Intervistatore: Ha avuto l'impressione che la malattia l'abbia cambiata come persona?
Marie V.: Non credo proprio. Dovrete chiederlo a mio marito.
Intervistatore: Chiederò di questo. Ma vi siete sentiti diversi?
Marie V.: Sì, in effetti mi sono sentita più libera. Perché ora devo sempre pensare alle medicine. Come un fumatore che poi deve portarsi dietro le sigarette, così io devo sempre pensare ai farmaci, che devo portare con me. E prima, me ne sono andato.

Non essere liberi

Intervieweuse : Avez-vous eu l'impression que la maladie vous a changé en tant que personne ?
Marie V. : Je ne pense pas. Il faut demander à mon mari.
Intervieweuse : Je vais demander. Mais vous êtes-vous sentie différente ?
Marie V. : Oui, en fait je me suis sentie plus libre. Parce que maintenant, je dois toujours penser aux médicaments. Comme un fumeur qui doit alors emporter ses cigarettes, je dois toujours penser à prendre les médicaments. Et avant, je partais tout simplement.

Être privé de liberté

Marie V. hat sich früher freier gefühlt.

Interviewerin: Hatten Sie den Eindruck, dass die Krankheit Sie als Person verändert hat? 
Marie V.: Das glaube ich nicht. Da müssen Sie meinen Mann fragen. 
Interviewerin: Ich werde danach fragen. Aber haben Sie sich anders gefühlt? 
Marie V.: Ja, eigentlich habe ich mich freier gefühlt. Denn jetzt muss ich immer an die Medikamente denken. Wie ein Zigarettenraucher, der dann seine Zigaretten mitnehmen muss, so muss ich immer an die Medikamente denken, dass ich die mitnehme. Und vorher bin ich einfach gegangen.

Unfrei sein

Yolanda

Interviewer: Did you have the impression that the disease changed you as a person?
Marie V.: I don't think so. You'll have to ask my husband about that.
Interviewer: I will ask about that. But did you feel different?
Marie V.: Yes, actually I felt freer. Because now I always have to think about the medication. Like a cigarette smoker who then has to take his cigarettes with him, so I always have to think about the medication, that I take it with me. And before, I just left.

Being unfree

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

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

As the disease progresses, Marie V. suffers increasingly from restlessness.

And then I had to go to the neurologist and he examined and confirmed that it was Parkinson's at the beginning. And then he gave medication and in the beginning I experienced the honeymoon, it went great. And the more the disease came, the more the movements came. And then when I was 66 years [old], I got it at 50, I lost ten kilos in half a year because I couldn't sit still anymore and I didn't eat as much food as I should.

[...]

Yes, the [illness] then came more and more. And then I always had to try out the pills that were good for me. Until I actually did the deep brain stimulation at 67.

Movement restlessness

Affected persons and relatives consider it fortunate when the disease progresses slowly and the usual life can be largely maintained for the time being. The increase in impairing symptoms (e.g. restlessness, severe forgetfulness), for example when the effect of medication wears off or when new symptoms are added over time, is a drastic moment that often requires or triggers adjustments (e.g. at work, in therapy, in the personal environment). Relatives report hoping that the condition of the ill family member will remain good for a long time and are concerned when it becomes apparent that this is not the case.

The progression of the disease

Not much changes in Marie V.'s family life.

Interviewer: How did the daughters deal with the disease?
Marie V.: Yes, it just came upon us and I didn't give it much thought.
Interviewer: And do you think that you had the feeling that the illness had somehow changed life in the family, i.e. the dynamics in the family, the routine?
Marie V.: No. I continued to do what I always did. Yes, and I didn't have to work. I was here for the family.

Few changes

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

Marie V. can no longer stand the excessive movements and therefore decides to have the operation.

Interviewer: Why did you have the operation?
Marie V.: I had no other choice. Otherwise I would have ended up in the ground because I was so fidgety. And it also bothered me, I couldn't sit still, so the people sitting next to me always looked over and thought, "yes, she is not in her right mind." And when I went shopping in O [grocery shop], people would come and ask "can I take something down for you?" and I was only 67 at the time. So I thought, "well, I'm not that old." But people wanted to help me.

Excessive movements

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

Marie V. is afraid of a brain haemorrhage.

Interviewer: Were you afraid of the procedure?
Marie V.: Yes, fear and curiosity. I had both.
Interviewer: What fears did you have exactly?
Marie V.: Yes, I thought, "I am done with life." I thought, "if there is a brain haemorrhage, then it is the end, then I am done." But it didn't happen like that and I'm still alive.

Brain haemorrhage

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

Marie V. still has to take medication, but less.

Interviewer: Are you still taking pills? The same pills or no more?
Marie V.: Yes, I still have several. But only half of them.
Interviewer: Half of them.
Marie V.: Yes.
Interviewer: But they are the same? So the same medication?
Marie V.: Yes.

Less medication

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

Interviewer: And you have a remote control device, don't you?
Marie V.: Yes.
Interviewer: Do you use that?
Marie V.: Yes. Now with the full battery I look at it every month and write the battery level down. And then when it gets towards the end I look at it every day or every other day [and then I see it going down]. I've been writing all this down for twelve years. And there I can also see how long it goes [until the battery is empty].
Interviewer: So you only use that to look at the battery, but you don't make any changes [to the setting]?
Marie V.: Yes, I do that too. I can do that already.
Interviewer: And how do you use it? So what changes in the settings do you make?
Marie V.: If I have to set higher, more volts. But there I have now sworn to myself, I don't do it as much as I did [before]. Not so often any more. I used to, when it was hard for me to walk, I'd put it back up and now I was at four volts. And it goes up to four-point-five. So now I put it down to three-point-eight.

Control unit

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

Marie V. tells how she experienced the battery change.

Interviewer: You mentioned before that you had the battery change yesterday, right?
Marie V.: Yes.
Interviewer: How was it?
Marie V.: Yes, it was actually almost habit. It was the second time. And I knew roughly how it was done. I think it's a pity that they first take you to bed and then back to the operating theatre and then to bed again afterwards. I think, but that comes from my thinking as a housewife, because of the fifteen minutes in bed they have to put clean sheets on again.
Interviewer: But you had that yesterday, didn't you?
Marie V.: Yes.
Interviewer: So you are doing good now. Just one day after.
Marie V.: Yes. I went running again today.
Interviewer: And then you had to stay in hospital for a few days, so before?
Marie V.: No.
Interviewer: Or did you just go yesterday?
Marie V.: [...] We arrived at quarter past six, at seven was the operation, the preparation, and then at half past seven I was pushed into the operating theatre. It's only a local anaesthetic. [...] And then it goes out again after twenty minutes.

Marie V.

Being unfree

Related experiences

Other experiences by Marie V.

Marie V.