For Filippo F. it is important not to feel alone with his difficulties.

Per Filippo F. è importante non sentirsi solo con le sue difficoltà.

Filippo F.: C'è una persona perché il venerdì vado a un corso di fisioterapia qui a F [località], in modo da non sono scollegarmi troppo dal mondo. Poi ci sono anche una o due persone che hanno la mia stessa stanchezza. Loro dicono ma è terribile, la gente non può immaginare, ma non c'è niente da fare. E poi, come il venerdì, vado [...] in G [località] che è un centro per il Parkinson e lì discutiamo con gli altri, si impara molto.
Intervistatore: E voi andate sempre in questo centro ogni settimana?
Filippo F.: Ogni venerdì.

Sentirsi compresi

Pour Filippo F., il est important de ne pas se sentir seul face à ses difficultés.

Filippo F. : Il y a une personne parce que le vendredi ici à F [lieu] je vais à un cours physio pour ne pas être déconnecté du monde. Alors là-bas il y a aussi une personne ou deux qui ont la même fatigue que moi. Ils disent mais c'est horrible, les gens n'arrivent pas à imaginer, mais on peut pas faire quoi que ce soit. Et puis comme le vendredi je vais [...] à G  [lieu] que c'est un centre pour les parkinsoniens et là on discutait avec les autres, on apprend pas mal de choses.
Intervieweuse : Et vous allez tout le temps dans ce centre chaque semaine ?
Filippo F. : Tous les vendredis.

Se sentir compris

Für Filippo F. ist es wichtig, sich nicht allein mit seinen Schwierigkeiten zu fühlen.

Filippo F.: Es gibt eine Person, weil ich am Freitag hier in F [Ort] zu einem Physiokurs gehe, damit ich nicht von der Welt abgekoppelt bin. Dann gibt es dort auch eine Person oder zwei, die die gleiche Müdigkeit haben wie ich. Sie sagen, aber es ist schrecklich, die Leute können sich das nicht vorstellen, aber wir können nichts tun. Und dann, wie am Freitag gehe ich [...] nach G [Ort], dass das ein Zentrum für Parkinson ist und dort haben wir mit den anderen diskutiert, man lernt ziemlich viel.
Interviewerin: Und Sie gehen jede Woche in dieses Zentrum?
Filippo F.: Jeden Freitag.

Sich verstanden fühlen

Corine

Filippo F.: There is one person because I go to a physiotherapy course here in F [place] on Friday so that I'm not disconnected from the world. Then there's also a person or two there who have the same fatigue as me. They say, but it's terrible, people can't imagine, but there's nothing we can do. And then like on Friday I go [...] to G [place] that's a center for Parkinson's and there we discussed with others, you learn quite a lot.
Interviewer: And you go to this center every week?
Filippo F.: Every Friday.

Feeling understood

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

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

Yolanda

After his history with a stroke, Filippo F. expresses skepticism about whether the diagnosis of Parkinson's is correct.

So, when I was there, I said, "Look, I have a shaking hand, can that be from my stroke?" So they called the neurologist and the neurologist told me "there, that's Parkinson's disease." And then I asked him "but how do you know it's Parkinson's since we haven't tried anything?" And then they told me "but what do you think we are doing studies for?" So that's all I can say about the diagnosis of this disease.

Expressing skepticism

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

Filippo F. has no other complaints besides tremors for a long time.

Interviewer:  How did it start? Do you remember that?   
Fillipo F.: Yes very kindly, for ten years, apart from the right hand shaking a bit, I didn't have anything else. About ten years, yes. Otherwise it was fine.

Trembling

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

Interviewer: What about hallucinations, can you explain?  
Fillipo F.: It's nothing serious, there are no monsters, there's nothing, I can see sand flowing from anywhere, but in closed circuit, it never stops. I can see it, while I'm sitting on an armchair at home. Or I see a black dog under the table in the hospital. That's where there must be a concentration of hallucinations from everybody. The doctors who came to see me when I first had these hallucinations, they had spaghetti hanging out. I don't know why I had that, but fortunately I never paid much attention to that. 
While I had the hallucinations, I didn't want to stay here alone anymore. First of all because I was afraid of [...] even if I didn't believe it, we know that it's the brain that makes it, but I didn't want to stay because I could fall at the time. I walked badly and everything, so I didn't want to stay alone.

Hallucinations

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

Interviewer: And how did people live with your illness?
Filippo F.: But nobody knew that I had it.
Interviewer: You didn't tell them?
Filippo F.: No. 
Interviewer: Not even your boss? 
Filippo F.: No, no. I retired myself.

Concealment of the disease

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

Filippo F. no longer leaves the house without an escort.

Filippo F.: It's about being free and being able to go wherever you want.
Interviewer: And what about that? 
Filippo F.: Well, I never go out without my wife or someone else like my niece the other day. There has to be someone there who knows me for who I am, because if it's someone who's never picked me up or anything, then I can't be trusted.

Leaving the house alone

Due to the motor and non-motor symptoms of Parkinson's disease, affected people need support in their everyday activities as the disease progresses. The extent to which people with Parkinson's disease still feel self-determined varies. The topic of mobility, whether in the form of being able to drive a car or to leave the house alone, is central here. This also includes the ability to implement one's own plans and to "do things alone".

Self-determination

Filippo F. is sometimes afraid that the electrodes will switch off.

Interviewer: Do you often think about the fact that you have electrodes in your brain, a device?
Filippo F.: Yes, because I always have to think about where I'm going so that I don't disconnect them.

Fears

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.

Filippo F.

Feeling understood

Related experiences

Other experiences by Filippo F.

Filippo F.