you don't know, be willing to say you don't know. Or, if you don't have the answer to a question, research it together online. You can reassure your teenager that the disease progresses slowly and that new treatments are under study.
Also, giving teenagers some sense of control can help them deal with this new development in their lives. Exercise is something you can do together that will empower you and your family in combating the disease.
Learn more in our guide, Talking to Children and Teens about Parkinson's.
While the diagnosis may still come as a shock, depending on your age and theirs, the issues that arise might be more immediately pragmatic than emotional. You may need to discuss more practical considerations, such as how your symptoms impact your daily life. Although you cannot be sure how your Parkinson's will progress, your adult children can help you plan for a time when you are not able to drive, for example, or live alone. As with everyone you will tell, focus on remaining forthright, optimistic and open to questions.
More likely than not, it will be difficult for you to tell your parents about your diagnosis — and difficult for them to hear it. Frequently, parents feel guilty for somehow not protecting you from this disease (which is impossible). They may feel frustrated or powerless, and this may affect the reaction they show you. Denial is a common defense, which often feels like a betrayal, but don't give up. Given time, parents usually become supportive in whatever ways they can.
Of course, all families are different. Some families enjoy an openness that will allow you to let your parents in — as you would your spouse — and Parkinson's disease will be just something that happens in life, around which you will rally. And people whose parents are very old or infirm may decide not to share their Parkinson's diagnosis with their parents at all.
Friends and Acquaintances
A diagnosis of a serious illness reminds everyone of their own vulnerability and mortality. Some of your friends will handle this better than others. And you may be surprised by their different reactions. Friends who have family members with Parkinson's disease might be very supportive of you or might have misconceptions about what PD means to you, since everyone's symptoms are different.
Friends may offer to help but not know what it is that you may want or need. If you can be specific about what help you would like — a ride to an appointment or a loaf of bread from the grocery store — both you and your friends will feel more comfortable. If you don't want or need help at the moment, just say, "No thanks; not now."
Some people may hesitate to ask how you are doing; others may ask but not want to know the details. It may put them at ease if you tell them, briefly, how you are feeling, and then move the conversation to a different subject (for example, asking about the latest movie they've seen or their vacation).
Parkinson's will be on your mind a lot, however, and if you feel like talking at length about the disease, it may help to join a support group. Whether talking in person or online, other people with Parkinson's and their family members will understand what you are going through.
If you do not have significant tremor or if your medications mask your symptoms, your disease may not be easily recognized or understood by those who are not close to you. You may or may not want to share more about your PD. The decision to share a diagnosis with acquaintances is a personal choice based on your comfort, the other individual and the situation.
Dealing with Frustration
For some people close to you, discussing your Parkinson's disease may seem like one of those "nothing I say is going to sound right" situations that we all have experienced from time to time. Even the best-intentioned friends and acquaintances are likely to respond, at times, in ways that appear to be insensitive. For example, for many people, "you look good" seems the safest and least awkward comment they can make. The perception that such a comment minimizes the seriousness of your illness is just that — a perception. Putting yourself in the shoes of the person making the comment can make a significant difference in how you react.
Remember, too, that unless you tell people what you need or what you want to do independently, they won't know, and so they may do things that frustrate you. After a diagnosis, there is a tendency to erect psychological walls — both to protect your own feelings and to shelter friends and family from worrying about you. By unraveling these instinctive protective layers, and communicating your feelings and physical symptoms, you can help others understand you better.
Some frustration may arise around assistance. Both accepting and rejecting assistance are something of an art. The first thing to remember is that most people won't know whether or not you want help until they ask, you ask or they try to do it for you. With your care partner and others you see frequently, talk about what you want and don't want help doing. If you like to do things for yourself, let them know you will ask for help if you want it.
When others offer you assistance, assess your need at the moment and your feelings about the offer of help. Try out responses (yes/no/thanks, but I've got it), and see which works best for you. If you can, maintain a sense of humor. One person with Parkinson's who, when asked if she wanted help opening a pack of mints, said, "Thanks, but I'm taking this one as a personal challenge."
Many people with Parkinson's have stiffness and rigidity in their muscles, including facial muscles. Referred to as "facial masking," this symptom can give people with Parkinson's a grim or set look because smiling and other facial nuances are difficult to convey.
Many people do not realize just how much they rely on visual cues to relate to you or to interpret what you say. Explain to people who may incorrectly believe you are unhappy or upset that your body language "lies," and it is just a symptom of your Parkinson's disease. Meanwhile, intentionally exaggerate your facial expression to correspond to how you are actually feeling. Practice facial exercises and move your facial muscles frequently to help relieve the stiffness.