Ester O. did not notice at first that her husband had developed a drinking problem.

Ester O. non si accorse subito che il marito aveva sviluppato un problema di alcolismo.

Sì, non si potevano più fare escursioni o andare in montagna in quel modo. Era sempre stanco e voleva solo stare a casa. E poi lavoravo ancora due giorni a settimana. Poi ha iniziato ad avere problemi con l'alcol e i farmaci. E poi la situazione è peggiorata. All'inizio non l'ho notato. Io stavo lavorando, poi lui ha preso un taxi, è andato a comprare qualcosa e ha nascosto le bottiglie ovunque. E questo insieme ai farmaci. Poi ha avuto [...] delle allucinazioni. E avevo anche paura.

Preoccupazione

Ester O. n'a d'abord pas remarqué que son mari avait développé un problème d'alcool.

Oui, on ne pouvait plus faire de randonnées ou aller à la montagne. Il était toujours fatigué et voulait juste rester à la maison. Et puis je travaillais encore, deux jours par semaine. Et puis il a commencé à avoir des problèmes d'alcool et de médicaments. Et c'est devenu encore pire. Je ne l'ai pas remarqué au début. Je travaillais, puis il a simplement pris un taxi et est allé acheter quelque chose et a caché les bouteilles partout. Et cela en même temps que les médicaments. Ensuite, il [...] a commencé à délirer. Et moi aussi, j'ai eu peur.

S'inquiéter

Ester O. hat zuerst nicht gemerkt, dass ihr Mann ein Alkoholproblem entwickelt hat.

Ja, man konnte nicht mehr so wandern oder in die Berge gehen. Da war er immer müde und wollte nur zu Hause sein. Und dann ich habe noch gearbeitet, zwei Tage die Woche. Und dann hat er Probleme bekommen auch noch mit Alkohol und Medikamenten. Und dann ist es noch schlimmer geworden. Ich habe es zuerst nicht gemerkt. Ich habe gearbeitet, dann hat er einfach ein Taxi genommen und ist etwas kaufen gegangen und hat die Flaschen überall versteckt. Und das zusammen mit den Medikamenten. Dann hat er [...] Wahnvorstellungen bekommen. Und ich habe auch Angst gehabt.

Sich sorgen

Yolanda

Yes, you could no longer go hiking or go to the mountains like that. He was always tired and just wanted to be at home. And then I still worked two days a week. And then he started having problems with alcohol and medication. And then it got worse. I didn't notice it at first. I was working, then he just took a taxi and went to buy something and hid the bottles everywhere. And that together with the medication. Then he got [...] delusions. And I was also afraid.

Worry

The symptoms of Parkinson's disease affect many areas of life. Being confronted with one's own changes can be stressful and difficult. Affected people report, for example, impatience with themselves or anger when they notice that things are no longer possible at the desired pace. Feelings of shame due to the visibility of symptoms are also mentioned. Those affected also feel isolated, for example because contact with former work colleagues no longer exists. Problematic behavioural changes also include impulse control disorders, which can occur in patients with PD (e.g. as a side effect of medication). Among other things, these can lead to substance abuse (e.g. alcohol consumption), which can also cause particular psychological stress for relatives.

Burdens and Difficulties

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

Esther O. notices that her husband also has difficulties with the cutlery.

So, in February 2016 my daughter and my husband went skiing, they like to ski together, but me and my younger daughter do not. Then they used to go to the mountains together and come back home in the evening. Then my daughter came and said, "There is something wrong with the father. He fell over standing up, just like that." She couldn't pick him up and had to wait until someone came. And then they put him up. Then she told me and I asked him, "What's wrong, are you not well?". Then he said, "Yes I am, I am fine, I am tired". And then I also saw that with his left hand he always takes the fork like this on the other side. Then I said again, "There is something". Then he said, "No, I'm just tired". He was also a little angry because I always asked. But then he got stomach problems, pretty bad, stomach ache and stuff. Then I had to go to the family doctor. That was in May. And then the family doctor said, "There's something wrong with you. The way you walk, it's weird."

Difficulties with fine motor skills

Parkinson's disease begins insidiously and often shows only very mild symptoms at the beginning. Initial symptoms are often still vague and unspecific. Those affected report the first impression that something is wrong and the difficulty in classifying this, but also more obvious symptoms. Relatives talk about seeing the disorder from their perspective and also about how they have experienced communicating their perceptions to family members with the disorder.  Early signs include difficulty seeing, difficulty concentrating, or fatigue. More obvious symptoms include tremors or limitations in mobility, such as not being able to walk at the usual pace. The symptoms are often noticed by sudden difficulties in doing everyday things. The first changes are also noticed during sports. Relatives observe the first changes in motor skills or behavior.

First signs of change

Depending on the setting, Esther O.'s husband became more aggressive.

If the setting was a bit too high, he had aggression again. And that's still the case. So when we went [once] for a check-up, then he had such strong aggression [afterwards] that they brought him back to P [Hospital] as an emergency, 2017. He didn't want to. [...] I had already noticed, as soon as we were out of the hospital, "this is not good." But he didn't want to go back [to the hospital]. After a week it was no longer bearable. Then I told the doctors, "it's not working" [and said] they should put him back. And then the doctor said "he should come immediately". But he [the husband] didn't want to. But I was at work. And then the police had to pick him up again to go to the P [hospital]. And there he also acted aggressively in the emergency.

Aggressionen

Patients who have experienced a significant improvement in their symptoms describe the time immediately after the surgical intervention for deep brain stimulation as a flight of fancy, similar to the feeling of being reborn. How quickly the improvement of symptoms through deep brain stimulation sets in, how long it lasts and whether there is any improvement at all varies from individual to individual. The reported effects are varied and include improved mobility, a decrease in tremors, improved speech expression or even improved facial expressions. On the other hand, a slight, short-lasting or complete lack of improvement in symptoms often leads to feelings of disappointment among those affected and also their relatives. While some patients do not need to take any or less medication, others continue to take the same amount of medication as before the deep brain stimulation.

Life after the Deep Brain Stimulation

Esther O.'s husband is no longer allowed to operate the control unit himself because he regulates it too high.

Ester O.: He is no longer allowed to operate the device himself. They have blocked it.
Interviewer: So the neurologist.
Ester O.: Yes, from the P [hospital name].
Interviewer: So he used it a bit too much?
Ester O.: Yes. He didn't stick to what he was told. They stopped it, then he said, "maybe zero point five more" or something. And then he just stopped two or three and [...] the doctor just said that it wasn't possible.
Interviewer: And what happened when he stimulated too much? What happened?
Ester O.: Then the over-movements came again. [...] And then he turned it down again and up again and every hour four or five times. That's not possible.
Interviewer: But they were over-movements, like before the operation, so from the body or [was it] psychological, so hyperactivity or something?
Ester O.: Yes, he was hyperactive.
Interviewer: But there was no hyperactivity, like before the operation?
Ester O.: No. [...] And then he regulated down [the device] again [...]. And they had difficulties to adjust him so that it's normal. And now sometimes he tries a little bit more, the neurologist, [...] but my husband, he would like to have more and so. And the neurologist says, "no, he gets aggressive again."
Interviewer: Is he still aggressive?
Ester O.: Yes. If too much is adjusted, he becomes aggressive.
Interviewer: Yes, of course.
Ester O.: It goes to the aggression centre [in the brain] [...], he said so.

Too much regulation

Dealing with the technical aspects of deep brain stimulation relates to the programmable settings of the pacemaker (primarily the stimulation amplitude or strength), the change and life of the batteries, and the electrodes in the brain. Professionals usually do most of the programming of the pacemaker. However, it is possible for patients to change the parameters within a defined range via a remote control device if they wish to do so and are capable of doing so. While some use this option, others only allow settings to be made or controlled by specialist staff. The effect of deep brain stimulation depends on whether the electrodes are properly connected to the device, but this is not always the case and may require another operation.

Ester O.

Worry

Related experiences

Other experiences by Ester O.

Ester O.