Corinne L.'s family was disappointed because not everything was well again.

La famiglia di Corinne L. era delusa perché non tutto andava di nuovo bene.

Pensava che "dopo l'operazione starò bene", e ora deve fare i conti con il fatto che non tutto è così brillante. Anche suo padre è un po' deluso. Dopo l'operazione, una volta ha chiesto: "Sì, deve tornare al lavoro se sta così bene? E poi mio figlio ha detto "Sì, guardala".

Delusione

La famille de Corinne L. était déçue, car tout n'était pas rentré dans l'ordre.

Elle pensait que "tout irait bien après l'opération", et maintenant elle doit se faire à l'idée que tout n'est pas si éblouissant. Le père aussi est un peu déçu. Après l'opération, il a aussi demandé une fois "oui, doit-elle reprendre le travail après, si elle va si bien ?". Et mon fils a alors répondu "oui, regarde-la".

Déception

Corinne L.s Familie war enttäuscht, da nicht alles wieder gut war.

Sie hat gedacht "nach der Operation gehts mir blendend", und jetzt muss sie das verkraften, dass nicht alles so blendend ist. Auch der Vater ist etwas enttäuscht. Nach der Operation hat er auch einmal gefragt "ja, muss sie denn nachher wieder arbeiten, wenn es ihr so gut geht?" Und mein Sohn sagte dann "ja schau Sie [doch] einmal an".

Enttäuschung

Yolanda

She thought "I'll be fine after the operation", and now she has to cope with the fact that not everything is so brilliant. Her father is also a little disappointed. After the operation he once asked "yes, does she have to go back to work if she's doing so well? And then my son said "yes, look at her".

Disappointment

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

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

Corinne L. is struck by the forgetfulness of her daughter-in-law, given her young age.

She just has trouble. She forgets a lot. She can tell you one day, and the next day she doesn't remember. She picks up a phone call, she's supposed to write it down right away, and she may not have a pencil or a sheet in front of her, and afterwards she doesn't remember. So, I'm sometimes afraid it goes against dementia because she's so young.

Forgetfulness

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

Corinne L. nervously waits for news from the operating theatre.

I was shaking of course until finally the phone rang, my son got the call. He first asked the neurosurgeon if she could speak, because my son was so afraid, because they did it on both sides, that it could be too close to the speech centre. And they know that. And the surgeon said "yes, of course she can speak." "Have you already spoken to her?" was the second question he asked. He said "yes, I have just been to see Mrs [name] I have spoken to her." "Did she speak clearly?", "yes, we had a normal conversation together." Then he was very happy and I was happy too, because I knew a lot can happen.

Waiting for message

The surgical procedure to implant the electrodes in the brain as well as the pacemaker in the upper part of the body usually takes between five to six hours and is partly done while the patient is awake. Some centres perform the surgery as a two-stage procedure, where the stimulator itself is implanted in a second surgery. Those affected remember certain situations and impressions during this part of the operation (e.g. being asked to count out loud; noises), some of which were unpleasant (e.g. having a steel ring put on; jaw clenched). Relatives report that the time of waiting until the operation is over is nerve-wracking for them and the relief is great when it is over. For relatives, the first sight of the newly operated person can also be frightening, as the external appearance of the head has changed (e.g. shaved skull).

Corinne L.

Disappointment

Video Interview

Related experiences

Other experiences by Corinne L.

Corinne L.