Jeanette F. misses that her husband no longer accompanies her to social events.

A Jeanette F. sfugge il fatto che il marito non la accompagni più agli eventi sociali.

Non si prende la cosa così seriamente, così tragicamente. Nemmeno io ci riesco. Ma ci sono anche giorni in cui si vuole fare qualcosa e lui non viene a una festa di compleanno o a una celebrazione familiare o in chiesa, a un funerale, non viene. Ha paura, e tutte le persone che sono lì, non può. Poi riceve una, come dire, tale pressione che nulla funziona. Allora preferisce non venire. E devo sempre andarci da sola. Sarebbe bello se potesse essere presente anche lui.

Non accompagnato

Jeanette F. regrette que son mari ne l'accompagne plus lors d'événements mondains.

On ne prend pas les choses au sérieux, si tragiquement. Je ne peux pas non plus. Mais il y a aussi des jours où on veut faire quelque chose ou qu'il ne vient pas à une fête d'anniversaire ou à une fête de famille ou à l'église lors d'un enterrement, il ne vient pas. Il a peur, et toutes ces personnes là-bas, ce n'est pas possible. Il subit alors une, comment dire, une telle pression que rien ne va plus. Alors il préfère ne pas venir. Et je dois toujours y aller seule. Ce serait bien s'il pouvait aussi être là.

Sans accompagnement

Jeanette F. vermisst es, dass ihr Mann sie nicht mehr zu gesellschaftlichen Anlässen begleitet.

Man nimmt es nicht so genau, so tragisch. Das kann ich auch nicht. Aber es gibt auch Tage, wenn man etwas machen will oder wenn er nicht an ein Geburtstagsfest oder eine Familienfeier kommt, oder in die Kirche bei einer Beerdigung, da kommt er nicht. Er hat Angst, und die vielen Leute dort, das geht nicht. Dann bekommt er eine, wie sagt man, so einen Druck, dass gar nichts mehr läuft. Dann kommt er lieber nicht mit. Und ich muss immer allein gehen. Es wäre schön, wenn er auch dabei sein könnte.

Ohne Begleitung

Yolanda

You don't take it so seriously, so tragically. I can't either. But there are also days when you want to do something or he doesn't come to a birthday party or a family gathering or to church at a funeral, he doesn't come. He's afraid, and all the people there, he can't. Then he gets a, how do you say, such a pressure that nothing works. Then he'd rather not come. And I always have to go alone. It would be nice if he could be there too.

Unaccompanied

The everyday life of family caregivers varies depending on the illness-related needs of the respective family member. Accompanying or bringing the family member to doctor's appointments, getting medicines or taking on additional household tasks and responsibilities in everyday family life are among the tasks that family members report. These and the feeling of always having to be there can be a burden and also cause excessive demands. Paying attention to one's own needs, allowing oneself space and, if necessary, taking advantage of support with care are important strategies for coping with everyday life. Relatives also describe situations in which it is difficult to accept the suffering of their partner and their own powerlessness in the face of it. Here, it is helpful for some to talk to other people about their own situation and experiences.

Daily life of family caregivers

Parkinson's disease is a progressive neurodegenerative disease affecting both the central and peripheral nervous system. Symptoms are very heterogenous and include motor (e.g., tremor, slow movements, muscle rigidity) and non-motor symptoms (e.g., depression, sleep disturbances, anosmia). Parkinson's disease can lead to a loss of autonomy and self-esteem, altered relationships and social isolation.Communication impairment is also common and is associated with both motor and cognitive disturbances. Many people who suffer from Parkinson's disease increasingly lose their ability to work and their mobility is more and more restricted. Parkinson's disease is a challenge not only for the patients, but also for family caregivers, who must balance their own needs with caregiving responsibilities. Two important treatment options for Parkinson's disease in the advanced stage are deep brain stimulation and the Duodopa® pump. Deep brain stimulation is a brain modulation technique that works like a heart pacemaker and requires neurosurgical intervention. The Duodopa® pump consists of a continuous infusion of levodopa-carbidopa gel via a pump across the intestinal wall into the intestine.
For the DIPEx module on Parkinson's, we conducted 32 interviews with people with Parkinson's disease and family caregivers. Interview excerpts in the form of texts, video or audio clips, as well as drawings, make it possible to experience how the disease and its therapy affect the daily lives of those affected and their relatives.

La malattia di Parkinson è una malattia neurodegenerativa progressiva che colpisce il sistema nervoso centrale e periferico. I sintomi sono vari e comprendono sintomi motori (ad esempio tremore, movimenti lenti, rigidità muscolare) e non motori (ad esempio depressione, disturbi del sonno, anosmia). Il morbo di Parkinson può comportare una perdita di autonomia e di autostima, alterazione delle relazioni e isolamento sociale. Anche i disturbi della comunicazione sono comuni e sono associati a disturbi motori e cognitivi. Molte persone con malattia di Parkinson sono sempre più limitate nella loro capacità di lavorare e nella loro mobilità con il progredire della malattia. La malattia di Parkinson rappresenta una sfida non solo per la persona affetta, ma anche per i familiari che la assistono e che devono trovare un equilibrio tra le proprie esigenze e quelle del paziente.
Due importanti trattamenti clinici attuali per la malattia di Parkinson avanzata sono la stimolazione cerebrale profonda e la pompa Duodopa®. La stimolazione cerebrale profonda è una tecnica di modulazione dell'attività cerebrale che funziona in modo simile a un pacemaker e richiede un intervento neurochirurgico. Con la pompa Duodopa® , un'infusione continua di un gel di levodopa-carbidopa viene erogata tramite una pompa attraverso la parete intestinale nell'intestino tenue.
Per il modulo DIPEx sulla malattia di Parkinson, abbiamo condotto interviste con 32 persone affette da Parkinson in fase avanzata e con i loro familiari. Gli estratti delle interviste, sotto forma di testi, video o clip audio e disegni, mostrano come la malattia e la sua terapia influenzino la vita quotidiana delle persone colpite e dei loro familiari.

Malattia di Parkinson: stimolazione cerebrale profonda e pompa Duodopa

La maladie de Parkinson est une maladie neurodégénérative progressive touchant plusieurs régions du système nerveux central et périphérique. Les symptômes divers comprennent des symptômes moteurs (p. ex. tremblements, mouvements lents, rigidité) et non moteurs (p. ex. dépression, troubles du sommeil, anosmie). La maladie de Parkinson peut entraîner une perte d'autonomie et d'estime de soi, une modification des relations et un isolement social. Les difficultés de communication sont également fréquentes et sont associés à la fois aux troubles moteurs et cognitifs. De nombreuses personnes atteintes de la maladie de Parkinson se voient restreintes dans leur mesure de travailler ainsi que dans leur mobilité au fur et à mesure que la maladie progresse. La maladie de Parkinson présente un défi non seulement pour les patient·e·s, mais aussi pour les proches aidants, qui doivent concilier leurs propres besoins et leurs responsabilités en matière de soins. Pour les formes graves de la maladie de Parkinson, les deux principaux traitements sont actuellement la stimulation cérébrale profonde et la pompe Duodopa®. La stimulation cérébrale profonde consiste à moduler l'activité cérérbrale tel le ferait un pacemaker pour le cerveau, impliquant une intervention neurochirurgicale. La pompe Duodopa® consiste en une perfusion intrajunale continue de gel de lévodopa-carbidopa via une pompe traversant la paroi intestinale.
Le module DIPEx sur la maladie de Parkinson rapporte les expériences de 32 personnes qui soit sont atteintes de la maladie de Parkinson et ont été traitées par stimulation cérébrale profonde ou par la pompe Duodopa®, soit sont des proches aidants. Des extraits d'entretiens sous forme de texte, de vidéo ou de clip audio, ainsi que des dessins donnent un aperçu de la façon dont la maladie et son traitement affectent le quotidien des personnes atteintes de la maladie de Parkinson ainsi que celui de leurs proches.

Maladie de Parkinson : stimulation cérébrale profonde et pompe Duodopa

Morbus Parkinson ist eine fortschreitende neurodegenerative Erkrankung, die das zentrale und periphere Nervensystem betrifft. Die Symptome sind vielfältig und umfassen motorische (z.B. Tremor, langsame Bewegungen, Muskelstarre) und nicht-motorische Symptome (z. B. Depression, Schlafstörungen, Anosmie). Morbus Parkinson kann zu einem Verlust an Autonomie und Selbstwertgefühl, veränderten Beziehungen und sozialer Isolation führen. Kommunikationsstörungen sind ebenfalls häufig und sowohl mit motorischen als auch mit kognitiven Störungen verbunden. Viele Menschen mit Parkinson sind im Verlauf der Krankheit zunehmend in ihrer Arbeitsfähigkeit und ihrer Mobilität eingeschränkt. Eine Parkinson-Erkrankung ist nicht nur für die Betroffenen selbst eine Herausforderung, sondern auch für betreuende Angehörige, die ein Gleichgewicht zwischen eigenen Bedürfnissen und den Bedürfnissen der Patienten finden müssen.
Zwei wichtige aktuelle klinische Behandlungen der fortgeschrittenen Parkinson-Krankheit sind die tiefe Hirnstimulation und die Duodopa®-Pumpe. Die tiefe Hirnstimulation ist eine Technik zur Modulation der Hirnaktivität, die ähnlich wie ein Herzschrittmacher funktioniert und eine neurochirurgische Intervention voraussetzt. Bei der Duodopa®-Pumpe erfolgt eine kontinuierliche Infusion eines Levodopa-Carbidopa-Gels via eine Pumpe über die Darmwand in den Dünndarm.
Für das DIPEx Modul zu Parkinson haben wir Interviews mit 32  Menschen, die in einem fortgeschrittenen Stadium an Parkinson erkrankt sind und betreuenden Familienangehörigen geführt. In Interviewausschnitten wird in Form von Texten, Video- oder Audioclips sowie anhand von Zeichnungen erfahrbar, wie sich die Krankheit und deren Therapie auf das tägliche Leben der Betroffenen und deren Angehörigen auswirkt.

Parkinson-Erkrankung: Tiefenhirnstimulation und Duodopa-Pumpe

Parkinson's disease: deep brain stimulation and duodopa pump

Kristina

Jeanette F. is glad that her son lives nearby.

Yes, it goes well with them [the children]. They always ask or help. If I want to go away one day, you will come. But he doesn't want to. He says "I'm not that sick after all". And that's the good thing that our son lives across the street. And if I go away once when he is at home, then he can look. Then I tell him, "I'm going out now", maybe shopping or visiting my aunt with 98 years and so or doing something else with colleagues. Then I make sure that it's over the weekend, that H [name] can look in on him and the girlfriend, that someone is there.

Live nearby

The diagnosis of Parkinson's affects many areas of life and also influences life and everyday life in the family. Despite the many restrictions and burdens that the disease usually brings with it, it is also reported that the cohesion and closeness within the family have increased due to the diagnosis. The physical proximity of other relatives is equally important and relieving for those affected and family members providing care. Depending on when the disease breaks out and whether or not there are children or grandchildren, other challenges arise (e.g. care, explaining the disease).

Family life

Jeanette F. feels no change in her relationship with her husband since he has Parkinson's disease.

Jeanette F.: No, I don't think so. We are still good friends like that.
Interviewer: That's nice.
Jeanette F.: There is no quarrel either. He doesn't like the argument anyway, he suffers. [...] Maurice doesn't like to suffer the argument. Then it's better not to say anything.

No changes

Parkinson's disease often has an influence on a couple's relationship. Changes are noticed by sufferers and also by partners of sufferers. In the area of communication, those affected report that conversations and talks have become more difficult, for example because the person with Parkinson's speaks in a quiet voice and is more difficult to understand, or when memory is impaired. Changes in the couple dynamics and in the respective roles are also reported, for example when the ill partner is increasingly unable or unwilling to make decisions, when questions of responsibility arise or when expectations of the partner change (e.g. on the subject of support). While for some people something unifying comes to the fore (e.g. being dependent on each other) and leads to the experience of more closeness, for others suffering - their own and their partner's - is a central issue that weighs on them.  Many of those affected also report that physical closeness and sexuality change.

Relationship

Jeanette F. finds it difficult to accept that she cannot always reassure her husband.

I am with him a lot and I like to calm him down and explain the symptoms. Sometimes it works. Sometimes he has the idea of voices and says, "you're crazy, you don't follow, you don't understand, you'll see it one day then." There's no one there, the voices he hears, voices that offend him. I'm glad when it rains and there are no people outside. Then he doesn't hear voices. Or many times people are still outside on a nice evening and they are still talking to each other. But he always says, "they are talking about me, about me, about me." That is very difficult to accept.

Acceptance

Jeanette F.'s husband suddenly starts having hallucinations.

Interviewer: When did the hallucinations start?
Jeanette F.: Yes, it was last summer, suddenly. He also had medication, [...] Sifrol. That's what made him have the hallucinations. They took the medication away and then it got better. He was in hospital for four more days. I just said, "it's not working anymore." He went to people, said that the children were screaming to him, that he had seen pictures and they were doing porn, and had cameras. He plucked away the cameras in the bedroom, he said, and in the office; he said he was being watched. Sometimes you just can't get it out of him that this is not real [...]. And that [...] already limits me.

Hallucinations

The symptoms of Parkinson's disease can be alleviated by drug therapy with various groups of drugs (e.g. levodopa, dopamine antagonists). At the beginning of the disease, the effect of the medication is usually good and leads to an improvement of the symptoms in many people (e.g. better mobility, reduction of muscle stiffness). However, as Parkinson's disease progresses, the effect wears off and the symptoms of the disease reappear. The subsequent intake of additional medication or increased doses often causes difficulties for those affected because of the increasing side effects and interactions (e.g. uncontrolled movements, hallucinations) and is also perceived as too much per se. Which medication is taken in which dose varies and depends on various factors (e.g. age, stage of disease, side effects).

Effects and side effects

Jeanette F. often feels tense when her husband is home alone.

Yes, that has changed already. You don't go out like that any more. You're always afraid that something will happen at home. For example "He's in bed again, he can't breathe." And then you're always [...] tense when you're only gone for an hour, whether something will happen at home.

Jeanette F.

Unaccompanied

Video Interview

Related experiences

Other experiences by Jeanette F.

Jeanette F.