Frequently Asked Questions

If you have recently been diagnosed with Parkinson's disease,
it is important to recognize that the condition is one that demands adaptation, not despair
I am having trouble coping with Parkinson's disease. How can I make my life better?

The most important step you can take is to seek help as soon as you feel less able to cope. Taking action early will enable you to understand and deal with the many effects of Parkinson's disease. Find out as much as you can about the illness. Talk to your friends and family about it. They will want to be involved in helping you. Don't be afraid to ask your doctor, nurse, or other health care provider to repeat any instructions or medical terms that you don't understand or remember. They should always be available to answer your questions and address your concerns. And make use of resources such as a support group.
What do I tell my spouse or partner?

Be honest but reassuring. While PD is a serious illness, a person diagnosed today can look forward to many years of nearly normal activity. Think of yourselves as a team, just as you would in other areas of your life. When you both feel free to talk openly about your questions and fears, together you will be able to deal more easily with PD. Have your spouse, partner or care giver attend a support group meeting with you.
What do I tell my children?

At any age, reassurance is the primary tack to take. If your symptoms are at all 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 may be able to be and still maintain the delicate balance between the progressive, degenerative side of PD and the fact that scientists are working their way to a cure. A more mature child at any age can deal more easily with being told about a diagnosis of PD. If your child would like to know more, have him or her attend a support group meeting with you.

Should I tell my employer?

Each situation is different, of course, but if you personally would prefer not to tell you employer or coworkers about your PD, and your symptoms are not noticeable, then it may well be OK to keep it to yourself. However, experience has shown that most people with Parkinson are surprised to find that co-workers have already guessed at their condition long before the person thought his or her symptoms were noticeable. Remember, if you have told anyone, you may find that you have told everyone
What can I say or do when strangers notice or make comments about my symptoms?

Chances are that, from time to time, people will notice your symptoms and comment on them. It should 't be hard to adjust to that, since you will probably find that most comments will be friendly. The more at ease you are with the fact that you have PD the easier it will be to take any comments and stares in stride. Concerns such as these are just the questions to bring to a support group meeting to get the benefit of other people's 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 needs at the moment and your feelings about the offer of help. Try out your planned responses: "yes," "no," "thanks, but I've got it", "thanks, but I'm taking this one as a personal challenge." and see which work most comfortably for you.

How do I deal with people who don't take my PD seriously because I look "OK"?

PD is often a disease that hides from the public. If you do not have significant tremor or your medications hide your symptoms, it may not even be apparent to a medical professional. There are several reasons that people make comments about how good you look. First, they are often simply stating what they see, and they hope the comment will make you feel better about yourself. At other times, your appearance may reassure people that you are not really ill. Such a statement can also be a way of dismissing the seriousness of your illness because it makes others uncomfortably aware of their own vulnerability to serious illness.
How can I minimize embarrassing dexterity problems such as fumbling for my credit cards?
This issue is not limited to credit cards or money. Car keys, theater tickets, church bulletins, a glass of wine, or a plate of food at a buffet - even worse, both a glass of wine and a plate of food. Just remember, everyone drops things from time to time. Everyone fumbles. Parkinson's may just make it happen more often (sometimes a lot more often). Compensatory strategies can be very helpful: a big wallet for easy access, counting change ahead of time, not using change, asking a friend to hold your drink while you steady a plate, etc. When you encounter a new problem, think about the best way to handle it the next time. And remember, dropping change is a symptom of your disease, not a reflection on your character.
Can I drive with Parkinson's Disease?
Several issues are involved: physical ability, legal permission, safety, and the importance of independence. You will likely be able to drive safely and legally for several years, depending on your age and general physical condition. However, PD eventually affects reaction time, ability to handle multiple tasks, vision, and judgment. A good way to gauge whether you should be behind the wheel is to ask yourself, "If a loved one were my passenger, would I be risking that person's safety because of my PD?" Also, be aware of others' reactions. If your spouse or child has commented negatively on your driving ability or is visibly reluctant to be your passenger, check your ego at the door and carefully consider their concerns.
My symptoms make me self-conscious about being in public. What can I do?
Staying at home is a great temptation when your symptoms are showing, but it only deprives you and your spouse or friends of the pleasure of each other's company. And it isolates you. The truth is that few people will even notice your symptoms. A bad tremor while making change will probably be taken for a momentary rattling. Knocking over a glass at dinner? Spilled soup? It happens to everyone. But the more you are out and about, the more people will see you, and visibility means more acceptance. PD doesn't have to be a prison.
Can a support group help?
Many people find that a support group is very effective in helping them cope with the day-to-day realities of having PD. Parkinson Support Group of Upstate New YOrk serves the Rochester, New York area with monthly support meetings. (The schedule of PSGUNY support group meetings can be found by clicking here.) While we realize that a support group may not be right for everyone, if you have PD or have a family member, friend or associate with PD, we encourage you to attend one or more of our group meetings to see, first hand, if we can help you. The PSGUNY support groups are a good source of all kinds of information. PSGUNY participants offer a treasury of personal and practical experience. Plus a great collection of articles, newsletters, books and other information about Parkinson's Disease - and we love to share it all with others.
The questions and answers presented here are not intended to provide medical advice. They represent the collective suggestions & recommendations of a number of sources with, or interested in, Parkinson's Disease.
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