Living with parkinson’s disease in its early stages

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In the early stages of Parkinson’s disease, many people lead independent and active lives. Nevertheless, complaints, but also worries about the future can burden. However, there are several ways to cope with limitations in daily life and psychological stresses.

Parkinson’s disease affected many areas of life – whether work, partnership and family, or leisure activities. Even if everyday life changes little in the early stages of the disease: Many sufferers are afraid that, over time, they will become dependent and in need of care. However, it is possible to lead a life that is not too much affected by the disease for a long time to come. Nevertheless, it makes sense to be prepared for the time when support from others becomes increasingly necessary.

Dealing with the diagnosis Information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

Parkinson’s disease only makes itself felt gradually. Many people feel no discomfort for a long time or attribute the symptoms to other causes such as the normal aging process. Sometimes friends or relatives notice first that something is wrong. Years can pass between the onset of symptoms and limitations and the final diagnosis.

As with many other serious diseases, the diagnosis often comes as a shock at first. At the same time, it can be relieving when there is finally an explanation for the symptoms and treatment can be started. The symptoms in the early stages can usually be treated effectively. Thus, there is usually time to adjust to the course of the disease and prepare to deal with later Parkinson’s consequences. It usually takes a few years before independence becomes severely limited.

Fears about the future are completely normal – but you should try not to let them overwhelm you. It is important to focus on the obvious steps first. This involves obtaining detailed information about the disease and seeking good medical support. It is particularly important. Treatment is usually provided by a neurologist in private practice.

Other support is also very valuable. Especially in the first period after diagnosis, it can be helpful to talk to others about one’s concerns and to seek advice on medical, legal, or financial issues. A good contact can be, for example, self-help groups or counseling centers. Most people are better able to cope with life after diagnosis if they involve relatives, friends and acquaintances from the outset, instead of withdrawing and dealing with problems only with themselves.

Dealing with the discomfort Information about $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

In the early stages of Parkinson’s disease, everyday life is often hardly or not at all restricted, especially if effective medication is being taken. But as the years go by, more problems can arise.

Physical complaints

Many people first notice their condition by poorer fine motor skills. Then, for example, it becomes more difficult to tie shoes or button shirts. Tremors are a typical first sign, as are feelings of stiffness, slowed walking or pain in the shoulders or hip. Sometimes there are symptoms that are not necessarily associated with Parkinson’s disease. Some people may be able to move normally in the early years and may not tremble – but they sleep poorly or are often constipated.

The typical Parkinson’s symptoms can often be effectively treated with medication in the early stages. Sport and exercise can also have a positive effect. Concomitant symptoms such as sleep or digestive disorders often do not improve with the medication. Together with your doctor, you can discuss what can be done about it.

Mental stress

Parkinson’s disease and the associated fears about the future can cause mental stress even at an early stage. Some people experience mood swings to the point of depressive symptoms . Some withdraw, especially when the symptoms become visible to others, and do not speak openly about the illness. They sometimes react very sensitively and worry about what others might think about them and their illness.

However, many sufferers find that the more they are able to cope with the condition, the better they do so. Often other people are more understanding than initially assumed. If not, they may also just be unsure how to deal with the condition, what to say, or how to help. Talking openly about the disease can reduce insecurities on both sides.

In many cities, there are self-help groups where people can share their experiences and receive support from others affected by the disease. Online forums or other social networks on the Internet are also becoming increasingly important for sharing information about dealing with illnesses. In the relative anonymity of the Internet, it is sometimes even easier to talk about taboo subjects such as addictions or sexuality.

Psychological counseling and support can be helpful for both sufferers and family members. For more severe problems, psychotherapy may be an option. In cognitive behavioral therapy, for example, you learn how to deal with negative thoughts better and how to cope with unpleasant situations more easily.

Speech and facial expression information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

Even in the early stages of the disease, speech may become softer and more slurred. In addition, it can sometimes be difficult to show feelings through facial expressions. Some people therefore start to avoid talking to others, even on the phone. However, withdrawing usually makes people unhappier. Conversely, it can be encouraging to deal openly and confidently with this limitation and then to notice that other people adjust to it.

Not every bystander immediately has the patience to listen to a person who speaks very softly and slowly. Rigid facial expressions or tense posture can be additionally irritating and lead to misunderstandings. But this is a matter of habit. You should therefore have the courage to talk about it. In addition, speech therapy may be able to help people speak a little more clearly and confidently. This also trains the mobility of the facial muscles, facial expressions and breathing.

Being active Information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

Because most people know that their disease is progressing, many consciously use the years after diagnosis for special activities: they travel a lot, pursue cultural interests or do volunteer work.

Many report that physical activity is good for them – for example, walking, cycling (even on an exercise bike), yoga or tai chi . Exercise can help alleviate symptoms, at least temporarily. It can help to actively deal with the disease, to think more positively again and to deal with challenges more optimistically. For many people, it is good to test their physical limits: For example, it can be a sense of achievement to go on a long bike ride despite having Parkinson’s disease.

As the disease progresses, certain activities gradually become more difficult or at some point are no longer possible at all. It is therefore important to notice how the body reacts to stress and to adjust activities accordingly.

Occupation Information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

Working people with Parkinson’s disease are usually concerned about how long they will be able to continue working. Some are unsure whether to tell colleagues and employers about the condition.

How long a job can be done depends very much on the activity and the course of the disease. In physically stressful or fine-motor demanding activities, one can reach limits earlier than, for example, in office work. However, the diagnosis does not mean that professional life is over. There are many people with Parkinson , who are actively working. It is crucial to recognize one’s limitations and adjust activities if they become too difficult. In many areas, it is possible to apply for aids or to technically redesign the workplace.

Another option is to apply for recognition as a severely disabled person. This can have advantages and disadvantages, which everyone must weigh up for themselves. On the one hand, as a severely disabled person you have special rights, for example improved protection against dismissal. On the other hand, not everyone wants colleagues or the boss to know about the illness. Some people are afraid that they will be seen as less able or perceived as being sick more than anything else. On the other hand, openness to others can also inspire understanding. Only when others know about it can we work out together how to organize work appropriately in the future. In addition, it can take the pressure off of trying to hide the illness. Whether and when to tell others is a personal decision. In larger companies, the works council or a representative body for severely disabled employees can provide support. They are required to provide confidential advice.

Driving information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

Many people with Parkinson’s wonder how much longer they will be able to drive a car. It is also crucial here to perceive one’s own limits. This means, for example, checking whether you can still react quickly enough in critical situations, whether you can still operate the steering wheel, clutch and brakes smoothly and whether you can turn your head far enough to look over your shoulder.

In addition, Parkinson’s medications can make people tired and therefore reduce their ability to drive. If you feel limitations, it makes sense to take a test for fitness to drive with a driving instructor. There are technical aids that can make driving easier. But apart from that, it’s important to recognize when it’s better for you and others to stop driving altogether.

Partnership and sexuality Information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

The disease can affect the partnership – positively and negatively. On the one hand, it can lead to more closeness as we depend more on each other and perhaps experience time together more consciously. On the other hand, problems that arise can lead to tension. Partner is not always patient when things go slower than before and conversations become more difficult as language problems increase. People who have played a strong role in a partnership all their lives first have to adjust to the fact that they are now increasingly dependent on the other person. The more stable the partnership, the more likely it is that the consequences of the disease can be overcome together. However, if disputes and conflicts become more frequent, couples counseling may be useful in order to find a new, joint way forward.

Many people with Parkinson’s report that their sexuality changes. If sexual desire decreases, this may be related to increasing immobility, but also to the feeling of no longer being attractive. Or simply with the fact that the head is not clear because the disease causes too many worries. Lack of desire can also be a side effect of certain medications.

A bigger problem for many, however, is that Parkinson’s drugs can greatly increase the desire for sex. This can manifest itself in intense sexual fantasies and frequent masturbation. If this puts a strain on the relationship, it is advisable to seek medical advice. In some circumstances, it may help to change the dosage or switch to a different medication.

Dealing with medications and side effects Information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

In Parkinson’s disease, it is particularly important to take the medication according to a set schedule. This is to ensure that the agents have an even effect. Daily intake is part of the routine for many people with Parkinson’s disease, but not easy for everyone. There are several tips on how to succeed in taking medications over a long period of time . These include:

  • regularly discuss the medication I was taking with a doctor,
  • keep the schedule simple,
  • Use packaging or containers where you can immediately see if you’ve forgotten a dose and
  • to set up automatic reminders, for example via smartphone.

Taking the medication regularly also works better if you are well informed about it and develop a set routine.

Many people with Parkinson’s have a fundamentally positive attitude toward medication. But they also experience that undesirable effects can impair the quality of life. Being well informed about the common side effects of various medications initially helps in deciding which drug to take. It also helps to correctly interpret complaints that arise. If side effects occur, medical advice is important. It is then possible to change the dose or take a different medication. In Parkinson’s disease, drug treatment must be adjusted regularly. Sometimes it takes a while until the drugs work as hoped and the side effects are bearable.

Health care proxy and living will information on $CMS_IF( ! tt_headline.isEmpty)$$CMS_VALUE(tt_headline.toText(false).convert2)$$CMS_END_IF$

Maybe it is possible to make your own decisions until the end of your life despite Parkinson’s disease. But it may also be that the consequences of the disease do not allow this or only to a limited extent. That’s why it usually makes sense to create a health care proxy or living will at an early stage.

A living will specifies how you want to be treated medically if a situation arises in which you are no longer able to express your own wishes. A health care proxy or care directive is used to determine who should handle important matters for you if you are no longer able to do so yourself. A doctor can advise on how to. Basic information on guardianship law, health care proxy and living will can be found on the topic page of the Federal Ministry of Justice , as well as links to form templates and brochures to download for free.

Chiong-Rivero H, Ryan GW, Flippen C, Bordelon Y, Szumski NR, Zesiewicz TA et al. Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status . Patient Relat Outcome Meas 2011; (2): 57-70.

Drey N, McKeown E, Kelly D, Gould D. Adherence to antiparkinsonian medication: an in-depth qualitative study . Int J Nurs Stud 2012; 49(7): 863-871.

Jones D, Rochester L, Birleson A, Hetherington V, Nieuwboer A, Willems AM et al. Everyday walking with Parkinson’s disease: understanding personal challenges and strategies . Disabil Rehabil 2008; 30(16): 1213-1221.

Lamont RM, Morris ME, Woollacott MH, Brewer SG. Community walking in people with Parkinson’s disease . Parkinson’s Dis 2012: 856237.

Roger KS, Medved MI. Living with Parkinson’s disease – managing identity together . Int J Qual Stud Health Well-being 2010; 5(2): 5129.

IQWiG health information is intended to help people understand the advantages and disadvantages of important treatment options and health care offerings.

Whether one of the options we have described is actually useful in a particular case can be clarified in a conversation with a doctor. Health can support but not replace the conversation with doctors and other professionals. We do not offer individual consultation.

Our information is based on the results of high-quality studies. They are written by a team of authors from the medical, scientific and editorial communities and peer-reviewed by experts outside IQWiG. How we develop our texts and keep them up to date, we describe in detail in our methods .

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