Living with the early stages of Parkinson's disease

Photo of couple (PantherMedia / Ocskay Bence Mor)

In the early stages of Parkinson's disease, many people lead an independent and active life. The symptoms and worries about the future can still be hard to cope with, though. But there are various ways to deal with the psychological burden and the restrictions in everyday life.

Parkinson's affects many areas of life – be it work, relationships, family or leisure activities. Even if everyday life only changes slightly in the early stages of the disease, many people are worried about losing their independence and needing nursing care. But it's often possible to lead a life that's not restricted too much by the disease for a long time. It's still a good idea to be prepared for a time when you will need more help, though.

Dealing with the diagnosis

Parkinson's only becomes noticeable gradually. Many people don't notice any symptoms for a long time or put them down to other things, like the normal aging process. Sometimes friends or relatives are the first to realize that something is not right. Several years can pass before Parkinson's is diagnosed, and people already live with the symptoms and restrictions during that time.

Like with many other serious illnesses, the diagnosis often comes as a shock at first. It can also be a relief to finally have an explanation of the symptoms and to be able to start treatment. It's usually possible to treat the symptoms effectively in the early stages. There is generally enough time to mentally prepare for how the disease will develop and think about how to deal with the later consequences of Parkinson's. It usually takes years until people's independence is severely restricted.

Fears about the future are completely normal – but you should still try to not let them overwhelm you. It's important to take everything one step at a time. That includes making sure you're well informed about the disease and have good doctors. The latter is particularly important. Treatment is generally provided by a neurologist.

Other types of support are also very valuable. Especially in the time just after being diagnosed, it can be helpful to talk to others about your worries and get advice about medical, legal and financial matters. Self-help groups or support centers are often good places to turn to. Most people find it easier to cope after the diagnosis if they involve family and friends from the beginning rather than hiding away and trying to deal with their problems alone.

Dealing with symptoms

In the early stages of Parkinson's your daily activities may hardly be affected, especially if you're taking effective medication. But more problems can occur as time goes on.

Physical symptoms

Many people first notice that something might be wrong when their fine motor skills begin to deteriorate. It can then become more difficult to do things like tie your shoelaces or button your shirt. Tremor is a typical first sign, as are feelings of stiffness, slow walking and shoulder or hip pain. Sometimes the more noticeable symptoms are ones that wouldn't necessarily be associated with Parkinson's. For instance, some people might be able to move quite normally in the first few years and also have no tremor – but they sleep badly or are regularly constipated.

The typical Parkinson's symptoms can often be effectively treated with medication in the early stages. Sports and exercise can also have a positive effect. But other symptoms such as trouble sleeping or digestion problems often don't get better by taking medication. You can talk to your doctor about the treatment options.

Psychological effects

Parkinson's disease and the associated fears about the future can already affect your mental health in the early stages. Some people experience mood swings and even symptoms of depression. Some become withdrawn, especially if the symptoms are visible to others, and they don't speak openly about their illness. They sometimes react very sensitively and worry about what others may think about them and their illness.

But many people who are affected find that the more normally they treat their illness, the more easily they can cope. Other people are often more understanding than originally expected. If not, they may just not be sure how to approach the illness, what they should say or how they can help. Speaking openly about the illness can make things easier for both people.

Many cities have self-help groups where you can talk to other people in similar situations and find support. Online forums and other social networks on the internet are also becoming increasingly important for sharing experiences and advice. In the relative anonymity of the internet, it's sometimes actually easier to talk about taboo subjects such as addictions or sexuality.

Psychological support and assistance can be helpful both for those with the illness as well as those close to them. If the problems are more severe, psychotherapy may be a good idea. In cognitive behavioral therapy, for instance, you learn how to cope better with negative thoughts and overcome difficult situations.

Speech and facial expressions

Speech can already become quieter and more slurred in the early stages of Parkinson's. It can also sometimes be difficult to show your feelings using facial expressions. Some people then start to avoid talking to others, even on the phone. But that usually makes them even more unhappy. People who deal with this problem openly and confidently may realize that others respond in a helpful way, and that can be encouraging.

Of course, not everyone is patient enough to listen to someone who talks very quietly and slowly. A fixed facial expression or tense posture can also be unsettling and lead to misunderstandings. But people can get used to it. That's why you should be brave enough to talk to them. Speech therapy might help you to speak more clearly and precisely and to develop more confidence. This type of therapy also improves the ability of the facial muscles to move, as well as your facial expressions and breathing.

Be active

Because most people know that their illness will progress, many make a concerted effort to do certain things in the years after their diagnosis: They travel a lot, pursue cultural interests or get involved in volunteer work.

Many people say that physical exercise makes them feel good, such as walking, cycling (including on an exercise bike), yoga and tai chi. Exercise can help to relieve symptoms, at least in the short term. It can help people to actively confront their illness, start to think more positively again and view challenges more optimistically. Lots of people find it helpful to test their physical limits: Completing a long bike ride even if you have Parkinson's can give you a real sense of achievement.

As the disease progresses, certain activities gradually become more difficult or are at some stage no longer possible at all. So it's important to take note of how your body reacts, and adjust the activities you do accordingly.

Working life

Working people with Parkinson's usually worry about how long they will be able to carry on working. Some aren't sure whether they should tell their colleagues and employers about their illness.

How long you will be able to keep working depends very much on your profession and how the illness progresses. Physically demanding jobs and professions requiring fine motor skills will pose problems sooner than an office job might. But the diagnosis doesn't spell the end of your working life. There are lots of people with Parkinson's who are still fully active at work. The main thing is to know your own limitations and adjust your activities if they become too difficult. In many jobs it's possible to request special aids or make changes in the workplace.

Another option is to officially apply for the status of a severely disabled person. That can have advantages and disadvantages that everyone should consider for themselves. On the one hand, if you're registered as severely disabled you have special rights, such as better protection against being made redundant. On the other hand, not everybody wants their colleagues or boss to know about their illness. Some people are scared that they will be considered less capable, or that they will only be seen as being ill. But openness towards others can also generate understanding. Only once other people know about your diagnosis can you discuss how you can continue to do your work in the future. It can also relieve the pressure of having to hide your illness. If and when you want to tell others is a personal decision. In larger companies, the works council or the representative for disabled persons can help. They are legally required to provide confidential advice.

Driving

Many people with Parkinson's wonder how much longer they will be able to drive a car. It's very important to be aware of your own limitations. For instance, to check whether you can react fast enough in a critical situation, whether you can still comfortably use the steering wheel, gear stick and brakes, and can turn your head far enough to look over your shoulder.

Parkinson's medications also make you feel tired, and therefore impair your driving ability. If you notice any problems, it's a good idea to have a driving instructor test your ability to drive. There are technical aids that can make it easier to drive. Aside from that, it's important to realize at what stage it's better for you and for others to completely stop driving.

Relationships and sexuality

Parkinson's can influence relationships, both positively and negatively. On the one hand, it can bring you closer together because you're more reliant on one another and may make more of an effort to enjoy your time together. On the other hand, the problems that occur can lead to tension. Not every partner is patient enough if things take more time than they used to and conversations become more difficult as speech problems get worse. People who were always strong in a relationship first have to get used to being more and more reliant on the other person. The more stable the relationship, the better both partners usually cope with the effects of the disease together. But if arguments and conflicts begin to build up, relationship counseling can be a good idea to help find a new, common path forward.

Many people with Parkinson's say that the disease has affected their sexuality. Reduced sexual desire can be a result of increasing problems with movement – but also of no longer feeling attractive. Or it may simply be to do with the fact that your head is full of worries about the disease. Loss of sexual desire can also be a side effect of some medications.

But a greater problem for many is that Parkinson's medication can considerably increase sexual desire. That can result in intense sexual fantasies and frequent masturbation. If that causes problems in the relationship, it's a good idea to talk to a doctor. Changing the dose or switching to a different medication can sometimes help.

Medication and side effects

It's especially important that Parkinson's medication is taken according to a fixed schedule. That way the drugs should have a stable effect throughout the day. Most people who have Parkinson's have to take medication every day, but it's not always easy. Various things can help if you have to take medication on a long-term basis. These include:

  • regularly talking to your doctor about taking your medication,
  • keeping the treatment plan simple,
  • using packaging or containers that make it easier to see if a dose has been missed, and
  • setting up automatic reminders, for instance on your cell phone.

Regularly taking medication is also easier if you're well informed about what you're taking and develop a fixed routine.

A lot of people with Parkinson's generally have a positive attitude towards their medication. But they also find that the adverse effects can affect their quality of life. Knowing about the common side effects of the various medications can help you to decide which one to take. It also helps to correctly identify any side effects that occur. It's important to seek medical advice if you have severe side effects. You could then change the dose or switch to a different medication. Parkinson’s treatment with medication has to be regularly adjusted. It can sometimes take a while for the drugs to have the desired effect and the side effects to become tolerable.

Power of attorney and advance health care directive

It might be possible to make your own decisions until the end of your life despite having Parkinson's. But it’s possible that the effects of the disease will keep you from doing so, partially or entirely. That's why it’s usually a good idea to already draw up a power of attorney or advance health care directive in the early stages.

An advance health care directive determines what medical care you want to be given in the event that you’re no longer able to make your opinion known. In Germany, you can appoint someone to take care of important matters if you’re no longer capable of doing so yourself (in German this is called a Vorsorgevollmacht or Betreuungsverfügung). Your doctor can give you advice on this. The German-language topic website of the German Federal Ministry of Justice (BMJ) provides basic information on these issues in Germany. This website also links to free downloads of templates and brochures.