Urs C. has come to terms with the fact that the effect of deep brain stimulation did not quite meet his expectations.

Urs C. ha fatto i conti con il fatto che l'effetto della stimolazione cerebrale profonda non ha soddisfatto le sue aspettative.

Abbiamo pensato che si può impostare così, solo che è ottimale. E questo optimum, questo punto ideale, non è sempre stato ideale. All'inizio bisognava regolarlo un po', una volta un po' in alto, poi di nuovo in basso, poi si è stabilizzato, ma non era il risultato migliore. È il migliore possibile, ma non quello che speravamo. Abbiamo pensato: "Dopo questo tutto andrà bene". Quindi la speranza è sempre stata presente. Sì. Ma ci si abitua rapidamente al fatto che non è così, è la tecnologia. Purtroppo è così e non ne facciamo una colpa a nessuno, altri vivono la stessa esperienza, bisogna prendere più farmaci, in successione.

Aspettative troppo alte

Urs C. s'est résigné à ce que l'effet de la stimulation cérébrale profonde ne réponde pas entièrement à ses attentes.

Nous avons pensé qu'on pouvait le régler comme ça, simplement pour qu'il soit optimal. Et cet optimum, ce point idéal, n'était pas [toujours] idéal. Au début, il fallait un peu régler, une fois un peu plus haut, une fois un peu plus bas, et [cela] s'est [certes] stabilisé, mais ce n'était pas le meilleur résultat. C'est le meilleur possible, mais ce n'est pas ce que nous espérions. Nous pensions que "tout irait bien après". Donc l'espoir était toujours là. Oui. Mais on s'est vite habitué au fait que ce n'est pas comme ça, c'est la technique. Malheureusement, c'est ainsi, et nous n'en voulons à personne, d'autres vivent la même chose, on doit prendre plus de médicaments, successivement.

Des attentes trop élevées

Urs C. hat sich damit abgefunden, dass der Effekt der Tiefen Hirnstimulation seinen Erwartungen nicht ganz entsprochen hat.

Wir haben gedacht, man kann es einfach so einstellen, einfach, dass es optimal ist. Und dieses Optimum, dieser ideale Punkt, der war [gar] nicht immer ideal. Da musste man am Anfang ein bisschen regulieren, einmal ein bisschen hinauf, wieder hinunter und es hat sich [zwar] eingependelt und das war eben nicht das beste Resultat. Das bestmögliche ist es, aber nicht das, was wir uns erhofft hatten. Wir dachten, "nachher geht alles wieder gut." So die Hoffnung war immer da. Ja. Aber man hat sich schnell daran gewöhnt, dass das halt nicht so ist, das ist die Technik. Leider ist das so und wir machen gar niemandem einen Vorwurf, andere erleben das genauso, man muss mehr Medikamente nehmen, sukzessive.

Zu hohe Erwartungen

Yolanda

We thought, you can just set it like that, just that it's ideal. And this optimum, this ideal point, was not always ideal. In the beginning, you had to adjust it a bit, once up a bit, then down again, and it settled down, but it wasn't the best result. It is the best possible, but not what we had hoped for. We thought, "after this everything will be fine." So the hope was always there. Yes. But you quickly got used to the fact that that's just not the case, that's the technology. Unfortunately, that's the way it is and we don't blame anyone, others experience it the same way, you have to take more medication, successively.

Expectations too high

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

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

The Parkinson's disease brings Urs C. and his wife even closer together.

Mariella C.: I don't think I can always be with my husband.
Urs C.: No, we can't always be in the flat together either. She is sometimes knitting for hours and sits in there. Then I have to get some exercise. Then I go out once and do something and I always have something to do.
Interviewer: Yes, that's nice. So if you have fun together and separately, that's perfect, isn't it?
Mariella C.: Yes.
Urs C.: Yes.
Interviewer: To have the two things.
Mariella C.: It has to be.
Interviewer: Exactly.
Mariella C.: Otherwise you upset each other.
Urs C.: Yes.
Interviewer: Yes.
Mariella C.: With time.
Urs C.: Too long together, always concentrating on each other, I don't want that.
Interviewer: Yes, I understand.
Urs C.: I have my freedom, she has her freedom and [...] at dinner we are together. We walk a little bit every day, a few 100 metres together, go up a little hill nearby, ride our bikes up to our daughter, to K [place]. And so we also have our things together. But otherwise we have separate rooms. She has a room because she is a bit restless at night, gets up three, four, five times and then I want to have my peace. In the hotel, of course, we are always together again. Then I have my earplugs.  
Interviewer: So for sleeping?
Urs C.: Close myself off a bit. So I can sleep.
I: So you sleep separately because you can sleep better that way?
Urs C.: Exactly. Yes. Yes, yes, exactly.
Interviewer: So sleeping well is something important.
Mariella C.: Important, yes.
Urs C.: But we never really argue with each other. There are always a few discussions, but we don't argue.
Interviewer: I can see that.
Mariella C.: Yes, not any more.
Urs C.: Not any more, yes, exactly.
Mariella C.: You have to say.
Urs C.: The illness, it brings us even closer together, right? Yes.
Mariella C.: Yes, it's not worth it, so for me it's not [to argue] anymore.
Urs C.: No.
Mariella C.: Arguing.
Urs C.: No, she's not quarrelsome.
Interviewer: That's good.
Urs C.: I have it very good with my wife then, yes.

Feeling closer

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

For Urs. C., the focus is on what we have in common.

Also our, let's say, sexual activities, I've also become a bit more lame and my wife a bit more distant. It's complementary. In that sense, I have to say, I no longer run around, my wife no longer runs around. It's a common path, together towards the sun. No, I have to say that I'm not so severely restricted by this illness, I don't have to orientate myself socially differently. We do everything together, now more and more, where we just shake hands, march together, suffer together, rejoice together. Since we've had grandchildren, for 20 or 22 years, we've had this joy, which is always increasing. And the sympathy, the thinking. Teaching comes for them and studying for the grandchildren, we think along with them. We are always happy when someone has a job again.

Commonality

Urs C. usually gets his wife the medication.

I fetch the medicines from the doctor in boxes, I'm also a bit of an informer, so she doesn't have to go. She has already fetched it, but otherwise she says, "go and get me the medication from Doctor M [name]." And then I go out and come back again.

Get medication

The everyday life of family caregivers varies depending on the illness-related needs of the respective family member. Accompanying or bringing the family member to doctor's appointments, getting medicines or taking on additional household tasks and responsibilities in everyday family life are among the tasks that family members report. These and the feeling of always having to be there can be a burden and also cause excessive demands. Paying attention to one's own needs, allowing oneself space and, if necessary, taking advantage of support with care are important strategies for coping with everyday life. Relatives also describe situations in which it is difficult to accept the suffering of their partner and their own powerlessness in the face of it. Here, it is helpful for some to talk to other people about their own situation and experiences.

Daily life of family caregivers

Urs C. makes sure he has room to manoeuvre.

Urs C.: I'm already, I'd say, fifty per cent committed and during the other fifty per cent I get my freedom.
Interviewer: That's very nice.
Urs C.: Yes, I make the best of it. I help my wife with the appointments, ask, "have you taken the pills? When should we have lunch? Dinner? What would you like?" and then I cook with pleasure. And so we totally complement each other.

Own needs

Urs C. no longer wants to operate the control unit.

Urs C.: We never really needed that machine, the automatic control, because it has an upper and a lower limit, there is so little room for manoeuvre for the ideal result, we can't regulate anything further. I think I used it for the last time three days ago and saw how it was with her attitude. So it's still the same.
Mariella C.: I should just go to N [place] again. [...] I haven't been [there] for a long time.
Urs C.: At the beginning I had a huge respect for this device, because you could set it higher and lower, and then suddenly she started to shake, then I said, "we mustn't change anything there, we'd better keep our hands off this device." [...] "ok?"[to Mariella C.], zero point one up, down, that's it, it now remains like this.
Interviewer: Is it [now] just a matter of checking the battery level?
Urs C.: Yes. [...] Yes. Now you can see the voltage nicely.

No 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.

Urs C.

Expectations too high

Video Interview

Related experiences

Other experiences by Urs C.

Urs C.