Due to her husband's Parkinson's disease, Lucie L. has a lot of work.

A causa del morbo di Parkinson del marito, Lucie L. ha molto lavoro.

Intervistatore: Hai avuto l’impressione che la tua routina di vita ha cambiato soprattutto all’inizio?  
Lucie L.: Sì. Bon all’inizio no, dopo… quando è diventato un po’ più pesante con lui.  
Intervistatore: OK.  
Lucie L.: Viene Spitex la mattina, lui cade tanto e se non sono a casa che arriva lo Spitex che suona alla porta, lui si alza d’un colpo e va… e poi cade. Allora adesso devo essere a casa lo devo sempre guardare l’orario quando vado a fare la spesa, essere qui o dopo… è quello! Tutti i giorni, tutti i giorni devo pensare a quello.  
Intervistatore: Mh, mh.  
Lucie L.: Questo è un cambiamento… stressante devo dire.
[...]
La sera ci vuole qualcuno almeno alle dieci e mezzo la sera devo essere a casa. Se non sono a casa, non so cosa capita.  
Intervistatore: Mh. So questo è anche un cambiamento. È un cambiamento della tua routina.  
Lucie L.: Sì. Non posso dire: "Vado a ascoltare un concerto" o qualche cosa del genere. Non va.  
Intervistatore: Mh, mh. So devi cambiare come [...] Sì, devi organizzi il giorno.  
Lucie L.: Sì. La giornata devo dire faccio ancora come prima, ma la sera non.

Lavoro per due

En raison de la maladie de Parkinson de son mari, Lucie L. a beaucoup de travail.

Intervieweuse : Avez-vous eu l'impression que votre vie quotidienne a changé, surtout au début ?  
Lucie L. : Oui. Enfin au début, non, après. Quand c'est devenu un peu plus difficile avec lui.  
Intervieweuse : OK.  
Lucie L. : Les soins à domicile viennent le matin, il tombe souvent et si je ne suis pas à la maison et que les soins à domicile sonnent à la porte, il se lève tout d'un coup et va ouvrir... et puis il tombe. Donc maintenant, je dois être à la maison. Je dois toujours faire attention à l'heure quand je vais faire les courses, soit ici, soit plus tard... c'est ça ! Tous les jours, je dois y penser.  
Intervieweuse : Mh, mh.  
Lucie L. : C'est un changement... stressant je dois dire.
[...]
Le soir, il faut quelqu'un au plus tard à dix heures et demie du soir, je dois être à la maison. Si je ne suis pas à la maison, je ne sais pas ce qui se passe.  
Intervieweuse : Mhhh. C'est aussi un changement. C'est un changement de votre routine.  
Lucie L. : Oui. Je ne peux pas dire : "Je vais écouter un concert" ou quelque chose comme ça. Ce n'est pas possible.  
Intervieweuse : Mh, mh. Donc il faut changer comment [...] Oui, il faut organiser la journée.  
Lucie L.: : Oui. Le jour, je dois dire que je fais encore comme avant, mais le soir non.

Travail pour deux

Durch die Parkinsonerkrankung ihres Mannes, hat Lucie L. viel Arbeit.

Interviewerin: Hatten Sie den Eindruck, dass sich Ihr Lebensalltag besonders am Anfang verändert hat?  
Lucie L.: Ja. nun am Anfang, nein, danach... als es mit ihm ein bisschen schwerer wurde.  
I: OK.  
Lucie L.: Die Spitex kommt morgens, er fällt oft hin und wenn ich nicht zu Hause bin, dass die Spitex an der Tür klingelt, steht er plötzlich auf und geht... und dann fällt er hin. Also muss ich jetzt zu Hause sein. Ich muss immer auf die Zeit achten, wenn ich einkaufen gehe, entweder jetzt oder später... So ist es! Jeden Tag, jeden Tag muss ich daran denken.  
Interviewerin: Mh, mh.  
Lucie L.: Das ist eine Veränderung... stressig muss ich sagen.
[...]
Abends braucht es jemanden, spätestens um halb elf Uhr abends muss ich zu Hause sein. Wenn ich nicht zu Hause bin, weiß ich nicht, was passiert.  
Interviewerin: Mh. Ich weiß, dass dies auch eine Veränderung ist. Es ist eine Veränderung Ihrer Routine.  
Lucie L.: Ja. Ich kann nicht sagen: "Ich höre mir jetzt ein Konzert an" oder so etwas. Es geht nicht.  
Interviewerin: Mh, mh. Man muss also ändern, wie [...] Ja, man muss den Tag organisieren.  
Lucie L.: Ja. Am Tag muss ich sagen, ich mache es noch wie früher, aber am Abend nicht.

Arbeit für zwei

Yolanda

Interviewer: Did you feel that your life routines changed especially in the beginning?  
Lucie L.: Yes. Well, at the beginning no, after... when it became a little bit heavier with him.  
Interviewer: OK.  
Lucie L.: Spitex comes in the morning, he often falls down and if I'm not at home when Spitex comes ringing at the door, he gets up all of a sudden and goes... and then he falls. So now I have to be home I always have to look at the time when I go grocery shopping, either now or later... That's how it is! Every day, every day I have to think about that.  
Interviewer: Mh, mh.  
Lucie L.: That is a change... stressful I must say.
[...]
Someone has to be here in the evening. I do have to be home by half past ten at the latest. If I'm not home, I don't know what happens.  
Interviewer: Hmm. I know this is also a change. It's a change in your routines.  
Lucie L.: Yes. I can't say, "I'm going to listen to a concert" or something like that. It doesn't work.

Work for two

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

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

Lucie L. reports that once during the day it was almost impossible to wake up her husband.

Lucie L.: A doctor came in and said: Ein Arzt kam herein und sagte: "Well, I have to ask a few things" I said: "But he's asleep." "Wake him up then." "I can't, he won't wake up."  [...]
Husband: Here? Me?
Lucie L.: Yes!   
Husband: I don't remember.   
Lucie L.: Well, he doesn't remember.   
Interviewer: Because he was asleep! That's why.

Extreme daytime sleepiness

Non-motor symptoms of Parkinson's disease include neurological and psychological impairments. But other symptoms, such as changes in voice, may also occur. Many people with Parkinson's disease report constant and persistent fatigue. In individual cases, this can find expression in an extreme form of daytime sleepiness, as the relative Lucie L. reports. Closely related to the issue of fatigue are sleep disturbances experienced by those affected (e.g., waking up at night or acting out motor dreams). This also affects close relatives, whose sleep is also impaired by the nocturnal activity. Mood swings, erratic behavior, phases of depression and anxiety are further symptoms suffered by both the affected person and their relatives. Some sufferers report hallucinations and suicidal thoughts, while relatives perceive states of confusion and forgetfulness.

Non-motor symptoms

Lucie L. tells of Pierro L.'s fear and nocturnal restlessness, which also deprive her of sleep.

Lucie L.: This was very strange to me. It made me laugh so much because situations that I'm saying, "No, I don't go to bed, it is full of women under the bed." I said: "Let's go and watch together." Then came here in the corner a scare! I said: "Let's go and have a look." I said: "But look, there's nothing under the bed."  
Interviewer: Ah.  
Lucie L.: "And but maybe" he looked...when we went all the way around the flat I said: "There's nobody, you can go sleep quietly." After he went, he slept... What should I do? But at that time, I couldn't sleep anymore, I mean maybe two hours a night.
Interviewer: Because he...
Lucie L.: He was always around. Yeah.
Interviewer: He was always around.  He would pack your suitcase and go.
Lucie L.: No because afterwards I closed the door, I took the key away because he said, "I'm going to run away afterwards."

Fears and anxiety

Lucie L. reports how her husband's colleagues brought him home after he had difficulty breathing.

Lucie L.: Once, he was not yet at A [employer], he was working for B [employer] and he had a crisis of hyper ventilation. And he was knocked down that away they didn't know-"He's in a coma." They took him, they took him home, I wasn't there, they looked for the keys, they found the keys and they came in and put him on the bed.
I: Why didn't they take him to the hospital?  
Lucie L.: Eh exactly! 
I: Because how can you leave a person [...] But this people from work [...].
Lucie L.: Eh yes. And then I see him and they say, "Eh we put him here," he was in a little girl's bed. And when I saw him I called the doctor right away. He said, "I'm coming." And he did all the checks he called the Ambulance and they took him to the hospital. That was the first time, but that was in the years, he stopped in '89, that was before. So that means Parkinson's has had it for at least 30 years.  
Interviewer: I know this was 30 years ago.
Lucie L.: If we think about that history. Then it happened one more time. Again at the hospital. Always the same thing, they found nothing.

Collapse

The symptoms of Parkinson's disease also affect the working life of the person with the disease. Depending on when the first limiting symptoms appear and on the demands of the respective occupation, the effects vary. While some sufferers can continue to work as before for a few years after receiving the diagnosis, others have to reduce the workload, adapt the range of tasks or even stop working prematurely. Making the necessary arrangements for registering with the IV in good time can relieve the burden later on. Being open about one's illness is helpful, but not everyone handles it in the same way. In general, help and support from colleagues as well as the employer's understanding of one's situation are important, especially if certain activities become difficult or can no longer be done to the same extent or at the same pace.

Work

Lucie L. says that her husband is no longer so tidy.

Interviewer: And you said earlier that you saw how your husband changed a lot, I would say his personality changed during his illness? 
Lucie L.: Yes, yes, yes, yes. Yes, a lot. Yes yes.  
Interviewer: For example? Can you give me an example of things from his personality that he changed.  
Lucie L.: One example: when he was working. Every morning he had a shower, a shave, a clean shirt everything was always clean and then on the desk everything was in order, everything. Now he has no more. He can't find anything anymore, he is always looking for something.
Interviewer: He is more messy than before.  
Lucie L.: Yes. If I think how it used to be and how it is now. They are two different people, totally. But obviously over time, this became normal.

Sense of order

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

Lucie L. finds communication with her husband more difficult.

Lucie L.: He now as he said before he loses his memory a little bit and then he doesn't answer what we ask, he gives another answer and then the speech is a little bit...  
Interviewer: And that's difficult I guess.  
Lucie L.: That is difficult you can't have a discussion that makes sense.  
Interviewer: I see. And this communication difficulty I guess is difficult.
Lucie L.: Yes it is difficult communication, yes, yes. Or then if I ask for some things he doesn't answer! Nothing to do! He doesn't give an answer. I don't know if he didn't hear, if he doesn't want to hear, I don't know if he thinks something else. I don't know.  
Interviewer: And since when does this happen?  
Lucie L.: Quite often. It depends -- precisely I don't know if he has some thing in his head, if he thinks about some thing or, hard to say.

Communication

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

Lucie L.'s husband used to decide everything, now it's the other way round.

Interviewer: Do you feel that your relationship with your husband has changed during your illness?  
Lucie L.: Yes it has changed, because he used to decide everything. And now it's the other way around. We have changed roles.  
Interviewer: You are the boss lady.  
Lucie L.: Yes that's right.

Role reversal

Lucie L. has observed that many things have improved in everyday life.

Lucie L.: Yes yes, after 6 months I said, "Yes now it's starting to get better" it's much better than before.  
Interviewer: What are the things that you think have improved?  
Lucie L.: No more medication taken every 3 hours.  
Interviewer: Yes.  
Lucie L.: Because when he didn't want to... no chance, he didn't want to.
[...]
That also became better, to eat.  
Interviewer: Mh, mh.   
Lucie L.: It improved this side yes. No, so many things even the shaking is almost gone.
[...]
He used to cry a lot before.  
Interviewer: He cried a lot.  
Lucie L.: When he got emotional he couldn't support anything any more, he would cry immediately. Going outside, talking, someone would hear... and he would start crying. That passed.

Many improvements

After starting treatment with the Duodopa® pump, patients report improvements in Parkinson's symptoms. Among other things, the decrease in blockages, the improvement in mobility and the disappearance of tremors are mentioned. The fact that treatment with the pump often eliminates the need to take medication is experienced as a great relief in everyday life. However, side effects are also described, such as an increase in over-movement.

Lucie L.

Work for two

Related experiences

Other experiences by Lucie L.

Lucie L.