Mariella C. uses her phone as a reminder to take her medication.

Mariella C. usa il suo telefono come promemoria per prendere le medicine.

Intervistatore: Oh, il suo telefono.
Urs C.: Farmaci.
Intervistatore: Ah, le medicine.
Urs C.: Sì, farmaci.

Promemoria

Mariella C. utilise son téléphone comme aide-mémoire pour la prise de ses médicaments.

Intervieweuse : Oh, votre téléphone.
Urs C. : Les médicaments.
Intervieweuse : Ah, les médicaments.
Urs C. : Oui, des médicaments.

Aide-mémoire

Mariella C. nutzt ihr Telefon als Erinnerungshilfe für die Medikamenteneinnahme.

Interviewerin: Oh, Ihr Telefon. 
Urs C.: Medikamente. 
Interviewerin: Ah, die Medikamente. 
Urs C.: Ja, Medikamente.

Erinnerungshilfen

Yolanda

Interviewer: Oh, your telephone.
Urs C.: Medication.
Interviewer: Ah, the medication.
Urs C.: Yes, medication.

Reminders

In Parkinson's disease, the time at which the medication is taken plays a central role, as its effect also depends on this. Depending on the group of medications, they should, for example, be taken with a certain time interval before or after a meal (e.g. levodopa) or with a meal (e.g. dopamine antagonists). If the medication is taken at the wrong time, this can lead to an intensification of the symptoms. Those affected report their experiences in this regard and talk about what helps them not to forget to take the medication.

Drug management

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

Mariella C. does not believe the neurologist when he tells her that she has Parkinson's disease.

That started already 23 years ago. And at the beginning it was a little unclear, like most of the time, right? And I trembled a little, but only with the thumb first, on the right hand. And what I also noticed then, I couldn't do as many things at the same time as I used to. Something went through the bars. And that's what I noticed. I didn't know why. And then after about two years, I went to a neurologist once and he said, "Yeah, tremors, that could be 100 different things. It doesn't have to be Parkinson's." Then I was reassured again and then I waited again for two years. Then I went to another neurologist. It was a little worse then. He just told me, "You have Parkinson's," without explaining anything. Then I was so angry at him and thought, "Oh, he doesn't know that either," and then I didn't really notice it.

Loss of trust

The diagnosis of Parkinson's disease is made on the basis of the neurological examination findings and, if necessary, by means of imaging procedures (e.g. SPECT). A positive L-dopa test also indicates a typical Parkinson's disease. For those affected, the path from noticing the first signs to an official diagnosis of Parkinson's varies. Although, according to the literature, the first formulated diagnosis is correct in the majority of cases, patients and relatives in the early stages of the disease also report medical misjudgements, misdiagnoses and mistreatments. A prolonged uncertainty about the cause of the symptoms is experienced as difficult and the receipt of the diagnosis of PD on the one hand as devastating, but on the other hand also as a relief that there is clarity. Disputes with cost units about the assumption of diagnostic examinations are also reported.

The path to diagnosis

For Mariella C., the overmovements are very discomforting.

Mariella C.: I had overmovements, that was actually the reason why I really wanted to operate. You know, when you can't sit still like that anymore. I do have that again right now, overmovements. But it wasn't so funny anymore. [...] And yes, it also bothers you when you're sitting somewhere and you can't sit still. [...]

Interviewer: It's very tiring, isn't it? 

Mariella C.: Yes, it is tiring, that's true, yes.

Overmovements

The motor symptoms of Parkinson's disease include a slowing of movements, which can be noticeable in all parts of the body (e.g. legs, arms and hands, face). Sufferers report how the pace of walking decreases and how, later in the course, sudden blockages occur that also lead to falls. In addition to tremors, muscle stiffness is another symptom that sufferers and relatives describe, which is painful and can also intensify depending on the situation, for example during stress. Those affected also report over-movements in the advanced stages, which are particularly unpleasant for some.

Motor symptoms

Since bicycle falls have become more frequent, Mariella C. has switched to a tricycle.

It was slow, fortunately. There are people who have all the ills at once or already at the beginning, falls and [so on]. But I was still able to hike and go on vacation and ride my bike for a long time. Actually, until two years ago, I always rode my bike. [...] It just got a little bit worse from year to year. So maybe two, three years ago [it started with the more severe symptoms]. Sometimes it was a little better again and then a little worse. But I have a tricycle now, so with three wheels a bicycle. 

[...]

And I had to have it, I often fell down with the two-wheeler. And that was two years ago, when I thought it was too dangerous. 

[...]

It's more comfortable, of course, you can't fall down so easily.

Increasing falls

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

Travelling has become difficult for Mariella C..

Interviewer: Do you feel that Parkinson's disease has changed your life?

Mariella C.: Yes, yes, yes. Yes, you can't do as much as before. I like to travel, I like to go on holiday. But that's sometimes difficult now. Otherwise I don't really like going to Mexico any more.

Interviewer: Yes, the long flights are a bit unpleasant.

E: Yes, and it's also dangerous.

Travel

People with Parkinson's disease often experience restrictions in their usual activities as the disease progresses. Depending on the progression of the symptoms, some things, for example, can only be done slowly, no longer to the usual extent (e.g. sport, work, social contacts) or not at all, or no longer without help (e.g. writing by hand, getting dressed). Accepting the changes in everyday life is not always easy and is sometimes accompanied by feelings of missing and loss.

Limitations

For Mariella C., it is difficult that she often cannot implement things she sets out to do because she is too tired.

Yes, sometimes you are very tired and can't do anything is difficult. You don't feel like doing anything anymore. That is actually the worst thing. You think, "tomorrow I'll do this and that" and then you just can't do anything. Then you just sit at home and wait for it to get better again.

Abandon plans

Mariella C. receives a lot of support from the public.

I'm always surprised how nice people are, on the train and everywhere, when I go somewhere with my walker or with canes, they always help me. Yes, that actually surprised me in a positive way. I always thought, "people don't care", but they do care.

Helpfulness

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

Being awake during the operation caused Mariella C. anxiety.

Interviewer: What fears did you have before the procedure?
Mariella C.: That I was awake. And in general, that something happens in the brain. The brain is quite [...] important, isn't it?

Awake brain surgery

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).

Mariella C.

Reminders

Video Interview

Related experiences

Other experiences by Mariella C.

Mariella C.