Intervistatore: E quali sintomi del Parkinson ha? O l'hai fatto all'inizio?

Nadja W.: blocchi dal corpo, che non voleva più quello che volevo. Il corpo non ha reagito come volevo. [...] Ho avuto delle cadute. 

Intervistatore: E questo succede ancora? Avete ancora dei blocchi? 

Nadja W.: Sì, ho dei blocchi ogni giorno. 

Intervistatore: Ed è peggio di prima o meglio? 

Nadja W.: È sempre lo stesso.

Blocchi

Intervieweuse : Et quels sont les symptômes de la maladie de Parkinson que vous avez ? Ou en aviez-vous au début ?

Nadja W. : Des blocages du corps qui ne voulait plus fonctionner comme moi je le voulais. Le corps ne réagissait pas comme je le voulais. [...] J'ai fait des chutes. 

Intervieweuse : Et est-ce que cela arrive encore ? Avez-vous encore des blocages ? 

Nadja W. : Oui, j'ai des blocages tous les jours. 

Intervieweuse : Et est-ce que c'est pire qu'avant ou mieux ? 

Nadja W. : C'est toujours pareil.

Blocages

Interviewerin: Und welche Symptome von Parkinson haben Sie? Oder hatten Sie am Anfang?

Nadja W.: Blockierungen vom Körper, der nicht mehr so wollte wie ich. Der Körper reagierte nicht so, wie ich wollte. […] Ich hatte Stürze. 

Interviewerin: Und passiert das immer noch? Haben Sie immer noch Blockaden? 

Nadja W.: Ja, Blockaden habe ich jeden Tag. 

Interviewerin: Und ist es schlimmer als vorher oder besser? 

Nadja W.: Es ist immer noch gleich.

Blockaden

Yolanda

Interviewer: And what symptoms of Parkinson's do you have? Or did you have at the beginning?

Nadja W.: Blockages from the body, which no longer wanted the way I wanted. The body didn't react the way I wanted. [...] I had falls. 

Interviewer: And does that still happen? Do you still have blockages? 

Nadja W.: Yes, I have blockades every day. 

Interviewer: And is it worse than before or better? 

Nadja W.: It is still the same.

Blockages

The motor symptoms of Parkinson's disease include a slowing of movements, which can be noticeable in all parts of the body (e.g. legs, arms and hands, face). Sufferers report how the pace of walking decreases and how, later in the course, sudden blockages occur that also lead to falls. In addition to tremors, muscle stiffness is another symptom that sufferers and relatives describe, which is painful and can also intensify depending on the situation, for example during stress. Those affected also report over-movements in the advanced stages, which are particularly unpleasant for some.

Motor symptoms

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

Nadja W. experiences more closeness in the family.

Nadja W.: It has brought me closer to the family, people discuss more, also about the disease.

Interviewer: So you often talk about the disease with your family?

Nadja W.: Yes.

Interviewer: So for you the disease also has something positive?

Nadja W.: Yes. You get closer to each other.

Closeness

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

Nadja W. no longer has any physical contact with her husband.

Interviewer: would you say that your relationship with your husband changed somehow after the diagnosis?
Nadja W.: Yes.
Interviewer: Could you give me an example?
Nadja W.: There was no physical contact.

Body contact

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

In Nadja W.'s case, the insertion of the PEJ tube went well and without complications.

Interviewer: And how was the surgery when you got the pump? That needs a small operation, doesn't it?
Nadja W.: Yes, I did. I had to go to the hospital and then they put a tube through which a medicine flows into the small intestine.
Interviewer: And how was the operation?
Nadja W.: Fine.
Interviewer: Did you have to stay in hospital for long?
Nadja W.: No, it was a short operation, with anaesthesia, because I have over-movements and you can't operate with movements.

Placement of the PEJ probe

The surgical procedure to place the PEJ tube, through which the levodopa-carbidopa gel is delivered into the small intestine, is usually short. In order to test whether patients with Parkinson's disease could benefit from treatment with the Duodopa® pump, before the actual placement of the probe through the abdominal wall, a temporary probe can be placed through the nose to deliver the levodopa-carbidopa gel via the stomach into the small intestine. The individual response to the therapy is then observed.

The surgery

Nadja W. has fewer over-movements and blockages thanks to the pump.

Interviewer: Do you feel that the pump has improved your quality of life?
Nadja W.: Yes, [I have] less over-movement, less blockages.
[...]
Interviewer: I mean whether the pump has fulfilled these expectations you had.
Nadja W.: Yes. It is better.
Interviewer: Also the over-movements?
Nadja W.: Yes. Except when I am excited, then I also move more.

Effect

After starting treatment with the Duodopa® pump, patients report improvements in Parkinson's symptoms. Among other things, the decrease in blockages, the improvement in mobility and the disappearance of tremors are mentioned. The fact that treatment with the pump often eliminates the need to take medication is experienced as a great relief in everyday life. However, side effects are also described, such as an increase in over-movement.

Nadja W.

Blockages

Related experiences

Other experiences by Nadja W.

Nadja W.