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Diagnosis of Parkinson's disease - what now? In the first few days after the diagnosis, many patients and their relatives initially experience a feeling of loss of control and helplessness in the face of the new situation. What does the diagnosis mean in concrete terms for everyday life? What will change now? How will the disease affect my relationship with my partner? These are all questions that need to be answered.
The good news is that Parkinson's is very treatable today. For patients at every stage of the disease, forms of treatment are now available that can maintain independence and flexibility in everyday life, alleviate symptoms and thus support general well-being. But beyond medication and device-based therapies, there are also a number of things that can help patients and their families cope with the new situation.
First take a breath
Every person affected deals with the diagnosis differently. While some jump straight into the search for information to learn everything they can about the disease, others first need time to adjust to the new situation. There is no right or wrong way to deal with the diagnosis. It's okay to feel sad, angry and frustrated. These feelings are absolutely understandable and do not require any justification. It is only important that the patient tells relatives how he or she would like to deal with the first period after diagnosis - after all, the partner and other relatives are in the same boat as the affected person.
Accept the new situation
Admittedly, this is easier said than done. But after the initial shock, the diagnosis can also have something liberating about it - especially if those affected have had the feeling for some time that something is not right. The diagnosis provides clarity, gives a name to the unknown, and can thus be classified - and tackled. Now is the right time to seek advice from a doctor and set the course for a therapy plan. In the case of Parkinson's, too, the earlier the disease is diagnosed, the better. In this way, the patient's greatest possible level of freedom of movement and independence can be maintained for as long as possible. If the patient is still in the early stages of the disease, there will probably be relatively few changes in everyday life for the time being; on the contrary, the appropriate therapy can alleviate existing symptoms and improve general well-being.
Talk openly with your partner
Like any chronic disease, Parkinson's becomes an integral part of the lives of those affected and their families. Along the way, it is important to openly address fears and concerns - also with a view towards the future. The age at which the disease is discovered can play an important role here: Young people with Parkinson's face very different challenges than people who are diagnosed later in life - for example, if family planning has not yet been completed or the disease could result in long-term occupational disability.
Both the diagnosis and the disease itself can cause sufferers to develop depression or other psychological problems. These changes should also be discussed with the partner so that he or she can respond accordingly.
Parkinson's disease can also affect intimacy in a partnership: for example, through changes in libido or unaccustomed challenges due to typical symptoms such as muscle stiffness (rigor) or tremor. Together with a partner and, if necessary, an appropriate specialist, these changes can also be managed.
A Parkinson's diagnosis initially raises many questions - the doctor is therefore the most important contact person.
Seek help - and accept
Openness is not only the top priority with regard to the partner: patients should also tell their doctor if they notice any physical or - just as important - psychological changes. He or she can provide information and is the interface to other support services such as a psychotherapist or sex therapist or specialists for physiotherapy and speech therapy.
Immediately after diagnosis, the amount of information out there about Parkinson's can be overwhelming for sufferers and family members. Here, too, the doctor can help and give a classification of which sources of information or contact points can be useful and helpful for affected persons and relatives.
In addition, the exchange with other affected persons can be immensely enriching for patients and relatives - after all, hardly anyone can empathize to the same extent with how affected persons and their families feel. Patient organizations and associations as well as self-help groups exist at both regional and national level. With digital offerings and face-to-face meetings (after the pandemic is over), they give patients the opportunity to network and share experiences. A Google search is the easiest way to find offers in the vicinity.
A good initial overview of patient associations and organizations is provided by the European Parkinson's Disease Association (EPDA) on its website: Member organisations | European Parkinson's Disease Association (epda.eu.com)
Open discussions with the partner and the family are important in order to be able to look into the future together after the diagnosis.
Regular physical activity is extremely important for Parkinson's patients to maintain their ability to move. This not only keeps muscles and joints fit, but also trains the sense of balance and improves general well-being. Physiotherapeutic care is an integral part of treatment for many sufferers in order to keep the musculoskeletal system in shape for as long as possible. The physiotherapist can provide helpful tips for exercises that the patient can do at home.
In addition, depending on the stage of Parkinson's disease, different types of sports can be useful. Patients who are in an early stage and are well controlled with medication can do virtually any sport - provided they do not do it alone. In the event that, for example, an unexpected muscle cramp occurs during swimming, another person should be present who can come to the rescue. More risky sports, where an unsecured fall is possible, for example, should only be practiced in consultation with the appropriate physician and also together with at least one other person. Targeted strength training can be a good way to challenge and reinforce the body. Gentler sports activities such as walking or yoga can be done without any problems. Many Parkinson's self-help groups also organize (virtual) meetings where people do sports together.
Allow yourself time out
Just as important as exercise are phases in which the body and mind can come to rest - for patients and relatives alike. This can be the case when practicing a creative hobby, listening to music or with very specific relaxation exercises. There is a range of videos, podcasts, apps and CDs that can be used to practice progressive muscle relaxation. Meditation is also becoming increasingly popular - just a few minutes a day can have a positive effect on general well-being.
Looking to the future together
For most Parkinson's patients, the disease progresses in stages over several years. It is important and right to enjoy the moments and freedoms that one has despite the diagnosis.
Nevertheless, it may be advisable to consider in advance what measures and aids may be required in the future.
Small aids from the medical supply store that make it easier to get dressed or move around the house, for example, can help the person affected to continue to cope with everyday life independently. The bathroom, where there are often trip hazards, can be made safer with just a few small changes. Depending on how much fine motor skills are affected by Parkinson's disease, it may be worth considering gradually making the wardrobe more Parkinson's-friendly, for example replacing clothes with lots of small buttons with ones with zippers. Which aids might be helpful for the patient in everyday life can be determined by specialists at medical supply stores - for example, during an individual home visit.
Larger projects such as home remodeling or a move may become necessary in the course of Parkinson's disease. To avoid being overwhelmed by a huge all-round project at some point, it may be preferable to divide any remodeling work into small sub-projects, and to proceed room by room, for example.
In connection with small or large changes, it is always worthwhile in case of doubt to ask the health insurance company or fund which measures that have become necessary due to Parkinson's disease can be subsidized.
Home | European Parkinson's Disease Association (www.epda.eu.com)
Many people live on their own. For them, the need to keep their distance during the Corona pandemic poses a particular challenge