Pierro L.: Ero stanco, io sono sempre stanco adesso. Mi sembra sempre di aver fatto molto, anche se non ho fatto nulla.    
Intervistatore: E da quando hai la impressione di sentirti sempre stanco?
Pierro L.: Forse…per 10 anni…?

Fatica

Pierro L. : J'étais fatigué, je suis toujours fatigué maintenant. De plus, il semble que j'ai toujours fait je ne sais quoi et ensuite je n'ai rien fait. 
Intervieweuse : Et depuis quand avez-vous cette impression que vous vous sentez toujours fatigué ?
Pierro L. : Peut-être...si ça fait 10 ans... ?

Fatigue

Pierro L.: Ich war müde, ich bin jetzt immer müde. Ausserdem kommt es mir immer so vor, als hätte ich vieles getan, obwohl ich nichts getan habe. 
Interviewerin: Und seit wann haben Sie den Eindruck, dass Sie sich immer müde fühlen?   
Pierro L.: Vielleicht... seit 10 Jahren...?

Müdigkeit

Yolanda

Pierro L.:  I was tired, I'm always tired now. It seems as if I have done a lot, even though I have done nothing.
Interviewer: And since when do you feel like you are always tired?   
Peirro L.: Maybe…since 10 years...?

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

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

Pierro L. thinks it is good that the doctor took the time to talk to him about the diagnosis. He does not yet realize at this point what this disease, which was previously unknown to him, means.

Pierro L.: And we were walking back and forth and then he said, "You have Parkinson's." I liked that and I said, "Well, what is Parkinson's?" And after that he told me lots of stories, he took his time and did it well, but the hardest part was that I had to come home to the doctor and tell my wife that I had Parkinson's. And that was difficult...   
Interviewer: And how did you take the diagnosis? What was your impression of that moment?   
Pierro L.: At that moment I didn't think about it so much because I didn't know if I was sleeping, dreaming or if it was true. I mean, I took it easy, didn't I?

Taking time to explain

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

For Pierro L. it is a great loss that he can no longer write by hand.

But I for one have lost, I can't write anymore. I no longer have a sense of the pen-to-paper works. That is a symbol that I have lost so much, and you lose so much in your life when you can no longer write.

Fine motor skills

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

Pierro L.'s circle of friends has changed.

I think one problem is isolation. You lose all the friends you had. In twenty years I lost many friends. Now many have died. But I lost a lot of them. Then also the relationships with... No, with the family more or less with the daughters and with the wife more or less. We have managed it.

Feeling isolated

The symptoms of Parkinson's disease affect many areas of life. Being confronted with one's own changes can be stressful and difficult. Affected people report, for example, impatience with themselves or anger when they notice that things are no longer possible at the desired pace. Feelings of shame due to the visibility of symptoms are also mentioned. Those affected also feel isolated, for example because contact with former work colleagues no longer exists. Problematic behavioural changes also include impulse control disorders, which can occur in patients with PD (e.g. as a side effect of medication). Among other things, these can lead to substance abuse (e.g. alcohol consumption), which can also cause particular psychological stress for relatives.

Burdens and Difficulties

Pierro L. has reduced his workload to 50 %.

Pierro L.: And he said to me: "Mr. L [name], you will no longer work, you will no longer have these problems, until the end, until you die... this problem is solved. From tomorrow on you will not work any more."
Interviewer: When did that happen?
Woman: In 1999 because he was incapacitated on January 1, 2000. So that was a little bit earlier. He worked 50 % for two years.

Reduction of the workload

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

Pierro L. no longer has any relations with his former work colleagues.

For example I don't know, if certain friends would still come to see me I would be happy. About the job: I used to do a good job, I was a qualified federal officer, and yet there is no relationship left and I don't go to the city anymore anyway and the opportunities are gone.

Changing relationships

Depending on how Pierro L. is doing, he or Lucie L. takes care of the operation of the pump.

Because you have to put the tapes in, don't you? Every day the...  
Woman: Yes yes yes.  
Interviewer: And do you do that or does your wife do that?  
Pierro L.: If I don't have those medicines, I can't do anything!  
Interviewer: That's your job isn't it?  
Woman: No but he does it too....  
Interviewer: He does it too.  
Woman: No no no, it depends like in the evening if eh I don't know... normally he does it. Last night he was asleep, I go to bed, I take him, I did rinse and he has to take the pills and... but otherwise if he's awake, if he's well he does it.  
Pierro L.: Yes yes.  
Woman: But sometimes "Eh come, I can't" and it depends...

Operation

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

Pierro L. usually does not hear the alarm sound of the pump when the battery is empty.

Pierro L.: There is sound. I don't hear it because the batteries last a day, right? One week.  
Interviewer: A week for the battery?
Pierro L.: One week. And then at the end there is a whistle, no? An alarm, but I don't hear it.  
Interviewer: You don't hear it.  
Woman: Eh it should be kind of like a phone so that you can change the sound. Because if there is an alarm he doesn't hear it. And yesterday when I got home there was an alarm, he was sleeping and he didn't hear it.

Difficulties

Pierro L. finds the pump unwieldy because of its size.

Interviewer: And do you think the the pump is very big, or not?  
Pierro L.: Yes yes it should be smaller, a little box. It should be enough.  
Interviewer: If I'm honest with you the first time I saw it I thought it was like a walky talky.   
Woman: Yes, yes 50 years ago!
Pierro L.: There's a whole system for the outdoors that can be powered by 220 power. But here it's not possible, I still can't walk around with a 220 transformer.  
Interviewer: I understand that it is difficult. Are you under the impression that there are movements that you can't do now for the pump or not?  
Pierro L.: No, no, I can do it now.

Pierro L.

Fatigue

Related experiences

Other experiences by Pierro L.

Pierro L.