Kerstin E. finds some glances from strangers unpleasant.

Kerstin E. trova sgradevoli alcuni sguardi di estranei.

Kerstin E.: E mi accorgo che a volte la gente pensa: "Ah, questa donna è ubriaca o ha qualcos'altro o è un po' pazza?". E lo trovo disgustoso.
Intervistatore: Anch'io.
Kerstin E.: Ma mio marito e mia figlia mi dicono: "Non devi preoccuparti degli altri". Ma è proprio così, è difficile.

Sguardo sgradevole

Kerstin E. trouve certains regards de personnes inconnues désagréables.

Kerstin E. : Et je trouve que parfois les gens regardent comme ça [en se disant] "ah, cette femme est ivre ou elle a quelque chose d'autre ou elle est un peu folle". Et je trouve ça dégoûtant.
Intervieweuse : Moi aussi.
Kerstin E. : Mais mon mari et ma fille me disent "tu n'as pas à t'occuper des autres personnes". Mais justement, c'est difficile.

Regards désagréables

Kerstin E. empfindet manche Blicke von Fremden als unangenehm.

Kerstin E.: Und ich finde, manchmal schauen die Leute so [nach dem Motto], "ah, ist diese Frau betrunken oder hat sie sonst irgendetwas oder sie spinnt ein bisschen." Und das finde ich eklig. 
Interviewerin: Ich auch.
Kerstin E.: Aber mein Mann und meine Tochter sagen mir, "du musst dich doch nicht um die anderen Leute kümmern." Aber eben, das ist schwer.

Unangenehme Blicke

Yolanda

Kerstin E.: And I find that sometimes people look [like], "ah, is this woman drunk or does she have something else or is she a bit crazy." And I find that disgusting.
Interviewer: Me too.
Kerstin E.: But my husband and my daughter tell me, "you don't have to worry about the other people." But that's just it, it's hard.

Unpleasant looks

Dealing with one's own illness in public and the reactions of strangers to visible symptoms (e.g. swaying gait) can be challenging and not always pleasant. However, positive experiences are also reported, for example the consideration of others in public transport. The need for social contacts changes, affected persons report that they meet friends less often, up to the feeling of isolation when contacts with former colleagues break off completely. Talking about one's own illness is on the one hand relieving, especially if it serves to explain oneself, but on the other hand it can also become too much.

Social life

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

Kerstin E. is misdiagnosed with an essential tremor.

So it started in 2001. Then my daughter and my husband said, "What are you shaking about?" So I told them, "Ah, it'll pass." And then my husband said, "You need to see a doctor." And I thought, "Oh, no, it'll pass." And it just kept getting a little bit worse. And then my daughter said to the doctor, because she goes to the same doctor as me, "My mother is shaking like this, what is it?" And then he examined me and sent me to a neurologist. And he found that I had an essential tremor. And then we treated that and that didn't get better. In 2002, at the end of 2002, I went to another neurologist. He said, "You have 89 percent Parkinson's." Then the world fell apart for me.

Misdiagnosis "essential tremor"

The diagnosis of Parkinson's disease is made on the basis of the neurological examination findings and, if necessary, by means of imaging procedures (e.g. SPECT). A positive L-dopa test also indicates a typical Parkinson's disease. For those affected, the path from noticing the first signs to an official diagnosis of Parkinson's varies. Although, according to the literature, the first formulated diagnosis is correct in the majority of cases, patients and relatives in the early stages of the disease also report medical misjudgements, misdiagnoses and mistreatments. A prolonged uncertainty about the cause of the symptoms is experienced as difficult and the receipt of the diagnosis of PD on the one hand as devastating, but on the other hand also as a relief that there is clarity. Disputes with cost units about the assumption of diagnostic examinations are also reported.

The path to diagnosis

I have the feeling that my personality has been turned around a bit. I am no longer the same person I was before. I was so friendly and nice before. And today I am a bit [...] so toxic almost. Sometimes I even give a poisonous answer to my husband. I feel like that's not very good. But I can't help it.

Interviewer: And you think that this change has to do with the disease?

Kerstin E.: Sure. 100 per cent. Because it has come on stronger now.

Interviewer: Since when?

Kerstin E.: Since I could no longer walk. That was the worst thing for me.

Irritability

People with Parkinson's disease and their relatives report that the changes that occur as the disease progresses also have an impact on the personality of the person affected over time. The impression of "no longer being the same" as before is expressed by relatives and affected persons alike. What exactly this means for the individual varies. While some perceive themselves as more unfriendly or anxious, others report changes in the perception of their own emotionality, the loss of humour or increasing withdrawal (e.g. when impulse control disorders exist).

Personality

Kerstin E. made the decision to have the operation together with her family.

Because I had to take more and more medication, he [the doctor] said, "what about deep brain stimulation? That would be something for you" and "You would still be at that age." Because deep brain stimulation is only done up to a certain age, I think. And above all, you have to meet criteria beforehand, you also have to be psychologically suitable for deep brain stimulation, you must not be suicidal. And then I was in the geriatric ward in D [place]. They also tested me. Then I went to the sleep lab. And then everything was fine when I decided to have deep brain stimulation. And when I decided to have deep brain stimulation, my daughter also came with me to the doctor, I wanted to show him somehow that everyone agreed, not only me, but also my closest environment, my husband and my daughter.

Joint decision

The reasons why people decide to have deep brain stimulation are usually related to the heavy burden of the symptoms of Parkinson's disease and the hope that these will become less severe after the procedure and that the quality of life will improve. Before agreeing to have the surgery, people need time to think about the risks, also together with their family, and also get a second opinion.

Kerstin E.

Unpleasant looks

Video Interview

Related experiences

Other experiences by Kerstin E.

Kerstin E.