Vreni M. does not like the way the diagnosis is communicated to her husband and what follows.

A Vreni M. non piace il modo in cui la diagnosi viene comunicata a suo marito e ciò che segue.

E il neurologo, era abbastanza insensibile, come se non si potesse fare di meglio. Gli ha dato la diagnosi e gli ha detto: "Torna tra un anno, addio", puff, sì. E un medico di casa nostra, o meglio sua moglie, gli ha poi dato il nome di un altro neurologo che ha detto alla prima visita che forse poteva fare questa operazione, questa stimolazione cerebrale profonda. Ma prima gli furono dati dei farmaci, farmaci per il Parkinson.

Mancanza di empatia

Vreni M. n'apprécie pas la manière dont le diagnostic est annoncé à son mari et ce qui s'ensuit.

Et le neurologue, il était assez peu sympathique, comme on ne peut pas faire mieux. Il lui a donné le diagnostic et lui a dit : "Revenez dans un an, au revoir", paf, oui. Et un médecin de chez nous, ou plutôt sa femme, lui a indiqué une autre neurologue qui, dès la première visite, a dit qu'il pourrait peut-être un jour faire cette opération, cette stimulation cérébrale profonde. Mais d'abord, il a reçu des médicaments, des médicaments contre la maladie de Parkinson.

Manque d'empathie

Vreni M. findet die Art und Weise wie die Diagnose ihrem Mann mitgeteilt wird und was danach folgt nicht gut.

Und der Neurologe, der war so ziemlich unempathisch, wie man das nicht besser machen könnte. Er hat ihm nämlich die Diagnose gegeben und hat gesagt: "Kommen Sie in einem Jahr wieder, auf Wiedersehen", paff, ja. Und ein Arzt bei uns im Haus, respektive seine Frau, hat ihm dann eine andere Neurologin angegeben, die schon beim ersten Besuch sagte, dass er vielleicht einmal diese Operation machen lassen könne, diese Tiefenhirnstimulation. Aber zuerst hat er einmal Medikamente bekommen, Parkinsonmedikamente.

Empathielosigkeit

Yolanda

And the neurologist, he was pretty much unsympathetic, as you couldn't do better. He gave him the diagnosis and said, "Come back in a year, goodbye," puff, yes. And a doctor in our house, or rather his wife, then gave him the name of another neurologist, who said on the first visit that he could perhaps have this operation, this deep brain stimulation. But first he was given medication, Parkinson's medication.

Lack of empathy

Receiving a diagnosis of Parkinson's disease is a drastic moment. Affected people and relatives report that it pulls the rug out from under their feet and that they need time to process the news of the diagnosis. The fact that the disease is progressive can lead to an initial relief when one does not yet notice much of the symptoms and they develop slowly. In the same way, however, the fact of progression is also perceived as threatening because it is hopeless and the future is unknown. An approachable and open way of medical communication and detailed information about the disease and its treatment options are important, but do not take place for everyone.

Getting the diagnosis

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

Vreni M. tells about how the first complaints appeared with her husband and that over time he also seemed to her to have changed in character.

So before he was diagnosed, he already had various complaints that he kept reporting to his GP. For example, he had bladder problems, I can't remember what else. But I remember the bladder thing. And then he once came home from work and said: "Now I've realised that I didn't swing my left arm when I was walking uphill." And that's part of normal walking, that we swing our arms when we walk. And his left arm was just hanging down. And he told the GP that too. The GP didn't react. The GP always said it was stress. And then he planned a six-week holiday because he thought I wanted to counteract this stress. And at the beginning of this holiday, his hand started to shake. And then the doctor finally intervened and said he needed to see a neurologist. And the neurologist then examined him thoroughly and made the diagnosis. 
He also called me at home to see if I had noticed any changes. Yes, he had simply become more complicated, I said. He was already a complicated person anyway. And that's what I had noticed above all, that he had simply become so complicated. And then he came home with the diagnosis. That was quite a blow, of course.

Immobility, tremors and changes of character

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

Vreni M. perceives her husband as less active and humorous.

The frequent staying at home is a big difference. It wouldn't have been like that before. And he would have gone out much more himself and organised things, he liked to organise and start things. And yes, he had a lot of initiative. And the humour has also diminished, a lot.

Initiative and humour

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

Vreni M.: Changed anything? I don't know. Then [at the beginning] I don't think so, but over time he became a patient and I became more of a companion. But I wouldn't say from the beginning, but only over time, when more and more symptoms appeared or all these Parkinson's symptoms became stronger.
[...]
Vreni M.: He becomes more of a patient and I become more of a carer and [...] initiator, companion, mother, yes.
Interviewer: And was it also like that after the operation? So in those years when it was still better?
Vreni M.: Yes, I think so.
Interviewer: Somewhat progressive.
Vreni M.: Yes, especially in the last one and a half years. And also in terms of sexuality, not much is possible any more, not at all, and the libido has also decreased a lot.
Interviewer: In the last few months or also after the operation?
Vreni M.: No, not after the operation, but rather in the last one and a half to two years. It's been longer than that.

From partner to caregiver

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

Vreni M.'s husband also often talked to the neighbours about his illness, which became too much for them.

In the house he [...] also talked quite [...] a lot about it [Parkinson's disease] and kept talking about it and how many medicines he now had to take of what, until the people in the house said, "that's enough, we don't want to hear that any more". [...] Because he was so caught up in it and it was only his [only] topic, [so] that the others couldn't bear it any more.

Talk about it too much

Dealing with one's own illness in public and the reactions of strangers to visible symptoms (e.g. swaying gait) can be challenging and not always pleasant. However, positive experiences are also reported, for example the consideration of others in public transport. The need for social contacts changes, affected persons report that they meet friends less often, up to the feeling of isolation when contacts with former colleagues break off completely. Talking about one's own illness is on the one hand relieving, especially if it serves to explain oneself, but on the other hand it can also become too much.

Social life

Vreni M. would like to accompany her husband to the doctor in future.

Vreni M.: Now he has another appointment on 5 September. If it's okay with me. But I'm no longer sure, I think I'll have something going on and won't be able to go. Yes, I have something going on. But I still have to see, maybe I'll cancel it, because now it's slowly becoming more important to me that I'm also at the consultations.
Interviewer: Why?
Vreni M.: Because now I sometimes have the impression that maybe he can't express it the same way as before.

Accompaniment to medical appointments

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

Vreni M. reports that the relief of the Parkinson's symptoms also reduced her depression.

I would say that with the medication he became more upright [more vital], less depressed. [...] Parkinson's is also associated with depression and if Parkinson's medication works, then it also works against depression.

Additional indirect effect

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

Vreni M. feared that her husband might become aggressive after the operation.

I had great concerns about the operation because I had heard indirectly that there can also be personality changes. I heard from someone, but I didn't know the person, that he had become so aggressive afterwards. And I simply realised that if he became aggressive, then I would fight back and I didn't want that, I couldn't bear it. And that's what I was afraid of.
[...]
So that was the fear. I wasn't actually afraid that the operation could go wrong. I trusted the C [hospital name]. It's a huge team that has to work together. And we also had a conversation with the operating doctor. So I had confidence. No, the fear was really just that he might have a different personality afterwards. Or no longer be my partner, [...] my partner whom I married and loved, if he suddenly became a different person. I would have been afraid of that. I was afraid of that.

Personality changes

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

Vreni M. reports about the fluctuations in her husband's condition.

Vreni M.: Now, during this three-quarter year, he is getting worse and has to take more medication, every three hours, a higher medication than before.
Interviewer: Than before the operation you mean?
Vreni M.: Yes, and for three quarters of a year. So that was also increased. And he has big fluctuations when he has taken the medication, respectively in the time in between. So it really goes up and down.

Up and down

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

For Vreni M., the exchange in the self-help group is valuable.

Vreni M.: After one or one and a half years, I also went to the self-help group for relatives, they were all women. Men apparently don't go to the self-help groups, although there are just as many women who have Parkinson's as men.
Interviewer: I know.
Vreni M.: And yes, they all talked about how their husbands were doing and less about how they were doing with it. They talked more about the men than about themselves. And I listened to all of this and then heard a lot more about the practical consequences, what it could mean and what I could have to face. And then they asked me once, doesn't it scare you when you hear all this? And then I said, "No, I just want to hear what's coming or what could come.
Interviewer: You can prepare yourself.
Vreni M.: Exactly. I'd rather deal with it than fight it off. Yes, you can react in different ways.

Self-help for relatives

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".

Vreni M.

Lack of empathy

Related experiences

Other experiences by Vreni M.

Vreni M.