Sharing Your Diagnosis
A Parkinson’s diagnosis affects everyone, your partner, family, friends and acquaintances. Keep your communication open and express how you are feeling about your condition and take time to also listen to how they are feeling.
How will this affect my relationship with my spouse?
Think of yourself 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. If you have friends or family with Parkinson’s disease, yours may not manifest the same way at all.
If your partner wasn’t with you at the time of diagnosis, be honest about what the doctor had to say, but reassuring at the same time. Talk openly about your questions and fears. Together, you will be able to deal more easily with Parkinson’s disease. And by dealing with the disease together, you and your partner may actually find that your relationship grows stronger.
What do I tell my children?
Regardless of your child’s age, your focus should be on reassurance. If your symptoms are 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 can often 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.
There is a delicate balance between presenting the reality of Parkinson’s disease as a progressive, incurable disease while focusing on the optimistic truth that scientists are speeding toward breakthroughs more rapidly than ever.
There is nothing wrong, or misleading, with stressing a positive outlook to either yourself or your child on future treatments and a possible cure. In fact, it can go a long way in making your disease easier — both physically and psychologically — for all involved.
Getting involved in an event together can also make children feel like they are helping to make a difference.
What about telling teenagers?
Oddly enough, telling a teenager may be more difficult than telling a younger child. Teenagers’ worlds are already full of complex emotional and physical changes 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.
You can reassure your teenager that the disease progresses slowly and that new treatments are under study. You can also stress that exercise is an important component of your treatment. Exercise is something you can do together that will empower you and your family in combating the disease.
Also, giving teenagers some sense of control can help them deal with this new development in their lives. For example, you can research a question online together if you don’t have the answer. Again, reassurance is the key.
What about my adult children?
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 your inability to drive or live alone. As with everyone you will tell, focus on remaining forthright, optimistic and open to questions.
Guide – Talking to Children and Teens about Parkinson’s
MJFF Patient Council member Bryan Roberts’ diagnosis came around the same time as his daughter’s birth. She hasn’t known him as anything other than her father; PD is just a part of that.
Roberts shares his story in this guide on Talking to Children and Teens about Parkinson’s.
What will my parents think?
More likely than not, it will be difficult for you to tell your parents of your diagnosis, and difficult for them to hear it. Frequently, parents feel guilty for somehow not protecting you from this disease (which is impossible, since we don’t know how anyone gets Parkinson’s disease). They may feel frustrated or powerless, and this may affect the reaction they show you. Denial is a common defence, 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 they rally you. Some Parkinson’s patients whose parents are very old or infirm may decide not to share their diagnosis with their parents at all.
How can I be expected to communicate in an effective way when I’m dealing with so much?
Many people prefer not to talk about their Parkinson’s disease, but those who can discuss it openly seem to find it less burdensome. Plus, a Parkinson’s diagnosis rarely affects just one person. The condition can be difficult for immediate family and friends. It is important for those who have the condition to recognise that while the physical symptoms may be ours and ours alone, the emotional repercussions can be much more widespread. Communication ensures that misunderstandings are kept to the minimum. Sharing the burden of Parkinson’s disease is therapeutic for all concerned.
Read this article on the Burden of Keeping Parkinson’s a Secret
Why do people think I am unhappy or angry when I am not?
The average person associates Parkinson’s disease with tremor, but the disease is commonly referred to by health professionals as a disease characterised by “poverty of movement.” Many Parkinson’s patients have stiffness and rigidity in their muscles, including facial muscles. Muscles tend to move with difficulty, lacking subtlety and fluidity. Referred to as “facial masking,” these symptoms may give a Parkinson’s patient’s face a grim or set look, because smiling and other facial nuances are difficult to convey.
Many people do not realise 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 symptoms of your Parkinson’s disease. It’s a good opener for talking about the disease in general. 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.
Why are my friends acting so strange?
First ask yourself if every conversation you have had with friends recently started with, ended with or was filled with Parkinson’s disease. Most of your friends want to be there for you, but sometimes they want to talk about the latest movie or the vacation they just took. Having Parkinson’s disease is not a license to ignore or dismiss the needs of those around you.
A diagnosis of Parkinson’s disease is a big deal. 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 run in the opposite direction.
Support groups, both on- and offline, are perfect places to go on and on about your Parkinson’s disease and help prevent it from endangering your personal relationships.
Sharing the Shake It Up website and facebook links with your friends who want to understand more can be helpful for them to understand the condition.
What do I say to friends and acquaintances who don’t take my Parkinson’s disease seriously because I “look so good”?
Parkinson’s disease often hides from the public. If you do not have significant tremor, or if your medications mask your symptoms, your disease may not even be apparent to a medical professional. Consequently, those who are not so close to you may find it difficult to understand your condition.
People make comments about how good you look for several reasons. First, they are often simply stating what they see, and they hope the comment will make you feel good. At other times, your appearance may mistakenly reassure people that you are not seriously ill. Such a statement can also be a way of dismissing the seriousness of your illness because acknowledging a serious illness makes others uncomfortably aware of their own vulnerability.
Also, remember that for your friends and acquaintances, discussing your Parkinson’s disease can seem like one of those “nothing I say is going to sound right” situations that we all have experienced from time to time. Most people don’t want to say anything for fear of embarrassing you. If you don’t look good, they generally (and probably correctly) assume you don’t want them to tell you so. So, for many people, “you look so good” seems the safest and least awkward comment they can make.
The perception that a “you look so good” comment minimises the seriousness of your illness is just that — a perception, which could be incorrect. Putting yourself in the shoes of the person making the comment can make a significant difference in how you react. Again, communication is the key to understanding.
Sometimes I get angry or irritated because people don’t seem to “get it” — to understand Parkinson’s disease and how I need to deal with it. Am I the only one who feels this way?
Many Parkinson’s patients voice their frustration about how difficult it is to get others to understand and respond “appropriately” to their Parkinson’s disease. To a great extent, that is because Parkinson’s disease can be such a complex and unpredictable. This probably explains, in part, why patients who deal well with their Parkinson’s disease are often hailed as inspirational to others.
There is more than a little truth in a saying frequently repeated in the Parkinson’s community: No one really understands Parkinson’s disease unless they have Parkinson’s disease. But by the same token, how can others be expected to “get it” when they don’t have it? Even the best-intentioned friends and acquaintances are likely to respond, at times, in ways that appear to be insensitive. Frustration with others often subsides when you show greater compassion for how they are dealing with your disease.
It is also important to remember that having Parkinson’s disease is not an excuse to be less than civil to your friends and loved ones when they don’t respond “correctly” or anticipate your needs as Parkinson’s patients, or allow you to do things independently. Try to recognise the source of your frustration without taking it out on others.
Finally, acknowledge the role of your actions in creating certain barriers that prevent others from “getting it.” After the initial 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 unravelling these instinctive protective layers, and communicating your fears, emotions and physical symptoms, you are not only helping others understand you better, but are also experiencing something of a personality revival.
What can I say or do when strangers notice or make comments about my symptoms?
Chances are that people will notice your symptoms and comment on them. Children may stare. It can be hard to adjust to that, but most comments will be friendly. The more at ease you are with the fact that you have Parkinson’s disease — that is, the more time and effort you have invested to understanding and accepting your disease — the easier it will be to take these moments in stride. You can also share concerns like this one at a support group meeting or in an online chat to enjoy the benefit of others’ experiences.
How do I deal with people who try to do things for me that I would rather do myself?
Accepting and rejecting assistance are both something of an art. The first thing to remember is that most people won’t know whether you want help or not until they ask, you ask, or they try to do it for you. They can’t read minds. Your response will depend on a realistic assessment of 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. One favourite response came from a Parkinson’s patient who, when asked if she wanted help opening a pack of mints, said, “Thanks, but I’m taking this one as a personal challenge.”