Noah E. sometimes feels like an employee.

Intervistatore: Sente che qualcosa è cambiato nel rapporto con sua moglie dopo la diagnosi?
Noah E.: Uff. Sì, ho questa sensazione. È solo che a volte vengo più o meno "degradato" a dipendente.
Intervistatore: Perché? Mi può fare un esempio?
Noah E.: Sì, ha la tendenza, quando fa qualcosa perché non riesce più a camminare bene, a togliersi la giacca e magari metterla su qualcosa. Poi lo getta, magari lo colpisce, magari lo appoggia sul pavimento, ma per lo più rimane così [in giro], presumendo che io lo raccolga e lo metta in ordine. O anche perché non è più così mobile che a volte dice: "Ora voglio andare lì, ora voglio fare questo, ora voglio fare quello" e sì, allora devo fare attenzione e a volte frenare.

Aspettative

Noah E. a parfois l'impression d'être un employé.

Intervieweuse : Avez-vous l'impression que quelque chose a changé dans votre relation avec votre femme après le diagnostic ?
Noah E. : Ouf. Oui, j'ai l'impression. Justement, je suis parfois quasiment "relégué" au rang d'employé.
Intervieweuse : Pourquoi dites-vous cela ? Pourriez-vous me donner un exemple ?
Noah E. : Oui, elle a tendance, quand elle fait quelque chose, justement parce qu'elle ne peut plus bien marcher, à enlever sa veste et à vouloir la poser quelque part. Elle la jette alors simplement, peut-être qu'elle réussit, peut-être qu'elle se retrouve par terre, et la plupart du temps, ça reste là quelque part, en pensant que je [se] ramasse et que je nettoie. Ou alors, du fait qu'elle n'est plus aussi mobile, elle dit parfois "maintenant je veux aller là, maintenant je veux faire ça, maintenant je veux faire ça" et oui, je dois alors faire attention et parfois freiner un peu.

Attentes

Noah E. kommt sich manchmal wie ein Angestellter vor.

Interviewerin: Haben Sie das Gefühl, dass sich etwas in Ihrer Beziehung mit Ihrer Frau nach der Diagnose verändert hat? 
Noah E.: Uff. Ja, habe ich schon das Gefühl. Eben, dass ich manchmal quasi zu einem Angestellten "degradiert" werde.
Interviewerin: Warum meinen Sie das? Könnten Sie mir ein Beispiel geben? 
Noah E.: Ja, sie hat so die Tendenz, wenn sie etwas macht, eben weil sie nicht mehr gut laufen kann, dann zieht sie sich die Jacke aus und will sie vielleicht irgendwo drauflegen. Dann wirft sie sie einfach rüber, vielleicht trifft sie, vielleicht liegt sie am Boden und meistens liegt es dann irgendwo einfach so [rum], in der Annahme, ich hebe es dann schon auf und räume es auf. Oder auch durch das, dass sie nicht mehr so mobil ist, dass es dann manchmal heisst, "jetzt will ich dorthin, jetzt will ich das, jetzt will ich jenes" und ja, da muss ich dann aufpassen und manchmal etwas bremsen.

Erwartungshaltung

Yolanda

Interviewer: Do you feel that something has changed in your relationship with your wife after the diagnosis?
Noah E.: Whew. Yes, I do have the feeling. It's just that sometimes I'm more or less "demoted" to an employee.
Interviewer: Why do you mean that? Could you give me an example?
Noah E.: Yes, she has a tendency, when she does something because she can't walk well anymore, to take off her jacket and maybe put it on something. Then she just throws it over, maybe she hits it, maybe it lies on the floor and mostly it just lies somewhere like that [around], assuming that I will then pick it up and tidy it up. Or also because she is no longer so mobile that sometimes she says, "now I want to go there, now I want to do this, now I want to do that" and yes, then I have to watch out and sometimes put the brakes on.

Expectations

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

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

Noah E. has observed that the effect of deep brain stimulation slowly wears off.

Interviewer: Do you feel that Deep Brain Stimulation has become less effective as a therapy over time?
Noah E.: Yes, a little bit. Because, I've already noticed that when she's a little bit excited, that she starts to shake a little bit and that she sometimes has times in between when she doesn't have that much strength in her hand. I don't know if that's when she's perhaps a bit tired herself, or if that's simply the progression of the disease, so to speak. Because you can't stop it with deep brain stimulation or with medication, but you can delay it. And I already have the feeling that the effect is minimally diminishing.

Diminishing effect

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

Noah E. is mostly satisfied with the results of the deep brain stimulation, but still reports running blockages.

Interviewer: Did the deep stimulation meet your expectations overall?
Noah E.: Yes. I would say so. Where I am a little disappointed [is] with the walking blockages, I don't quite understand something. The neurologist says that deep brain stimulation doesn't work against the walking blocks, that nothing can be done. On the other hand, I went to a lecture at the university hospital in F. [location] and they now do this treatment for people who don't have Parkinson's, but who have walking difficulties. They do deep brain stimulation and it works.
Interviewer: Yes, that's true.
Noah E.: I still have difficulties understanding why it works there and not here. I can only imagine that a different point in the brain probably works for the disabilities than for "tremor things", that this is the difference. But I'm still struggling a bit there. But yes, otherwise I would say I am very satisfied with the deep brain stimulation.

Running blockades

Noah E. says that his wife speaks more quietly since the deep brain stimulation.

What has perhaps gotten worse is her speech. At the beginning she was still seeing a speech therapist. Sometimes, when she gets tired, you notice that her speech is a bit worse and that she speaks more quietly, which sometimes leads to difficulties, [she then asks] "What did you say? She has the feeling that she has now spoken loudly, while mumbling something and then she tells you, "yes, you need to go to the ear doctor, you don't hear well." Yes, with time you get used to it a bit. Sometimes it's difficult.

Speech volume

Noah E. finds it difficult to assess whether he has made the right adjustment for his wife.

I have also spoken to the doctor [about this], that perhaps she should be better adjusted to the medication and the deep brain stimulation in rehab. For me, it's a bit difficult [although] I already have the possibility to regulate the deep brain stimulation upwards and downwards with the box myself. [...] And also with the medication, to give and take something, but yes, I'm not an expert either. And so it's a bit difficult for me to assess whether the setting she has now is really the perfect setting.

The perfect setting

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

Noah E. says that the exchange with others helps his wife.

Interviewer: Do you talk to other relatives of people with Parkinson's from time to time?
Noah E.: Yes. Because we go to occupational therapy gymnastics every week, and in the meantime I talk to other relatives, for example in the café or we were at a Parkinson's seminar, it was about QiGong in S [place]. And almost all of them had a relative with them. And yes, we exchange information [...] or I go to seminars for relatives with Parkinson's. Yes, that helps, in order to have an exchange in between. Then you see for yourself that you are actually still quite well off. Or others, where perhaps the relatives say, "we don't have any problems yet. We can still do things without major restrictions." And that already helps.

The exchange helps

Participating in a self-help group can help sufferers and relatives alike to no longer feel alone with their own difficulties and challenges. Sharing knowledge and experiences about specific topics of concern (e.g. deep brain stimulation) is also valued. While the exchange about Parkinson's disease is helpful for some affected persons and relatives, for others it is just the opposite, and the discussion with others about the disease and "living with it" is experienced as "too much".

Self-help groups

Noah E. has sought support for care and household chores.

There are certain things that I have kept up. For example, on Monday and Tuesday I take care of the granddaughter so that my daughter can work. And in the beginning she [Kerstin E.] came with me to D [place] and over time it became too exhausting for her. And then she stays at home and I go. Or in between I go to the fitness centre alone. What I have organised now is that on Monday and Tuesday two women from an escort service come and go running with her for an hour in the afternoon. Because walking is important for Parkinson's patients, so that they don't lose their rhythm, because otherwise it's no longer automatic. And that was very exhausting when I had to drive here quickly from D [place] after noon, walk with her, then sit in the car again and drive to D [place] until the granddaughter came home. And also for cleaning I now have a woman from the home help every fortnight who comes over and does the tour for two hours to make everyday life a bit easier. Yes, everyday life is determined by the illness in that sense.

Support

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.

Noah E.

Expectations

Video Interview

Related experiences

Other experiences by Noah E.

Noah E.