Seraina F. reports that she hardly recognised her husband at first.

Seraina F. riferisce di aver riconosciuto a stento il marito all'inizio.

Sono andata a trovarlo subito dopo l'operazione e non riconoscevo più mio marito. Era incredibile, aveva un volto completamente diverso. Per me, in quel momento, non era mio marito. L'ha cambiato, forse perché era stanco? Forse perché era completamente rasato? Non posso dirlo, ma ho fatto fatica a riconoscerlo. E poi, naturalmente, quando  mi hanno detto: "Suo marito è qui", è stato abbastanza scioccante. Poi, quando ha aperto gli occhi e mi ha parlato, era tutto a posto, è andata così. Ma credo che il fatto di averlo visto completamente rasato, la testa, di aver visto le bende ovunque, ha fatto in modo che non lo riconoscessi. È difficile da dire, ma è stato così. È stato uno shock per me. Subito dopo l'operazione è stato uno shock. E poi siamo dovuti rimanere in ospedale un po' di tempo, c'erano degli aggiustamenti da fare, c'erano anche delle bende perché hanno inserito i due pacemaker, un pacemaker normale, è uguale ma più grande. E poi mi è sembrato che stesse bene. E dopo aver fatto le modifiche, andava tutto bene. Ha preso i farmaci per le allucinazioni e tutto è andato bene. Per me è stato tutto perfetto.

Aspetto modificato

Seraina F. raconte qu'au début, elle a à peine reconnu son mari.

Et puis je suis allée le voir juste après l'opération, j'ai déjà pas reconnu mon mari. Parce que c'est étonnant, il avait tout un autre visage. Pour moi, c'était pas mon mari sur le moment. Ça l'a transformé, est-ce que c'était la fatigue ? Est-ce que c'était parce qu'il était complètement rasé ? Je suis incapable de le dire, mais j'ai eu de la peine à le reconnaître. Et puis après bon bien sûr, on m'a dit mais il est là votre mari, c'est assez choquant. Et puis une fois qu'il a ouvert les yeux et puis qu'il m'a parlé, c'était tout bon, c'était ça. Mais je pense le fait de l'avoir rasé complètement, le crâne, d'avoir vu les pansements un peu partout, je l'ai pas reconnu. C'est assez difficile de le dire, ça, mais c'était ça. C'était un choc pour moi. Juste après l'opération c'était comme un choc. Et puis voilà alors après, il faut rester quelque temps à l'hôpital, il y a des réglages à faire, il y avait aussi les pansements là parce qu'ils ont mis les deux stimulateurs comme un pacemaker qu'on met pour les personnes, c'est le même style, c'est un poil plus gros quand même. Et puis il me semblait qu'il allait bien. Et puis après les réglages, on s'est dit tout va bien. Il a reçu les médicaments contre les hallucinations, tout allait parfaitement bien. Pour moi, tout était parfait.

Aspect modifié

Seraina F. berichtet, dass sie ihren Mann zuerst kaum wiedererkannte.

Und dann bin ich gleich nach der Operation zu ihm gegangen und habe meinen Mann schon nicht mehr erkannt. Denn es war erstaunlich, er hatte ein ganz anderes Gesicht. Für mich war er in dem Moment nicht mein Mann. Es hat ihn verändert, lag es an der Müdigkeit? Lag es daran, dass er komplett rasiert war? Ich kann es nicht sagen, aber es fiel mir schwer, ihn zu erkennen. Und dann wurde mir natürlich gesagt, dass Ihr Mann hier ist, das ist ziemlich schockierend. Und als er dann die Augen öffnete und mit mir sprach, war alles gut, das war es. Aber ich denke, die Tatsache, dass ich ihn komplett rasiert gesehen habe, seinen Schädel, dass ich die Verbände überall gesehen habe, ich habe ihn nicht erkannt. Es ist ziemlich schwierig, das zu sagen, aber das war es. Es war ein Schock für mich. Direkt nach der Operation war es wie ein Schock. Und dann war es so, dass man danach einige Zeit im Krankenhaus bleiben muss, es gibt Einstellungen zu machen, es gab auch Verbände, weil sie die beiden Schrittmacher wie einen Herzschrittmacher eingesetzt haben, den man Menschen einsetzt, es ist der gleiche Stil, aber er ist trotzdem ein bisschen größer. Und dann schien es mir, dass es ihm gut ging. Und nachdem wir die Einstellungen vorgenommen hatten, sagten wir, dass alles in Ordnung sei. Er hat die Medikamente gegen die Halluzinationen bekommen, alles war in Ordnung. Für mich war alles perfekt.

Verändertes Aussehen

Corine

And then I went to see him straight after the operation and I no longer recognized my husband. Because it was amazing, he had a completely different face. To me, he wasn't my husband at that moment. It changed him, was it because he was tired? Was it because he was completely shaved? I can't say, but I found it difficult to recognize him. And then of course I was told that your husband is here, which is quite shocking. And then when he opened his eyes and spoke to me, it was all good, that's it. But I think the fact that I saw him completely shaved, his skull, that I saw the bandages everywhere, I didn't recognize him. It's quite difficult to say, but that was it. It was a shock for me. Straight after the operation it was like a shock. And then it was like you have to stay in hospital for some time afterwards, there are adjustments to be made, there were also bandages because they put the two pacemakers in like a pacemaker that you put in people, it's the same style but it's still a bit bigger. And then it seemed to me that he was fine. And after we made the adjustments, we said everything was fine. He got the medication for the hallucinations, everything was fine. Everything was perfect for me.

Changed appearance

The surgical procedure to implant the electrodes in the brain as well as the pacemaker in the upper part of the body usually takes between five to six hours and is partly done while the patient is awake. Some centres perform the surgery as a two-stage procedure, where the stimulator itself is implanted in a second surgery. Those affected remember certain situations and impressions during this part of the operation (e.g. being asked to count out loud; noises), some of which were unpleasant (e.g. having a steel ring put on; jaw clenched). Relatives report that the time of waiting until the operation is over is nerve-wracking for them and the relief is great when it is over. For relatives, the first sight of the newly operated person can also be frightening, as the external appearance of the head has changed (e.g. shaved skull).

The surgery

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

Seraina F. reports that her husband's fatigue is increasing.

Seraina F.: So once everything was under control, once we had done urine and blood tests again, everything was fine. So we realised that the disease was progressing a little bit because he was getting tired. He already had a certain fatigue, but we thought it was a fatigue of everyday life. But when we studied the disease carefully, we realised that it is a disease that gives a fatigue not physical that we want, but a fatigue which is permanent. And sometimes it's stronger from one day to the next.
The only thing that's wrong is that fatigue, which is involuntary, he's going to walk 200 metres, he's got to sit down.   
Interviewer: And this tiredness, has it come since the Stalevo or since the operation? Since before?   
Seraina F.: I think the fatigue was always there, but as the disease progresses, the fatigue goes with it. I think the fatigue is increasing too.

Increasing fatigue

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

Seraina F. reports about a time when she felt very overwhelmed and was not well.

Seraina F.: And I was also very, very bad. And luckily I work at CMS, because I had the support of my superiors, my team, who told me: "Now you need help too." Because that's when I left.
Interviewer: And how did you get help?
Seraina F.: Well, my supervisors told me "listen, there are lots of things you can do to help. We could call in home help to relieve you." So after a while we agreed, we said, okay, so the care, when I'm at work, someone has to come home to look after my husband. To take care of showering, getting dressed in the morning. Skin care and so on. And then a bit later, I had broken my wrist, I got help with ironing, help with the shopping. And it also helped me to have a bit more knowledge: What can I do to engage someone to help my husband? But who also helps me at the same time. So we've also asked for help around the house to take the pressure off me. And so my husband doesn't have to go "ah my wife, she has to do everything na ni na na" for his morale as well, that has helped a lot. Because he cares a lot about me, my husband, because he sees me moving all the time, doing everything, because I had to take over everything, whether it's all the paperwork, I call it paperwork, that means everything: the mail, the payments, all his mail too, I manage everything. I manage his medication.
Interviewer: Going back to that, you told me about the support from your work environment, the CMS. But did you feel that you were getting enough support at the moment?

Excessive demand

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

Seraina F. reports that she is afraid because of the device in her husband's brain.

So everything was fine. And while he was waiting for all the doctors to discuss it, after the tests and the sterilization, he was full of anxiety. Because it's not a harmless operation, I can understand that too. That was the case with us. He was more afraid of having his brain pierced, I was more afraid of the thing that held his head, which weighed a ton, I don't know how he coped with that, I was more afraid of it.
Before the operation I was afraid that something might happen to my husband. That it would go wrong or that it wouldn't work at all, that the electrodes would be placed incorrectly, but I was really scared of that. I was afraid for him.

Technology in the brain

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

Seraina F. says that Filippo F. had an infection after the operation and was severely weakened.

And a few weeks later there were problems with a urinary tract infection. Not an infection there or here. That's good, because everything went well in that respect. The fact that he had an infection after a procedure like he had, it diminished him, but totally. He couldn't get up on his own, couldn't eat on his own, it damaged his body and so on. The effect of the antibiotics he was prescribed and the infection that diminished him, after an operation I found that it was extremely complicated for the environment.

Postoperative complication

Seraina F. reports that the electrode was not connected initially.

Seraina F.: They brought a radio, the cable was disconnected. We spent between five and six months struggling here because things weren't going well, because things were disconnected. Don't hesitate to scream, I really mean that for the next few people.

Defect

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

Seraina F. reports about targeted therapeutic offers for people with Parkinson's disease.

Although he still does physio, he goes to the CAT center, Temporary Admission Center. This is a day dedicated to people with Parkinson's disease. And there are physiotherapists, occupational therapists and speech therapists there because my husband is also losing his voice. So.

Targeted offers

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.

Seraina F.

Changed appearance

Related experiences

Other experiences by Seraina F.

Seraina F.