Katharina M. encouraged her husband to have the operation.

Katharina M. ha incoraggiato il marito a sottoporsi all'operazione.

Intervistatore: E qual è stato il suo ruolo nella decisione?  
Katharina M.: Ah, l'ho incoraggiato. L'ho incoraggiato perché con questi farmaci e poi questa discinesia, che era veramente, non si poteva camminare dietro a lui perché [...] aveva anche il bastone e lo faceva volare per aria. Non riesce a comandare le braccia, soprattutto le braccia.

Incoraggiamento dei parenti

Katharina M. a encouragé son mari à se faire opérer.

Intervieweuse : Et quel était votre rôle dans la décision ?  
Katharina M. : Ah moi je l’encourageais. Moi j’encourageais parce qu’avec ces médicaments, puis cette dyskinésie, c’était vraiment, on pouvait pas marcher derrière lui parce qu'[...]en plus il avait les bâtons, c’était le bâton qui vient en l’air. Il fait pas, il peut pas donner des ordres à ses bras, surtout les bras.

Encouragement des proches

Katharina M. hat ihren Mann ermutigt die Operation vornehmen zu lassen.

Interviewerin: Und was war Ihre Rolle bei der Entscheidung?  
Katharina M.: Ah, ich habe ihn ermutigt. Ich habe ihn ermutigt, weil mit diesen Medikamenten und dann dieser Dyskinesie, das war wirklich, man konnte nicht hinter ihm gehen, weil [...]außerdem hatte er die Stöcke, das war der Stock, der in die Luft kommt. Er macht es nicht, er kann seinen Armen, vor allem den Armen, keine Befehle geben.

Ermutigung von Angehörigen

Corine

Interviewer: And what was your role in the decision?  
Katharina M.: Ah, I encouraged him. I encouraged him because with these medications and then this dyskinesia, that was really, you couldn't walk behind him because [...] also he had the canes, that was the cane that goes in the air. He doesn't do it, he can't give commands to his arms.

Encouragement of relatives

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.

Decision making

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

Yolanda

Katharina M. is glad that her husband can do a lot on his own.

Interviewer: You have the impression that it is stable.  
Katharina M.: Yes, yes.  
Interviewer: It's the autonomy.  
Katharina M.: It's the autonomy, that he can do everything himself. Well, if you have to take a person now and then to do the toilet if you have to, but maybe I don't know.  
Interviewer: But today he does his toilet all by himself?  
Katharina M.: Yes, all by himself.  
Interviewer: He is independent, independent in all these things.  
Katharina M.: Yes, yes. So he also goes to the doctor, he still drives, he's allowed to, he did the check-up again this year. So he's quite, yes, he goes to physio, he doesn't make long journeys, but he likes this independence in the end, going to yoga, it's good that he does all that.

Be independent

Due to the motor and non-motor symptoms of Parkinson's disease, affected people need support in their everyday activities as the disease progresses. The extent to which people with Parkinson's disease still feel self-determined varies. The topic of mobility, whether in the form of being able to drive a car or to leave the house alone, is central here. This also includes the ability to implement one's own plans and to "do things alone".

Self-determination

Katharina M. reports that the timing of taking medication is important and has an influence on the effect.

You have to wait for the medication, but just the medication was good, but the neurologist said it had to be taken at a certain time, very punctual, like a clock every two hours, every three hours, but not that it makes yoyos and spikes, and that was the risk. And a neurologist said, "Yeah, but if you eat, your stomach will absorb the food and not absorb the drug into your brain, it won't work." So there are favorable moments when the drug is not almost diluted or has no effect. But they don't tell us that so much at the beginning, we look and then when he tells us "but you take it daily at a certain time", my husband "yes more or less", and then he didn't say it has to be very linear because if you do peaks, at some point you have too much medication, then you have too little of it. So that's more difficult to manage than the surgery I think.

Time of intake

In Parkinson's disease, the time at which the medication is taken plays a central role, as its effect also depends on this. Depending on the group of medications, they should, for example, be taken with a certain time interval before or after a meal (e.g. levodopa) or with a meal (e.g. dopamine antagonists). If the medication is taken at the wrong time, this can lead to an intensification of the symptoms. Those affected report their experiences in this regard and talk about what helps them not to forget to take the medication.

Drug management

Katharina M. reports that her husband has the settings checked in hospital.

Interviewer: Who controls the stimulation, was it them?  
Katharina M.: [...] [Then] control we just have to go to [name of hospital] or it would be [place], because I said we could go to [place], but [...].

Hospital control

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.

Technical aspects

Katharina M.'s husband has tried speech therapy and has adjusted the diet.

Katharina M.: Parkinson's disease is muscular. He goes to a speech therapist, he was also for nutrition, to do the diet, he has done many different treatments. He is being looked after well because there is a problem that he sometimes strangles and that swallowing sometimes doesn't work.

Speech therapy

Physiotherapy can improve the mobility of people with Parkinson's disease and help them to stay active for longer. Affected people report various forms of therapy (e.g. occupational therapy, speech therapy) that help and targeted offers for people suffering from Parkinson's disease.

Katharina M.

Encouragement of relatives

Related experiences

Other experiences by Katharina M.

Katharina M.