Living with Parkinson

 

In the advanced stages of Parkinson's Disease, the patients' needs become more complex and may increasingly affect their mental state, family and daily life, relationships, social life, career and work capabilities, financial status, leisure options and more. However difficult it may be to confront future issues for patients with degenerative diseases, it is prudent to enlist the patient’s supportive resources early and be best prepared to deal with them. Support of the family, medical and social services staff, friends and spiritual advisors can greatly help the patient deal with a long-term illness. Designated support groups, patient associations and social networks that are designed especially for Parkinson's Disease patients make it possible to share the difficulties, receive support and be exposed to creative ideas for best dealing with the disease.

It is important to remember that life with Parkinson's Disease has the potential to bring the family to a major crisis, while, on the other hand, with proper preparation and understanding of the challenges, appropriate coping tactics may actually strengthen relationships within the family and help the patients live their lives to the fullest despite the difficulties. Openness and mutual understanding play a very important role in this process.

Important Points for the Management of Parkinson's Disease:

Emotional support - greatly affects the physical condition and the ability to cope at both the individual and family levels. The patient should be encouraged to talk about the disease and seek professional assistance.

Sharing feelings - family and friends are important sources of strength and support. The patient should be encouraged to openly and truthfully explain the situation to children and grandchildren.

Changes in daily life activities - Parkinson's Disease can sometimes turn basic activities that had been effortless into challenging tasks, such as bathing, dressing, eating, walking, and sleeping. It can be difficult to adjust to these changes, and it is very important to find ways to alleviate the burden they impose. For example, learning about risks, such as falls, from online as well as professional resources can go far to prevent them and considerably enhance the quality of life.

Proper nutrition - professionals are available for consultation in personalized adjustment of diets and drinking habits to best help the patient cope with problems associated with food and drink.

Exercise and movement - exercise improves the body's coping with Parkinson's Disease. It may slow the progression of the disease and even improve cognitive and emotional aspects. The patient is highly encouraged to choose the most suitable activities and incorporate them into their daily routine.

Dental health - the characteristics of the disease can cause complications in oral health. It is imperative to treat dental problems in the early stages and meticulously maintain oral hygiene.

Social networks, support groups and classes – the patient should be made aware of the many available resources and be encouraged to join them for support, for sharing challenges and for discovering a community of understanding and compassionate friends.

Sex life - the disease also has an effect on sex life. Help is forthcoming from a professional team, and literature on the subject is available. It is especially important that the patients do not hesitate to talk about this important aspect of their relationships with their partners.

External therapeutic help - at a certain stage, external help in the form of therapy or nursing may be needed. It will require proper planning of the place of residency, the need for mobility aids and more.

Bureaucracy, administration and finances - living with a degenerative disease provides considerable engagement with authorities, not just with medical institutions. Patients with Parkinson’s Disease have rights of which they must be aware, in addition to identifying the means of accessing various organizations for assistance, the knowledge of relevant insurance policies, and the awareness of the effects of the disease on personal finances. Social services are available for guidance, and the patient should not hesitate to access them.

Wish you all good luck!