For Luca M., self-determination means being able to realise one's own goals.

Per Luca M., autodeterminazione significa essere in grado di realizzare i propri obiettivi.

Intervistatore: Cosa significa per voi autonomia o indipendenza?  
Luca M.: Significa essere in grado di raggiungere gli obiettivi che ci si è prefissati, questo è certo. E poi sì, poter decidere quando e come fare qualcosa, un'attività [...] lo sci di fondo, anche se non c'è abbastanza neve, la neve è troppo dura, non ci vado lo stesso.  
Intervistatore: Quindi fai ancora sci di fondo?  
Luca M.: Sì, faccio sci di fondo, sì. E sono anche riuscito a cadere una volta.  
Intervistatore: Si rialza quando cade?  
Luca M.: Sì, sì, sì.  
Intervistatore: Ah, bene. Quindi, in termini di autonomia e indipendenza, come si sente?  
Luca M. Sì, bene ma è quando faccio questi piccoli movimenti e mi fermo, mi muovo e cado più spesso. E questo non è molto piacevole, da un lato, e dall'altro, avevo un po' paura che la scossa potesse colpire la testa. Ma che questo shock possa avere un'influenza, non credo proprio. È una domanda che mi farò, e che potrei porre la prossima volta ai neurologi.

Autogol

Pour Luca M., l'autodétermination signifie pouvoir réaliser ses propres objectifs.

Intervieweuse : Que signifie pour vous autonomie ou indépendance ?  
Luca M. : C’est de pouvoir faire ce dont où on atteint les buts qu’on s’est fixés, ça c’est certain. Et puis oui de pouvoir décider quand et comment je peux faire quelque chose, une activité [...] ski de fond, bien qu’il n’y a pas assez de neige, que la neige est trop dure, je vais quand même pas.  
Intervieweuse : Là vous faites encore du ski de fond ?  
Luca M. : Oui je fais du ski de fond, oui. Et j’ai réussi à tomber aussi, une fois.  
Intervieweuse : Vous vous relevez quand vous tombez ?  
Luca M. : Oui, oui, oui.  
Intervieweuse : Ah bien. Donc en termes d’autonomie et d’indépendance, vous vous sentez comment ?  
Luca M. : Oui, c’est bien, mais c’est quand je fais ces petits déplacements et arrêt, déplacement, j’ai plus souvent des chutes. Et ça c’est pas très agréable d’un côté, et puis j’avais un peu peur est-ce que le choc de toucher la tête. Mais est-ce que ce choc-là pourrait avoir une influence, mais je crois pas. Et ça c’est une question que je me poserai, je pourrais la poser la prochaine fois avec les neurologues.

Objectifs

Selbstbestimmung heisst für Luca M., eigene Ziele umsetzen zu können.

Interviewerin: Was bedeutet für Sie Autonomie oder Unabhängigkeit?  
Luca M.: Es bedeutet, das tun zu können, wo man die Ziele erreicht, die man sich gesetzt hat, das ist sicher. Und dann ja, entscheiden zu können, wann und wie ich etwas tun kann, eine Aktivität [...] Skilanglauf, obwohl es nicht genug Schnee gibt, der Schnee zu hart ist, gehe ich trotzdem nicht.  
Interviewerin: Da machen Sie immer noch Skilanglauf?  
Luca M.: Ja, ich mache Skilanglauf, ja. Und ich habe es auch geschafft, einmal zu stürzen.  
Interviewerin: Stehen Sie wieder auf, wenn Sie hinfallen?  
Luca M.: Ja, ja, ja.  
Interviewerin: Ah gut. Also in Bezug auf Autonomie und Unabhängigkeit, wie fühlen Sie sich?  
Luca M.: Ja, es ist gut, aber es ist, wenn ich diese kleinen Bewegungen mache und Halt, Bewegung, ich habe öfter Stürze. Und das ist einerseits nicht sehr angenehm, und andererseits hatte ich ein bisschen Angst, dass der Schock den Kopf treffen könnte. Aber ob dieser Schock einen Einfluss haben könnte, aber ich glaube nicht. Und das ist eine Frage, die ich mir stellen werde, ich könnte sie beim nächsten Mal mit den Neurologen stellen.

Eigene Ziele

Corine

Interviewer: What does autonomy or independence mean to you?  
Luca M.: It means being able to do what you set out to do, that's for sure. And then yes, being able to decide when and how I can do something, an activity [...] Cross-country skiing, even though there's not enough snow, the snow is too hard, I still don't go.  
Interviewer: So you still go cross-country skiing?  
Luca M.: Yes, I do cross-country skiing, yes. And I've also managed to fall once.  
Interviewer: Do you get up again when you fall down?  
Luca M.: Yes, yes, yes.  
Interviewer: Ah good. So in terms of autonomy and independence, how do you feel?  
Luca M.: Yes, it's good, but it's when I make these little movements and stop, move, I have falls more often. And on the one hand that's not very pleasant, and on the other hand I was a bit afraid that the shock might hit my head. But whether this shock could have an influence, but I don't think so. And that's a question I'm going to ask myself, I could ask it the next time I see the neurologist.

Own goals

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

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

Yes I think I have to go back to the accident I had at the factory where I was working so at A [location]. On that day I  had returned from India. I had been to work too, and it started to rain. So I took the bike to get home quickly, only I didn't see that where I wanted to drive by, there was a truck parked. I saw it at the last moment, so I hit the truck and they took me to the hospital in B [location]  and then I was out of action for several months. So no more work. Then I went back to work and at one point I had epilepsy, epileptic fits. We went through a phase where we reduced the dosage of Tegretol, which is the medication to treat epilepsy. That didn't work because I had another epileptic seizure. I had three or four epileptic seizures in total. But after that it was over. But during this phase when we were trying to lower the dosage, there was a tremor. A slight tremor in the right hand that I observed.  So I asked the doctor who said: "I'm sorry, you're relatively young", I was 52, "but unfortunately you have Parkinson's disease."

Impaired roadworthiness

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

Luca M. knows that his wife is also suffering.

Interviewer: And with your wife?  
Luca M.: That's also difficult to say. But she certainly suffers too. The fact that I have Parkinson's, I don't know if you're married, if your partner had this disease, how would you be? In my opinion, the wife or the partner suffers.  
Interviewer: Is that your feeling? Do you feel that?  
Luca M.: Yes, yes.  
Interviewer: You feel that this suffering is more or less severe than your own.  
Luca M.: Yes, I would even say that it is greater than my own, yes.  
Interviewer: Can you give me an example of a situation, a moment that can express this, that explains it? An example?  
Luca M.: When you go to the movies, for example, I'm forced to go into the theater where the projection is above or below you, but you can see very well that it's not above or below the lovers and that one of them needs help. You could say that.

The suffering of the partner

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

Luca M. has uncontrolled movements due to the medication.

That's how it is. So the dosage at the beginning works pretty well. It's called honey moon. So it went well, we also tried different types of medication. Apart from Stalevo. But the drug itself had an unpleasant effect, causing me to make a lot of involuntary movements.

Uncontrolled movements

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

Luca M. is afraid of malfunctions, but the positive sides outweigh them.

Interviewer: And you were a bit afraid of this intervention?  
Luca M.: Yes, yes, that's what I described.  
Interviewer: Yes, for example? Tell me, what fears?  
Luca M.: That just where there were the other dangers that were evaluated again with Mr. A [name], that you could have duds. That if you go down with the electrodes into this soft body where there are arteries that go through, if it hits an artery then it will probably cause death because the whole brain will be flooded with blood. So that's the most spectacular and worst thing that could happen. I was told about 5 %. 5 % is all well and good, but it always affects the others, we are never in the 5 %, fortunately.  
Interviewer: So it was a stressful operation for you?  
Luca M.: No, not that stressful. No, the positive side still outweighed the negative side, which seemed pretty unlikely.

Malfunctions

The non-everyday and long surgical procedure required for the treatment of deep brain stimulation triggers fears among those affected and their relatives. The fact that the operation takes place on such an important organ as the brain, where possible complications or mistakes can lead to momentous consequences in the lives of those affected, causes concern for those affected and their relatives. Another aspect that causes concern is the fact that the operation is partly performed while the patient is awake. Concerns are also expressed about the deep brain stimulation itself (e.g. its effect on behaviour).

Fears

Luca M. can do handicrafts again because he is no longer shaking.

Interviewer: And what are you better at now?  
Luca M.: I like screwing with a screwdriver, doing small handicrafts, I like tinkering, repairing toys, things like that. And that requires a certain skill that I didn't always have.
Interviewer: So the fact that you don't shake enables you to make all these small, precise hand movements.  
Luca M.: Exactly.

Fine motor skills

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

Luca M. forgets that he has a device in his brain.

Interviewer: Do you think you have a device in your brain, or do you forget it completely?                        
Luca M.: No, no. Yes, I feel it sometimes.  
Interviewer: You feel it a little.  
Luca M.: Can you see it? I don't know.  
Interviewer: Yes, not really, yes. So you forget about that actually.  
Luca M.: Yes, yes.  
Interviewer: You're thinking more about your batteries now.  
Luca M.: No, that doesn't bother me. No and then I was in H [place] in the medical baths and then I have batteries, which you can see of course, but that didn't bother me either.

Luca M.

Own goals

Related experiences

Other experiences by Luca M.

Luca M.