Thaddeus H.'s life has changed completely.

La vita di Thaddeus H. è cambiata completamente.

L'intera vita è diversa, ovviamente. Non possiamo più partecipare a nulla di culturale, perché lei ha dei movimenti eccessivi, la sera. Non possiamo più praticare le nostre attività sportive. Ma per ora ci troviamo bene l'uno con l'altro. Anche questo va bene. E può anche accadere che io esploda un po' nel mezzo. Ma poi mi dico: "Non è colpa di mia moglie, ma del Parkinson".

Limitazioni

La vie de Thaddeus H. a complètement changé.

Toute la vie est évidemment différente. Nous ne pouvons plus rien faire sur le plan culturel, parce qu'elle a des dyskinésies, le soir. Nous ne pouvons plus pratiquer nos activités sportives. Mais nous nous entendons bien jusqu'à présent. Ça se passe bien aussi. Et il peut aussi m'arriver d'exploser un peu de temps en temps. Mais alors je me dis après coup, "ce n'est pas à cause de ma femme, c'est à cause de la maladie de Parkinson".

Restrictions

Thaddeus H.s Leben hat sich komplett verändert.

Das ganze Leben ist natürlich anders. Wir können kulturell nichts mehr mitmachen, weil sie ja Überbewegungen hat, abends. Wir können unsere sportlichen Tätigkeiten nicht mehr ausführen. Aber wir haben es soweit eigentlich gut miteinander. Das geht auch gut. Und es kann auch vorkommen, dass ich zwischendurch ein wenig explodiere. Aber dann sage ich nachher zu mir, "das ist nicht wegen meiner Frau, sondern wegen dem Parkinson."

Einschränkungen

Yolanda

The whole life is different, of course. We can't take part in anything culturally any more, because she has over-movements, in the evening. We can no longer do our sport activities. But we're actually fine with each other so far. That goes well too. And it can also happen that I explode a little in between. But then I say to myself afterwards, "that's not because of my wife, but because of the Parkinson's."

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

Thaddeus H. reports that family cohesion has become even stronger.

Thaddeus H.: For me it has always been a great concern that we are a community, our family. And that is even stronger now.
Interviewer: That's very nice.
Thaddeus H.: Even stronger. And my daughters - one lives down there - she has a little son. And she should look after her family and have time for us now and then. But we know that we would have help from her. But we don't need it at the moment. And the other one lives in Canton F [Canton], which is further away. [...] But we talk on the phone and so on, so they are quite involved in the illness.

Cohesion

The diagnosis of Parkinson's affects many areas of life and also influences life and everyday life in the family. Despite the many restrictions and burdens that the disease usually brings with it, it is also reported that the cohesion and closeness within the family have increased due to the diagnosis. The physical proximity of other relatives is equally important and relieving for those affected and family members providing care. Depending on when the disease breaks out and whether or not there are children or grandchildren, other challenges arise (e.g. care, explaining the disease).

Family life

Thaddeus H.'s wife takes eight different medicines throughout the day.

Thaddeus H.: Eight medications.
Interviewer: Eight different tablets.
Thaddeus H.: Yes, throughout the whole day. And that was just – 
Interviewer: – too much. 
Thaddeus H.: Way too much.

Too many pills

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

Decisive for Thaddeus H. and his wife is that the treatment with the Duodopa® pump can be stopped at any time and its lower invasiveness compared to deep brain stimulation.

Thaddeus H.: For me, that was also an important indication that you can stop the Duodopa® pump at any time.
Interviewer: But then you both had more or less the same opinion about deep stimulation?
Alma H.: [in the negative].
Interviewer: Was it also a problem for you that there was something in the head?
[...]
Thaddeus H.: Yes, only in the end she has to decide.
Interviewer: Yes, of course.
Thaddeus H.: It's her body, not mine.
Interviewer: Yes, of course.
Thaddeus H.: It's her body.

Invasiveness

Medical reasons for treatment with the Duodopa® pump are usually related to a decrease in the effect of the medication taken and are based on a doctor's recommendation. Among the personal reasons for deciding on treatment with the Duodopa® pump, patients and relatives also draw comparisons with deep brain stimulation. The less invasive nature of treatment with the Duodopa® pump also plays a decisive role here.

Decision making

Thaddeus H. reports that Alma is coping well with the pump.

Thaddeus H.: You have a medicine and you can get a grip on it [...]and without side effects! So side effects are over-movements, but organically she doesn't notice anything at all.
Interviewer: And it is also an alternative to deep brain stimulation.
Thaddeus H.: Yes. That is also a big advantage, organically she doesn't notice anything at all, stomach or kidneys and so on. By the way, she is otherwise in perfect health, [there is] absolutely nothing wrong with her, [the] blood count, everything is fine, couldn't be better.

No side effects

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.

Living with the Duodopa® pump

Thaddeus H. finds it difficult to adjust the pump.

Thaddeus H.: The setting is very, very difficult.
Interviewer: Okay. What do you mean by that?
Thaddeus H.: I make protocols, write down every day exactly. You can't keep that in your head. And Mr A [name] is our doctor. He gives us a free hand in varying the amount and the time and so on. And he can only make recommendations to us and say, "try it once." I also realise that, every Parkinson's is different.
Interviewer: Yes, that's true.
Thaddeus H.: Every person reacts differently. That is very, very difficult. But that is also [the case] with these medicines. [...] In this respect it probably makes no difference. But we can do that ourselves. And I am always on site with the woman and then I can react at short notice.
[...]
Thaddeus H.: I have to say, [...] I have been doing the protocols for about six weeks now.
Interviewer: Ah, [...] okay.
Thaddeus H.: Yes, and I haven't [found] the right attitude yet, still not.

Setting

The operation of the Duodopa® pump is carried out by the patient or caregivers, depending on the possibility and the patient's condition. A cassette with Duodopa® (levodopa-carbidopa gel) is connected to the pump device in the morning. The flow rate of the continuously administered dose, the infusion duration throughout the day and the dose of the extra doses can be individually set and adjusted. Finding the optimal setting can be a challenging task, especially for relatives. In order to avoid inflammation, the tube leading to the pump must be cleaned (rinsed) regularly. This is also done either by relatives or by the patients themselves, depending on their possibilities and condition. The pump itself is also perceived as annoying due to its size and weight, but it is also reported that this is a matter of getting used to it.

The device

Thaddeus H. takes over the cleaning of the probe from Alma H.

Interviewer: And this treatment, so with the pump, does it need a lot of care?
Thaddeus H.: E: The pump itself?
Interviewer: Yes, because you have to clean it every day.
Thaddeus H.: E: No, no.
Interviewer: No, so you don't have to.
[...]
Thaddeus H.: That's not work. I have to flush this hose with the pump.
Interviewer: Yes.
Thaddeus H.: Two here, two here. But that's once a day. That's no work at all.
[...]
Interviewer: So for you it is not a burden?
Thaddeus H.: No.

Cleaning

Thaddeus H.'s wife smokes hemp for psychological reasons.

Thaddeus H.: She smokes hemp, hemp plants.
Interviewer: I see.
Thaddeus H.: Smoking is what you do.
Interviewer: Oh, yes, sure. [...] And she still takes that?
Thaddeus H.: Yes, every morning, every evening. [...] And that helps her. It's not a psychotropic drug, but it's for the psyche and has no side effects. [...] That's good.

Hemp

In the search for ways to alleviate the symptoms of Parkinson's disease, those affected also report various complementary medicine treatments. The effects of these are described as lacking to slight (e.g. acupuncture).

Thaddeus H.

Restrictions

Video Interview

Related experiences

Other experiences by Thaddeus H.

Thaddeus H.